Roller Coaster (of Health)

At the moment, I’m doing the best that I have since 2008. I went into the pit again before getting here, though, from an unexpected cause – intestinal parasites. Two of them.

2017 and most of 2018 were good. For Christmas 2016, I received the fancy bread machine I’d wanted for two decades, and in addition to making loaves of bread for Chimp, I started up a hobby of making cakes using its cake cycle, for which I could manage the measuring on good days. I improved to the point that in addition to being able to get from bedroom to dayroom in the morning and back in the evening, by mid-2018 I could walk to the bathroom pretty much every time I needed it. In summer 2018 I was able to walk out into our garden to harvest a few days a week.

I also spent 2017 and 2018 slowly reducing my sleep medications. I was eventually able to drop back to taking just one round of them and I had reduced even that a lot.

I felt like I was getting very close to being able to refer to myself as housebound rather than bedridden, though the duration I could be upright was still very limited. And then –

In the early summer of 2018, I had a little bout of what was probably foodborne illness. It caused me to lose a couple pounds, which I put back on during July. After that I started losing weight.

At first the change seemed like normal fluctuation, and I was fine with it – I had wanted to lose two pounds anyhow.

But then my GI tract kept misbehaving and my weight kept falling.

In the late summer and fall, I got several infections in a row that each required antibiotics – four courses over four months. I had a UTI, followed by a skin abscess, an abscessed tooth under an old filling, and then a mysteriously infected finger.

Thankfully, each infection was knocked out in succession (and for none of them was a fluoroquinolone required; I’ve still never taken one), but that was a lot of drugs that are tough on me in a very short time. And while the UTI and abscessed tooth were explicable, the two skin infections added to that were surprising.

Then, after the antibiotic carpet-bombing of my gut, my digestion became a lot touchier. At first that, too, was unsurprising – but matters didn’t settle out like they should have.

As all this progressed I began having trouble with my heart rate, despite my long-acting beta blocker. I started using my additional rescue beta blocker, but that kept me from sleeping.

My sleep – those of you who’ve visited me here before knew this was coming, I’m sure – had already started going to pieces. I started ramping back up all the hard-fought dosage reductions I’d made, but even that was no help.

Meanwhile, my weight kept going down, despite having boosted calories a lot.

By Christmas I had lost fifteen pounds, getting down to 102, which was six pounds lower than it’d ever been at my adult height, and I was back to being really bedridden again, only able to get up for the commode. On the morning of Christmas 2018, having not slept well for nine nights, I woke up with my heart in some low-grade tach, and we went to the ER to see if some fluids would help me sleep, as it sometimes has in the past. It helped a little.

By the time first of 2019 rolled around, I had been knocked so far down that I wasn’t able to be on the internet more than a few moments a day and I couldn’t hold a book – all that bad territory I’ve been over before, more than once.

To add to the difficulty, there was the doctor shuffle. While I don’t need to mention many of the doctors more than once, I’ll give each one a pseudonym, because there are several involved.

The GP I’d had as long as we’ve lived in Pennsylvania (Dr. Optimal) had left the area at the beginning of 2018. With their departure, the practice had given me to one of the residents (Dr. Resident). This was okay when I was okay and only needed medication refills, but as I started to go downhill, it was clear that person was utterly out of their depth with my case, and being a resident, having to clear everything with a supervising doctor (Dr. Supervisor) meant there were two people I had to convince of the merits of anything that needed doing. This did not go well – I lost my temper unbecomingly at one appointment when Dr. Resident was not permitted to prescribe recommended therapies for an ME crash that I’d brought documentation about from Dr. Cheney.

After that, I asked to be moved to one of the supervising doctors. I asked to be moved to the person I did because that supervising doctor had sat on the independent review board at the college where Chimp teaches, so Chimp had interacted with them some.

That person, whom I saw a few times in early 2019, turned out to be a terrible fit (Dr. Badfit). As I deteriorated, they essentially ignored me, for reasons that became clear only later. But at the time, with no help coming from the avenue it should have been, we started looking for other ways to find out what might be wrong.

Now, why wasn’t I calling on Dr. Cheney in this? I hadn’t seen Dr. Cheney in several years, not since he’d gone into full retirement for a while because of his own health, so he couldn’t treat me. But given the picture I presented to him over email, he suggested a comprehensive digestion function test, the GI-MAP from Diagnostic Solutions, which he thought might turn up answers. He also thought a SIBO test would be worthwhile.

I discovered that in my state, it was legal for a dietitian to write orders for such tests, so I found a dietitian online who consults on digestive issues and was able to write an order.

Waiting for the kits to arrive to us, return to the labs, and for the results to arrive took a few weeks, but it seemed to take an age, given how precarious I felt.

In the meantime, having noticed that I slept much better the night after I ate the very restricted diet required for the SIBO test, I decided to shift what I ate to try to give my obviously-beleaguered gut a break. I started on a FODMAP plan, giving up my beloved legumes and a lot of favorite vegetables (honestly, nearly every vegetable is my favorite vegetable). The FODMAP approach seemed to help my digestion right away, so I stuck with it.

To feel like I was doing something until I could get some proper meds for whatever was going on, I added mealtime betaine, upped my digestive enzymes, and started l-glutamine and taurine at night, which are both supposed to help with intestinal permeability.

We got the SIBO test back first. It showed elevated methane, but not hydrogen. That didn’t seem like much of an answer, given how much worse my gut was than it had once been.

Then I got the GI-MAP back.

I was absolutely loaded with microsporidia – the GI-MAP looks for Encephalitozoon intestinalis – and was also supporting a substantial colony of Cyclospora.

As all this was going on, Dr. Badfit announced they were leaving the practice and the area, which explained but certainly didn’t excuse their having ignored me. Their departure was fine with me, as in the last appointment I’d had with them, where I was writhing with gut pain, hadn’t slept well in weeks, and was pleading to have my fifteen-pound weight loss taken seriously, they said that they thought I was taking too many drugs and if I continued to see them, implied they wouldn’t be willing to continue to write my sleep meds. An angel of an administrator, who we suspect had noticed how badly I needed a change in treatment, called us as soon as the news of this doctor’s departure broke and moved me to a doctor she’d hand-picked for me.

This doctor (Dr. Goodnew) was a younger person, who had not treated microsporidiosis before. They weren’t comfortable prescribing the drug used for it, albendazole – it’s considered heavy artillery, necessitating liver checks beforehand and along the standard ten-day course – so they referred me to an infectious disease specialist in Pittsburgh. I was able to get an appointment with that person sixteen days out, in the middle of March, which felt like another absolute age.

