I wrote this on April 27, 2021. I didn’t know how much I would be challenged in my willingness to accept what is and still find the joys and comforts and fun in it.
Where there’s a will, there’s another way.
Less pain, great gain.
For nine years I have clung to the belief that I could “get back to” my former level of physical functioning if I tried hard enough. I twisted to the extreme the marginally truth-y “no pain, no gain” motivator. I convinced myself that my nods to my illness were temporary–the crutches, the wheelchair, the waving farewell to my career, etc. Just enough to let me keep trying harder. I guess part of me still hopes they might be. Now, I am recognizing that there is another way.
There seems to be no cure for these illnesses, but I can feel better anyway. It is not “giving up” or “failing” or “lacking will” to accept that I can live with illness and still experience joys and comforts and fun even if there’s crippling pain and fatigue and grief over so much loss, and even if I can’t be what most people think of as a “contributing member of society.” I have done everything in my power to recover. All that’s left is letting go. That’s the scariest of all. Maybe it’s the magic I’ve sought all along, the magic that has been there all along.
Today is May 31, 2021
My openness to accept everything and live in compassionate and accepting presence with what IS in my life has been magic. It has been all along really; it’s just grown proportionally stronger the more I’ve let go of trying to control my life. Of course it’s not exactly the magic some parts of me wished for. Nope. What we get rarely comes in the packages we’ve wished for. I’ve learned that many times. The real magic is learning to find the gifts in what we’re given. I’m having a bit of a struggle finding the gifts in what I’ve been given this past month.
I got my second dose of the Moderna vaccine on May 7. I was excited. After living in almost total quarantine for the whole of the pandemic, I long for connection with 3D humans. I am touch-deprived. I miss hugs. I miss eye-contact that isn’t mediated by a screen. I miss the non-verbal communication that gets blocked when you can only see others from the shoulders up, and the kind of energy connection that happens in a room with 3D people that’s blunted online. I was also excited for Summer. I lost nearly the whole of last Summer and Fall, the first of those seasons in my new home, because of intermittent illnesses early, then the major illness that I’ve written about previously. This was to be my summer to work on my kitchen garden and the wee forest grove in baby steps, one plant at a time. I even bought an apple tree.
I wasn’t surprised when I was laid flat for three days by the second dose. Lots of folks were. But the fever went away, and I felt a little better for a day or two. And then I didn’t. It got worse. It turns out I am one of the people that those in the chronic illness communities are calling “vaccine relapsers.”
Things have gotten very bad.
In some future post I’ll write something about my illnesses given that this thread is meant to be about healing from chronic illness. I have a lot of diagnoses as is common for people with any chronic illness that has the word “syndrome” floating around it. An illness is called a “syndrome” when it presents with a whole collection of symptoms that consistently occur together. Any one of these symptoms can also have its own separate diagnosis, so that’s where things get very complicated.
One of my diagnoses–sort of the umbrella one in my mind–is an illness that the international medical community cannot even decide what to call officially. I think it has had four or five different names now. In the US it’s mostly known as ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). It has been around for a long time, but it is still misunderstood and hard to treat. This might change soon because the CDC, which has never been particularly interested in funding research for it, now believes that the folks who have long Covid actually have ME/CFS or something very similar, so the already staggering numbers of people like me are going to get even larger. This will be true throughout the world as well obviously, so there is hope that breakthroughs in research and treatments will come.
For many people with inflammatory diseases like ME/CFS, the vaccines haven’t been a problem. For a surprising handful, the vaccines actually helped their symptoms go into remission for a time, which is fascinating to immunologists. Unfortunately, the vaccines have sent some folks into major relapses of various kinds. I actually feel lucky in the form mine has taken; I have been in conversation with two people who have lost the use of their legs, and with three whose gastrointestinal systems have gone haywire. Most are like me though; they’re having all their usual misery just at an extreme. It is not clear when or if the relapses will end. We all have relapses, and they do generally end though not always. Sometimes they end in a few weeks, sometimes it takes months, and sometimes it takes years. Nobody knows what will happen with the Covid vaccine relapse because the vaccine is so new.
