In Spring I broke a long blog silence with hope of recommencing a fruitful writing practice. I wrote a couple of essays, three of five planned pieces in the Maxim Matrix series and began a journal of healing I dubbed, Not Too Jazzy. I’ve decided to leave off blogging. I don’t know if I will resume. I have been more ill for the past six weeks than I have ever been, and my priorities are a bit in a muddle.

When I was writing the Maxim Matrix series I ran into an interpersonal issue that left me questioning whether I wanted to wrangle with the bugaboo of every memoir-writer–how to manage writing about your thoughts and feelings about experiences when they are complex and connect to relationships with people who are still connected in your life. I also began wondering if I was even meeting my own goals in publishing these pieces. I achieved one–the knowing how it would feel to “go public” with some personal writing. Beyond that? I’m not clear that anything I’ve written can be helpful to anyone, at least in this blog venue. ‘Tis time for me to rethink things.

The two remaining pieces in the series were drafts reflecting on the impact of sayings my parents invoked frequently to manipulate each other and me. The first saying was so obviously wrong to me even as a young child that it never confused me: “All’s fair in love and war” (John Lyly 1578). The next left my brain tied in knots for ages: “Ask me no questions and I’ll tell you no lies” (Oliver Goldsmith 1773). The last two were awful because the expressions’ true intent is to offer a sort of guidance or wayfinding (for better or worse) to someone in difficulty, but my parents used them in cruel, taunting ways. “Offer it up,” (a Christian shorthand expression suggesting that one share one’s suffering with Jesus), and “Hope springs eternal,” (Alexander Pope 1732).

The Not Too Jazzy journal on healing from chronic illness was misguided from the start. I’d been having fun with rewriting quotes to suit me in a kind of self-empowering ironic way, but then it did actually turn into a journal. I’m not really interested in writing about the physical details of healing from illness (unless I actually do make a magical recovery!), and I made a bad error in my last entry. I deleted several long and too-introspective sections of my draft, then posted the entry without re-reading the final piece because I was exhausted and wanted to be done with it–a major no-no for any writer. I did not realize until my attention was called to it that because of my own carelessness, the post’s tone and meaning had changed dramatically in certain parts and was hurtful to someone I care about. I edited it. This was a wake-up call to me on several levels to examine what I was doing with this particular blog thread.

In my mind, a journal about healing from illness is desperately dull reading to anyone who does not suffer from a similar illness or care for someone who does, and this audience has not really been my primary intended audience for any of my blog writing. Anyway, my interests skew more to the mind part of the bodymind and the overlap of the neurophysiological and emotional and spiritual. People in general don’t care to read or talk about this in any great depth. Most in the chronic illness communities don’t want to engage in this at all, other than a few who will acknowledge that yoga and meditation has been helpful with pain and sleep. One gets the silent treatment, at best, when even a whisper floats that illness might connect in any way at all to mind/emotion/spirit. I understand this response given how most of us with poorly understood and under-researched chronic illnesses have been dismissed, gaslit, and sometimes harmed by individual physicians and the medical establishment over decades and still today. I have been one of these people. I have also been one who has remained open to healing in all ways. I may turn my attentions back toward the book manuscript I have left languishing.

As for Not Too Jazzy, this will conclude that journal with a reflection on people with ME/CFS suffering long-term and severe post-vaccine reactions, and a last bit of update about my own health status.

It has been nearly seven weeks since I have been, literally, flattened by the devastating reaction to my second Covid vaccine. I discovered I am not alone in this, as I mentioned in the last journal entry. A lot of people with ME/CFS have had major ongoing problems, some for longer than I have. There is a private Facebook group for us that now has nearly seven thousand members, mostly from the US, UK, and some from Australia. All of us have ME/CFS. Those who have had these terrible reactions have all experienced similar frustrations with their physicians (if they have them, or can get to them). No answers, no interventions, no seemingly increased concern about their new status despite their being–like me–suddenly profoundly far more disabled than they have ever been before.

None of this information has been in the news. This is not surprising; although millions of people have ME/CFS it remains a mostly invisible disease that many physicians still don’t quite believe exists. What has hit the news is the profoundly similar “Long-Covid” which may finally spur some research funding that will also help people with ME/CFS. Any news of those people’s reactions has escaped me, if there has been any. I know there is deep concern about scaring people away from being vaccinated, and I understand those concerns. The news has covered some alarming reactions people have had to the vaccines. One of these reactions was written up in a journal in May. It was exactly the reaction that I and many others have had. The man developed intense POTS (Postural Orthostatic Tachycardia Syndrome), a high heart rate and near syncope, for which he was hospitalized and all sorts of tests run and a great fuss made about him. The fuss was made, of course, because he had never had this symptom before he’d had the Covid vaccine.

The man described in the article was unlike those who have suffered for years POTS or ME/CFS (for whom POTS is a commonly co-occurring condition, unsurprisingly because both syndromes are often brought on by viral infections). No matter that suddenly many of us long-sufferers are now nearly completely debilitated by it after our vaccination. Once you acknowledge to a medical person that a symptom is not new, you enter a different category of care. Unless your life is in immediate danger, you are dismissed from “acute care” to fend for yourself no matter how ill or unable to care for yourself you are. I have experienced this several times over, and have heard similar stories repeatedly not only from the US but also from people in the UK.

Aside from the plights of individual folks, what leaves me feeling an unpleasant mix of sadness and impotent frustration is knowing how many hundreds of internists and family doctors have heard these complaints from their patients and knowing that most, if not all, will report nothing to the vaccine producers or the CDC (or other country’s equivalents). The only data that is being gathered is on the life-threatening reactions, and immediate anaphylaxis. Researchers have defined anaphylaxis extremely narrowly; even a current NIH sponsored study limits the anaphylactic response time to 90 minutes. Yet it seems clear that the relapses and worse people with ME/CFS are experiencing post-vaccine are the result of mast cell activation which is a form of anaphylaxis.

