Inspired by Change4ME Au’s Good Day/Bad Day series, I thought I would take good day/bad day shots of my own. So here is a little look at each, although as with almost everything in ME/CFS, it’s more complicated than it might seem.
A good day: This photo of me, Chimp, my mom and stepdad, was taken in December of last year, during a short visit they paid us. When my mom comes to visit, she stays at the house, but when it’s the two of them, they get a hotel, because the added noise is over my threshold of tolerance. I need to have been doing relatively well (no sleep problems) in the weeks before they arrive in order for a visit to be possible. While they’re here, they often do stuff around the house that Chimp hasn’t been able to get to, and I need energy to deal with that happening as well.
I do like to take a picture when we have visitors if at all possible, but it’s not as simple as sitting down and pressing a button.
Because I am a bit insecure about how I look without makeup (due to very thin, pale skin I have pronounced under-eye circles; I used to wear makeup everywhere including to the grocery store), I have to put some slap on before we have our photo session. Because I’m out of practice, it takes a long time, and because I have to sit up to do it, takes a chunk of energy. Furthermore, the makeup itself actually makes me tired. I have played around with using or not using several products – I had to give up my MAC foundation entirely, because it was especially problematic in that regard, but even just a little Dermablend, powder, and pencil has its fatiguing effects. For pictures, I typically brush my hair and pin it up somehow – I wouldn’t quite call it “styling” it, because any positive aesthetic appearance it has beyond a couple of barrettes is just the result of rolling it into a bun while it’s damp.
Then I have to use the cognitive energy to decide if I want to change into something like an Actual Top (I never bother with Actual Pants – too draining), the physical energy to get it and change into it, the physical energy to deal with the pressure of a garment that is closer to my skin than my usual loose-fitting t-shirt, and the cognitive energy to tell my body to try to stop noticing that I’m wearing something close-fitting.
Next is the actual photo, which involves walking out to the living room or kitchen, and sitting up – not just sitting up, but sitting up with good posture so I don’t look like a lump, which is rather taxing when you don’t use those muscles much. We do several rounds so we are more likely to get something we’ll all be happy with.
Once the photo is taken, I have to wash my makeup off and get out of my dress-up clothes. At that point I’m usually feeling that all-over burning pain that indicates I’ve overdone it and crossed over into what I call “fried.” It feels…crispy. I don’t seem to be able to manage a picture without it happening.
Thus, a photo session like this usually costs me about three days of worse function. So the picture itself is deceptive. When you see me sitting up, my hair somewhat done, with makeup on like that, it would be easy to assume that those activities are a routine part of a “good” day, when in fact they’re a special effort that comes around perhaps a few times a year.
A typical good day for me involves much less activity – walking from bed to kitchen, getting my breakfast, reading on the computer lying down, maybe getting up to fetch an afternoon snack, a trip to the nearby bathroom, typing a paragraph or two, having a bath every third day, walking back to the bedroom at night and dragging a toy in front of the cats. That’s average.
On a very good day, I might add some extremely light housework, like hanging up towels, putting away my shirts and pants that Chimp has folded, feeding the cats, or cutting up some fruit at the kitchen table.
Now here’s a picture of a bad day – really beyond a bad day into a terrible day. Last summer I ate some suspect cucumbers and gave myself a lovely case of food poisoning that lasted for a couple days. I had recently seen the good day/bad day photos, so I had Chimp snap this one of me.
I wasn’t reading on the computer that day, and I certainly didn’t get up to get myself a snack. I was just trying to hold on until my system would stop flipping out. When I look at my eyes in that picture, it doesn’t look like I’m in there at all. I certainly didn’t feel like I was. It took about two weeks to recover from that bout of food poisoning.
On a more typical bad day, like one that comes along with a particularly poor run of sleep, I might walk out to the kitchen, get breakfast, read, and walk back to bed at night, with Chimp taking over all the other tasks.
So I would say that my average good day, in reality, appears physically closer to the terrible day than it does to that good day in which I’ve made myself somewhat falsely presentable once in a blue moon.
Have you taken good day/bad day pictures? What do you think of as the difference between a good day and a bad day for you?
When I realized I was dealing with a histamine intolerance, and started looking around on the web about how to treat it, I felt totally bewildered and overwhelmed. There is an enormous amount of conflicting information, and I felt bad enough, and having ME/CFS on top of histamine intolerance complicates matters such that I didn’t think it would be wise to start trying things at random. So we scheduled a phone call with Dr. Cheney. If you have simple questions, they can be answered through his assistant, but when you get into a mess like this, you really need a call. We spent about an hour on the phone with him (which you pay for), and after the call he sent this summary, based on our discussion (his text in grey, mine in black):
Jocelyn,
I would approach what sounds like a histamine release problem in the order below, perhaps a week apart. I do not know what set this off – could be spontaneous or linked to declining Gabapentin levels and increasing glutamate interactions. If Gabapentin is involved then decreasing its dose will make things worse or if decreasing its dose and adding glutamate will make things worse. This will “inflame” the brain and cause anxiety, sensory overload and panic. Magnesium and a lot of it is an acute antidote for this kind of problem.
Oxidative stress in the brain will lead to methylation block and loss of SAM and then oxidation of monamines including histamine by MAO occurs which creates more oxidative stress and more methylation block until monoamine synthesis is drastically reduced at which point their receptors will expand dramatically and you are now have a histamine release problem. When I measured blood histamine in CFS cases with this problem, blood histamine was very low and therefore you become sensitive to one molecule of histamine via the dramatically expanded histamine receptors.
Avoid P5P or B6 as this directly increases histamine.
1) Anti-histamines — Try chlorpheniramine (H-1 Blocker – CVS OTC) at 4 mg QID plus Cimetidine (H-2 Blocker – CVS OTC) at 200-300 mg QID and add Cromolyn Sodium at 2 x 100 mg capsules poured into water and swallowed 30 minutes before eating QID. Continue Seroquel and Doxepin at your present doses as both are antihistamines.
2) Anti-oxidants/anti-inflammatories – Hawthorn (SOD inducer) (from Mediherb – call Dixie to order) at 2 tabs BID along with Brazil Nuts (GPx inducer) (get from health food store bins – pre-shelled) at 2-3 BID. Also use good grade olive oil (Colavita) at 1-2 tbsp per day. Consider wormwood elixir at 1 cap in water Swish and Spit BID and/or anatabloc (GNC) at 3 BID for NF Kappa B inhibition. Also consider bioavailable Turmeric at 1 cap BID and always take Turmeric with olive oil to improve bioavailability (health food store). Use alpha-Lipoic Acid at 200-400 mg/day (health food store).
3) Stimulate the methylation cycle which can help long term but be a short term problem as it paradoxically can increase histamine production but this will reduce the histamine receptor density over time. I think blocking the methylation cycle via oxidative stress caused the histamine receptor up-regulation in the first place but not sure why this happened. Use SAMe and BID hydroxy-B12 at 0.3 cc’s SQ and folapro at 800 mcg QD. Do this last and cross your fingers as it can go either way.
4) Another thought is to add colostrum from (Kirkman’s labs – Oregon) at one Tbsp in yogurt or kefir (4 oz) per day. Colostrum is a oral immune regulator in the gut and might help a lot if you can tolerate it.Let me know if you need scripts and give me a pharmacy number and I will call it in tomorrow.
PRC
I sent him some questions:
Dr. Cheney,
Thank you for the email. I will get started on this today. I have some questions, please: First of all, I started playing around with the Histame (DAO) this morning and it is extremely calming even at minute doses. I think this is how normal people react to tranquilizers. This leads me to believe that there is a problem with my DAO production. How could I best support that? Does DAO benefitting me change what you think I should do?
Why the choice of chlorpheniramine instead of the fexofenadine you mentioned on the phone?
I am taking 4 magnesium chloride tablets a day (b/c I don’t tolerate mag sulfate). The bottle tells me that is 2080 mg of mag chloride/248.68 mg of elemental magnesium. How much can I increase that safely?
We didn’t get to discuss whether the methyl group in LDN is a problem in this situation. Is it?
I think I may forego the cimetidine, as that very helpful article I read this past weekend said, “Most antihistamines have no influence on DAO activity, although inhibition of DAO by cimetidine and dihydralazine and increased activity by diphenhydramine have been observed (97).”
I checked and Seroquel is an H1 blocker; doxepin appears to be an H1 and H2 blocker.
Sincerely,
Jocelyn
His response:
Jocelyn,
It is interesting that Histame (a DAO enzyme that destroys Histamine) is similar to MAO (monamine oxidase) that destroys histamine metabolites in the brain as well as other monoamines and thereby produces hydrogen peroxide as a constituent by-product that will increase oxidative stress and places pressure on GPx which depends on GSH (glutathione) production which you are deficient in.
With the loss of methylation via methylation block, the only metabolic pathway remaining for histamine is MAO or DAO. MAO resides on the surface of mitochondria and [is] subject to oxidative destruction if superoxide reduction to water is impaired which is the case in CFS and increases MAO’s oxidative destruction. As monoamime metabolism down-regulates in response to MAO or DAO induction of oxidative stress, then the monoamine receptors up-regulate and you get increased sensitivity to histamine (aka food histamine sensitivity). Perhaps the use of Histamine helps restore a relative reactivity balance and reduces overall oxidative stress and that will lead to a calming of the CNS.
I have no problem with you using Histame before meals to suppress the effects of histamine whether that effect is due to activation of MAO or the activation of the histamine receptors which may be in excess. I do note that endogenous DAO is stimulated in different ways in regards to types of foods. Protein increases intraluminal DAO with more local GI effects and lipids increases DAO in the enteric lymphatics and therefore has a more systemic effect at a distance. It might be instructive to note which foods make you worse, proteins or lipids.
2) You can use either chlorpheniramine or fexofenadine. I chose the former because it along with cimetidine were as effective a chromolyn sodium in stopping food based histamine reactions.3) Magnesium tablets do very little to help the brain as the GI absorption of tablets is slower than the reactive kidney excretion of magnesium so there is no net improvement in intracellular magnesium with oral magnesium which is continually leaking out of cells due to low cellular energetics. Only parenteral magnesium will impact intracellular magnesium positively and only for a short time (1-4 hours – 1 hour for SL magnesium spray and 4 hours for SQ injections and 2 hours for skin creams). Intolerance of magnesium sulfate is likely due to reduced glutathione or GSH depletion which is at the core of your illness. Sulfate is like oxygen and capable of producing oxidative stress from reactive sulfate molecules which can be reduced by the action of reduced glutathione (GSH). 4.5 billion years ago, life-forms used the electrons from sulfur instead of oxygen to produce energy and created the same oxidative stress that oxygen does today in mitochondrial redox reactions.4) I doubt that low dose LDN is a problem from the standpoint of its methyl group. The problem with LDN is that it blocks the endorphin receptor and that can be a problem, especially at higher doses.
5) Be careful about deducing clinical significance from the fact that cimetidine seems to reduce DAO activity. Blocking histamine receptors creates compensatory, negative feedback down-regulation of histamine if histamine rises too much and that will feed into a DAO down-regulation as the system moves to a lower histamine level. These systems are very dynamic and blocking one outlet yields a compensatory down-regulation or else the system is placed into a positive feedback loop and that is inherently unstable. One can see this effect as a given anti-histamine use eventually fails over time and one sees tachyphylaxis forcing the movement to another anti-histamine.
6) I do not believe there is such a thing as a perfectly selective H1, H2 or H3 blocker. There is only “somewhat more” selectivity for one receptor (H1, H2, H3) over another. Typically the selectivity is completely lost at higher doses of a selective anti-histamine.
PRC
Still more questions:
Thank you so much, Dr. Cheney. Last question (I think): Any thoughts on quercetin?
Sincerely, Jocelyn
His answer:
Jocelyn,
I like Quercetin. It is a natural anti-histamine. More importantly, it is a bioflavonoid that is a potent anti-oxidant. If you think of anti-inflammation and anti-oxidation as two sides of the same coin, then pro-inflammatory is also pro-oxidation. If you cannot control the redox state, you cannot control the state of inflammation and histamine release is at the cutting edge of inflammation as it allows inflammatory cytokines to egress the blood stream into the tissues.The new NQ-MRI technology is showing that parts of the brains of CFS cases have micro-edema and are partially swollen. This is likely characterized clinically as H/A [headache] and emotional swings and anxiety. It is highly likely that histamine release in the brain is involved with this micro-edema. Note that anti-oxidants are a core treatment of this as well as anti-inflammatory agents. Bioflavanoids and polyphenols serve both as potent anti-inflammatories and anti-oxidants and are very potent.
My response:
Thanks once again, Dr. Cheney. I skipped my b12 yesterday and today and it may be helping. Can’t be certain yet, but I feel less fragile and on edge so far today.
