The Lace of Life

I was thinking, while we were in Asheville, about Dresden lace figurines. They’re porcelain figurines decorated with very realistic-looking lace, which is created by dipping cotton lace in porcelain and applying it to the figurine. The cloth burns off in the kiln, leaving the ceramic lace behind.

They’re very beautiful, but exceedingly fragile, and not infrequently the ones you see on offer have had some of their lace broken off over time. It struck me that this is a rather apt metaphor for ME. It makes us exceedingly fragile beings, prone to damage from everyday handling, and we have to be extraordinarily careful of ourselves. We’re each to our own extent in pieces, and we have lost to the disease various bits of what makes life beautiful along the way.

For example: The evening we arrived in Asheville, Chimp realized that indigo girls, one of my all-time favorite groups, were in town that night (their facebook page seemed to have been keeping it from me so as not to break my heart). Having to forgo a show I would have surely been at were I able made me think about all the activities we could be doing on that trip if I were well, all the activities I can’t do. And that led me back to the delicate fringes of the figurines, and all the other beauties of life that have gone out of my reach since I fell sick in 2004 – activities they are figured performing. So what is the lace of life? What have I lost, and how long have I lived without it? Illustrated, in order of their disappearance:

family

Is it really safe to have kids that small around this figurine?

Visiting family. Chimp and I used to spend Christmases with my mom and extended family in Indiana, then visit Maryland to see his folks. The last time we were able to do that was 2003; after that, I needed to rest rather than travel over Christmas, so I could keep my strength up to work. Every year we would call my mom’s house on Christmas, be passed among the 20 people there and I would hang up and sob inconsolably. In 2008, technically I was at my mom’s at Christmas, but I was totally bedridden – too sick to leave my bed and be wheeled out to the living room – and all I could manage in terms of seeing the rest of the family was letting a couple people come stand in my doorway and wave.

outdoors

Barefoot trail runners, natch.

The out-of-doors. Back in Virginia, I loved to hike, to run trails in the woods, and hunt wildflowers. When we first came to California from Michigan, I bought a western wildflower guide, assuming I would be able to explore our new state the same way – but I never got to use it. The last time I got out in nature under my own power was during a September 2005 work trip to Carmel. Against my better judgment, I got roped into a tiny hike. I managed it okay, and I got a few nice photos out of it, but the way I felt the next day reinforced my knowledge that it wasn’t something I could do any longer.

Ankles! Scandalous!

Ankles! Scandalous!

Dancing. Before I was sick, dancing brought me immense joy – at any party, I was the first person on the dance floor and often the last one off. The last time I danced was in October 2005, at an evening party hosted by my organization at a trade show. The music and company were so tempting that I couldn’t help but risk post-exertional malaise. The next day, an agency colleague who’d stayed a wallflower, despite me trying to rope him into the crowd, told me how fun it’d been to watch me cutting up flamenco-style with one of our shippers on the dance floor. It was fun for me, too.

concert

Not one phone in the air.

Live music. Ticket and sometimes tour expenses used to be a significant budget category for us. My last live concert was CSNY in Fresno in 2006. I’d seen Crosby and Stills at a benefit show in 1990, and had wanted to see Neil Young forever. I nearly didn’t make it to the show – it was the middle of the 2006 heat wave, our air conditioner had gone out, and we’d had to drag ourselves and our three cats to a hotel. By the time I got to the hotel room I was close to collapse. Against my better judgment, I rallied to the show, with Chimp dropping me off near the entrance. I made it to intermission, practically lying in Chimp’s lap the whole time, and had to be taken out in a wheelchair, missing the second half of the show. I did get to hear the ever-classy Fresno crowd boo Young’s “Let’s Impeach the President,” which was totally ridiculous, given how much money they’d forked over to hear it. But I saw Neil Young, and that was the last of a bunch of big concert checkboxes I’d wanted to mark, though the price was very high – a crash that cost me the ability to commute to the office.

travel

Try to tell *her* she only gets one carry-on.