The infectious disease specialist was not convinced that microsporidiosis and cyclosporiasis were the problem. In the U.S., microsporidiosis has historically occurred in immune-compromised populations, notably people with AIDS. As the appointment progressed, I felt a sinking feeling that despite the information I’d brought on ME’s immune problems and gut vulnerabilities, this doctor (Dr. Skeptical) was not going to prescribe the anthelmintic – and then, when I had just uttered a beseeching “…but fifteen pounds…” at the last moment, they did. They wrote an antibiotic for the cyclospora as well, which was one that I’ve taken before and tolerated.

It took another several days for our pharmacy to get the albendazole, which was what I wanted to begin with, as the GI-MAP indicated my burden of microsporidia was the greater. When we had it in hand, I started with a chip the first night, in case of a strong negative reaction. Not getting one, the next day I took three-quarters of the standard dose. I intended to ramp up to the full adult dose, but looking at the child dose per kilogram and considering where my weight was, I wasn’t able to overcome my anxiety about overdosing myself to do so.

At the halfway point of the course, which happened to be on a Friday, I went to have the blood draw done. My liver markers had gone up, but they weren’t in the elevated range, and my neutrophils had dropped by more than 40%, but weren’t in the depressed range. Not being able to get an answer on a Friday afternoon as to whether I could expect those numbers to hold or continue to worsen, and because I was feeling markedly worse that day, despite getting enough sleep, I decided to take the weekend off the drug. I felt better as it left my system, and I ended up not restarting it.

I felt a little better almost immediately after that five-day course. A couple weeks later, I repeated the GI-MAP test. It showed that the microsporidia, which I’d taken a drug for, was gone, and so was the cyclospora, which I hadn’t – I’d wanted to wait a bit and be sure the antibiotic was necessary before bombing my gut again, and it turned out not to be.

The last week of May, my mom and Chimp towed me down to North Carolina to see Dr. Cheney. I was still wrestling with my heart rate.

I had added some calcium earlier in the year that had seemed to help my heart rate some, but I didn’t start making significant progress on getting the heart rate back where it should have been until August of that year, when I switched back to my old beta blocker, metoprolol ER. When metoprolol ER wasn’t keeping my heart rate down in the early part of the year, Dr. Badfit had moved me from metoprolol ER to carvedilol. Not being an ER type, that meant that my heart rate see-sawed over the course of the day. I asked to try ER carvedilol, but it turned out that the practice thought prescribing ER carvedilol should only come from a cardiologist, and in no form did I feel prepared to add to the circus a cardiologist, who undoubtedly wouldn’t be familiar with nor likely believe in the heart issues in the illness. When I saw Dr. Cheney in May, he said he preferred metoprolol ER and he didn’t want to switch me to carvedilol ER either.

It took me until the end of July to steel myself to switch back to the metoprolol ER, despite having taken it for a decade previous, because carvedilol had seemed to help with my sleep more than the metoprolol ER had historically. I became convinced that as the metoprolol ER hadn’t kept up during the worst of the downturn, it might still not be up to the job of keeping my heart rate down – and that switching might foul up my sleep. Switching means three days while the other drug reaches a steady-state level to see if it works, and the idea of spending most of a week on changing to and back if it *didn’t* work, which would surely knock me back badly if it didn’t, was not something I could convince myself to try for a while.

When I did switch back, it went fine and I wished I’d done it months earlier. It took a month for my heart rate to settle into a significantly lower normal, though – I think it’d been see-sawing so long that it took time for me to heal from the stress of that.

Shifting back to the metoprolol ER turned out to be the last piece I needed to really start to make some progress. Within a month of making that change – you people with ME know that’s light speed – I’d made my first post-parasite bread machine cake.

Since last August I’ve made good progress. I think I’ve probably reached what is the possible functional ceiling for me for now, one that was established by the 2007 crash that ended my career. But that’s much better than where I was, and there’s much to appreciate where I am at the moment.

I can eat a broader diet. Getting my gut to accept more foods has been a slow process. I stuck with the FODMAP plan closely for about eight months total. Every so often, I would try some food I used to consume without a problem and it’d be one. September of 2019 was the first time that I tried that and it wasn’t an issue. At that point I was able to start expanding my vegetables a bit, but it wasn’t until spring of 2020 that I got the courage up to slowly go back to legumes. They had not historically been difficult to digest for me, and that tolerance appears to have returned, much to my happiness.

I’ve gained the weight back too. I weigh about 123 at the moment, which is six pounds up from where I was before all this began, and I think my caloric absorption is as good or better than it has been the entire time I’ve been ill. Some of that is probably the supplements I added to help my gut while it was struggling so much, but given how much difference getting rid of them has made I wonder how long I might have been carrying those deleterious actors around.

At the moment I’m able to get together my own breakfast (heating up frozen fruit in a pot, spooning out yogurt) and lunch (heating up something in a pot and/or spooning out a salad).

A lot of the time what I heat up for lunch is something I’ve previously cooked – I’ve been able to return to some simple cooking, like making a pot of legumes or a cooked vegetable salad once a week.

Being able to cook a little again has impelled me to take my food blog out of the mothballs it’d been in for a long time. My goal is to post once per month. I’m not making that goal so far, as I have to wedge the multiple trials of a recipe required among everything else, and my recipes don’t tend to be simple, so most of them take me multiple days, but it’s lovely to be able to work on recipe development a little again.

Another change that this improvement has brought is increased self-care. I’ve been able to begin bathing myself without help for the first time since 2008. All that time, Chimp or my mom had been helping by setting up for me, washing my hair, and putting the bathroom to rights afterwards. Now I’m doing my own bathing. It is a big energy expenditure, and I have to limit what else I try to do on the days I bathe, but it’s very pleasant to have a bit more independence in that regard at the moment. It is lonely in there, though – I got so used to having someone else wash my hair that it’s strange not to have conversation while it’s happening.

I’ve also found that I’m able to get by with less sleep than I absolutely had to have for a long time. At the moment I’m doing okay with somewhere between seven and eight hours, when for years I felt wretched if I didn’t get nine, and at some points unless I got ten. It is an enormous gift to get a couple hours more consciousness per day.

Lastly, I’ve finally been able to see, in person, all the rooms in the house I’ve lived in since 2009. Before this year, I’d never seen the laundry room, workroom, or garage except in photographs. Now I’ve had a tour of the basement and seen them all. I’ve even carried down and started some laundry once or twice.