For some folks, mast cell activation–this low-level anaphylactic response–is ongoing. Not like eating a peanut or getting stung by a bee. More like constant, low-level, release of histamines. Most people got the vaccine had a little systemic response. They might or might not have felt some short-term side-effects. People with chronic illness and overactive immune systems responded differently. Some people had bad reactions after their first vaccine. The reigning theory on that is that they were likely exposed to Covid-19 already without knowing it (I’m not well-versed on this theory). After the second vaccine, our systems went “nuclear,” producing a megaton of cytokines, and stayed that way, “stuck” in the inflammatory response. So it was as if all the “ick” we’ve dealt with as ones who live with chronic illness was suddenly given this turbo boost of super-fuel, and the “ick,” though chronic, has become acute.

I’ve been through this twice before–once with actual evidence. When I was in the hospital last summer in septic shock, the doctor mentioned he had never seen cytokine numbers so high. My system was in a “cytokine storm”–the same inflammatory response that was killing so many people with Covid-19, and most likely the inflammatory response that people who have “Long-Covid” are stuck in. When I was discharged from the hospital it took me months to “recover,” which meant getting myself back to the level of function I’d been at before I’d become ill with sepsis. I had then very similar symptoms to what I have now, although not nearly the severity of tachycardia. The point is, the immune response is quite similar, but then I’d been pumped full of steroids so that could explain the difference.

I am getting slowly and slightly better. Three weeks ago, the short walk to the kitchen would spike my heart rate into the 160s and cause all kinds of symptoms and illness for a long while after. Now it only spikes into the high 120s and the payback isn’t too bad. I take high doses of anti-histamines and mast-cell stabilizers and rest a lot. I have been trying hard to find a local doctor. My doctor with whom I meet by phone wants me to see a cardiologist because he says this sounds more extreme than POTS. Seeing a cardiologist is far easier said than done. I “see” my doctor on the phone, and he is in another state. I do not have a doctor where I live and haven’t been able to get one because…tah-dah…Covid. I cannot drive to another state. I cannot drive to the grocery store or the pharmacy. I cannot even be up and around in my house for more than about ten minutes without feeling very ill. I have in the past week managed to drive the 1/2 mile to the village store without my vision going wonky and feeling like I will pass out. I paid a steep price in illness for a 20-minute drive and being up in my wheelchair for too long 10 days ago, and I’ll not do that again.

I have genuinely tried, and failed, in my efforts to hire someone to help me in the house. I thought I had a great person, a nursing student and mom of a little kid. She actually sat in my bedroom chatting with me and agreed on a wage and set a time to come then never showed up and has ghosted me. Sigh. I did find someone who has been somewhat helpful outside. I have gotten quite good at getting things done in micro-doses–a minute or two of doing something, then I lie on the floor for a while. It works. It goes against every trained fiber of my being, but I am learning new ways.

I’m carrying these new ways over into my efforts to establish with a primary care physician here where I live as well. Navigating the inexplicably labyrinthine systems has tried my generous patience. I call the listed number for one town’s practice under the larger umbrella system, but a practice in a different town answers, then they say they can’t help me and I have to call the other town. It is crazy-making. They tell me they will call me back, and they don’t. They tell me they will send me paperwork, and they don’t. They tell me they can schedule me as a new patient with Dr. X in November. This past week, I have begun assuming a dramatic character with the various office staffs. I am polite and bold. I say, “I am very ill. This is urgent,” I tell them. It half-worked on Monday. My call was forwarded to a different office and they gave me an appointment at the end of July. Except I had to cancel it because they scheduled me with a doctor who doesn’t take my insurance. Today when I tried again, the new person I talked to looked at the notes from the call and said, “Oh, these notes say your case isn’t urgent. I’ll get on this and make sure someone calls you back today, don’t worry.” Nobody ever called.

I made a half-joke to my doctor when he told me I needed to see a cardiologist that by the time I could get to one, I’d be doing much better. I don’t know if he smiled because we were on the phone. I think my prediction is accurate though. I would be surprised, even now, if there were irregularities in rhythm; I’m fairly sure I’m just having insane post-vaccination POTS. I’d like to know because despite my constant requests over the years, my heart has been tested every which way when I’m lying down, but nobody would ever investigate what happens when I have the real problems which is when I’m standing and sitting.

Despite the somewhat profound but not impossible physical challenges I’m navigating, I’m in good spirits. One of the major bonus/trade-offs has been that the often excruciating chronic pain I live with has dramatically decreased as a direct result of all the bedrest. This, alone, has been a huge relief. I wrote in my last journal that like Dr. Who’s Tardis, my life is bigger on the inside than it is on the outside. I have an active imagination that allows me all sorts of adventures even when I am lying down in a dark room with my eyes closed. I have wide-ranging interests, endless curiosity, and a love of reading and music, and a newly discovered pleasure of listening to poets read their work. I meditate, do shamanic journeying, practice yoga nidra, exchange old-fashioned letters with a friend, and talk to my kids and a couple of friends. I’m missing some of the zoom connections that are disappearing as the pandemic restrictions end. I continue to long to connect with people in 3D, my primary motivation getting vaccinated. I am hopeful that I will be well enough soon enough to enjoy the pond and ocean and woods this summer. I know I will have an email coming soon that tells me to come and collect my new kayak, and it will make me cry, but kayaks don’t rot like food and as long as I can get someone to collect it for me, it will await my healing just as I do.

peace, jazz

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