Travel. Before I fell ill, I had always assumed that Chimp and I would go many places together, between conferences for his work and exploring the places we would move. While I was able to manage some travel for a while, eventually I lost this too. The last pleasure trip we took was from California back home to Virginia so I could be a bridesmaid in my friend Karen’s wedding in October 2006. It was the first time Chimp had to trundle me around in a wheelchair for an extended period, and I barely left the hotel room – when I wasn’t at a wedding event, I was lying down.

party

I know the Batusi when I see it.

Parties. In Virginia and Michigan, Chimp and I were inveterate party throwers. When we got to California, between his department being totally dysfunctional and my work situation not leading to friends in the way it had in the past, we didn’t develop a coterie of possible guests or hosts. So the last non-work-related party I went to was a 2006 solstice shindig hosted by the owner of my favorite vintage store. Her yard was decorated with colorful bowling balls, the charming small house was chockablock with the best sorts of flotsam and jetsam you’d come across if you ran a vintage place, and the guests were as various as the decor. I wore a loud 1960s pink, green, and yellow velvet shift and fit right in. I wish there’d been more moments in California like that.

out to eat

“Is the fennel soup vegetarian?”

Dining out. We went out with a bang on this one. Our last meal out together was the 2007 Fig Feast in Fresno, the night before my 32nd birthday. Alice Waters came to speak at our farmer’s market during the Fig Fest that morning (being an inveterate foodie, this is my sort of “meeting a celebrity” picture) and we had a lovely four-course dinner with her and some hundred-some of our closest friends out-of-doors that August evening at the Chef’s Table restaurant. I could only taste the wine pairings because of alcohol intolerance, but it was still a delightful treat. Between the vegetarianism, the sodium intolerance, and the histamine problem, sadly, even takeout is not an option for me these days.

performing

No karaoke figurines for some reason, so just imagine this is me doing a karaoke version of 4 Non Blondes “What’s Up.” 

Singing. I know I’ve discussed this previously. When my ME/CFS was still in the mild category, my ability to sing was a barometer of how I was doing, and whether I was going up or downhill; I would lose it when I got worse and then get it back when I got a little better. Fall 2007 was the last time I picked up my guitar and sang something all the way through. I can wheeze out a phrase or two, but as my diaphragm has atrophied along with all my other muscles and my cardiac output is low, I don’t have the support or the breath necessary to sing. This is almost as painful as not being able to listen to music – I had sung every day since childhood, whenever I was in the car and along to whatever music I had on at home. It was nearly impossible not to; it was just what I did.

vanity

Before you borrow her face powder, check if it contains white lead.

Getting done up. Fall 2007 was the end of this as well. I went clothes shopping for the last time at Anthropologie in Fresno in September. I struggled exhaustedly through the dressing-room process that day and bought a couple pairs of pants, which I never got the chance to wear anywhere. They’re still in my closet with the tags attached. Around the same time, I ordered a pair of Fluevog boots and then returned them, despite adoring them, because it was clear I was not going to get the chance to use them either. This is also when I stopped getting haircuts. My ability to get ready for the day – the ability to stand long enough to shower and the energy to do so, styling my hair, makeup – all ended with the end-of-year crash. My pressure sensitivity emerged at that point and I switched from jeans and a top at home to All Pajamas, All the Time.

music

This is totally the indigo girls.

Recorded music.  It’s fair to say that I was a music obsessive before I fell ill. Chimp and I have thousands and thousands of CDs between the two of us. I was an early adopter of satellite radio, which was a terrific way to hear new things in the early to mid-00s despite living in an interesting-radio desert, and considered being up-to-date on music to be an important part of my life.  With my late 2007 crash, my ability to listen to it plunged to the degree that it was eventually impossible. At this point, it’s a little better – I can sometimes listen to a song or two at a time, but I am hopelessly out of touch with what’s current, which continually breaks my heart and makes me feel completely uncool.

books

“Oh, just sitting here reading in my 20 petticoats.”