His answer:
Jocelyn,
I have seen B-12 induce histamine in several patients with histamine release signs. It is a rare reaction but suggests complex biochemistry involving the methylation cycle and transulfuration pathway. As you support the methylation pathway with B-12, you reduce glutathione production via the transulfuration pathway (methionine to cysteine to glutathione). This most likely happens when you are very glutathione deficient and sensitivity to magnesium sulfate suggests that you are. Glutathione deficiency means you are at risk for pro-oxidantion and pro-inflammatory events (aka histamine induction). The key to glutathione sufficiency is sufficient cysteine and NADPH. Un-denatured Whey protein (Immunopro) is the best and safest form of cysteine and NADPH is induced by MTF, DHEA and pure glucose but not fructose. VIP also induces NADPH. D-Ribose and Fructose inhibit NADPH. CAT paste and increased sympathetic tone (anxiety/stress) also inhibit NADPH. Sleep and meditation increase NADPH.
PRC
My response:
Dr. Cheney,
Interesting. As I mentioned on the phone, I wasn’t able to tolerate the ImmunoPro when I tried to switch from Xymogen’s i5 to it a few weeks ago. Terrible headache, crushing feeling. I think I will have to get the histamine receptors to calm down a little first before trying to bring it back on board. Remember that my urinary sulfite also tested very high last fall, which you said was indication of low reduced glutathione. I wish I could do VIP but I just don’t have the capacity for the two dozen blood tests needed. I can only give a tube every couple weeks at best, and even that costs me function. I was hoping to space them out over this year, but I’ve been up and down enough that I haven’t made it happen.
Sincerely,
Jocelyn
His answer:
Jocelyn,
I agree on the VIP delay. We are still learning about VIP use.Interesting that ImmunoPro made things worse as you may recall that protein induces intestinal DAO and more GI symptoms could come from DAO itself if histamine is induced as DAO likely increases oxidative stress via its “oxidation” of histamine producing hydrogen peroxide which can provoke a cytokine storm in the gut. Another possibility is that with low DAO you cannot metabolize histamine made from the protein or induced by the undigested protein. At yet another level, CFS patients have poor digestion and this exposes the intestinal lumen to immunogenic proteins and this hardwires the intestinal dendritic cells to release cytokine storms that includes histamine.
ImmunoPro is specifically made from undigested protein (“undentured” whey) so with poor protein digestion, it could be especially a problem.If your serum VIP is zero (via ARUP labs), you will not digest protein well and everything else you have could follow. VIP also has receptors on T-regs that prevent cytokine storms and excess histamine release so with no VIP means no T-reg function and continuous cytokine storms when you eat.I would at least test for serum VIP at ARUP or at The Mayo Clinic Labs, not LabCorps or Quest. 95% of my patients have zero VIP @ < 13 pg/ml or undetectable by assay (Normal VIP is 30-60 pg/ml).
My response:
Dr. Cheney,
Oh my goodness! I just realized that the catabolic paste has accidentally fallen out of my routine! It’s been at least many weeks and possibly some months since I used it. I’ve never been off it this long since starting it. I wonder if that could be contributing to the problem? Holy cow, what a screw-up. Shall I put it back and see what happens? One other question, please: We presume my nagalase is still normal because of my course of GcMAF, so I haven’t been using MTF. Should I be? Should I try it and go by how it makes me feel?
Jocelyn
His answer:
Jocelyn,
Yes, restart CAT paste as it increased ATP generation and pretty well tolerated. Catabolism via CAT paste also increased cortisol production which has potent anti-histamine effects. The dose is 1-2 drops on forearm Q AM.
One drop of MTF to the foot twice a week at sundown is the dose. Some patients cannot tolerate that much and get a loss of energy. If that happens, reduce your dose to once a week. If you are still not tolerating MTF, discontinue.
PRC
So I was faced with trying to follow all these recommendations. I started by dropping my P5P/B6 and B12. After a while my sleep started falling apart, and acting on a hunch, I added the B12 back, and my sleep improved. I think I am “topped up” on it now, as I’m starting to have some burning pain like I did earlier in this episode, which seems to be a sign that I should probably drop it for a while. I stayed on the SAM-e for a time, because it seemed like it was helping me sleep. Eventually I tried dropping it, and I found that doing so lessened my histamine reactions. I emailed Dr. Cheney’s assistant about it:
A note to pass to Dr. Cheney, please: I had kept my Sam-e in my regimen because it seemed like it was helping me sleep, though I knew it was one of the things Dr. Cheney said could cause things to go either way. I dropped it a few days ago and my reactions to foods seem somewhat lessened and my energy may be a little better. It’s only been five days, though.
Her response:
I thought you would like to know that Dr. Cheney found this particularly interesting. He quietly thought about it for a while. He then said it was a “profound” statement. He made no additional comments or recommendations.
As far as following his other recommendations: I was already taking the wormwood. I use magnesium spray already and had Chimp make a non-alcoholic version for me to try, as alcohol is a histamine problem (have noticed some tachycardia when taking it). The alcohol version worked better than without, so I decided I would stay with that. I put the catabolic paste back into rotation.
I was able to add the Brazil nuts and olive oil without trouble. I have had a bad reaction to both alpha-lipoic acid (tachycardia) and turmeric in the past (dissociation), although the latter has historically been fine in food, where it’s cooked. However, it’s a no-go on the histamine sensitivity list, and I haven’t had an opportunity to test whether it’s now a problem for me yet.
I experimented with the chlorpheniramine and found that it made me very tired. Allegra gave me a terrible headache, just as histamine-provoking items do, as did hawthorn. I don’t really know what that means. I could try the cromolyn sodium and the cimetidine – but with the latter, I have to admit I’m too worried about it blocking DAO activity.
I experimented with very small amounts of quercetin and DAO. Quercetin made my head hurt. DAO made me feel more relaxed, but I need to evaluate it more.
The most effective, best tolerated thing I’ve found is fennel seed, which contains quercetin naturally and if I take enough, gives me a relaxed feeling and helps with pain. I’ve also played around with flax seed and found that a little bit of it makes me feel energized, but a little more makes me feel anxious. I am not sure what that means yet either.
I was able to add back in a drink powder that really helps my energy by taking it at breakfast, when I am still covered by antihistamines (from my sleeping meds). With that on board, I am not going to try the colostrum for now, because it has a similar amino acid profile to both the drink powder and ImmunoPro whey protein, and the latter went badly recently when I tried it without histamine cover (headache, crushing feeling).
I wonder – and I have no way of proving this, but it’s a definite sneaking suspicion – whether this sudden histamine sensitivity is a result of years of me creating histamine blockade in my body. I have been taking three things that are technically antihistamines (though their primary use is something else) for sleep for various periods, some of them for as long as four years. Has my body noticed that, decided there isn’t enough histamine in my system, and increased it or my sensitivity to it accordingly? Could it be my antihistamines are thus “failing” in the way that Dr. Cheney mentions above, even though I haven’t been using them for their antihistamine effect? This line of thinking has led me to the conclusion that I don’t really want to add more antihistamines to my regimen if I can control my reactions and desensitize my system with diet modification and supplements, and that has been what I’ve been attempting. If it fails, the meds are there to try.
I have changed my diet quite a bit, and am still in the process of figuring out what I can tolerate. I have lost a lot of favorite foods – tomatoes, onions, garlic, aged cheese, cilantro, citrus, various legumes, among others. I have had to add meat in order to get enough protein, but the only meat that I’ve found I can tolerate without a headache is chicken. I am still struggling to get it down every time Chimp puts it on my tray. I just don’t like animal flesh.
The last thing that’s in play at the moment is that I also have my 23andMe results in hand, which might be helpful, but I have a lot of reading to do there in order to understand them.
So that’s where I am right now. It’s a definite work in progress. My energy is a little better than it was for a while, because I’ve added that drink powder back in, but not back up to where it was before this all began. I feel a little less overwhelmed than I did, because I have a better idea of what I can eat now and continue testing new items as often as I can. Will what I’m doing successfully downregulate my histamine receptors? I can’t say, and I don’t know whether there’s any way for this to be temporary, but I am hoping by the time I need to go for my annual appointment in March that I will have a better understanding and have it more under control.
She bought it before my brother or I were born, thinking that when she had kids, it would be fun to make them bunny-shaped jello. And it probably would have been, for most kids.
The mold was made of red plastic in the shape of a crouching bunny, with its head tucked between its forepaws. I remember helping her make the jello in the afternoon, setting the mold carefully in the fridge, then helping her unmold it and sitting at the dinner table, looking at the red bunny sitting on a bed of lettuce on a plate on the counter. It softly jiggled as if it were trembling with fright.
Reasonably similar to the finished product. I think this may be the actual mold.
After dinner, my mom got a knife and picked up the plate. When she did that, the bunny looked like it was quaking with fear of what was to come. Then she severed the bunny’s head and slid it into my bowl, where it looked up at me reproachingly, wobbling and decapitated as if to say, “WHY DID YOU DO THIS TO ME?”
I fled the table and would not eat the bunny-shaped jello.
So much for delighting the children.
***
At a similar age, I can remember making a “Save the Bunnies” sign. I’m not sure why I made it – it seems like it could have been connected to seeing roadkill – but I labored over it, accompanied by my giant Tupperware of crayons, at the small table in my room, affixed it to a yardstick, and then went to stand in the side yard in order to flag down cars to tell them about the important matter of saving the bunnies. Nobody stopped; I think the best I got was waved at. So the bunnies went unsaved.
***
At dinner as a child, I ate my broccoli (one of my very favorite foods then and now) and baked potato, and then had to be told to eat my meat. I just liked the vegetable foods much better. One Halloween, I was picking at my dinner before going out trick-or-treating, not wanting to eat my lamb chop. We were called away from the table by some impressively costumed group of kids, and when we returned, Mitts, one of our cats, had grabbed my chop and was gnawing at it under the table. I was only too happy to have been relieved of the chore of eating it.
***
I recall walking through the kitchen one day as a tween, seeing my mother preparing chicken for teriyaki shish kabobs, which was a dinner I really liked, both for the marinade and the pineapple that went along with the vegetables. My mother was turning the raw chicken over in the sauce with her bare hands. I said, “Mom, I don’t think I’ll ever be able to do that.” She replied, “You will. It used to bother me when I was a kid, too, but I got used to it.” I shook my head.
***
My dad tried to take me fishing precisely once. I asked him how he’d feel if someone put a hook in his mouth and dragged him underwater. I thought it was horribly cruel to stick a hook through a worm; I was in the habit of rescuing worms from the sidewalk after it rained. I have a vivid memory of the sight of the poor sunfish he and my brother caught gasping out its last breaths on the weathered wooden dock.
***
So, relating all these experiences, it should come as no surprise that in some point in 1990, I gave up red meat. I had never liked the way it smelled when it started cooking – it made me sick to my stomach – but now eating it was doing the same thing as the smell did. I was a sophomore in high school and was deeply involved in both our school’s chapter of Amnesty International and an Ecology Club a bunch of us were starting. The people I admired most in those organizations were vegetarians, and I aspired to be a vegetarian too. I wasn’t sure if I could do it, though.
That fall, several of us went to a student environmental conference in Illinois, and on the way the several vegetarians – which was everyone in the party except me, I think – had a terrible time finding things to eat. I could still have a fast-food chicken sandwich, but they were really stuck when our van broke down in New Carlisle, Ohio. The strip mall the van was towed to was shared by a local restaurant that had, for vegetarians, approximately: bread.
That winter, at my grandparents’ house in Indiana, a couple days after Christmas, we were having our usual casual post-Christmas buffet comprised of leftover festive foods from the celebratory dinner. I put a small piece of ham on my plate. As I sat eating, I cut a piece and put it in my mouth, and the bouncy, fleshy nature of it became totally repulsive. I swallowed it, but I thought to myself, “That’s it. That’s the last piece of meat I’ll eat.”
On the way home, my mom and brother and I were at a restaurant when I ordered a salad and a baked potato, the first of many in an era where there was little but side dishes available for vegetarians. (“Uh…give me an order of fries, an order of mashed potatoes, and a baked potato, please.”) My mom was surprised when I declared that I was a vegetarian now, and asked, “When did that happen?” It’d only been maybe three days. I think she’d missed the announcement while we were at my grandparents’ house.
But from that point both my folks were extremely supportive, willing to add to dinner or shift the menu so that I could stick to my convictions. We had never eaten much meat as a family – it wasn’t unusual to divide one steak between the four of us, and the most meat I’d ever eaten at once was a chicken breast, and we’re talking 1980s chicken breasts here, not the monsters available these days – but now we ate less. My mom bought The Vegetarian Epicure, and we ate lentil soup, pasta e fagioli, falafel, chickpea curry, vegetarian chili, and refried bean tacos.
“Vegetarian,” to me, stood for the person I wanted to be: enlightened, living lightly on the earth, sparing the world unnecessary suffering. It felt wrong to kill animals for food, and having read Diet for a Small Planet, I knew it was also an environmental disaster and did it as much for that reason. I read The Junglearound the same time, and while I recognized that regulation had changed some of the details of the process, there was enough of it still in place that I wanted no part of it.
