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.

I do realize that my ME friends who rely on home health aids don’t have the privilege to avoid it.

I am following some groups and polls about ME patients’ response to the vaccine. Some people have done fine; some have had temporary exacerbation of their symptoms; some have developed new symptoms and/or have been knocked down in a way that’s yet to abate.

Frankly, the idea of taking the vaccine is terrifying to me because of that last possibility. I have such crazy reactions to so many ordinary things, I’m already so debilitated, and it could potentially make me permanently worse, and I fear that there might be an “or worse,” and once it’s injected there’s both no undoing it and a long time to wait to see what the total effect will be.

That circumstance, and truthfully, this whole pandemic, has proved precisely calibrated to my lifelong anxiety about control of bodily integrity.

That probably has some roots in my dad’s three bouts of Hodgkin’s between the time I was three and the time I was seven.

When I was little and I got the (infrequent) opportunity to choose candy, I always chose Good & Plenty so I could pretend I was taking pills, like Daddy.

I just had the bad luck to have my body manifest such that that anxiety is in the forefront of my experience in a way that’s well-nigh unavoidable.

Late this winter, I bought a PAPR because I knew eventually the doctor’s office was going to stop being willing to send practitioners out into the parking lot and insist I come into the building, and I knew I couldn’t manage my terror about that short of that degree of protection.

My mom always says I have a good face for hats, but I don’t feel like it extends quite as far as a PAPR hood.

I recognize that that to buy a PAPR, too, is privilege. Not everybody has the funds to do that.

Even with the PAPR, the last time I wore it, I was so exhausted by the time I got back from the doctor’s appointment that I took it off wrong – the head covering brushed my nostrils as I removed it – and for the last 13 days I’ve had to constantly tamp down my anxiety that that was enough to cause me to catch COVID-19.

The random ME sore throat has popped up a few times in those 13 days and let me tell you, that is plenty enough for a catastrophizing spiral.

I know this is unreasonable, but that is what anxiety is.

Chimp has recently learned that as my caregiver, he qualifies as 1A. So he has begun the process of trying to get a vaccine appointment.

I bought a larger head cover for the PAPR that will fit him, because I’m terrified that he’ll catch it at the vaccine appointment. (Yes, more privilege.)

To watch the world already champing at the bit to go back to normal is really not helping. Things are not normal, there is no current indication that they will soon be normal, and watching people behave as if they are makes me feel even more in danger.

At the moment, I am having a hard time believing that the world will *ever* go back to being safe for me. What about the very real possibility that this becomes endemic?

Someday Chimp will *have* to go back to teaching in person, and what might happen if I don’t get vaccinated by then? Almost all his students live in dorms, and dorms have the potential to be pretty serious disease vectors. I can tell you that from the number of colds he’s gotten over the years.

So no, I should probably not be vaccinated, but I may have to be, and I feel like I have no basis to reassure myself that it will probably be okay.

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 –

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.

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.

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.

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.