Doctors who sort of understand these things in relation to ME/CFS (there aren’t too many of them) suspect the relapses have to do with a particular type of immune system response (mast cell activation) that gets your autonomic nervous system all out of whack. They’re recommending a protocol of supplements that I’m following, and though most of my symptoms are the same, the brain fog has at least mostly cleared.
What is happening to me is scary. I emailed my doctor for advice. He response seemed nonchalant about my situation. I ought not have been surprised because when I was in a similar crisis last summer neither he nor my PCP were helpful. Sometimes I think even kind medical providers put up a wall of professionalism that feels like minimization when they are unable to offer anything practically helpful to a patient in distress. His advice to me on what I should do in my current situation was strange.
I told him I am now mostly bedridden. I can’t be out of bed for more than 10 minutes without feeling quite ill for a long while afterward. This is the hallmark ME/CFS symptom, called SEID, systemic exercise intolerance disease, or sometimes post-exertional malaise. I have tachycardia, headaches, some neurological symptoms, brain fog, gastrointestinal issues, crippling fatigue. He suggested I consider taking an anti-fungal drug. The advice was way off for several reasons, one of which is it tells me he is out of step with the ME/CFS world and what is happening with people’s responses to the vaccine. I recalled that he doesn’t believe in the diagnosis of ME/CFS which leaves me questioning what I’m to do now.
I probably need to find a new doctor (mostly because I have moved out of state and this is causing all sorts of tangles), but I like this one. He’s smart and kind, and finding any physician who is willing to think creatively about complex chronic illness is challenging, not to mention overwhelming when one is in the midst of a health crisis. I also need to hire someone to come weekly to help me in this very strange town where it seems impossible to hire anyone to do anything. I live in a place where there is no food or grocery delivery, and I currently cannot even get to the end of my driveway to get my mail unless I want the tradeoff of being violently ill for the rest of the day.
Mostly what I am going to do now is be present and accept what is. I remind myself that I know how to do crises. This past few weeks has felt like crises nested within crises. I know how to do intense illness and how to do rehabilitation. I may be not too jazzy at any of them, but I’ve learned a lot since last summer…not the least of which is to tell people when things are hard and accept help when it is offered. Last night I told my friend I was having a rough go; she offered help, and I accepted. It took me a long time to figure out what to ask for, but I did it. Today she picked up my medicines at the pharmacy, bought some food, and got my weeks’ mail from my mailbox. I feel blessed.
I lie in bed plotting what I want to do. If I can manage ten minutes on my feet a couple times a day before I start getting really ill, what can I get done besides personal care or getting some food (sooo boring)? It’s interesting to micro-dose your life this way. I failed awfully on my first outside attempt. I thought I could water the garden, but I didn’t set my alarm for ten minutes. Of course I nearly didn’t make it back inside before collapsing. I’d stood for 30 minutes holding the hose; it made me severely ill for 8 hours and it took another day for my system to fully calm down. Lesson learned. I reckon, though, that in 10 minutes I could plant a packet of sunflower seeds, or a flat of impatiens. I know I could fill the bird feeders. Small things, but wonderful.
Soon the nights will get warm again after the recent cold spell, and I can open the windows and listen to the loons calling from the pond. I like to close my eyes and go to the pond at night. I love watching Dr. Who. He travels in the Tardis. I like to think of the Tardis as an analogy for my life now. Like it, my life is much bigger on the inside than it is on the outside.
Because I’ve become interested in the origins of the quotes I’ve been using that have so affected my thinking and behavior, I’ll add this bit of history. “Where there’s a will, there’s a way” comes from George Herbert’s Jacula Prudentusm: “To him that will, ways are not wanting” (1640), and the more familiar version appeared in New Monthly Magazine in 1822. “No pain, no gain” has varied attributions including Jane Fonda and Ben Franklin, but it is far older than either. One site says it’s been used explicitly since at least 1577, but in 1648, poet Robert Herrick wrote in his work Hesperides a short poem entitled “No Pains, No Gains.”