It’s just over a month since I wrote The Unendurable, a month since I had my operation to remove a large ovarian cyst, and two weeks since I created my fundraiser. The response to the fundraiser has been utterly overwhelming, so too all the messages and notes sent to me, many from dear friends, many from people I’ve never met at all. I haven’t managed to thank everyone. I’m sorry about this, know that you are all in my heart and that I’m so very, very grateful.
Every day of these past two weeks I’ve wanted to write more, to express something that perhaps is inexpressible, a healing process I had no expectation of. Perhaps this process began when the pain started, last March.
I’ve not been able to write about any of this, because the operation triggered yet another severe ME/CFS “crash”. I was told recovery would be two weeks, but no matter how long I rest, tremendous exhaustion isn’t alleviated. Even my sutures aren’t healing well (I’ve just finished a course of antibiotics). Other ME/CFS symptoms are flaring up- swollen glands, feeling as if I’m coming down with something. There are precious few moments available to do something unrelated to my physical state–from resting or taking my numerous pain medications and supplements, doing my physiotherapy movements, or going to medical appointments and therapeutic sessions.
Most of these appointments I would not have been able to do without the support from the fundraiser, and I’ll write a little about these first.
I had a consultation with a private surgeon. Not an uplifting experience. The situation in my back, at least according to the MRI done last September, is rather worse than was initially implied. It’s not just a disc bulge but “an extruded prolapse on the back of a broad based prolapse eccentric to the left.” This pinches a nerve root, hence all the pain I’m in.
He listed my options (in his opinion):
– do nothing, many such issues resolve in a year, but my year is pretty much up.
– have another nerve root block, but since the first one only helped about 15%, he didn’t think more would help.
– have the operation, a microdiscectomy. He outlined all the (frightening) risks, and the post-op protocol – 5-6 weeks of no sitting, perhaps propped up in bed with pillows. This alone terrified me, given how long it’s taking me to recover from a relatively minor operation.
The surgeon told me he typically gives an 80 to 85 % chance of surgery benefitting my kind of symptoms, but due to my health profile, it would be 70 – 80%. My gut instinct is it could be even lower.
I was quite depressed after this consultation. Thankfully, just afterwards, I had a face-face consultation with the lovely NHS physiotherapist I mentioned in the fundraiser, the one who’d talked to me about central sensitization, where the brain sends out ‘this is dangerous pain’ signals when perhaps the pain is not as bad as that (and just to be clear, the pain I’m feeling is as bad cuaas I feel it, but it’s possible, due to the trauma of the past year and ME/CFS, my pain threshold is lower than it might be). He was lovely, and suggested I at least try another approach, a kind of CBT of movement of the body, very, very gently teaching the body-mind to try movements I’ve so far freaked out about – and not done if at all possible – for fear of them causing me pain. It was a relief to at least consider something else before going for surgery, and would take time, weeks, months.
The next day my throat lump was scanned. It’s a benign thyroid nodule, nothing to worry about. A huge relief (unfortunately the drive there and back, about an hour and a half in total, caused excruciating sciatic pain for the rest of the day/night. Car seats seem designed to do this!).
In the meantime, thanks again to the generosity of everyone donating to the fundraiser, I’ve been doing sessions of acupuncture with Nik Tilling who specialises in pain. Initially he treated the ‘reason’ for my pain, the disc prolapse, but then he worked on settling my nervous system (in constant ‘fight/flight’), and, well, my whole being. Nik is one of the most empathetic people I’ve ever met, sessions are closer to therapy/healing sessions.
I’m seeing a cranial osteopath and she too is focussing on settling my nervous system, and healing the damage done by the operation, and misalignments of my spine/sacrum. I’ve had one clinical massage session with another specialist in this area and will be having one this coming week.
Also, my dear partner has been doing healing bodywork on me, something I’ve not been comfortable with in the past. Partly because it is his ‘job’ and I felt it would just take too much from him to be working on me too, in particular at this time, when his own work situation due to the pandemic and Brexit has been horribly stressful, uncertain and worrying.
With all this, the pain is still there–last night it was as if my calf was being squeezed in a vice and as I write this a burning snake of pain wraps itself around my thigh–but something else quite profound is shifting in me.
And it is this I really wanted to write about.
As I said in that fundraiser, “To be asking for help, for funds, for myself, feels absolutely the opposite of what I ‘should’ be doing, when I know there is so much suffering that I could assist in alleviating. The truth is I’ve never found it easy to ask for help, of any kind.”