***
When I went off to acting school at NYU in 1993, we were still in an era in which foodservice support for vegetarians was non-existent. As a result, I chose an apartment-style dorm, and set about teaching myself to cook within my $20-a-week grocery budget. Not going to the cafeteria cost me the social interaction that might have propelled me into finishing my degree there, but cooking – and wandering the city’s food destinations – Greenmarkets, health food stores, Kalustyan’s – was a whole education in itself, and was so fascinating that it set me on the path of making food my career.
One day in movement class, a studiomate asked the meaning of the Fresh Fields shirt I’d picked up during spring break. The store was a revelation for me – I recall vividly the moment the doors opened in front of me the first day the Fairfax Station store was open in March 1993. The wood floors (which I later found out were Pergo) and the fruit! I had never seen such beautiful fruit, or fruit merchandised as if it just wanted to jump into your cart. I enthused about this to my studiomate, and she said, wrinkling her nose with evident contempt, ‘You’re wearing a t-shirt from a grocery store?’ And it was at that moment that I knew I was in the wrong place, doing the wrong thing, with the wrong people. I wanted to be around people who thought that good food was Important, one of the most important things in the world.
***
I went to work for Fresh Fields, which was bought by Whole Foods. I stayed there for five years, doing mostly cheese, though a year of that was as a demo queen. During that time, a mutual friend who knew I was a vegetarian introduced me to an ex-boyfriend of hers who wanted to give up meat. That’s right, I even owe my marriage to Chimp to vegetarianism. At this time he was working on his PhD. After we’d been together a while, I jokingly told people I was getting my ChD – cheese doctorate. I had not been a cheese lover growing up, but I found it a fascinating category and threw myself into it wholeheartedly.
When we moved to Michigan so he could take a teaching job there, we found that the university in the same town as the college he was teaching at had a food marketing degree. So I got one, cramming it in in three years, having had to start almost completely over from my drama major. I worked at the headquarters of an Enormous Cereal Company while I was a student, and after Chimp’s three-year job was up, we moved to California, where I took what I’d learned from ECC and went to work for the organization that supported the growers of California peaches, plums, and nectarines until I was disabled by ME in 2007.
***
The license plate on our car in California read HRBIVRS. I’d had a previous plate that read EAT YR VG and another back in the Whole Foods days that proclaimed CHZ WHIZ. I was one of those people driving a little car wearing more than its share of bumper stickers that over the years said things like VEGETARIANS TASTE BETTER, SUPPORT ORGANIC FARMERS, LEGALIZE TOFU, HEART ATTACKS: GOD’S REVENGE FOR EATING HIS ANIMAL FRIENDS, and I EAT TOFU AND I VOTE.
***
When I was still well enough to be out to eat with omnivores, sometimes they would ask me, “Will it bother you if I order meat?” I always said no, because I’d not eaten meat for so long that seeing someone doing so was as foreign and curious to me as if they were eating a Styrofoam cup. My mental reaction was, “Huh. You can eat that? You consider it food? Well, whatever floats your boat.” It wasn’t my style: Unlike some vegetarians, I never had cravings for meat. No, not even bacon. I love the world of plant foods, and can count six dozen vegetarian cookbooks among my hundreds of books about food.
***
This past summer, I got a new bottle of a amino drink powder that I’d been using for several years. Instead of being plain chocolate, it had been reformulated with a coffee flavor. I can’t handle caffeine – that’s been a problem since I was 18; it makes me bite the heads off of puppies – and I assumed that the weird headaches and unpleasant wired feeling were a result of the reformulation. I had them send me a bottle of another flavor – vanilla – which tasted more like a plasticky vanilla candle than actual vanilla, and I had the same problematic reaction to it. Then I realized that the vanilla was a pre-reformulation bottle, so if the reformulation alone was the problem, I shouldn’t be reacting to it.
I started having reactions to food, and more and more foods were added to the list as the weeks went by. Tomatoes. Aged cheese. Avocados. Bananas. Kale, fresh and organic from our garden. As the evidence piled up, it became clear that the problem was not just the drink powder, but a histamine reaction. I did a lot of reading and checked a number of conflicting food lists before finding this one which seems accurate, or at least reflective of my reactions.
Among the items that list knocks out are beans, pulses, nuts, seeds, most cheese, soy in all forms, and eggs.
Well, crap. That’s most of my protein sources.
At roughly the same time, the Wahls Protocol started making the rounds among my ME friends on facebook. It’s a paleo-style diet with lots of vegetables – each day, three cups each green leafy, sulfur-rich, and colorful vegetables and fruits, with protein from grass-fed meat or fish, supplemented by bone broth and fermented foods. Terry Wahls improved her MS significantly through it. Jamie Deckoff-Jones, a doctor with ME, has also shown marked improvement following the same diet. I had a recent chat with another ME/CFS friend who improved from bedridden to housebound by leaving her vegan diet behind. On the other hand, I know another patient raised as a vegetarian who has shifted to eating meat and remains bedridden.
Backed into a corner protein-wise and seeing those few remarkable transformations, I decided to try to eat some meat. The histamine problem, added on top of all of my existing symptoms, is so much worse that I felt like I had to try something different – if I didn’t try something new, how could I expect things to go any differently than they have been?
Besides those folks above, it seemed like there was enough evidence that eating meat might help me: I’ve benefited slightly from acetyl-l-carnitine in the past; recently I bought a bottle of taurine, and I found that it made me yawn, which is something I have not regularly done since my insomnia first reached its crisis point in 2007. It didn’t help me sleep – in fact, it seemed to make my sleep worse, and it made me tired, too, but it did make me yawn. That made me think that perhaps those substances, naturally occurring in meat but not in vegetable foods, might help me. If eating animals helped me sleep, it might change the course my illness entirely, and that would be…immensely welcome, let’s say.
But it’s a testament to how deeply ingrained my vegetarianism is, that I have, in all seriousness, had the thought that even if eating meat would cure me, I didn’t think I could do it. This is a long way from the girl who thought she couldn’t manage to go vegetarian.
On October 17th, I had Chimp make me a tiny amount of broiled lamb. Why lamb, when I picked at it even when I did eat meat as a child? Mostly because down in our little burgh, the meat at our supermarket is not so responsibly sourced, and among those animals, while they are all equally dead, lamb is the one that’s likely to be mistreated the least during life.
I can’t say it went well. Not wanting to leave me any rareness, which was a dealbreaker when I did eat meat, Chimp blasted the lamb with the broiler. It was done, all right; done to the point that it was nearly impossible to cut or chew. He brought me our smallest bread knife and we laughed about the fact that we lack steak knives – we’ve never had any reason to buy them.
I managed two bites of the lamb. The next time we tried a day or two later, I did about the same. He took the leftovers from the second effort and made them into a very nice hash with potatoes and carrots. I got down about a quarter of the bowl of that he served me, with just a few shreds of meat in the process. I confess I was eating around them a bit, though I tried not to. It was still too lamby.
We tried broiled chicken breast next. That went better flavor-wise, but about the same otherwise. I would put it in my mouth, trying not to gag at the bouncy, fleshy nature of it, move it away from my tongue as much as possible so I wouldn’t have to taste it, chew it the absolute minimum number of times, and wash it down with an enormous slug of water.
Next came some responsibly-raised flank steak from Whole Foods. Beef can be a histamine problem because it’s often aged before sale. I reacted badly to it, with the headache that heralds too much histamine, from just a couple bites.
Fish, unfortunately, is totally out for histamine reasons, unless you can pull it out of the water yourself and eat it that moment.
And there is a diverse collection of at least twenty pounds of beautiful beans and pulses in the pantry that I cannot have.
So for the time being, that mostly leaves us with chicken as the meat I can tolerate, without adornment (citrus, tomato, soy, and hot peppers all being histamine-verboten), about four bites at a meal, before I’m overcome with revulsion and need at least a day off. I want to want to eat meat, but I don’t want to eat it.
Because it turns out that if you eat meat, you don’t have to steel yourself to do it just once, you have to muster the will to do it all the time! Over and over again! Like every single day! Sometimes more than once a day! Ugh.
***
At this point, I’m attempting to triangulate a place between my former diet, the Wahls diet, and the histamine diet. I already had some dietary restrictions – I’ve been on a very low sodium diet since 2007, because my body hates salt and will suffer tachycardia if I don’t keep it way down. I can’t have alcohol or the caffeine I already mentioned. Dr. Cheney wants me to restrict fructose. I’m somewhat lactose intolerant. Because of Wahls, I’m experimenting with grain-free – I’m down to just oatmeal at breakfast, because I haven’t been able to come up with a workable grain-free breakfast arrangement – yogurt and eggs are both out for histamine reasons. I can’t do the Wahls bone broth or fermented foods, because those are both loaded with histamine.
Today’s lunch: steamed broccoli and cauliflower with butter, asparagus sauteéd in olive oil, baked sweet potato and fried paneer.
Mostly, to this point, I’m adding a larger volume of vegetables and fat to try to compensate for the legumes, nuts, and seeds I’ve had to drop. The macronutrients are not the same, I know, but I’m hoping I’m still getting enough of what I need. Thankfully I do have a couple vegetarian sources of protein left: chickpeas seem to be okay, and being unripened (and also unsalted), so does paneer. Those are two foods I like, and I’m eating a lot of them.
I’m still in the process of figuring out what I can tolerate, and that’s going slowly, because you can only introduce one thing at a time, and as tired as I always am, I don’t have a lot to spare on having my equilibrium upset by challenges. With histamine, you don’t always react right away, although I seem to throw a certain kind of headache reliably.
There are a lot of things I love that I can’t have. Tomatoes, avocado, spinach, onions, garlic, a lot of spices, and aged cheese are all out. Just living without tomatoes alone is depressing. Living mostly without grain is likewise. I would really like a bowl of quinoa salad, some tomato-based curry and rice, or one goddamn Triscuit.
***
I must admit that I’m struggling mightily with the fact that I’m betraying my fundamental beliefs. It’s not an exaggeration to say that if I eat meat, to a certain degree I don’t know who I am anymore. “Vegetarian” has been at the top of my identity for so long, and has connected me to so many like-minded people, people I admire, and with whom I feel a deep commonality. I wonder if they’ll feel contempt for me for eating meat, the kind of contempt I’ve felt for vegetarians who ate poorly and gave up the diet for “health reasons” (i.e., subsisting on Doritos and Coke).
It’s not unlike trying to leave a religion you grew up in – there’s a little voice at the back of my mind telling me that what I’m doing is wrong. Twenty-two years of eschewing meat and a lifetime of disliking it is difficult to change. I feel like Inigo Montoya at the end of The Princess Bride – I’ve been in the vegetarian business for so long…
On top of all this, a friend from high school has recently gone vegan and is crowing (deservedly!) on facebook about how good she feels. I remember that experience from my early days as well. My body felt lighter, my digestion worked better. But seeing those posts makes me feel even more guilty and sad, and like a failure. I know that’s ridiculous – twenty-two years is more than a fair trial, and if it turns out I function better with animal flesh as part of my diet, there are more humane, more environmentally sound options than there were in 1990 (besides the whole matter of living beings killed for food in the end). And if it doesn’t help (and if I can resolve the histamine issue), I can always go back to vegetarianism.
In the meantime, I wish science would hurry the hell up with the lab-grown meat. That I could deal with, and wouldn’t feel guilty about. I think I could even put my hands in it, make meatloaf out of it. Maybe in the shape of a bunny.
This summer, two well-known ME patients, Theda Myint and Thomas Hennessey, took their lives.
I didn’t know either of them personally. Theda was well-known through her “Help Theda” facebook page, and was a very severe sufferer, confined to bed. Thomas was well-known for his ME/CFS advocacy – he was the founder of RESCIND and devised our awareness day. He was dealing with very severe pain on top of decades of ME/CFS. Because I wanted to be supportive in a small way, I had liked Theda’s page with my blog’s facebook page, and so she would have more fans, with my personal account, too. But, I confess, I had configured the settings so I wouldn’t see her updates in my feed unless I went looking for them specifically.
I did this because I couldn’t bear to come upon them unexpectedly. And the reason I did this is something I’ve never talked about on the blog, because it’s extremely painful to think about and talk about. But for Theda and Thomas’s sake – for the sake of all of us who have ME/CFS – I feel like this is the time.
***
In fall 2007, I pushed myself to go to too many meetings for work and had a crash. That same fall, my total insomnia began. By Christmas 2007 I was bedridden. In spring 2008, Chimp landed a new job here in western Pennsylvania. We were then faced with the problem of moving me from California. Commercial flight would have been impossible, and air ambulance charters cost well into the five figures. We were fortunate to get a charity air ambulance flight from Grace on Wings, which is based in Muncie, Indiana, where my mom’s family happens to be from. We moved me to Muncie that spring, expecting we would then take me to Pennsylvania. But after the move, I deteriorated.
