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.