I thought The Untellable Tale was a difficult blog to write. In some ways this feels harder. It will be short however, which I’m sure will be a relief for those of you who so generously do read my long health blogs.
If you read The Untellable Tale you’ll know I had an extreme reaction to antibiotic therapy for late stage Lyme disease. I stopped the antibiotics on February 1st, and now, nearly six weeks later, I’m still not back to my pre-protocol baseline, but all the extreme symptoms are no longer. I am left with crushing fatigue, poor sleep in spite of sleep meds, almost deafening tinnitus and extremely poor memory. What has been more difficult to navigate is my mood, which has been very low. Not exactly depression, but close. No motivation at all. Everything feels flat, joyless. I suppose this is to be expected. My lovely acupuncturist said my body seemed to him in shock, the kind of shock you might have after a sustained period of trauma.
The past few days I feel the mood lifting a little, giving me the motivation to finally write this blog.
I had another consultation with my private consultant to discuss an alternative, more gentle protocol, largely herbal and supplement based. He said that the stats on this protocol are good, 70% make a good recovery, 20% a partial recovery, and 10% don’t experience any recovery. After the consultation I was still very conflicted, knowing that there is no certainty, that even on a gentler protocol there could be side effects and herxheimer reactions.
After a couple of weeks I finally had the energy to total up the costs of the new protocol. It is unaffordable at well over £500 per month, and I’d have to do it for at least 12 months, more likely 18 months. In some ways this made the decision of what to do easier for me. I am not going to continue. Now there is a grant I could apply for from a European Lyme disease organisation, but I can’t apply until the summer, and I’m unsure what they would cover if I got it. I may, or may not apply.
What has come to me instead is a radical shift.
To stop trying to fix my health. To spend the few useable hours I have per day doing things that nourish me. To stop googling side effects and cures and the latest supplements, to stop reading all the posts in the various forums I’m in on ME/CFS and Lyme Disease. To train my mind to stop focussing on every new symptom as something potentially traumatic.
While I’ve had my chronic illness for three decades and many of those years have been spent looking into ways to improve my health, things changed in 2021 when I got so very ill from the AstraZenica vaccines. I joined Facebook groups (and if you are in the UK and have a vaccine injury I cannot recommend highly enough the UKCVFamily charity/support and advocacy organisation, also on Facebook here), I tried so many protocols and supplements and had so many doctor and specialist consultations given my varied and bizarre symptoms from thyroid goitres to small fibre neuropathy, let alone the malaise and all else.
Actually, what I most remember from those awful times (and I’m still not back to pre vaccine injury health) was thinking, What if I can’t fix my health? What can I do? And the answer I got was to restart trauma therapy. Not just for the trauma of the adverse reaction, but to take another look at the multiple traumas I’ve experienced in my life. I have always considered my illness to be a mixture of trauma and pathogen, and largely a damaged nervous system from both.
It’s interesting to me that I am still in therapy, that I have recently experienced what was even more traumatic than the adverse vaccine reaction, even if occurred over a shorter period of time. I am so grateful that I am still in therapy. That I have an amazing therapist who doesn’t let me off the hook. I told her about possibly stopping trying to fix my health. She asked me how that felt. It took me a moment and then I said, it feels really good.
And, it’s clear it’s still a deeply challenging decision for me. I was sending a voice message to a friend and when I said, I’ve decided to stop trying to fix my health, I broke down in tears. I’m not sure why. Perhaps because it’s become so much part of who I am, and part of my day-to-day life. And it’s not as if I won’t take care of myself in whatever ways I can, but I want to stop trying to find a cure. To live within my limitations. I suspect this is one reason for my low mood: I’ve let go of something I have been engaged with every day for years, if only to remember when and how to take certain medications, with or without food, how much money do I need to raise to do X, blah blah.
So now what? I’m not writing (other than this, which is proving to be long, not short, as per usual). What about just ‘being’? Noticing when my mind attaches to a symptom and starts to either try to problem solve it or consider a dire future of worsening symptoms. I’m good at problem solving. My mother was the perfect role model for this. Good in most areas other than my health, that is. I was sorting through some old papers in my office this week, and I’ve been trying to problem solve my health for thirty years with increasing amounts of money and time involved.
Can I stop? Just stop?
And what about the incredibly generous people who have donated to help? It’s hard to ask for money. Harder to say, well, I’ve spent it on something that I can’t continue. I sit here, not knowing what to say about this. If I ever sell a book I will refund each and everyone of you. But I know that even if I do sell a book, it’s very unlikely I’ll make enough to do so. I know simply asking has helped me rewire (a little) my programming that I have to do it alone, that I am alone, that it’s not okay to ask for help. On the contrary, asking for help has connected and reconnected me to so many beautiful and generous people, and it is this connection that is one of the things I want to focus on, rather than the fixing of my health.
Sophie Strand who redefines illness and trauma in so many ways including asking “What if sickness is not a separation from the body?” writes the following in her memoir The Body is a Doorway:
If I can’t fix this then let me understand how it could be my superpower. If I can’t close my sensory gating, then open me wider. Dilate me like a cervix so that I may be the birth canal for stories that are not about human beings and human progress. Let me become a doorway for viruses and ecosystems and fungi and dove song. Let me become a doorway so big and so open that a new way of being can emerge, one not tied to the fiction of human individuals. One that is equally aware of the agony and ecstasy and is allowed to wildly swing out of the window of tolerance, achieving both the valleys and peaks that our culture has denied us. Let me exceed the graph. Let me swing past wellness into something wilder and less predictable.
Perhaps my recent awful health experience has taught me something. Perhaps I’ll more fully understand what that is in years to come, but I have an inkling that one thing is reframing the idea of illness as ‘wrong’. Not that I would wish it upon anyone, but perhaps there is another way to be with it. To stop fighting. To spend time doing absolutely nothing. To rediscover the joy in simply being, even with – or especially with – pain and physical suffering. It’s not the first time I’ve been here, I still remember a lightbulb moment, so long ago, in Mexico, when I had one of my many acute kidney infections, and I realised ‘fighting’ what I was physically experiencing was only making it worse. I was literally trying to push myself out of my body, as if that is even possible… so instead I surrendered, and while the pain and malaise did not change, something else did. It simply felt easier. When I do my Yoga Nidra guided meditations on Insight Time, and the person speaking asks me to come up with a ‘sankalpa’ – a hope/resolve/intention – what comes to me most often is to ask for ease. Not health. Not even happiness. Ease.
Previous blogs of mine on my physical situation:
The Untellable Tale
My Late-Stage Lyme Treatment
My Late-Stage Lyme Diagnosis
The Art of Illness: Part Two
The Art of Illness
Finding Home
Doctor, Doctor
44 Weeks
Still Suffering
ROCKS AND FLOWERS
Feeling Normal
The Real Story
The Unendurable, Part Two
The Unendurable
IT’S NOT COVID
More Things I Don’t Want To Talk About
On Being Invisible
Sandra Jensen 