I suppose this notable improvement post-parasite treatment is probably leaving some readers with some of the same questions it’s left me with.

Why have I made improvement now? My theories are these:

1. I’d been carrying around the microsporidia and/or cyclospora, and it’d been crippling me, a lot longer than I realized and it only got completely out of control and obvious once I had those several courses of antibiotics in a row in fall 2018

or

2. The microsporidia and/or cyclospora were relatively new and the repeated infections were because my immune system was trying to fight them, and not succeeding, and the gut supplements are what’s helping – just because I’ve long needed them. Perhaps I’m getting better absorption, thus just better nourished, and my body’s not struggling along with marginal nutrition.

Of these two, I lean toward #1. Given that a bad case of what seemed to be food poisoning that I had in 2004 was one of the precipitating events in my becoming chronically ill, and that I lost fifteen pounds as soon as I got sick, I think it’s possible I’ve been carrying one or both of the parasites around for years. But that’s not a wonder I’ll ever be able to answer now.

If I had two intestinal parasites, and I’ve improved now that I don’t have them, do I still have ME? Yes, I have no reason to think I don’t have ME. I still have post-exertional neuroimmune exhaustion, orthostatic intolerance, sleep difficulties, brain fog, myalgia, thermoregulation problems, the kit and kaboodle I’ve long had. I will say my light and sound sensitivity are not as severe as they have been, but even that’s not normal as compared to before I fell ill in 2004.

Where did I get the intestinal parasites? There’s no way to know for sure from what I picked them up, really. I do eat more produce than average, so my aggregate risk of a produce-borne parasite is likely higher than average. I did discover, while reading about microsporidia, that they’ve been found on some items I have regularly consumed in the past – herbs, strawberries, raspberries. But many others eat those too and don’t apparently have this issue.

Am I doing anything differently to prevent getting parasites again? Because there’s no research on microsporidia and cyclospora in ME, I don’t know if I’m especially vulnerable to them or just unlucky. I’ve made some changes to my diet, attempting to add a kill step before consumption to everything. This isn’t fun – I do miss raw vegetables and fruit out of hand – but for now it’s what I feel safest doing.

 

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On the Opportunity of a Pandemic

I know what we’re all going through is hard, and that there are financial limitations, family obligations, and other reasons that make it harder for some than others.

I’ve posted several opinion pieces on this topic to my friends on facebook, but I want to say it in my own words: If you’re struggling with the difficulty of being homebound or not knowing when these restrictions are going to lift, remember that your disabled friends whose lives were like this before and will be like this after are in the audience.

I don’t say that to discourage expressing one’s frustrations but to say that if you can, please take this moment as an opportunity to figure out 1. ways to find meaning and purpose and enjoyment in a changed life and 2. ways in which the world could be better adapted to such changed lives.

Those of us who are disabled are old pros at versions of this, and have something to teach on how to cope when life goes on under massively altered circumstances.

We still have value, and we have special expertise here, and I’d encourage looking to such people as examples and the information compiled by the disabled community as a useful resource as you try to find your way through this time.

However, not all the challenges we’ve experienced as disabled people and knowledge we’ve gained thereby need to exist. Now that many others are going through an analogous experience, “pandemic rules” mean adaptions and opportunities are being made available that weren’t before and that have removed some barriers.

But some barriers will remain, and now that many people are having congruous issues, my hope is that those barriers will become more visible and the will and means of dismantling them might follow.

Because while there will be an end to this pandemic and the conditions it’s imposing, most of us, if we live long enough, will be disabled at some time – or eventually. Think of this as a trial period, which you can cancel, for that future date, and consider how you might make the days after that future date better – for yourself in that eventuality and for everyone else who must live it.

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Oops! I Forgot I Had a Blog.

imageThat is my favorite fake excuse for abandoning you that I’ve been able to come up with since I last posted here two years ago. The truth, of course, is that much more prosaic and usual reason why you stop hearing from an ME/CFS blogger – I just got too sick to write.

I had a terrible crash in summer 2014. I got a UTI, which would not respond to d-mannose, and by the time I got antibiotics – that process having been held up by my doctors office insisting on doing a culture (which turned up nothing useful) – it was worse than it might have been it it had been intercepted earlier. Then the serious trouble began: the antibiotics destroyed something in my intestinal flora that was allowing me to sleep. Suddenly, the sleep cocktail I’d been taking for years was completely ineffective, and I fell to zero to three hours of sleep per night. This started in late July and continued until Halloween, when I discovered purely by accident that shifting the dosing of my vasoactive intestinal peptide from orally to nasally set my sleep back on track.

But by that point I had gone three months with almost no sleep, losing an enormous amount of ground. I could no longer walk from room to room or to the bathroom, could no longer get to the kitchen to get a meal, could no longer stand for even as much is the very short amount of time I’d been able to, and could barely sit up.

Chimp begin to have to transfer me from room to room in my wheelchair, and my bathing had to be converted from a rather expedient affair to a very hurried and brief scrubdown, so that I could get back to lying down. I was again on the cusp of losing being able to bathe in the tub. Because of the extended stress, I was so weak and things were were looking so bleak by the end of October that I had asked Chimp to speak to the friends I wanted to have read and sing at my memorial service.

So I was once again marooned on my bed, or on the couch in the dayroom, able to do little more than lie there. The lost ground worsened everything, as crashes do – light and sound sensitivity, ability to converse, pressure sensitivity – and along with it came a new symptom: electronics sensitivity.

I will confess, with some definite shame, that I thought electronic sensitivity sounded sort of made up before it happened to me. I know; someone with an invisible, misunderstood, and mistakenly-denigrated illness should be more open-minded. I had experienced electronics sensitivity previously myself, even – when I bought my first cell phone, I quickly discovered I experienced a localized burning sensation if I tried to keep it on my person, and during an MRI when I was newly ill, I was able to feel what is called “tissue heating” and thus able to track the progress of the beam around my head.

Before the 2014 crash, I had begun to become intolerant of my external hard drive and anything plugged into my computer’s USB ports – I would feel a numbing, tingling buzzing sensation in the parts of my body nearest the offending device. As the crash progressed, the intolerance expanded to my laptop itself; using it produce the same numb, buzzy feeling, and when that feeling is applied to my head by a device being too near it, it makes my brain feel like scrambled eggs. Hoping a smaller device might be better, we accepted a used iPhone we were offered. That proved little better, and my ability to access the Internet dwindled to a few moments a day. (We have tried EMF-blocking cases, which as far as I can tell do nothing.) I’ve also developed problems with lots of other powered items – lights, the dehumidifier, the washer and dryer, etc.