I am not one of those people whose ME/CFS was severe from the very beginning. My functioning went down over time, stair-step style, after each crash, and each time I’d been able to adjust pretty well. This worsening, which took me from mostly bedridden to entirely bedridden, I didn’t adjust to well at all. I’m not sure how you would; it’s enormously depressing to be bedridden. At every previous point, while I’d had to prune off more and more activities, I’d found ways to adapt. But now I was no longer in the sick-but-functioning category. I was just sick, every moment, and needy, there was no diverting my mind from how ill I was, and I really started to feel the illness psychologically in a way I never had before.
This might seem like a small thing, but I think it represents how great the impact of the disease was at this point: becoming that ill made my sense of humor disappear to those around me, because I no longer had the extra energy to say any of the funny things that came to mind. So they stayed inside me, and it meant I lost a way of relating to Chimp and my mom that had done a good deal to relieve the psychic pain of being so ill. Because I couldn’t joke, and didn’t have the energy to explain why, I was treated with grave seriousness, and that too was depressing.
In California, I’d been able to walk to the bathroom every few days to take a shower. In Indiana, I couldn’t walk across the room – all I could do in terms of getting out of bed was to use the commode next to it. I now needed round-the-clock care, more than Chimp could provide and also fill the demands of a new academic job. My mother works from home, so the decision was made that Chimp would go to Pennsylvania, and I would stay in Indiana.
Chimp found a house and moved out to Pennsylvania that August. We all knew it was the only way matters could be successfully arranged, but it still broke my heart to be separated from him. He emailed me every night, so I’d have a message in my inbox from him when I awoke, even though I couldn’t always reply, not having the energy to to type or to be on the computer more than a few minutes a day, and he drove the five hours to be with me every weekend that he could.
My deterioration was such that we hadn’t been able to get me a new doctor in Indiana. An Indianapolis-based physician who claims to specialize in ME/CFS agreed to take me as a patient, even though I wasn’t able to travel the hour to see him. Chimp had phone conferences with him every couple weeks, sometimes every week, that fall.
On election night 2008, my sleep drugs – I had been using doxepin or trazadone – failed. That first night I thought it was just the excitement around the election, but it quickly proved not to be so. Without being able to sleep more than an hour or two a night, and some nights not at all, I deteriorated further. We threw Ambien and Vistaril at the problem and found that both caused more agitation than they did sleep. Around the same time, I opened a new bottle of B12, not noticing that it was 5000 mcg rather than the usual 500 mcg, and that set me up for weeks of GI pain and tachycardia.
The specialist’s ideas of how to help me were to get me on Xyrem for sleep and give me human growth hormone. So we began those. Between the compounded side effects of them and not sleeping, things started going very badly.
The Xyrem was no help for sleep. It’s not supposed to work miracles the first night you take it – supposedly you get accustomed to the drug, and over time you start sleeping longer. That’s what should happen for a person with a brain with a mostly-intact sleep function. The first time I took it, I think I got six hours of sleep, and it never gave me that much again. I was not in a situation where I could wait to start sleeping better – I needed to do so right then. I needed to have done so for weeks prior.
Xyrem is also loaded with salt, and I had long since been sodium intolerant. As a result, it worsened the tachycardia from the B12 overdose – on five consecutive days, I measured my heart rate on awakening at 96, 117, 128, and 132. The stress of the tachycardia weakened me further.
After about seven weeks of not sleeping, my body was starting to shut down. I stopped being able to roll over. At some points I needed to be spoon-fed. My legs were tingling and painful, and sometimes I couldn’t feel them at all. I was having trouble swallowing. My pulse was hovering at or about 100 bpm, and I was having episodes of it suddenly accelerating to 160 or 180 beats per minute. My thinking was becoming increasingly incoherent: I was convinced that one of my eyeballs was bulging out more than the other. I felt a growing sense of unreality.
Strange and frightening new physical symptoms began emerging. My hair started falling out. My skin was incredibly greasy. I was having trouble focusing my eyes. My ears were ringing crazily, and I had a new kind of headache across my forehead. I looked up the side effects of HGH and it became clear that I was in serious danger, possibly so far down a perilous path that we had already signed my death warrant.
Eventually all this necessitated taking me to the emergency room.
My memory of that trip is as if it were yesterday. It was the week before Christmas. I was loaded into the car, and I remember watching the headlights play on the house as we backed out of the garage, driving through the dark streets of Yorktown, coming into the midst of the lighted fast food signs along Tillotson Avenue, and pulling into the hospital drop-off zone. The last time I’d been there was when my grandmother had died six years before, and I was pretty certain at that moment that this was my time.
They kept me overnight for observation, hoping to capture an episode of tachycardia on the monitors, so it could be analyzed. There was a big fight about me being able to retain control of the Xyrem; they wanted to dispense it, and it had to be explained repeatedly that the doses were variable in both time and amount, and thus I needed to keep it in my possession.
Despite downing the maximum dose of Xyrem, I slept terribly, getting two or three hours between the patient watching the hospital in the next room, the noise from the nurses’ station, the occasionally inflating bed, the unfamiliar pillows, the IV pinching my elbow, the demands for my blood, and the tachycardic episodes.
I had one in the wee hours of the morning. The tachycardic episodes were very strange. They were not connected to anxiety. My heart rate would zoom upwards and stay between 160 and 180 for some time – twenty minutes or a half-hour. During these, between my cardiac output suddenly approaching a normal volume (my cardiac output was low, but multiplying it by more than twice the normal speed would approach a normal volume) and the adrenaline poured into my bloodstream, I suddenly felt normal. Not normal as in my sick normal, but normal as in the feeling of what my energy level was like before I became ill. It was all illusory, of course – within the hour, my heart rate would drop back down, my cardiac output too, the adrenaline would be cleared from my bloodstream, and I would fade back into the illness’ grip.
The next morning, as I was waiting for Chimp to arrive, I heard two nurses talking in the hallway. I became totally convinced that they were talking about me and my mother – that they’d seen her come in with me and they were saying that she was the reason I was ill. I had the offending nurse called in and had words with her. She treated me with contempt and impatience, which only convinced me I was correct in my interpretation. I can’t be sure, but it is entirely possible I was completely wrong – it became clear to me weeks later that some combination of the Xyrem and the sleep deprivation had been tipping me into paranoia and psychosis.
That morning, they told me that they suspected what was happening was that my adrenal glands were, for some unknown reason, dumping out massive amounts of adrenaline. They told me that it could be adrenal gland cancer – pheochromocytoma. Looking it up, Chimp and I realized that it could explain a lot of my symptoms, would be treatable, and if so, could lead to much greater well-being for me. I don’t know if any two people ever looked at each other and wished something would be cancer more than we did on that occasion. They drew blood to check for it that morning and they sent me home, with no more illumination than when I’d arrived, and no better treatment for my insomnia.
***
Back home, nothing was better. It’s almost impossible to express the suffering involved in seven or eight weeks of not sleeping. I lay awake and alone through all those nights, getting two or three hours of a break from consciousness on a good night, but sometimes one or none. My pain was amplified by the lack of sleep, to the point that everything connected to everything else felt like it had been wrenched awry and hammered back into place, and painkillers didn’t begin to touch it. I was effectively pinned to the bed, unable to so much as roll over, much less to get up and sit in a chair or look out a window. I suffered through the days, exhausted beyond description because of the sleep deprivation, with my cognitive function massively decimated, racking my brain for any approach I hadn’t yet tried that might work. The successive failure of each thing I tried crushed my hope and broke my heart for the thousandth time. I felt like I was trying to live in a world I didn’t have the a tenth of the strength I needed to endure it. I struggled to type in a Google query or two some days, looking for a new drug or supplement, hoping that the solution would appear on the results page as if by magic. I felt my life was a ruin, reduced to nothing but pain and suffering and torment. I’d been worsening for so long, the path in front of me seemed pretty clear.
By the time I ended up in the hospital after more than a month and a half of near-total insomnia, I was suicidal. While Chimp was in Indiana with me for Christmas, I begged him to help me kill myself. There was no way I could think of – and I thought on this a lot at that time – that I could do it on my own. I couldn’t walk across the room; how could I kill myself? Months earlier, I had had my mother take the belts out of the closet next to my bed so that I wouldn’t be tempted; now I was regretting that request, although I didn’t think I could strangle myself, being so averse to pain. My knowledge of the drugs I had at hand was that the best I could accomplish was to land myself in the hospital, lingering through days of incredibly painful liver failure.
I wanted to just go, without the end being uncomfortable. Because I was in a mental state where I could only think of my own suffering, I begged Chimp to get me a gun. I remember him hanging over the bed as I pleaded for his help to end my life – a huge, imposing black walnut Eastlake affair that had been in my family for several generations, a bed I was restricted to that had come to stand for my inability to escape from the illness itself. He refused, and I despaired – I didn’t curse him, but his focus for years had been on doing the more and more I needed to keep me alive, and I felt angry that he was still pushing in that direction, and would only help in ways that would continue my suffering, not end it. I felt like it was time for that to stop, that he was forcing me to keep living when I didn’t want to, and condemning me to walk down the path of the difficult and lingering death that sleep deprivation was proving to be, rather than granting me the mercy of a quick and painless suicide. And adding “kill myself” to the lengthy list of things I couldn’t do made me feel even more impotent, even more alone, and it shrank the tiny box I was living in still further.
***
I mentioned at the start that this isn’t something I generally talk about, or even think about, because it’s extremely painful to remember. I have PTSD around this whole year – from the time I was moved to Indiana to the point a year later when I went to see Dr. Cheney for the first time, and then was taken to the house Chimp had bought in western Pennsylvania. I had to write this post an hour at a time over several weeks, because every time I came back to the draft, I felt like a black cloud was settling over my head, and the longer I kept at it, the longer it would hang there after I closed the window.
My mom and I have talked about this year a little. She invited us to come back to Indiana for a visit sometime. And…I couldn’t. It’s not that I don’t love my mom and want to spend time with her – I adore her. But just thinking about that bed, the darkened room, remembering every detail with immense vividness because I had no energy to divert myself and all I could do during that year was to let my eyes play across each inch of the room over and over and over, is enough to make me start to subconsciously wrap my arms around myself and ball my hands into fists. My mom is grateful she was able to care for me during that year, and in return I am enormously grateful that she did, but if I woke up in that room, with the massive headboard of that bed looming over me, I don’t think I’d be able to stave off a panic attack.
***
After the turn of 2009, matters started to improve a little. I did not have pheochromocytoma. It turned out that the treatments that the Indianapolis specialist had brought on board were causing significant problems. The culprit for the greasy skin and hair falling out was the HGH. It was probably the cause of the tinnitus and headaches. The paranoia, loss of touch with reality, difficulty swallowing, and trouble focusing my eyes was the Xyrem. We were never able to get a solid attribution for a number of the symptoms, including the tachycardia. The Xyrem folks said it wasn’t a known side effect, but when I consume more than a tiny amount of salt, my heart races, so I’m putting some part of the tachycardia down to the Xyrem, and some down to my body dumping adrenaline into my system in a last ditch-effort at trying to keep me alive without sleep.
Unsurprisingly, we dropped the specialist. In the first week of 2009, I found among my pill bottles an old bottle of Soma, prescribed by a doctor in California, started taking that for sleep, and it began to turn me around. It worked wonderfully, but when I ran out, nobody would prescribe it. We took me to a couple other doctors in town, tried a few more things, and ended up bringing Seroquel on board for sleep in spring 2009. That continued giving me more solid sleep than I’d had since 2007, and I gradually started to improve as a result. After a little bit more than a year on his waiting list, we got a call from Dr. Cheney’s practice that spring as well, saying that they could see me, and with the improvement from the Seroquel, we took me to Asheville in June, then home to western Pennsylvania. I’ve been gradually going uphill, on average, since. And that is entirely to Dr. Cheney’s credit – I continue to have periodic crises, and if I weren’t his patient, I don’t have confidence I would have made it through them.
Am I glad I didn’t kill myself in the darkest days of 2008? Yes, in retrospect – but only because my health has improved some. I still feel my desire to commit suicide was eminently rational and reasonable, and if my situation had stayed the same, I would not have wanted to live the years since then in that way, or to have had to go through the death that was approaching. There may come a time in the future – in fact, there probably will – when I worsen to the point that I feel I need to take the same action as Theda and Thomas and many other ME/CFS patients have, and I feel like I should decide on a workable method before that time comes. I have little faith that medical knowledge will progress faster than my illness will. A lot of us die of suicide, and as heartbroken as it leaves those left behind, I can’t fault any of us who do. There is a limit to human endurance, and the horrors of ME/CFS frequently push beyond it.