Books. The last time I was able to hold and read a physical book was May of 2008. I tore through Lolita and a couple other novels in one week, and then suddenly didn’t have the energy to hold a book and turn pages anymore. I read books online, where all I have to do is press page down, but there are always things – old and new books – that aren’t available electronically. Given the volume I can read, I hate having to pay for it when I used to be able to go to the library, and I miss haunting used book stores wherever I happened to be.

walk

Winners of the Awkward Neck Angle Contest.

Walking. As I worsened in fall 2007, I tried to keep up with the ten-minute daily walk I’d been taking around our small apartment complex, so as not to become totally deconditioned. But eventually even that was too much – between September and December I went from doing a loop of the complex to doing one side of the loop to doing half of one side of the loop to being unable to walk more than to shift from bed to couch. And I remain pretty close to that.

So considering all this, is it any wonder that I feel as if my lace has been smashed off over the years? I still have love, and a lot of wonderful friends and family, which are the most important things, but even having that, it is hard to live with all these can’ts. I know that lace is just decoration, and from day to day I’m relatively content, but the lack of it is for sure the thing that keeps me going back to Dr. Cheney and opening bottles of new kinds of supplements, hoping each new approach will be the miracle that puts the flourishes and frills on my life again.

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Hindsight

broken mirror redcloud 80

Image by Redcloud80

Living with a disease of unknown etiology is, let’s say, problematic. The lack of a well-defined cause stymies efforts toward a cure, and opens up a gaping void that gets filled, at best, with wide-ranging science, but more prosaically with a substantial amount of speculation, theories, and supplements. This becomes a morass that is incredibly challenging for patients to try to wade through, both intellectually and emotionally, especially because we’re talking about an affliction that includes both cognitive dysfunction and anxiety.

For me, not knowing the cause of my illness is fodder for my tendency toward rumination. Because there’s been no conclusive answer to the question, “Was that why?” over the past nine years, whenever I’ve read something about the illness that contains a fact that’s true of me, it’s gotten added to a mental list of possible hits that eventually – perhaps – did me in. It’s a fairly long list now. Moreover, I don’t even know if all of them were necessary. If I’d missed a few, might I have stayed well? And if there were some like that, which ones were they? After I got sick but before I understood the illness well, I did some dumb things I wish I could take back. Reflecting on all this is a habit that’s unhelpful in improving or curing me and has the side benefit of letting me feel guilty about things that are impossible to change.

