No Poster Girl

Content warning: TMI, mental health.

Several friends have asked me whether I can be vaccinated and I’ve answered them individually. I’ve even written about it a couple times and stopped short of hitting the post button because the potential for comments on the topic has felt too stressful. But I’ve gotten the query enough times now that I guess I should put this out more widely.

When I became Dr. Cheney’s patient in 2009 and he learned that my descent into ME had been triggered by my first-ever flu shot, he told me that I should not be vaccinated again unless it could not be avoided.

I’m still undecided about whether this can be avoided.

That awful moment where you lift the new bottle, and the sound of the tablets shifting says “this is the wrong brand.”

The manufacturer discontinued the formulation of metoprolol ER I’ve taken for years, and I found that the first replacement brand I tried, the one my local pharmacy usually stocks, didn’t agree with me. 

The last time I talked to them about it, they’d ordered a second for me to try, and I think where we’d left it was that I was going to call back if it didn’t work so I could try the one other formulation available. The second one did work, and because they gave me that one three months running, I wrongly presumed that they’d continue. Because of course there’s more than one person there, I should have called back to confirm and set that one in stone. That was my mistake, not theirs.

I don’t know if it’s against the law everywhere – I can certainly imagine why it would be – but in the U.S. state where I live, it’s against the law for pharmacies to take a bottle of pills back when this happens. You have to check and catch it *before* they turn it over to whoever is picking it up. And if you don’t and you want it replaced, you have to pay out of pocket to replace it if you want it before the date your insurance will pay for another refill.

I called them and asked them to please order a bottle of “second formulation” to replace it with and to mark in my script for it to fill it with that brand going forward. The tech said “Uh, there are no more characters left in this little box,” the one where they’ve noted all my other brand specifications. She had to find another spot in the record where it’d fit. 

I don’t know if I still do, but for a long time I had My Very Own Shelf at the pharmacy for this reason, and if it’s still there, Second Formulation will get to slide in with all the others and say, “You too?” 

Anyway, write today off, between the stress of fixing this on the phone and my body’s unhappiness with being thrown off balance. 

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 –

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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.

That 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.

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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.

Much 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.

I 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.

My 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.

My 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.

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. 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.

My 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.

CDs. 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.

Cookbooks – 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.

Here 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.

Booze 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.