I hate to think on that year, but it is also the source of my gratitude. When I was lying in that imposing bed in the dark, staring at the dresser and the window and the doorways in endless succession, I never thought I could improve to the degree that I have. It’s like living in a dream, frankly. I get a lot of praise for my positive attitude, but what it really comes from is that the past almost half-decade is all gravy to me. They’re years I never thought I would count, a life I never thought I would get back, even to the limited degree I have. Honestly, any day I can get out of bed, leave the room under my own power, and read the internet all day is a delight on the level of an all-expenses-paid vacation in some beautiful foreign locale for a normal person. If I hadn’t been through the traumas of that year, I would not be as happy as I am.
Because I did escape from that bed. Maybe I haven’t escaped from the disease – that’s not something I expect the universe to grant – and I know there will be another bed in the future from which I won’t escape – but what I have, for now, is more than good enough.
Even though my vocation for more than a dozen years was food, I’m a relative latecomer to vegetable gardening. It wasn’t something my parents did – I remember tomatoes a couple times, I think, and an excellent accidental watermelon one summer, which took root in the sandy soil of our play area from the previous year’s watermelon seed spitting contest, and some blueberry bushes planted along the side of the house when I was in late high school that wouldn’t have started bearing until I wasn’t living there any more. I wished for apple trees and a vegetable garden in the backyard, but mostly in the same way as I wished for a swimming pool or a pony or a treehouse – none of the latter bunch of which were within the limits of our HOA.
In 1996, I made my first abortive attempt at herb gardening – in containers on the deck at my mom’s townhouse when I was living there alone, after she and my brother had moved to Indiana. Everything succumbed, because with no experience, I did everything wrong – too little water, too much sun, too-large containers. Then Chimp and I lived in a long series of so-called garden apartments, and it wasn’t until we got to Fresno that our garden apartment had any area where I could actually garden. We had a little patio and a little patch of dirt about the same size as the patio. I bought herb plants and a rotating compost bin. The plants flourished – with more than 300 days of sun per year, my basil grew three feet tall. Progress. The compost bin became host to a massive colony of soldier fly larvae. (Some people do it this way on purpose, (warning: grody bugs at that link) but it was not my speed. Too…larval.)
So it wasn’t until we landed here in our little southwest Pennsylvania burgh that I started to garden in earnest. We started in 2010 with a few pots of herbs and some extra tomato plants a friend gave us tucked in along the side of the porch, and surprised ourselves by getting a bumper crop of tomatoes. Every year since then, we’ve expanded the garden in either size or scope. In 2011, Chimp put in four 4×4 raised beds for herbs in for me, which he tended, then in 2012, two more, and we also had some longer beds tilled that season.
I started mostly with herbs here, just as I had in Fresno, because I like them used in cooking at approximately the prominence most people use vegetables, and that gets expensive fast. So that first year we had the raised beds, we filled them with basil, dill, parsley, and cilantro, with a little mint tucked in to a corner of one bed.
By 2012, I had improved enough that I started to be able to walk out into the yard a few days most weeks. I started experimenting with vegetables in earnest, and we grew peas, radishes, squash, potatoes, cucumbers, beans, hot peppers, mustard greens and chard. This year we added carrots, beets, fennel, cabbages, leeks, kale, and broccoli. We started a lot of plants from seed this time around, and I’ve even done some succession planting, though with my limited energy, not as much as I’d like.
***
This spring we had the slopingest bed enclosed with native stone from the retaining wall we’d had to have replaced, which brought us to this stage at the beginning of the gardening year.
So part of why I’ve gone garden-crazy is finally having the space to do so, and part of it is that we don’t live within easy reach of Whole Foods, our local supermarket is not very super, and the growers at our farmer’s market lack adventurousness in their cultural choices. So if we want something special, or a lot of something, our best option is to grow it ourselves.
As with everything else, ME/CFS is also part of the reason. By necessity, my days’ activities are much the same: I’m at home, lying down, 98% of the day and 98% of the time; I don’t go to work, or to the store, or out with a friend, or on vacation. The garden fills up a lot of the space in my life that’s been vacated by the things that fill most people’s days, and the tasks it requires of me give me a similar sort of sense of purpose and sense of accomplishment that other roles used to.
It also gives me a little bit of autonomy back, in a life where I have to be helped with an awful lot. The garden gives me something to plan for – comparing varieties, setting up schedules, laying out plots. It gives me a reason to be excited to get up in the morning – to see what has germinated, or blossomed, or ripened, or is just big enough to pick. It gives me day-to-day responsibilities – planting, transplanting, pinching back, harvesting. It gives me problems to solve – pest and disease problems, succession planting, crop rotation.
And because my stamina is so limited, it gives me what I consider an energy multiplier. I can’t do much in the greater scheme of things; I have little in the tank to expend, and just about all of my physical exertion, ten or twenty minutes a day on good days, goes into the garden. But what I get back from Mother Nature for those minutes is enormous. I consider that I put in 2%, Chimp puts in another few percent here and there on the heavy tasks I can’t manage, and with sun and rain and time, Mother Nature takes it the rest of the way to 100%.
Despite how prosaic it is, there’s still something sort of miraculous to me about the fact that you can put seeds into soil and get plants to eat. It feels even more so to me because of being chronically ill. Gardening is one of the very few areas where my physical limitations make little difference in the end result. It matters not a whit that planting those seeds takes all of my effort. Once they’re in the ground, my energy level doesn’t factor in at all – I get the same radishes, the same beans, the same basil, that anyone who turned the earth would get. It allows me to be a success in a life where I don’t feel like much of a traditional one most of the time. I can’t make money anymore, but cutting our grocery bill significantly throughout the summer, and a little bit in the winter, too, lets me feel like I’m helping rather than just sponging.
***
This is what it looks like in full swing.
As a person with limited energy, I do have some special gardening strategies. Because I can only stay upright for about 20 minutes total, I can’t put in a day-long blitz. I also can’t endure temperatures over about 73 degrees. So I generally do whatever gardening I’m going to do right after I eat breakfast, and that’s my physical exertion for the day. I have a small, lightweight basket that I keep right next to the door with my seed packets in it, fastened together in families (roots, brassicas, leafy greens, herbs, etc.). My gloves and wide-brimmed hat are on the same table. I have a chaise lounge right outside the door where I can sit to fill containers and start seeds, and I leave my spade and fork and shears at hand there. If I’m going out into the yard that day, I can tuck the tools into the basket and still have room to harvest into it.
I limit my activity to one or two tasks, depending on how long they will take, how far they will require me to walk, and how much standing I’ll need to do. If I’m having a good day and filling cups with soil and starting seeds, I might be able to spend 20 minutes filling two sets of 12 cups each, because it can all be done sitting down right outside the door. If I’m having the same sort of good day and harvesting beans, which requires walking out into the yard and then standing, reaching, sitting, and pulling, that will pretty well take the stuffing out of me in a few minutes and has to be the only garden task for the day. Other days I do a little bit of transplanting, clean up damaged or spent plant material, pinch back, or harvest. This short period in the morning is enough to keep after the garden if I can do it most days of the week.
I also make choices about what to grow based on the illness – some crops work with me better than others. I like those that turn around and show a large reward in a small area fast, like radishes and salad turnips, and those that yield for a long time with one planting, need little tending and suffer minimal pest problems, like herbs, beans, squash, swiss chard, and kale. With herbs, I look for varieties that are noted for being slow to bolt, so they won’t need to be re-planted halfway through the summer. With vegetables, I choose those that yield early and for an extended period, instead of all at once, and which are said to be especially tasty. I started eight feet of green beans and eight feet of Roman beans at the beginning of the summer, have had almost more than we could use for many weeks now, and I’m hoping they might keep going until frost. I grow a variety of summer squash called Zephyr that is much better-tasting than most yellow squash and very productive, and this year we’re also growing an unusually delicious zucchini called Costata Romanesco too. Spring plantings of chard and kale will also go all summer for us, and we happily use them for saag paneer in lieu of fast-bolting spinach.
***
When I came to live in this house with Chimp, early on he gave me the rundown of the neighbors on our street. Across the street and one house down from us is an elderly lady by the name of Marge. Looking out the picture window on the front of our house, I couldn’t help but notice that June the riot of color that was the huge flower garden along her driveway. She keeps a beautiful garden, and each year she keeps it going until the autumn, when the springtime hanging baskets give way to mums. But I have to admit that I didn’t really get it. Flower gardening seems like a lot of work for me – evanescent results, and inedible to boot. But sometime this year, it occurred to me that Marge and I have a lot in common. Admittedly she’s more mobile than I am, despite having most of a half-century on me. Though I haven’t had a chance to meet her, I expect we’re doing some of the same thing with our respective gardens – drawing personal satisfaction from a project that needs us every day in a life stage where our society has less need for us.
I ought to get Chimp to roll me down the hill to Marge’s house before frost comes.
***
Just for fun, here’s a slideshow of this season’s harvest photos. Anything you see in here that required serious digging (carrots, beets, potatoes) was Chimp’s or my mom’s harvesting.
Let’s say you have severe ME/CFS, and you’re married to someone who has a full time job, is your sole caretaker, and because of the severity of your illness, is also chief cook, bottle washer, launderer, yard maintenance guy, and additionally, the one who puts the food in front of the cats and takes care of the product of the other end. It can lead one to feel as if one is not really doing much to help around the house except for making sure the couch doesn’t somehow float away.
The bath in question. Among other things, it needs paint – I hate mauve, and would like it a light Tiffany blue – but I need paint fumes like a hole in the head.
But you want to help, so you pledge to yourself to help keep one bathroom clean. And that’s the truth of the matter: you can’t really clean a bathroom, but if you can function upright for about twenty minutes a day, total, most of the time you can use two or three or five minutes of that to keep one very small bathroom clean. Mostly.
You don’t try to clean it all at once. Of course you can’t, in two or three minutes – but you can get it done in that time over the course of a week by attacking one thing a day.
I picked up this divide-and-conquer method from using FlyLady some years ago, when I was housebound but still working and while significantly ill, much more physically able than I am right now. Her approach of doing a little at a time rather than my historic habit of trying to go at everything in an occasional overwhelming, discouraging, unpleasant blitz is not only helpful to housework haters; it’s good for the sick and low-energy among us, too. Over time, I’ve adapted her approach, making small tasks even smaller so they’re manageable for me. I do my cleaning on my way to bed, because that’s my best time of day.
So this is how you keep a bathroom clean:
Since you can’t do a lot of walking, it’s vitally important to have your tools at hand. Under the sink is a spray bottle containing a mix of water, vinegar, and Dr. Bronner’s, a can of Bon Ami, a scrubby sponge, a roll of paper towels, a pack of alcohol wipes, and a pair of work gloves – loosely fitting ones, so they’re easy to slip on and off even with low energy. (You may notice that none of these items have added perfumes, which is necessary for those of us who are sensitive to smells. The alcohol wipes aren’t quite as good as glass cleaner, but I haven’t been able to find a glass cleaner or glass wipe I can tolerate.) A toilet brush is in a holder next to the toilet.
The other thing necessary for easy bathroom maintenance is a well-ordered linen closet. In the linen closet, there are neat stacks of hand and face towels, and a large stack each of facial washcloths and “presentable” washcloths. On a tray that can slide out, making it easy to access, there are rolls of toilet paper, boxes of paper cups, a stack of backup bars of soap, and other things needed at hand but which are less presentable, like tissues, toothpaste, toothbrush, and a bottle of mouthwash. The less that there is to sit on the counter in the open in such a tiny bathroom, the less there is to fuss with when cleaning.
With all that in place, you’re ready to go.
Monday is mirror day. Get out an alcohol wipe, and use it to wipe the mirror clean of smudges and spots. Take a paper towel and buff the mirror dry. The rest of the week, make assiduous effort to avoid spotting the mirror with splashes so as not to need to do it again before the next Monday.
Tuesday is toilet tank, seat, and bowl day. Fetch your spray bottle from under the sink, along with the roll of paper towels. Spray the tank and seat down and wipe. Spray the inside of the bowl, scrub, flush, and then go lie down, because trying to use your atrophied back muscles to bend over and scrub like that for half a minute was exhausting.
Wednesday is wall day. This particular bathroom has seven walls, counting three of them as the tiled bathtub enclosure, and includes two doors. Pick the particular wall or part of a wall it’s been the longest since you addressed. Spray with aforementioned cleaner, and wipe as best as possible. Do at least half of this sitting down, because bending over is Bad News for your heart. If you’re having a bad day, this can always be skipped, or if you had a bad day during another part of the week, you can skip doing a wall and do whatever you missed previously. On Wednesday, also change out your facial washcloth.
Thursday is toilet exterior day. Sit down on the floor and spray the base of the toilet with cleaner. Wipe. Once in a while attack the baseboard and wall behind the toilet while you’re down there.
Friday is floor day. This is another that can be done sitting down, but is also the thing that takes the longest. Grab a couple of washcloths (there are always one or two that have been used for one bath lying around), spray the floor in front of you with cleaner, and working backward, wipe the floor toward you. This could not be called extremely thorough, but as long as it gets done every week or two, it keeps the dust and hair situation on the dark laminate floors pretty well under control. Take a stab at a baseboard in the process if you can manage it.