On October 31st, 2014, my sleep started coming back together because of the VIP, and since then, I have been trying to regain the ground I’ve lost. In the midst of this, in February 2015, we had to have our house remediated for mold. We don’t believe that there was a mold problem when we moved in – that belief is partially founded on how much I improved from when I came here in 2009 up to the 2014 crash. The basement had been recently finished when we moved in, with insufficient care taken to isolate the wallboard from the foundation (which of course we had no way of knowing from looking at it), and over time the drywall suffered. We had to clear out for a week for the demolition and remediation to be done. In the process we had all the carpet torn out as well.

By the time the remediation was happening, I had improved enough that I was able to read a book a few minutes a day. For many years, my primary entertainment was reading electronically all day long – the web or books on the web. Being unable to use electronics, I had to return to lower-tech means of filling my time. I set myself the goal of reading the entire Bible; I’d never done so and I wasn’t convinced at the time that I was going to be around long enough to have a lot more chances to do so. So very slowly – in the few minutes a day I could concentrate and support part of the book – I read the entire Bible – twice – including the extensive study notes in the version I acquired. By the time I finished it, I had started to be able to concentrate longer and support a lightweight book. I went on to other books, setting myself a goal of reading the 80 books I had not read on the Goodreads list of the top 100 books of the 19th century; I read a total of 100 books in 2015.

But reading – input – was one thing; output was quite another, outside of my ability. All of what came along with the crash meant I was just not well enough to write for the blog. I had to save all of my energy to support my day-to-day function, and lacked the energy to sustain my ability to concentrate and organize my thoughts enough to compose. Plus, I couldn’t type, lacking the electronics tolerance and the energy to do so. (I’m still not typing; this has been composed partially on paper and partially by dictating it into my phone.)

Two years later, I have mostly but not entirely regained the lost ground. I can sit upright for 20 minutes if I push it, and I can get something from the kitchen from the dayroom if I need to, but I’m not up to preparing my own meals or walking out into the yard as I used to be a few years ago. I hope those things will come in time.

As for what has helped me recover from this disaster, I’ve been taking vasoactive intestinal peptide and BodyBio phosphatidylcholine for two years, more or less, and I believe that those items have been crucial to my recovery. I also gave up my vegetarianism after decades and now eat some chicken and use fish oil. Both seem to have helped.

These last two years have been strange, time-wise. The recovery has taken so long, but it seems like the crash just happened a minute ago. When things were falling apart due to the UTI, I thought they might come back together in a couple weeks, but I really underestimated how much damage could be done as fast as it happened.

Let’s end where we begin: Am I going to come back to the blog? I suppose in order to do so I need to feel like I have something to say, and part of me feels like I have already said everything useful I have to say about being sick. It’s different than the recipe blog or the personal blog I used to keep in that way. I do have some thoughts about not writing, and perhaps, ironically, I need to write those down as well.

I deeply appreciate all of you who have sent me messages and stuck with me on the blog’s Facebook page. Thanks for not writing me off then; likewise, don’t write my blog off now – not just yet.

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Black Dress Day 2014

black dress dayHow to accomplish a Black Dress* Day photo for severe ME if you have severe ME yourself and are 98% bedridden (may not be possible for all such folks):

  • Use a morning’s energy to try on three dresses. Pick one that will camouflage the wasting of your arms somewhat. Your legs there’s nothing that to be done about.
  • The next day, have husband bring you your makeup. Apply, shoddily and awkwardly, while lying down, the bare minimum you consider presentable. Pull your hair out of its standard messy bun and run a brush cursorily through it.
  • Not having the energy to take a decent selfie, have husband set tripod up.
  • Meet in living room.
  • Don dress and shoes.
  • Stand up for 20 seconds. Hold on to something to prevent falling over. Try to smile.
  • Sit down, winded.
  • Remove dress and shoes. Replace with usual pajamas.
  • Wash makeup off.
  • Lie back down with muscles weak, having expended approximately 1.5 days worth of energy.
  • Be grateful you could do that much but concerned that doing so will give people the wrong idea of how functional you are.

*I was never so into solids and always into prints, so it’s a print you get from me.

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The Body and My Body


If asked to guess what holiday is hardest for me, I don’t think Independence Day would top most people’s lists – but it is.

Maybe when I say that, though, it comes into focus – really, you couldn’t design a holiday with traditions that are worse for people with ME/CFS.

  • Light, sound, and motion sensitivities: bang.
  • All that grill and firework smoke: terrible.
  • Drinking booze in the sun: out on both counts.

But while that’s all true, that’s really not the center of it.

The first part of it is the way it’s commemorated – it’s less a strictly family holiday and more of a community one. Instead of gathering in one’s ancestral home, as for Thanksgiving or Christmas, there are neighborhood potlucks and watching fireworks with dozens to thousands of your closest friends. And all of that is a problem.

While you can scale down Thanksgiving or Christmas, it’s much harder to bring home the pleasant surprises of a big potluck picnic or of ogling a grand patriotic display for just two people. And because it’s of more patriotic and of generally less personal and familial consequence than Thanksgiving or Christmas, the celebration tends to be more catch as catch can – the parade of children on decorated bikes is observed, flexibly, with whoever shows up to the party. Because of that, people don’t tend to reach out to those who don’t participate in their round of revelry. If you weren’t able to show up to drink vodka out of a watermelon, it’s generally assumed you were drinking vodka out of another watermelon somewhere else.

There are no Independence Day cards, is what I’m saying.

But even that is not the full extent of the motivation for my personal patriotic pity party.

For six summers, I went to the world’s best summer camp. I know everyone who went to summer camp and does not think their camp was the worst thinks it was the best, but I’m pretty sure I’m objectively right about this. My camp is so beloved that it was widely understood that instead of being homesick at camp, we were campsick at home. My camp, in all honesty, is right behind my family in terms of shaping my thinking and life choices. My camp, if I’ve done any good in the world, should get a lot of the credit.

shrine postcard

This is a postcard featuring the Cathedral Shrine of the Transfiguration, the open-air cathedral at Shrine Mont built of local stone, where our nightly worship was held.

St. George’s Camp is nestled into a ridge near the Shenandoah Valley. It’s one of the camps held at Shrine Mont, a retreat center of the Episcopal Diocese of Virginia, but it’s a whole lot less Jesus Camp and a whole lot more Hippie Christianity in the Woods.