So, my history of “if I had known then what I know now” moments -

  • My father was diagnosed with Stage IV Hodgkin’s disease in 1978, when I was  three. He had enlisted in the Navy more than a decade before I was born, and a later study in which he was included found that people with his job (machinist’s mate on nuclear subs) had double the average risk of developing Hodgkin’s. The cause was theorized to be exposure to solvents, metal dust, or radiation. He survived it, but went through 21 rounds of chemo and two additional recurrences before entering his most recent remission from it in 1982. I wonder if I have some of the same genetic chinks that he has, or if those exposures contributed some still-imperceptible genetic damage.
  • He (my dad) is an engineer by training but also a gifted artist and excellent with his hands. When I was small, he built a wonderful set of cubby shelves that occupied one wall of my room. They were made of particleboard, and I wonder if the long-term exposure to so many square feet of it offgassing – not something that was generally worried about at the time, but certainly a problem for me now – influenced my health.
  • I was not an athletic child – I was always the second slowest (generally right in front of the class’s overweight kid) when we had to run long distances in P.E. Likewise, during my couple years of youth soccer, I was always placed at left fullback, because I could haul off a good sprint but had no endurance. In later years, at summer camp, I was perennially at the back of our mountain hikes, with the counselors doing sweep exhorting me to push and me struggling to keep up. Was I just terrible at these things because I much preferred to read books and do crafts, or did I have some minor mitochondrial or other issue that contributed?
  • I had terrible enamel – my childhood dentist told me it was hereditary – and had 10 fillings by the time I was 18, most of them amalgam. (Weirdly, besides one that developed under an old filling, I’ve had no cavities since then.)
  • I took Ritalin for a number of years for ADD – did years of stimulants affect my growth and development in such a way that made me vulnerable to illness later?
  • I was always prone to side effects, even with OTC meds. Was that an indication of sensitivity/metabolic issues that someday we’ll understand as an early warning system?
  • Chimp, whom I met in 1997, had juvenile rheumatoid arthritis that segued into ankylosing spondylitis. There is some research that indicates that viruses may influence the development of those conditions. Did I catch some immune-influencing stealth virus from Chimp that caused AS in him but something entirely different in me?
  • One night in April 2001, I went to bed with clear skin and woke up the next morning with sudden, terrible acne. What tipped in my body at that moment? Were there hormone issues that, if they’d been understood, could have kept me from heading down a path of chronic illness?
  • Despite my misgivings about resistance, when the acne hit, I let a dermatologist put me on antibiotics for some months until I could get someone to take seriously the idea that my acne was hormonally motivated. (I was diagnosed with PCOS the next year and given anti-androgen treatment.) I wonder if this decimated my gut flora and thus opened some hole in my immunity that would not have otherwise.
  • When we moved to Fresno in 2003, we found out after moving in that our apartment complex had roof rats. They ate the peppers and tomatoes off our plants, scampered along our gutters and inside our roof, and left piles of droppings in our garage, where our car was, the car I spent an hour and a half commuting in a day. They’re not known to harbor any diseases harmful to humans, but if there is a hidden virus that causes ME/CFS, and we don’t know what it is yet – maybe they carry it.
  • Early in the diagnostic process in 2004, I underwent a stress test. I still had enough remaining fitness that I was able to make a pretty good showing, but afterward, it took two hours for my heart rate to come back down to normal. I was surprised and didn’t understand why that happened. I asked the cardiologist and my GP about it, and neither of them had any explanation for me. That, in retrospect, seems really dumb – it is obvious to me now that I was sick and my heart was saying so in the form of post-exertional malaise.
  • Another thing I didn’t understand early in the disease was the frequent dizziness and vertigo I suffered, with the world pitching and yawing around me. I tried to figure out what activities in particular were causing the dizziness, because it seemed like sometimes it showed up when I had overdone things, but I know now that it’s just a symptom of the illness, and overdoing it was what caused it to worsen.
  • I’ve mentioned this before: I didn’t know how to find an ME/CFS doctor early on (and I didn’t think having one was important, because there not being a cure, I didn’t think there was anything they could do for me), and as I’ve mentioned before, I wonder if early intervention might have resulted in me being less disabled than I am now.
  • During the summer of 2006 I had a terrible crash and was no longer well enough to go to the office every day. My employer was willing to have me work from home, but only if I went to being a contractor, because they didn’t want to deal with other people asking to work from home (this had happened once before). So I went to contractor status, and in the process, of course, dropped my disability insurance coverage, which was through my employer. I already knew I wouldn’t be able to get any privately, but I figured I was going to work from home a while, regain my strength, and go back to being a direct employee. Things didn’t work out the way I was expecting. By the end of 2007 I was bedridden. I don’t know if I could have gotten the disability insurance to pay out in 2006. I kind of suspect not – I was mostly housebound but could still make it around the supermarket and such. I had to spend another year and a half running myself into the ground before I think I really would have qualified for disability.
  • I will always wonder what would have happened if I hadn’t pushed it so much, for so long. Would I be where I am now? No way to say, and there was nobody in my world who knew these things to warn me then…

I know I’m not alone in this kind of thinking. What are some of the moments like this in your life?

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Good Days and Bad Days with ME/CFS

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.

good day 2013I 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.

bad day 2013Now 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?

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Histamine Sensitivity and ME/CFS: A Plan of Attack

The troublemaker.

The troublemaker.

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.

Posted in ME/CFS | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | 11 Comments

Prandial Problems

bunny jello mold

Pretty close, although not the exact one.

I hated my mother’s bunny jello mold.

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 close to the finished product.

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 Jungle around 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.

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 meatThat 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.

Posted in Life Before, ME/CFS, Uncategorized | Tagged , , , , , , , , , , , , , , , | 32 Comments

My Worst Year: Theda and Thomas and Me

Trigger warning for discussion of suicide.

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.

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Inch by Inch

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.

***

spring_garden

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.

***

summer_garden

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.

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