Well, in addition to the fundraiser, I steeled myself to make a post on a local neighbourhood website to see if anyone might be willing to ferry me to and from some of these appointments, in exchange for writing help. I didn’t expect any response, but over a dozen people volunteered, and most don’t want anything in exchange. Amazing.
And the other night I spoke to someone who knows physical pain intimately, an animal rescuer amongst other things. A very dear friend (who also truly knows pain) put me in touch with her. In addition to sharing what has helped her, this lovely woman invites me to her house in Ojai, California (one of my favourite places in the world ) where I can soak in her warm pool and learn from her experience. A total stranger, inviting me to her home. What a gift! The dear friend who introduced us has also invited me to her home in the States, in a town that abounds with amazing practitioners and another friend to her home in Austria where she would give me sessions…
So, how to fully express what it means to me to be receiving such incredible generosity? Of course I’m grateful, but it’s more than that. Something seems to be working through layers of past trauma, breaking down an unhealthy idea of how I should ‘be’ in the world. It’s kind of crisis of identity. I’ve had ME/CFS for 25 years but I’ve tried to pretend it wasn’t there and pushed myself to continue to be an independent, ‘strong’, do-it-alone sort of person. And now I can’t be this person anymore. The pain has forced me to surrender, to let go of who I thought I was, who I thought I should be. And in letting go, support and kindness and love just keeps flowing towards me.
I’ve often thought of my mother in the past while. Yes, wanting her to be alive, so I could hear her voice, but also because of who she was, how she behaved in the world. Such an extraordinary person. Someone who also believed in being independent, in not needing help. Someone who helped others, not the other way around. She was a powerhouse of a woman – a force of nature, people said – until her 70s, when things started to crumble, when her way of dealing with life was no longer possible (make a sculpture, build a house, organise a community centre, dig a garden). She was suffering from a variety of debilitating issues (including pain) yet spent the last years of her life alone, lonely, isolated, because she could not bear to be seen as vulnerable. She pushed people away – even dear friends, and family. She once told me she’d wake up in the night weeping.
I could so easily have walked the same path, ended up alone and isolated and afraid.
After one of my healing sessions I had such a powerful wave of loneliness wash through me. Not that I don’t know loneliness – chronic illness and chronic pain are lonely conditions—but this felt deeper, stronger, a loneliness I’ve probably had most of my life, ever since the car accident that killed my father when I was seven. Or earlier. Perhaps, even it’s my mother’s loneliness, or further back, her mother or her mother’s mother, or even further back. This wave of loneliness seemed almost touchable, so that I could truly acknowledge it. And in other sessions, acupuncture, for example, something similar is happening around feeling joy (I can hardly remember when I last felt joy), seeing if I can allow an opening for this, and for transformation in all areas of my being.
So, while I’m still in pain 24/7, still crying with it sometimes, I sense a possibility. I can’t see how it will look yet, but it’s brighter than where I’ve come from.
I have you to thank for this, all of you who manage to read these long posts; all of you who have reached out to me in so many ways. Thank you.
What is next? The NHS has put me forward for another kind of injection, ‘radiofrequency denervation‘ (essentially cauterizing the nerve). I’m a bit nervous about this and the surgeon didn’t even mention it, but it’s not till May so I have time to consider. [Update: I was given incorrect information – it’s just another kind of steroid injection.] I have enough in the fundraiser to explore not only acupuncture, cranial osteopathy and clinical massage but other modalities for several weeks. I’d so love to take up the kind invitations to stay with people in a healing environment–I’ve often said if I could wave a magic wand for myself it would be to be in nature near warm water–but I need to be much stronger to make any kind of journey. I wonder if this will ever be possible, given how unwell I’ve been for so long, over and above the pain. I’ve known of some approaches that have worked wonders for others with ME/CFS, intravenous glutathione and vitamin C or a PEMF mat – pulsed electromagnetic field therapy – for example (some studies used PEMF for Long Covid and chronic pain). And these would eat up my entire fund and more, so in the meantime I will try to keep myself open for ‘what wants to happen’ – an approach I use in writing, actually!
[Update: a friend just read this blog and said that in my wording of the very last sentence she heard the old voice of scarcity and limitation, that I shouldn’t assume the support I’ve been given would be over… so once I feel more sure about what might help, perhaps I’ll do a new fundraiser –argh, even writing this feels once again SO uncomfortable!]