St. George’s is based on what we call “The Body Passage” from I Corinthians 12. (Here’s the passage, which is important to the rest of this entry.)

The first afternoon of a St. G’s session, the camp meets for a singalong. During this gathering, two major things happen. First, you get a demonstration of how to hug properly. This is not a Puritanical “leave room for the Holy Spirit” side hug – this is full-contact hugging, no A-frame hugs allowed, and there is the dispensing of very scientific information about how human beings need at least twenty hugs a day for good health. You can accomplish that before breakfast at St. G’s, but nobody stops there.

The second part of this gathering is the counselors dramatizing the Body Passage, beginning with one person, then each of them gradually joining into an animated, busy whole that illustrates the Body of Christ working together as a harmonious sort of Rube Goldbergian machine, and demonstrating with motion the uniqueness and vital importance of each person. Then, as a whole, they show how the Body is affected positively (with delighted, exaggerated, happy sighs) and negatively (with flinching, moaning, and recoiling) by something that affects any part of it.

As a reminder of the lesson, your cabin counselor – an inevitably rock-star-cool college student – ties onto your wrist a “body string.” From all appearances, this is a length of anonymous nylon cord, but because of the atmosphere of camp, it becomes approximately a magical talisman, representing the expectations, happiness, wonder, togetherness, joy, nurturing, and adventure of the place.

So you and all of the counselors have these cords on your wrists, and those expectations that I mentioned are in front of you. Over the course of the session, the work the camp is charged to do is to become more like the Body of Christ – to be more welcoming, inclusive, loving, gentle, kind, generous, thoughtful, helpful, and supportive than where it started, and to recognize one’s own and others’ gifts of the Spirit.

This sounds hopelessly utopian and hippy-dippy, I know, and here I’m telling you it’s being asked of children starting at age eight, and worse than that – teenagers. Surely kids that young don’t get this, right? They do. Surely teenagers in all their moody, cliquish, angsty glory are going to reject this outright or pay lip service to it? Simply? No. The culture of St. George’s is to ask for the wholehearted, idealistic best of you, and it’s almost impossible not to be carried along by the buoyant, sincere spirit of the place.

stringsenmasse

My best friend Karen wearing the strings our last year of camp. Still one of my favorite photos I’ve ever taken.

If there comes a point in the session where the staff feels the camp has made significant progress toward becoming more like the Body of Christ, that’s recognized at announcements time and is a hugely anticipated and joyfully celebrated event. After the announcement, the body strings are taken from everyone’s wrists and tied into one long chain, with the ends open, to represent that all are welcome into the Body. The chain is coiled into a chunky necklace, and over the next few days each member of the camp wears the strings en masse.

On the last day of camp, during the final worship service, the disassembled necklace is once again passed to the counselors, and each camper again has a string tied around the wrist. This time, it serves as a reminder to carry the spirit of camp out into the world.

The camp doesn’t make it to the necklace stage every time. The year I was 14, there was a problem with kids coupling up in boy/girl pairs – being what’s called “exclusive” – and that is very anti-Body. It wasn’t most of the camp, but it was enough to keep the strings from being tied, and when we didn’t make it, we knew we’d let both the staff and ourselves down badly. Most of us had two summers left at that point, and made sure we tied the strings both times, having given ourselves a terrible example.

strings

Well-loved body strings.

I wore my strings year-round for many years, not only as a witness and a reminder to take camp out into the world, but as tangible personal reassurance. To feel them on my wrist, to tighten the knots, to neaten them against each other was to remind myself of my value, and that there was a place of refuge in the world where I knew I was totally accepted and absolutely belonged.

I have said many times that I wish I could send the entire world to St. George’s, if it could be made culturally appropriate. Perhaps naïvely, I think the world would be a much better place if we all had regular reassurance that we belong to each other and are accepted just as we are.

The last summer I was a camper, there was a discussion session titled “Is There Life After St. G’s?” The title was hyperbolic, but that we were about to be cast out of this deeply treasured idyll was enormously emotional – there were floods of tears at every turn. I look back at the years immediately after St. George’s in my life, and I see how I tried to fill the void it left in my sense of belonging. Every group I joined, I hoped would turn out to be as loving and supportive as camp had been, and despite wonderful friends and the many hugs I was known for dispensing, unsurprisingly, without the culture, I didn’t find a replacement. When I couldn’t replace it in groups, I see how I attempted to do the same with individuals, and that failed for a long time too.

I hoped to come back as a counselor, an aspiration staff had encouraged me in. In preparing to write this entry, I pulled out my “stroke sheets” and camp newspapers. Stroke sheets are compiled within your cabin – you get together one evening, and each person receives a piece of paper with her name at the top. The sheets are passed around the circle, and each of your cabinmates writes about your talents and good qualities. The camp newspaper serves a similar function outside your cabin – you can pass it to anyone you’d like to have put down what they admire about you. My last year’s newspaper is signed by a bunch of staff, and almost to a one, they make reference to me coming back to be a counselor.

With that in mind, during high school I helped my dad teach Sunday School, volunteered during VBS, learned to play guitar, and took a summer job at a children’s theatre. But my home congregation was so completely unlike camp – it felt a lot more focused on the don’ts than the dos of Christianity – and was on the opposite side of things that I eventually realized I just didn’t believe were wrong. I stewed increasingly angrily through sermons, and around the end of high school, counted myself as having lost my faith. With that, I sadly set the idea of counseling aside.

Looking back, it’s easy for me to see that I might have been able to find another church or denomination where I wouldn’t have felt as if I were butting my head up against the entire doctrine, but at the time, camp and my very conservative Episcopal church were the extent of my experience with Christianity. Camp was only twelve days out of the year, and after I turned sixteen, no more. I decided, with immense regret, that as wonderful an experience as it had been, I had to leave it behind. But in retrospect, I think my loss of faith might not have been the stumbling block to counseling that I thought it would be.

body plaque

A plaque of the Body Passage made with the bottom of a soda flat, sticks, body string cord, and a postcard of the Shrine.

That “in retrospect” is largely colored by my experience on facebook. When I got well enough to be on it again in 2009, I started linking up with former camp friends and counselors. About 10% of my facebook friends are from camp, and I’ve found over time that the great majority of them seem to be more similar than different than me politically, and now that the conservative wing of the Diocese of Virginia has left to go join the Anglicans, the church is more so too.

Facebook also clued me in to the Bishop’s Jubilee, which is held at Shrine Mont every Independence Day, and functions as an impromptu camp reunion. Because I disconnected from camp and church in the 90s, I didn’t even know this was happening until I saw photos in 2009 – at which point I was bedridden.