Saturday is sink day. When you have a bath, you take the soap dish into the bathtub with you and scrub it with a washcloth after soaking it, and you keep a presentable-looking washcloth on the countertop all the time so you can wipe down splashes on the counter and faucet each time you use the sink, so this task doesn’t take a ton of effort. Spray the counter and faucet with cleaner and wipe, then sprinkle Bon Ami in the basin, go over it with a scrubby sponge and rinse.
Sunday is surface day. Pick something that hasn’t been sprayed and wiped for a while – a windowsill, tub edge, towel bar, part of a light fixture, the cabinet fronts, top of a door, etc. – and go to town. This is a day that can be skipped if you get to this point in the week and need a day off, or need to make up a day you didn’t catch in its regular rotation. On Sunday, you also change out your hand and face towels, your facial washcloth, and the washcloth you keep sitting on the countertop.
Now, at this point you may say, “What about the bathtub?” And there’s the rub. (Sorry.) I cannot really effectively do the bathtub. The combination of force, angle, and exertion needed is more than I can afford to expend. So Chimp does the tub itself, using Bon Ami.
***
The handy thing about a schedule like this is that if you can mostly follow it, the bathroom doesn’t ever get away from you, and even if you miss a day and never get to make it up over the course of the week, two weeks going by on most of this stuff is still not the end of the world.
The rest of the house may not get cleaned as often as I would like, but I content myself that there is little possibility of being able to make a difference for the entire house by spreading the energy I have across it, since just getting to some rooms is more than I can do on a regular basis. So, as in so many other things, I try to forget about what I can’t do – in this case dispatch the dust bunnies that are surely rampaging elsewhere – and be satisfied with my clean little bathroom.
Nasal VIP wasn’t the only thing that Dr. Cheney and I talked about this year. I’m sharing this grab bag of questions and answers because I know I always learn from what other patients ask him.
How am I doing?
My physical exam was substantially the same as last year; I had a fever (I’m never sure if it’s their thermometer or if I really am, because at home I’m well below 98.6, but always well above there); my pulse jumped from 85 (already high because of stress) to 102 when I stood up, but those numbers are pretty similar to previous years. The crimson crescent on my soft palate was “almost purple,” he said, but still better than last year, when I had a cold, and when he said, “Oh my goodness!” I managed to not fall over on the Romberg or the tandem stance again, but did fall on the augmented tandem stance (I think that’s one foot in front of the other and arms up, with eyes closed), which is what I did last year as well. He called Dixie, his assistant, in to see my fingerprint changes, which he has said in the past are some of the worst in the practice, with both extreme smoothing and crosshatching.
When he put the nasal cannula of oxygen on me, I tried to stick it out and not tear it off in the first ten seconds, like I did last year, but that meant that I hyperventilated (which is what I’ve always done in the past, too) and threw myself into a panic attack because, paradoxically, my brain wasn’t getting enough oxygen: “What happens when you hyperventilate like this is that it restricts bloodflow to the central nervous system, and it causes you to vasoconstrict, and it also causes a left shift, so your brain is suddenly without oxygen. And it does not like that. The general response to smothering is extreme anxiety. Your brain can’t distinguish between whether it’s smothering, or whether it can’t get oxygen – it can’t understand it. So that can bring about quite a bit of powerful emotional responses – exactly how, have you ever seen in the movies how someone’s being smothered with a pillow? They freak out, and this is the same.”
When I got home, I entered all the details of my physical exams from each of my appointments into a spreadsheet so that I could compare them. One thing that stuck out was that the corona radii in my eyes were much worse than the year before, and worse than any year except for the first time I saw him in 2009. I asked him whether there was any connection between the corona radii and my worsened light sensitivity as compared to last year, and he said, “This is possible. As corona radii increase, light sensitivity might also increase. Corona radii can vary over time.”
Methylation Cycle
It seems like a number of my ‘net friends with ME/CFS have been doing one form or another of methylation testing and supplementation within the last year or so. I asked Dr. Cheney if he’d helped any patients work with data from 23andMe. He answered that in the past, they’d done testing for MTHFR and in response, given those patients Folapro instead of folic acid. “The problem we observed was that a lot of people with that SNP who we gave folapro to, which should help them, looked worse in the end. And the idea there is that there’s a reason to be methylation blocked. And so if you successfully unblock the methylation cycle, which you can do easier with folapro, if you have that SNP, is force you to make less glutathione, ergo the mindless attempt to unblock the methylation cycle, without realizing that the methylation block is essential to make glutathione is a mistake, and all that the SNP did was magnify your mistake. So I haven’t found it as useful as you might otherwise believe. Now if we were dealing with some other diseases, other than chronic fatigue syndrome, I would say absolutely, knowledge of the SNP might inform one’s approach to methylation, but not in the special case of CFIDS, where you actually want to block the methylation cycle.”
In one of his arguments of both sides of an issue, he then said, “Now here’s where I could be wrong on that. The study of HERVs by Kenny De Meirleir – that are expressed – what causes the expression of HERVs? Methylation block.” So there is a choice, he explained, between helping patients make more glutathione by not unblocking the methylation cycle, or trying to shut down the HERVs by supporting the methylation cycle and creating more oxidative stress in the system. He admitted at that point, “So I haven’t figured out exactly what I should be doing, except my sense is to follow what the echo is saying, because the echo informs me about whether the move improves redox control or makes redox control worse, because I think that’s the core problem. And if it seems to help redox, I tend to go that way, if it tends to be something that hurts redox, then I don’t go that way. And I think I’m better informed that way than the theoretical view of attacking something vigorously, because it seems like, and you may remember, that the people who first announced this methylation protocol say some people get worse. And that’s what I’m worried about, is the ones that get worse. But then some people get better, because some people have this problem, and they might better off with…increasing the methylation cycle…”
Fingerprint Changes
I’ve talked about my fingerprint changes before. I’m to the point now where they’re really almost gone. Following on the mention of HERVs, he proceeded, “Now guess where they found this thing expressed, recently? HERVs were found in fibroblasts, And if HERVs are expressed in fibroblasts, you get defects in collagen synthesis. And that produces these fingerprints. How can we prove that? We can prove that by doing punch biopsies of your fingerprints, and staining the fibroblasts for these HERV proteins. And that wasn’t doable a few years ago, but it is now. So we could – one of my ideas – and you would be first on my list, by the way – is to send you to the dermatologist downstairs and have him do a punch biopsy on your worst fingerprint, send that to someone that can fluorescently stain it for HERV proteins. And then your fibroblasts would light up with HERV proteins. And if we saw that, I would make the argument that we should pounce on your methylation cycle, and throw everything and the kitchen sink at you, including measure any SNP that might affect this, and really go after it. But my concern is that may not work very well if you have glutathione deficiency, which you also have, and that might just make things worse.”
Probiotics and Insomnia
Since I did that course of GcMAF in 2011, I’ve become sensitive to yogurt and kefir, both of which I used to tolerate well. I wondered what might be the cause of it, and if perhaps it had something to do with a leaky gut problem. Dr. Cheney replied,“That’s possible. Another possibility is that it’s increasing metabolic demand that you can’t meet. That creates a supply-demand mismatch. That will force you to live with adrenaline to create more supply, then you can’t sleep. I kind of like that idea, watching how sensitive you are to hyperventilatory response. Your supply-demand mismatch is not tolerated at all. The peculiarity about that is that even an improvement in demand, if not met, creates anxiety. Or a decrease in supply could produce the same. So my guess is that it’s creating a a supply-demand imbalance, but I’m not sure which one it is exactly and exactly the mechanism. It could be an immunologic effect, that would be a leaky gut issue, the immune system activates, that creates oxidative stress, that creates lower supply. That’ll create a supply-demand mismatch. That’s another possibility. All that tells me is how sensitive you are to this situation. See most people, immediately, demand goes up, supply goes up. You can’t do that. Unless you throw on a big wad of adrenaline, then you can.”
Looking at my notes, he pointed to the fact that I’ve also had to reduce my dosage of DHEA cream, because it was also causing sleep problems. “Here’s another example – slight increase in DHEA, caused her insomnia to worsen. That’s an anabolic hormone, it increases demand, that she can’t meet, so she then has to resort to adrenaline to kick up the supply to meet the demand, so she’s then increased adrenaline and she can’t sleep. Then once the adrenaline subsides, she’s wiped out.”
High Sulfite
My urinary sulfite tested very high last fall (5.70 on a 0.15-1.50 scale). I asked Dr. Cheney what that indicated, and whether we needed to do something about it. He explained that the high sulfite indicated glutathione depletion, low reduced glutathione. “And that’s high, I think that’s one of the highest in the practice. 5.7, I don’t remember anyone higher than that. So you get the gold star for having the highest sulfite, which means you have the lowest reduced glutathione. Which, by the way, in my view, is at the core of this illness, I just don’t know what causes it.”
Low SOD
I had a test come back with very low SOD (1.3 on a scale of 9.4-13.6), and asked what I could do for it. Dr. Cheney suggested Standard Process’s hawthorn, which is a direct SOD inducer and improves heart function.
Adrenal Support
While I was helped a great deal during the trip by the Cortef prescription Dr. Cheney wrote for me (originally while I was on GcMAF, to have in case of IRIS), it’s not something I feel comfortable taking all the time, even at the low levels (10 mg) he tells me have been found beneficial in at least one study of CFS patients. I thought I might be ready to try a supplement for it, though, so Dr. Cheney suggested Innate Response’s Adrenal Support formula, which said he thought would be very beneficial if I could tolerate it.
P5P and Sam-e for Insomnia
P5P and Sam-e are the two latest additions in the continuing saga of trying to get me a good night’s rest. I added them in my “second round,” the latter whack of pills, which I take between 3 and 5:30 a.m. (I do this because I found a long time ago that if I took everything at the beginning of the night, I wouldn’t sleep through, and that frankly, at this point, the amount of stuff I take, if I took it all at once at the beginning of the night, might be dangerous to me.) I asked Dr. Cheney if the success I had adding those two things indicated anything about my insomnia to him. He replied that P5P is essential to the manufacture of serotonin, which is essential to making melatonin, and that Sam-e aids in the methylation pathway that’s necessary to metabolize neurotransmitters, so taking the two together would likely be better than just taking one or the other.
Facebook Data as Wellness Indicator
This graph, which I printed out and included in the packet I gave Dr. Cheney, was made by a web app called Zeebly Social Me, which grabs your facebook data and makes an infographic with a series of statistics about you. Mine was only mildly interesting, except for this eye-popping graph. That big spike in the grey line (the number of links I posted to facebook) happened in March 2011, which happens to be the month I started both Soma and low dose naltrexone. One or both of them seems to have had an enormous affect on me. Unfortunately, there is that huge drop a few months later – and that corresponds with when I dropped into several months of cytokine storms because of my course of GcMAF. Once we explained what the different lines stood for (shockingly, Dr. Cheney doesn’t seem to waste a lot of time on facebook), he thought this was very interesting (“Cool! That’s almost as good as one of those piezoelectric motion detectors that you wear on your belt that tracks your movement.”)
Wrapping Up – Other Things to Try
Dr. Cheney always has a few more things in the New Stuff to Try list at the end of your appointment. This year, he suggested I add progesterone, because my symptoms get so much worse toward my period. He also suggested I try anatabine, colloidal silver (for its antiviral properties), selenium, and he originally suggested a mineral supplement called The Gift, but rescinded that suggestion when he realized it would possibly interact negatively with my amalgam fillings.
So what now?
Now I try to add some of these things to my regimen, and if I want to take nasal VIP, I have almost two dozen blood tests to have done. (That will take absolutely ages, because if I give any more than a tube and a half at a time, I crash.) So I haven’t added any of the new stuff yet – there have been some other things I wanted to work in first, and as I’ve mentioned recently, I’m terrible at starting new stuff, and it just takes ages for me to get comfortable enough to do it. I’ll let you know how it goes when and if I do.
It’s taken me much longer than usual to write this post because I got the idea of transcribing the recording we made of the appointment as a way to help me write. We’ve made a recording every year, but this was the first time I’ve listened back to one of them and tried to type it all out. I felt like I should, because every year there’s been something Dr. Cheney has said that I’ve eventually wanted to go back to, but I haven’t ever had the energy to listen through the whole appointment to find it. Furthermore, I felt like I pretty much had to write it all out in order to write this entry, because this was the first year that I felt unsure of my ability to summarize from memory the general gist of what I’d been told. It’s not that my memory is so much dramatically worse, but that Dr. Cheney was throwing a lot of new information at us.
My memory on these trips is always poor, as is my memory of them afterward. Because the amount of energy required for the trip is so much greater than my usual expenditure, and so much greater than my capacity, really, the stress of it causes my system to borrow from anywhere it can to get me through, and one major place that it borrows from is what would usually go to my brain. So it short-circuits my short- and medium-term memory. We’re talking completely forgetting and having to be reminded of events that have happened within, say, the last two hours. This has benefits in that I don’t remember much about the trip afterward, which makes it easier to go through with when it comes around each year, but as a result it’s also difficult to write a blog entry about it.
My short-term memory being totally shot at the time makes it very difficult to follow Dr. Cheney, who is as verbose as he is intelligent. Making the transcript showed me that part of the reason I leave his office confused is that he will frequently argue both sides of an issue, or even four or five sides of an issue, in a Well, it may be this caused by this and if it was we could do this for it; but on the other hand, it could be that this is happening, and if that were the case, you might see this or that, and given that, it might seem obvious that this would be the solution, but you don’t want to do that, because we’ve found that if you do, it hurts instead of helps, but if the first part doesn’t hold, we would have to go in this direction, as long as these conditions are met, which we don’t know if they are yet. It is wonderful that he has so many ideas, such thorough experience of the illness, and an encyclopedic understanding of the human body, but when my brain is functioning on the level of pocket lint, the bulk of it flies right over my head, smacks against the wall, and all I can remember are a few keywords. Thus, the transcription.
***
This is the fifth time we’ve taken this trip. Last year, I noticed along the way that there were a substantial number of hotels in Beckley, West Virginia, which is just about exactly halfway between home and Asheville. Every year that we’ve stopped halfway (the third year I decided we’d drive straight through on the way down, which was a mistake with a capital M), we’ve stopped in Charleston, which adds about a half-hour that we then have to backtrack in the morning. This year I proposed we do Beckley instead – anything to shorten the trip and save a little bit of energy. We made a reservation at the Courtyard Marriott – I always liked Courtyard when I used to travel on business. And here is where I didn’t realize, couldn’t have realized, I was making a substantial error.
We were checked into the hotel, and my mom and Chimp brought me upstairs, parked me on the suite’s sofa, and went back down to get our substantial supply of paraphernalia. Within a minute or two, I realized I was feeling very strange. And then I began to feel sleepy. Sleepy. Those of you who know my history with this illness will realize that “sleepy” is not really in my body’s current set of options. Exhausted, yes, constantly. In need of sleep, yes. Actually sleepy? No. I haven’t felt sleepy for one single minute since my major insomnia problems began in 2007. But here I was, feeling sleepy and strange, in a bad way. Could it be I was just really tired from the trip and my body was doing something it doesn’t usually do? I entertained the idea, but I recognized that there was a substantial sensation of this is a bad thing going on and that the sleepiness had come on quite suddenly when I’d been parked on the couch. And then, looking around at the room, I came to the conclusion that the decor was very up-to-date. Uh oh.
My mom arrived back in the suite. I don’t remember our conversation in detail, but I conveyed that I really needed to get off that new couch and away from whatever it was made of and whatever it was outgassing, right that minute. She wheeled me into the bedroom side of the suite, which, thankfully, had a sliding door to a balcony that could be flung open and additionally, thankfully, it was in the mid-60s outside. The sleepiness dissipated immediately, evidence that the couch was Bad News for Jocelyn. Or at least that if it was to help me with sleep (possibly permanently), that I should have been swallowing whatever-it-was and not breathing it.
***
One thing that made a substantial difference in the ease of the trip this year was the Cortef prescription that Dr. Cheney wrote me last year, after he’d observed me breaking down in tears at least once every time I showed up in his office. I have only taken minuscule doses – I think the most I’ve taken is a quarter of a five-milligram tablet at a time – but it’s been enough to give me margin when I need it that my body can’t supply me with. I made it through the appointment without crying once this year, but where it really helped was on the way home. Because of a massive rock slide on I-77, just over the West Virginia line, our usual seven-hour trip home took an extra three hours. I hate to even consider how much more fried I would have been without the Cortef.
***
Dr. Cheney moved to a new building this year. Last year, I had to be moved from his office out into the hallway of his suite halfway through my appointment. The day was unusually warm and the air conditioning was not keeping up enough to keep things below my hard limit of 72 degrees. His new office is a bit smaller – it doesn’t have a couch in the waiting room, so we only brought me over from the hotel when he was ready for us. His new office has some windows that don’t have blinds on them, so next year we’ll bring more supplies to provide darkening, because my light sensitivity is my one major symptom that has worsened. Additionally, the echocardiograph is in his office instead of in a separate room in the suite, so I didn’t have to be shifted from room to room and back – and as above, every little bit of energy saved helps.
Dr. Cheney told us that the new office was saving him a substantial amount each month in practice costs. “Medicine,” he said, deadpan, “is a very expensive hobby.”
***
One of the main things that being a Cheney patient gets you is a regular supply of New Things to Try. There is, of course, a core set of therapies, but he’s always sniffing out new ones. Many of them fall by the wayside (a currently ten-year-old article about Dr. Cheney will be littered with abandoned modalities), and only the truly solid ones seem to stay in the regimen over time. This year, the new thing is nasal vasoactive intestinal peptide, or nasal VIP.
Nasal VIP is something that Ritchie Shoemaker, who is known for treating mold-related illness, did an 18-month study of in 20 patients [PDF]. Dr. Cheney said that he and Dr. Shoemaker have traded patients that one or the other of them haven’t been able to help for some reason, and it was one of those patients who brought it to his attention. (“Now about a year ago, I had a patient come in here who was seeing Dr. Shoemaker for mold illness. She didn’t think he helped very much, but she said, ‘The one thing he gave me that helped was this nasal spray. It’s the one thing I like.’ And I said, ‘What does it do?’ And she said, ‘It helps me think.’ So she’d take a squirt, and she’d have six hours of better brain function.”)
Dr. Cheney’s main method of measuring the potential effectiveness of treatments is having patients take them while they’re undergoing echocardiography, thus he has an echocardiograph just lying around the office. So, in the way that you might photocopy your bum at a raucous holiday office party (well, not you, someone much less classy than you), as long as you have the echo around, you might as well test everything on it, right? And it happened that the day before my appointment, Dr. Cheney had tested VIP on a patient for the first time.
At this point I should back up a little bit. It was not just Ritchie Shoemaker’s patient that caused the arrival at this point. Within the last year, Dr. Cheney got interested in Chronic Cerebral Spinal Venous Insufficiency, a circumstance of poor bloodflow in the brain and spinal cord, with blood flowing in the wrong direction, previously primarily found in patients who have MS. He sent a small number of patients to be evaluated, and found that those patients universally had it.
A handy diagram to refer to, because I expect most of you have this memorized as well as I do.
At my appointment, he showed us video from an echocardiogram and, knowing that in previous years he’d shown me the diastolic dysfunction of my left ventricle, explained CCSVI this way: “Because the [left ventricle] isn’t filling very well, the [right ventricle] works harder to fill up the right side. Unfortunately, it squeezes hard, and reverses the flow of blood through the tricuspid valve, and up in the opposite direction.”
“What this is that you’re seeing is the pressure gradient of blood across the tricuspid valve moving blood in the opposite direction from the normal flow. It’s going back up into the right atrium, back up into the superior vena cava, back up into the internal jugular veins, and back up into the deep cerebral veins. It also reverses flow in the [inferior vena cava] and in the hepatic veins.”
“That’s the right ventricular power, that it reverses the flow. The only other thing you need [to allow blood to flow in the wrong direction] is a low-flow state. The point being, that it’s harder to reverse the Mississippi than the Swannanoa. Because the Mississippi has way too big a flow to reverse it – it would take too much power. Whereas the Swannanoa Creek would be easy to reverse, because there isn’t a lot of water. So if you have low flow rates, low venous outflow in the brain and in the liver, then this [the hard right ventricular squeeze] is all you need to reverse the flow.”
Now, I don’t know precisely why the aha! moment happened – my guess is a simple combination of a thorough understanding of the human body and having an available, applicable piece of equipment – but as he couldn’t visualize CCSVI using his echocardiograph, Dr. Cheney thought to look at the liver to see if there was a similar flow reversal there – and there was. He calls this chronic hepatic venous insufficiency, or CHVI. He had visualized it in a dozen or so patients by the time I had my appointment, but it wasn’t until the day before I arrived that he combined looking for flow reversal in the liver and administering nasal VIP, knowing it should improve cardiac output, to see if it would fix the flow reversal, and it did: “Yesterday we proved it. It was unbelievable. And the first thing we did is we looked at the TR Max PG – which looks like this, kind of. This was pre-VIP, this was post-VIP. And this distance is called the TR Max PG. And you’ll notice that this one’s steeper, and this one’s shallower.”
“This pressure here varies in chronic fatigue syndrome, but it tends to fluctuate around 15 mm of mercury, and this dropped to 13 mm of mercury. Roughly a 15% drop in five minutes. And it took five minutes. We took measurements each minute. And at one minute, there was no change, two minutes, no change, three minutes, no change. At four minutes out, no change. And at five minutes, it changed. Now if we’d watched it for longer, it could have continued to get better; we didn’t look beyond five minutes. But once I saw this, we’d changed the physiology that causes reversals. I then rolled her over and looked at her liver, and sure enough, the red flashing reversal had disappeared. That is a very big deal. In fact, it may be the biggest therapeutic breakthrough we’ve ever had, therapeutically, for this disease. Because this also drives reversal in the the brain.”
This is a slide from a presentation Dr. Cheney did later in the week that I had my appointment (link below).
“It took five minutes to see that. No one’s ever shown that before. In fact, no one has ever looked to see if people have reversal of flow in the liver. Now we have looked for reversal of flow in the brain, using CCSVI technology, which is not available here, but everyone I’ve tested has it, without exception. And so far, everyone I’ve been able to visualize the liver on has this. And so it looks like a universal problem [in CFS] and what that will do is will devastate you. Because if you reverse capillary bloodflow, then the brain doesn’t have proper removal of toxins, and of metabolic waste products, and there will be a buildup of acids. Acid development within the cell will destroy enzyme functions, so it’s like your entire brain doesn’t work anymore. And of course, particularly in respect to bloodflow, there’s a lack of bloodflow, of proper bloodflow in the central nervous system. And then the body tends to live in a hyperadrenergic state, like fight or flight. It’s impossible to sleep.”
So if you have CCSVI/CHVI, it’s particularly difficult to understand and write a blog entry on CCSVI/CHVI. Which I can attest to. Furthermore…
“Therefore, flow reversal in the liver will destroy liver function. Because what does the liver do? It does three major things. It detoxifies the body from food, detoxifies the body from metabolic waste products and bacteria, detoxifies drugs, detoxifies environmental toxins. So you don’t do that very well. So you become an environmental invalid. And you’re a slave to a certain diet. It’s also important for intermediate metabolism. So it’s important to convert fats to glucose, glucose to fats, and protein to glucose. All the intermediate metabolites are important to stabilize you, metabolically speaking. So you don’t do that anymore. And [thirdly] [t]he liver is a big-time immune modulator. And the reason it’s such a big modulator, particularly in the down direction, is that the stimulation of the immune system potentially is mammoth in the GI tract, with all the food proteins in there, with all the metabolic waste products and bacterial debris. So you have to have a way to sort of shut off this stuff, otherwise you’ll react, overreact. Well, guess what? You can’t shut this stuff off, so you’re in a constant state of immune activation. “
Anybody recognizing themselves yet?
***
Eventually I was rolled over and the echocardiograph fired up to do the usual measurements and then look for evidence of CHVI. I got some good news, in that my stroke volume is now 55, which is still below normal, which would be 80, but in 2009, the first year I saw Dr. Cheney, it was a truly pathetic 29. It wasn’t hard to find tricuspid regurgitation on me (“See the leak? See the white flash there going white blue, white blue? This is tricuspid regurgitation. That is what reverses flow in the brain.”), but it was a bit of a struggle to find evidence of CHVI on me. Michael, the tech, had had a dickens of a time, because the flow reversal in the liver is visible on exhale at the same moment as a heartbeat, and when I exhaled, they found that the veins in my liver collapse. He dug around on me against the edge of my rib cage for at least fifteen minutes before getting good evidence of it.
Then it was time for me to take some of the nasal VIP to see if it would do what it was supposed to do for me. I know this probably all sounds like an exciting opportunity, and it was, but especially because of being only the second patient he’d asked to try it, it also took quite a bit of convincing to get me to go through with it. I’ve previously mentioned my New Bottle Paranoia Syndrome, which causes me to struggle to start new things and to begin them at very low doses, because so often weird things happen.
When Dr. Cheney brought out the spray and showed how much would be dispensed (a big puff), I was extremely trepidatious. He said there’d been no adverse events in Shoemaker’s protocol, and I said, “Remember my response to MTF?” (during my 2011 echo, I had a spectacularly scary response to MTF where I went into instant tachycardia with flushing and I felt really awful). He said, “This is not MTF.” I explained my usual starting at tiny amounts, and after a fair bit of resistance on my part and a little pushing on his part, he conceded that instead of me inhaling it, we could put a little of the spray on a tongue depressor and I could touch it to my tongue. I agreed to that, because it made me feel a lot more in control than giving me a big whack up the nose to start off with.