Every Independence Day since then, I get a flood of photos of former campmates and counselors in my feed, and every year I think to myself that maybe next year I’ll be able to go to the mountain. And every year my body stops me from going to link up with other people with the same experience of The Body.

It’s hard to let go of a place that made you feel the way that St. G’s did, and despite calling myself an agnostic for a very long time, I haven’t done a terribly good job. In the living room is a framed USGS quadrangle map that includes the camp. In my dayroom I have the plaque of the Body Passage above, made at camp with local materials by a beloved counselor as a Christmas gift (we celebrate Christmas during the session, not usually with gifts, but with service). In the hallway between the dayroom and my bedroom, where I see it every morning and every evening, there’s a huge enlargement of a photo my dad took of me at the top of North Mountain, looking down on the valley.

northmountain

St. G’s is on the far side of that second big ridge. The civilization you can see beyond it is Shrine Mont. “Why would anyone want to spend time in such a hideous place?” I hear you asking.

This photo is especially bittersweet. This is the mountain we climbed each year as part of our Easter celebration during camp, and most years during the reunion weekend, some alumni peel off in a small group and hike it. Though it’s a haul if you’re as unathletic as I was as growing up, it makes an excellent object lesson for Easter, complete with a small cave at the halfway point that is always rejoicingly discovered to be empty. I would end up in the back of the hike, with the counselors doing sweep. That was mostly lack of fitness, but getting to bullshit with them and grab wild blueberries from the trailside bushes was a pleasant side effect.

The second half of the North Mountain hike is a lot of picking your way up rocks, but right near the summit, the path suddenly levels out and sweeps you into a lovely mossy glade, bracketed on one side by an imposing rock outcrop that provides the view above. It’s the top of a mountain straight from Central Casting. In 1990, my cabin counselor, Kat, had us make North Mountain our overnight camping trip. She woke us the next morning before dawn and we sat on the rock, watching the sun coming up and birds climbing on the thermals, one of my most indelible camp memories. I wanted to marry Chimp up here, but practical considerations prevented it. He has orders to scatter my ashes there. I’m entirely certain that’s the next time I’ll get there.

It’s not great fun to have Independence Day be the day I cry about not being on the mountain. I know, rationally, that I’ll probably never get to the reunion, but the next year-ing, in addition to emotionally crushing me on an annual basis, gives me something to look forward to – so I keep it around. I know that the real treatment for campsickness, this being Life After St. George’s, is to continue to work to make the rest of the world more like camp, putting into practice its sneakily-inculcated ideas about service, social justice, activism, and the value of diversity. I fail at it all the time, but I forgive myself and keep trying when I can. Camp was the easy setting of that; the rest of the world is hard.

And I think all of us who went there probably have moments of wanting to go back to the easy version for a little while.


______________________________________________________________
I couldn’t begin to fit in everything wonderful about St. G’s and Shrine Mont in 2500 words; check out their posts about the shouting prayerthe dancethe peacefeeling check. and another former St.G’s camper’s take.

Posted in Life Before, ME/CFS | Tagged , , , , , , , , , , , , | 15 Comments

On One Decade In

thesickchild

Image from a Victorian annual of a sick girl wishing she had the internet instead of a stupid, only marginally interactive bunch of lavender.

Note: This entry is pretty much one big whine. When you’ve been sick for ten years, you get a coupon in the mail that entitles you to one 1800-word whine. I usually try to be at least somewhat upbeat and hopeful on the blog; I’ve made no attempt at that here.

The Sunday before Memorial Day in 2004, approximately 18 hours into my first crash, I was struggling up the sidewalk to the emergency room of St. Agnes Hospital in Fresno, when a man coming from the building stopped in his tracks.

“You look really sick,” he volunteered.

And that lay diagnosis, ten years ago, was, more or less, the beginning of my life with ME/CFS.

Ten years. There’s something so final about having finally rounded out a decade with this thing dogging me. I knew a long time ago, long before the five year mark, that if people were to get better, they generally did so by then, and despite my early convictions that I would get well – that I, of course, was the kind of person who would get well – it wasn’t long before I knew I was going to be one of the ones who didn’t. (It turns out that chronic illness’s position is that your self-concept doesn’t mean squat.)

So I’m no less likely to recover than I was before rolling over this anniversary, but there’s a greater sense of my well self being gone for good now that I’ve arrived at it.

And on this occasion, I have a confession to make: I’ve been struggling to write for the blog of late.

Part of it is an effort toward keeping myself sane. Writing about being sick requires focusing on being sick, and most of the time I would rather be plugged in to all the things I do to help myself avoid remembering that I’m sick, despite that I lie in the same place all day and am really, really sick.

Another part of it is that I sometimes think I’ve run out of things to say about it. A decade in, it’s hard to come up with new content when life remains so much the same from day to day.

I have two choices on this front: I can write about the life that I have, or I can write about the life I lost. And in terms of the life that I have, because it’s so much the same from day to day, there are few noteworthy events to put into words.

And what more can I productively add about the life that I lost? It’s been receding in the mirror for long enough that I no longer feel it’s relevant or that I’m relevant. If I were someone who’d left the job market voluntarily and wanted to go back into it now, I would be significantly out of date. That comes through when I try to write – I’m so disconnected from the well world that I struggle to know how to relate. I know that I’m to the point that I don’t know what I don’t know about what’s changed out there.

It seems, more and more, like I’m turning into the kind of pathetic person who clings on to past accomplishments for the lack of any current ones. “Glory Days” is not an anthem to aspire to, after all.

My last paycheck, the last time I cooked a meal, the last time I went shopping, the last time I went out in public on a semi-regular basis – because of too much pushing for too long, all that was six years ago.

I didn’t do a good job of envisioning what my life might be like if I didn’t get better. For a long time, I attempted to keep things as much the same as I could and have ME/CFS disrupt my life as little as possible, thinking healing would happen nonetheless. That meant I wasn’t truly anticipating where I could be in five or eight or ten years. I just presumed that I would be able to keep on the way I was, with minimal adaptations. And that was the wrong call. The illness did not stay the same for me, and eventually it landed me solidly in this ditch.

It’s like living in a permanent Throwback Thursday. When friends post pictures and say “So long ago!” it doesn’t seem so to me. My well identity ends ten years ago; I feel like it must be still 2004 and any minute now my body will kick into gear and time will start moving forward again for me.

My well friends’ lives are going on. They’re past the point in life where most people are in entry-level positions. More and more of them are management, in executive positions, in business for themselves. They’re not rank beginners anymore, not just in a place of promise. To paraphrase Dave Barry: Once we were The Hope for the Future; now they’re The Hope for Right Now. I’m immensely proud of them. But it’s not a place I’m entitled to relate to; they’re not my accomplishments, I haven’t put the work in, I haven’t gotten to that level. And I’ve lost the promise I had. It didn’t pay out. I got sick, I lost my nerve, I crawled into a shell to protect myself. Eventually I had to retreat from the world entirely, and that’s where I remain.

Instead of realizing my potential, I’ve been busy continually failing to improve. I know it’s “not my fault,” but if you’re sick for any length of time, you will find out it is your fault. Because you will be told dozens of things people have heard worked for someone’s aunt’s friend’s sister, and you’ll have a constant nagging feeling that one of those dozens of things must be the thing that will work for you, and you’ll be racked with guilt since you haven’t tried all of them because if you don’t, how will you ever know, even though you’re at 100% of your energy allocation just getting through the day and trying to deal with the inevitable unforeseeable frequent crises the disease throws at you, and you’ll get one more email saying your aunt’s friend’s sister did whatever for your current crisis and then the useless and overwhelmed and utterly defeated sensation will descend on you all over again.

Well, maybe you won’t find yourself there. But I have. And honestly, there is only so much you can try while taking care of yourself and staying sane and well (to the limited degree that “well” applies). When the decision for what you use a week’s energy on is between “see a loved one briefly” or “have a short phone call” or “try a new thing,” what do you do? When everything you might do takes at least a week’s energy, and every year you lose at minimum a couple weeks to each doctor appointment, then a bunch of unforeseeable periods of unpredictable length to random downturns, and some additional weeks to carefully changing to new bottles or brands of things you already take (because the only way to identify problems is to change one thing at a time), how do you ever get ahead with those maybe two dozen weeks a year?

The truth is, you don’t. I don’t, I’m not, at least. I’m just trying to stay in place. I’ve fallen below the invisible line where I believe significant improvement is possible (and your aunt’s sister’s friend will tell you you’ll never get well if you don’t put the right energy out into the universe, so it’s a self-fulfilling prophecy). For years I’ve kept thinking that in another year I might be just housebound instead of bedridden, but with my loss of the garden walks I managed the previous two summers, I am forcefully reminded that even some of the best care available anywhere and an enormous, supportive network of family and friends is not always enough to even stay in place.

***

Over the last ten years, I’ve lost touch with what made me a good writer in the past. Some of this is the cognitive dysfunction of the illness; I can remember it eating away at my insight and ability to make connections as far back as the first couple years I was sick. I used to think of myself as bright and perceptive, and those make interesting writing possible, but I feel very far away from bright and perceptive now. All the stuff I take to keep me alive – the half-dozen soporifics I swallow for sleep every night – half of those are psych drugs, and one of them has an especially bad rep for leaving you feeling lobotomized. But it’s what’s keeping me alive, so I stay on it and deal with my brain being made of Play-Doh. I know those parts are in there, but when I try to reach them, I have no access. It’s like running with a kite on a still day; you can try and try, but if there’s no wind to catch, you’re not flying anything.

The effect of the sleep cocktail is more severe (in terms of how much it cuts me off from higher functions) but less emotionally alienating than the Prozac I took in high school. On Prozac I could still get to some of the creative parts of my brain, but I felt like I was rolling around in one of those balls you put hamsters in to give them exercise. I could experience the world, but none of it affected me emotionally. With the current cocktail, I can feel the world a little bit more, but the creative part of my brain is not there as it was in the past.

The bit of emotional numbness that comes along with the current cocktail is somewhat helpful, in truth. I work to keep the world from affecting me, because I don’t have the energy to deal with the emotions that it might engender.

***

I wish I could say that there were a set of Great Truths I’ve learned over the past decade. After all, that’s what our culture thinks we get out of dramatic, life-changing illnesses – turned into a minor-league Dalai Lama. I could tell you all the ways I’ve adapted, or the things I appreciate more than I did – I have in the past, and maybe I will on some other occasion. But those are just things I’ve been forced to do. If you’ve gone through a personal trial – and all of us will, sooner or later, probably more than once – you’ve done some of them too. It doesn’t make me any more noble or wise than the rest of humanity. In truth, my fragility has made me more selfish and fatalism has made me more cynical.

The Great Truth, in the end, is that this sucks and it’s unfair, it’s eaten ten years of my life, the brief span of existence I’ve been granted is largely going to waste, there are no miracles on the horizon, it’s likely to suck to a greater degree for me again in the future, it’s making a lot of other people’s lives suck too – more of them, each and every day – and we need to do a lot more about it.

Posted in ME/CFS | Tagged , , , , , , | 61 Comments

My Gallery of Dead Possessions

Inspired by Patrick’s post about items he can no longer use because of ME/CFS, for our awareness day, I thought I’d share my own little list. Chimp helped me out enormously by taking most of the photos you’ll see here.

sneaksMuch of what Patrick shared was sports equipment. I’ve never owned a lot of that – I was not terribly athletic, but as I’ve previously mentioned, I did love to run. So the first item on this list is my last pair of running shoes, from 2003. I also owned a treadmill, which I bought in 2002 – it was ideal for running inside in the Michigan winter (or briefly, in the Fresno summer and/or pollution), but though we held onto it all the way to the move to Pennsylvania, I don’t have a photo of it. I especially wish I had a picture of me on it, as if that would prove that I do deserve the ability to be physically active.

copper cannondaleI also had a bike, a copper-colored Cannondale that was my first big adult purchase in 1996, at the height of the mountain bike fashion. Then I promptly had an accident on it during a long solo ride in another part of Virginia (skewed railroad tracks, the front wheel stuck, went flying, big scalp laceration below where my helmet protected me; it still itches on a regular basis). I had never used it as much as I wanted to – the accident left me pretty gun-shy, and once Chimp and I got together, I lived in places that were less bicycle-friendly than where I’d grown up riding. But in a fit of unreasonable optimism, I’d had the bike tuned up in 2007, hoping I would get well enough to coast around the neighborhood on it a little bit on a regular basis. Unfortunately, I didn’t, and then it was stolen (undoubtedly by tweakers) out of our garage in Fresno, so I don’t have a picture of it either. It was about the same color as the one pictured, though it had totally different components.