So I touched my tongue to a drop of the stuff. It tasted mildly salty. After about two minutes, I got a bit of a tight headache across my forehead, which is one of those things that happens for me as a reaction to all sorts of substances. Our original plan was then to have me take a little more, but when the headache came on, I asked if we could measure if anything had changed, and so we did: “It looks like it’s dropped quite a bit, which is a good thing, because if the TR Max PG is dropped, that means you have more blood going in the right direction instead of the wrong direction. And that means there’ll be less refluxing in the brain and the liver, and more output. It’s interesting – he’s measured it twice since you took it, and it’s been about the same both times, ten to eleven millimeters of mercury, and your original was fifteen. So that’s a roughly [22]% drop (my numbers were adjusted later). The patient yesterday was 8%. And that was enough to reverse flow [for that patient].” Michael attempted to see whether the flow reversal in my liver had abated, but it had been so difficult to find in the first place – and I so needed to be done with the echo at that point, after an hour of having the probe jammed into my ribs – that we gave up before determining that conclusively.
***
Obviously this was big news. Dr. Cheney did have a couple cautions to make, though: “I always caution people about this. Is this the cause of CFS? And the answer is no. It’s the primary complication, but it’s not the cause. The cause is an energy deficit at the cell level, which I believe is due to redox impairment, and I don’t know what’s the reason for that. But the primary complication of a low energy state is flow reversal in the brain and the liver. And that just drags you into a hole. So we can get you out of the hole, but we can’t cure you.
“My cautionary note is this: Every time I find a seminal problem like this, and I treat aggressively, a lot of times, people go in the reverse direction. Because I’ve discovered that there was a reason behind lowering the VIP. Well, you might ask, what would be the rationale for lowering the VIP? Because it would disable you. And does the body want you disabled, when you don’t have enough energy to operate? And actually, that’s what it wants. Because its job is to match supply to demand. Because studies show that a mere 1% mismatch of supply to demand is lethal. The body knows that, so when the supply is low, it tries to bring down demand. And there’s no better way to reduce demand than to reverse the flow in your brain and your liver. That will put you in bed, and you can’t get out. So that’s exactly what the body wanted.
“So I have a little cautionary tale, because I’ve seen this tale before. Little bit of DHEA, better, too much DHEA they crash and burn. Little bit of growth hormone, they get a little better, then they crash and burn. So if you intervene with these abnormalities, you see that things don’t happen quite as predicted.
“On the other hand, we do have evidence from Ritchie Shoemaker that 18 months of therapy with nasal VIP can be a very powerful, effective therapeutic modality, with symptom improvement over 18 months with no significant downside over 18 months. So that’s comforting.”
***
Nasal VIP is not something you can buy over the counter. It is FDA approved, and has orphan drug status for pulmonary hypertension, but it’s only available from one pharmacy in Massachusetts, which synthesizes it, and they require that you be in a defined protocol from a physician by whom you’re being followed.
While I can’t say this with absolute certainty, because I’ve only had the one dose, I do think the nasal VIP helped perceptibly, besides just giving me a headache. Dr. Cheney told me he thought its half-life was perhaps three hours, and I was surprised by how good I felt for the rest of the day – not at my best by any means, but better than I usually am after a Cheney appointment.
So, am I going to go on it? I may, if I can get through the 20-odd tests Dr. Cheney will require before starting it, but at this point, I am waiting to see how a few others with better function do on it first. My fear is some of what Dr. Cheney mentions above – that messing with this may turn out to be ill-advised for some reason we’re not aware of yet. I also wonder if VIP, by increasing bloodflow, might allow one to exceed one’s energy envelope more easily. I’m one of the sicker patients in the practice, and I have to admit that I don’t want to be the one to find out that this thing lands you squarely in a ditch. Additionally, now that I’ve been a Cheney patient for several years, I’ve seen a few rounds of “best therapy ever” – which they are when they come about – and as I mention above, and as he admits, not all of them pan out in the long term. I wish there was someone else I could link to who’s planning to go on it, but the only other Cheney patient I know who keeps a blog has made basically the same decision I have.
***
If you want a lot more technical detail about CHVI, check out this presentation, which Dr. Cheney gave a couple days after my appointment, starting around 18:30. If you don’t have the ability to follow video, you can check out Lisa Petrison’s notes on the presentation.
More next time on…everything else besides nasal VIP. Part II continues here.
“So when you think of things that the illness has cost me, things that were a big part of my identity, things that I loved to do, what’s the first thing that comes to mind?”
“That’s easy: Control. I mean, I don’t mean that in a negative way – you are very detail-oriented, just as much as I have my head in the clouds, and I know it’s been really hard for you not to be able to have your hands in things, because you enjoy managing every aspect of a process and you’re very particular about how things should be done.”
I looked over my glasses at Chimp. “Because I was going to say singing,” I said.
“Oh. That too. Your singing is the one thing that would make me cry.”
“Nice attempt at a save.”
I don’t remember a time when I didn’t sing. I was the character in ABBA’s “Thank You for the Music”: Mother says I was a dancer before I could walk/ She says I began to sing long before I could talk.
Dance lessons I took, but singing I just did, standing on my bed, choreographing show-stopping numbers in which I starred, backed by an imaginary cast of thousands, to my day’s choice of record on my Fisher-Price player. My main aspiration was rock star…possibly actress. I remember watching Aileen Quinn’s performance in Annie in the cinema and thinking, with the egotistic boldness of childhood, “I could do that. I want to do that.”
But of course I was just a kid, and not a pro: In elementary school, I once blanked on a piano piece during a recital, and another year I flubbed a big line in my lead in a church musical because I’d been concentrating so hard on the line before it. The piano debacle reduced me to helpless tears afterwards – I didn’t love piano and my failure was just the cherry on the sundae of my struggle with its endless frustrations – but the line-flubbing I took in stride and just kept on going, because I did love singing and acting.
My mother, in these years, was mostly endlessly patient with me constantly singing along with the radio when we were in the car – including from beginning to end on at least one 500-mile trip to Indiana, as I frequently punched the buttons to find the best selection of the moment. From time to time I did get asked to turn it down because of the occasional “headache,” but not often. My long-suffering mom, by the way, had been in band, and wouldn’t I like to be in band too? No, sorry Mom, nothing duller to my childhood sensibilities than being one of a hundred people behind instruments – more egotistic boldness here – I wanted to be center stage.
I had been in the school choir for four years by the end of 8th grade, but I was still only at best a very average singer. My high school choir director – Bob Stamback – was legendary in our state for a program beyond the average high school level. Usually, at the end of 8th grade, you auditioned and were placed in one of the two main ensembles: the women’s choir or the mixed-voice choir. But the year I was a rising freshman, there was an unusually large number of freshman women, too many to incorporate into the high school ensembles successfully. Because of that, Mr. Stamback announced we were to have a freshman women’s ensemble. And this decision changed my life.
“Uncle Bob” on a choir festival trip to Tennessee.
There were twenty of us. If you’ve never sung in a choir, when there are twenty voices, there’s nowhere to hide. This started out slightly terrifying, as Mr. Stamback was generally good-humored but serious about our work and rather intimidating, despite being affectionately known to the choir kids as both Uncle Bob and Homer Simpson (see the photo at right and tell me you wouldn’t have coined the same nickname). Once I got comfortable with the fact that he was going to call on us individually all the time, I realized that beyond our ensemble work, we were effectively getting a group voice lesson every day. And at the audition at the end of the year, I actually could sing pretty respectably – and landed a coveted spot in the mixed-voice choir for my sophomore year.
I loved the hour a day I got to spend there, because singing in that group, with the expectations he placed on us, could be massively exhilarating. My favorite piece we did in that chorale was John Rutter’s “Gloria” (a nice rendition of it below) – I remember coming to the end of its 20-minute length in one late rehearsal and sort of “coming to,” realizing my arms were shaking, there was sweat pouring down my back, and I had goosebumps all over – and feeling deliriously happy. There is something very special about that transcendent aspect of singing in a choir, about the end result of putting in the many hours of rehearsal to get each of the hundreds of details of a piece exactly right, and when every bit is perfected, there’s a magic to the unity of the singers’ cooperation that is beyond description. It’s a wonderful thing to feel like you belong in the midst of that and are contributing to it.
Individually, learning to sing from Mr. Stamback is truly one of the greatest gifts I was ever given. Gaining a foothold on that skill boosted my self-confidence, allowed me to begin to match up my abilities to my childhood aspirations and self-concept, and made me feel like I was actually somewhat talented. All of that was enormously meaningful to me. And I just got so much joy out of it, the joy you get out of becoming proficient in something to the point that it starts to become natural and almost effortless.
I used that ability every chance I got. I sang in choir; I sang for myself; I learned to play enough guitar so I could open more performance opportunities that way; I kicked ass at karaoke, and my childhood aspirations stayed alive long enough that I took my singing ability to NYU, where it made me a double threat as a drama major.
But even though I sang every day for many years, it wasn’t until I got sick in 2004 – and suddenly couldn’t – that I realized how important it was to me. When I first fell ill, I couldn’t sing because I didn’t have either the energy or the breath. Singing, I found, was one of those things that would eat up my energy very quickly. It takes a lot of breath to sing well, and if I tried, I would find myself gasping for air and the edges of my vision beginning to dim as my brain became gradually shortchanged on oxygen.
As I improved during 2005, I regained the ability to sing a bit, and for a while it was a barometer of how I was doing with the illness. I’d get a little worse and lose it, get a little better and get it back. But at some point – I think my summer 2006 crash, the one that stopped me commuting to the office – I lost it for good, at least thus far. Once I became bedridden at the end of 2007, another impediment to singing emerged – muscle wasting. If you can’t move around, all your muscles wither away, and that includes your diaphragm, the support of which is absolutely essential for singing.
Because I’m so out of practice and have no diaphragmatic support, I can wheeze out a creaky version of “Happy Birthday,” but that’s about it. I can only hit about an octave’s worth of notes in the bottom to middle of my range. Anything I might essay on the high end is just a shrieky, thin, unsupported whistle.
I said that I didn’t realize how important singing was to me until I couldn’t do it. This was for a couple reasons. The first is more prosaic and was more important when I was still working: Caffeine and I don’t get along, so my usual method of waking up in the morning was singing along to loud music while driving to work.
The other is a little tougher to explain. Singing was not just a creative outlet for me, but a way to deal with stress and emotions – and it was that aspect of it that I wasn’t fully aware of until I didn’t have it any more. I sang to psych myself up for the day, to relax myself on the way home, to deal with boredom, to celebrate when I was feeling joyful, to wallow in depressing music when I was feeling sad, to boost my confidence on difficult days, to sing harmonies to anything and everything because it made me feel like I was putting something beautiful and unique into the world, and to vent along with Elvis Costello when I was pissed off. And that, really, is only the beginning of how I used it. Pretty much anything I needed to deal with, I dealt with partially through singing as catharsis. And I can’t do any of that now.
Truthfully, I can barely even listen to music these days – it’s just one of many things that’s a major energy eater and difficult because of my cognitive dysfunction. When I do, the need to sing harmonies is still overwhelmingly there, but I can’t do it – and not being able to do it, having to just listen and not fulfill that need, is almost physically painful. There’s a profound, oppressive sense of loss. I feel cheated, feel wronged, feel like I’ve had something I earned and was entitled to cruelly stolen from me. I still love music, but because it’s painful to listen to and painful to have to not sing, I’m kept away from it except for at moments when I feel like I absolutely must hear a particular piece, and then I listen at low volume in snatches of a song or maybe two at a time. After decades of collecting music, I’ve lost track of the catalog of many artists I deeply love, because I can’t listen to an album all the way through.
Getting this back would make my life much richer, but it’s so far along the continuum of recovery that I despair of ever reaching that point. I’d need both my cardiac output and my muscle tone to substantially improve to get there. I would probably be well enough to work before I would be well enough to sing again, and getting from 98% bedridden to that point seems profoundly unlikely.
Sadly, I haven’t really found something to replace singing, and at this late date, I don’t expect I will. It was so much a part of my life for so long, and I used it in so many situations, that there just isn’t anything that’s analogous or as universally useful to me. Writing is probably closest, and perhaps the thing that I’ve been doing to deal with life second longest, but as helpful as it can be to put fingers to keyboard, it badly lacks the transcendent beauty of being able to raise my voice and thereby put my cares thoroughly aside.
RT @thrasherxy: An ableist culture that glorifies "beating" and "getting over" sickness has ushered in the grotesque carnival we are going… 2 months ago
I do like to take a picture when we have visitors if at all possible, but it’s not as simple as sitting down and pressing a button.
Now here’s a picture of a bad day – really beyond a bad day into a terrible day. Last summer I ate some suspect cucumbers and gave myself a lovely case of food poisoning that lasted for a couple days. I had recently seen the good day/bad day photos, so I had Chimp snap this one of me.