sewing machineMy sewing machine was a very generous 2003 college graduation gift from my mother. When I went back to school after we moved to Michigan, I decided to take a sewing course as an elective. Up until then, I’d never learned, despite my mom having grown up in 4-H and having made clothes and a number of elaborate costumes for my brother and me as kids. I got the same lovely model Bernina as we’d used in the class, and quickly added several handy feet, a big pack of bobbins, a subscription to BurdaStyle Magazine (patterns more interesting than the boring U.S. manufacturers) and started amassing a stash of patterns, fabric, and notions.

tie bagMy favorite project I made with it was a messenger-style bag of my own design out of men’s ties. This is the second one I made, as a gift for a friend – the first one I made for myself didn’t have a flap. This has side gussets, a zipper, lining, interior pockets – everything. I was really proud of myself for figuring out from scratch the precise order that everything would need to go together. I got compliments on even the less-elaborate original wherever I went, and I still have a huge stash of vintage men’s ties I had been hoarding from my thrifting expeditions that I was planning to use to make more of them, possibly to sell. There have been plenty of tie purses on Etsy in the last ten years, not many as pretty as this, so I think it was a pretty solid idea!

I do actually have a picture of myself using the machine, taken by my mom when she came to visit us in 2006. I’d previously made a nightgown for my mom and one for my mother-in-law, and there I’m working on a pair of pajamas for Chimp’s grandmother, which turned out to be my last project, and which I never finished. My mom hadn’t seen much of me since I’d been sick, and it was shocking to her to watch me need to stop sewing and lean my head on the machine because I was so tired.

chips

These Benjamin Moore fan decks are another item I can blame on a moment of unreasonable optimism. After I joined Chimp in Pennsylvania, I put these on my wish list, because the previous owners of our house appear to have chosen all their paint colors in the 80s. Pick a wall: if it’s not mauvy taupe it’s taupey mauve, or some blisteringly dull beige. If I had my way, my room would be a pale spring green, my bathroom would be a light robin’s egg blue, the kitchen a cheery cantaloupe with white cabinets, slate countertops, and curtains of this retro fabric I have stashed away. Dr. Cheney thinks I’d need to be out of the house at least two weeks after painting; given the logistical nightmare that would be and my known intolerance of…everything, I despair of ever having the colors I want on the walls.

purses

Purses. Everybody needs a vice, right? Is it apparent I have a terrible weakness for the elaborately, riotously multicolored? Five of those are Isabella Fiore bags I bought between 2003 and 2008, when they were turning out purses in their inimitable over-the-top style. They’ve gone through a couple of ownership changes and are mostly dreadfully boring by comparison now, and nobody has really taken their place in this wacky, gaudy, loud style niche. Maybe other people don’t want to pay hundreds of dollars to participate in bad taste. I can’t imagine why. At least it’s not a shoe problem. You put those on the ground. Here I am off to the farmer’s market wearing a 60s vintage top and carrying the bag at back right.

guitarMy guitar (acoustic; my electric not pictured). Constant companion, calling card, and coping mechanism of the latter half of my teens! I was never what you’d call an accomplished player; I picked it up in high school because I hoped to one day be a counselor at my childhood summer camp (or as cool as the counselors at my childhood summer camp), and I got good enough to manage the easier half of the indigo girls catalogue. I didn’t end up on that summer camp staff – a loss of faith intervened, which is probably less of a problem at an Episcopal summer camp than I thought it was at the time – but the guitar I kept to noodle around on. I last played it on a regular basis during 1999 and 2000, when Chimp and I were in a nameless garage band in Virginia composed of a bunch of people with significant musical backgrounds…and me.

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Dress clothes. I have been a clotheshorse for a long time; when I was small, my mom wanted to buy me Carter’s, and I wanted Garanimals. When Chimp and I moved to California, that was the first point in our relationship where both of us had full-time incomes, and I was thrilled to be able to put more money into my Nanette Lepore and Anthropologie obsession. Here’s a slideshow of a few of my office outfits, which will give you a sense of my very definite aesthetic – I loved to mix vintage with new, and could never be accused of blending in. I suppose it’s a bit of a relief not to have to keep up with fashion with the no money I’m making now, but I’d rather be making money and doing so.

CDsCDs. Remember CDs? I lost my ability to listen to music on a regular basis when they were still a thing, so that’s why I have physical media to show, instead of just a picture of a hard drive. I think these are books of 200+, and all but one are stored double-sided, so 4oo+ discs per book. I bought a lot of music – like fashion, it was one of those things that I loved keeping up with, and I miss it immensely. It was good for my emotional health.

cookbooksCookbooks – and kitchen tchotchkes. I couldn’t get all the cookbooks in one photo (there are more below table level), but there are a couple hundred of them, about 75 of them specifically vegetarian. This does not include the books on other food subjects, my significant collection of which are on another bookshelf upstairs. I started picking these up in college, and the collection has mushroomed over the years (sorry). These were great as inspiration when I was writing my vegetarian food blog, titled She Spills the Beans. My idea of a great way to relax after work was to spend a couple hours cooking an elaborate seasonal dinner. Unfortunately, Chimp’s idea of The Most Stressful Thing Ever is to spend a couple hours cooking an elaborate seasonal dinner. I would show you pictures of the kitchen equipment itself, but you probably have some too and we would be here all week if I did.

booksHere are the rest of the household’s books. Chimp built those bookshelves out of 2x12s and gas pipe after I saw a set on The Brick House blog. This space under the roofline was otherwise pretty unusable, but now it looks beautiful. I can’t use physical books because it takes too much energy to hold one and turn pages. I have to restrict myself to texts I can read on the computer, where all that’s required of me is to press page down. And there are a lot more things than you might think not available as ebooks. It is a bummer.

bar toolsBooze paraphernalia. This is just a sample of it – because neither of us can drink anymore (it gives Chimp migraines) most of it is in storage, like our absolutely enormous collection of souvenir shot glasses that we, family, and friends have collected over the years. I didn’t lose my alcohol tolerance right away when I got sick, but a bit later on – it was gone by 2007. I miss my Maker’s Mark and ginger ale, and it’s a total drag that I’ve had to miss out on the rise of the craft cocktail movement. I had (until I passed them on to a friend going to bartending school) a pile of bartending guides, and I always thought that when I accumulated enough disposable income, I would set myself up with a serious liquor collection and learn to mix drinks as well as I cooked.

So there you have it. Another example of all the fun I don’t get to have because of ME/CFS. And the helpful thing about this stuff is that it’s always around the house to remind me.

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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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