I can’t believe it’s been been five months since I wrote here. I don’t know where the time has gone. My various symptoms were really awful for a long time – the burning feet syndrome (most likely small fibre neuropathy), the nocturnal polyuria made for very little sleep, which in any case is never restorative. I was given a drug to help me sleep, but that gave me restless legs, which was almost worse than either of these, so I stopped taking it. I had an awful, endless viral infection in January, not COVID but a kind of cold or flu, the worst I’ve ever had. It caused a ticking sound in my head which got worse if I moved or even moved my eyes, and this was layered on top of my already horrible tinnitus. But it did pass, eventually. I still have burning feet and I still have to wee throughout the night, but it is better than it was. My pancreas is still not working properly so I have to take digestive enzymes with every meal and snack, and my hormones won’t settle down into something relatively normal. I’ve had weird heart arrhythmias and I’m still waiting to see a cardiologist about this, so too an NHS neurologist and rheumatologist to proceed with the small fibre neuropathy diagnosis. I did have an appointment with an NHS gastroenterologist, and I’ve had an abdominal CT scan for which I’m awaiting results. I’ve had brain and spine MRIs, which showed nothing out of the ordinary (other than the prolapsed disc).
About the prolapsed disc — my sciatic pain has varied from awful to completely manageable and back again, but mostly it is nothing like it was in 2021, not even close, I can’t tell you how grateful I am. I still take a drug for this, but I’ve reduced what I had to take in the early days. Overall I’d say most of my symptoms have eased, even if only a little. Again, I’m so, so grateful. But I still have a tiny window of energy available to me each day, no more than 3 hours usually. I still have severe, crushing exhaustion, and dry eyes and dry mouth and so on.
But….! I’ve had some really good days recently. My mental health is overall better than it’s been in many years – and it is this I mostly want to talk about because I’m going to ask for your help again.
I was long ago diagnosed with C-PTSD – complex post-traumatic stress disorder. I have never really known what to do with this – over the decades I’ve done different kinds of therapy and therapeutic approaches, and I’m sure these helped but I still have had breakdowns and periods of severe depression. And, as you know, after the drastic downturn in my physical health in 2021 I knew I had to do everything I could, both on a physical and mental level, to at least bring me some kind of ease, for otherwise my life as it was then was not worth living.
Thanks to so many generous people I’ve managed to do a lot about my health from acupuncture to seeing private consultants. I’ve talked about Rex Brangwyn, the extraordinary EMDR therapist I worked with for several months, and then early this year I started work with another therapist, Montseratt, someone Rex recommended who has a different approach. As soon as I saw her photograph on her website, I knew she was someone I had to work with. She’s a soul worker, mentor, grief worker, doula, childbirth activist, singer and of course, a psychotherapist. She and I do weekly sessions on Zoom, and 3 or 4 intensive in-person sessions that last all day. I’ve had 3 so far, and the last one was incredible.
I was able for the first time in my life to truly access the deep river of pain that lives inside me, that lives beneath all the dissociative behaviours I’ve learned to avoid the pain. I’ve always been frustrated that I could not access how it actually felt to be seven years old and survive a car crash that killed my father in Crete, and all the associated trauma that unfolded afterwards: my mother’s severe illness, living in a foreign country and so on, not having family or friends around for support. Not to mention my early teenage experience of being an unwitting/unwilling witness to my mother’s violent and overtly sexual relationship with her second husband. And all that followed: the years of bulimia, the suicide of a friend, the near death of my own second husband. I can remember how awful it was when I was older, but when I was seven? No. The traumas that followed just compounded my dissociation, my feelings of isolation, my coping behaviours (be strong, capable, independent).
In this last long session with Montseratt felt all of the pain, all of the grief. So deeply and so fully and so painfully it literally flowed throughout my body – for hours, and at the same time I experienced an extraordinary sense of compassion and love. Montseratt was with me the whole time, witnessing what I was going through, holding me, talking with me. At one point she said, “This is home.” The issue of not having a home has been huge for me all my life – not just because I have lived in so many countries, but because I’ve never felt grounded in myself, never really felt committed to living, to life. And when she said This is home, I could feel the truth of that. And afterwards, something shifted inside me. I’d felt the pain I’d been avoiding all my life, and I’d survived. Not only survived, but discovered within me a compassion I never knew existed.
After this session I had some days and hours of feeling better in my body than I’ve felt in years, actually healthy. And even happy!
And, the work is not over, I need to practise this self compassion on a daily basis. And after this long session I knew I needed to do another one. The original idea was to only do three, but my second session was not fruitful, so it felt clear to me that more is needed to truly ground the work within me, or possibly to access other emotions I’ve repressed (anger, for example, an emotion I so rarely feel I assume I am just someone who doesn’t really feel anger, but….). Montseratt brought it up too, that one more session like that would be really helpful.
But these long sessions are expensive – not relatively, but it’s a six to seven hour process, all in one day and Montserrat is completely focussed on me the entire time. I need help to do this, and as always as I write this, I feel… awkward. I have no expectations, I trust that somehow it will be possible.
If you can help, that would be amazing. If you can’t, thank you so much for reading this far. It’s a support just knowing you have, that you are there.
Here is the link to the fundraiser: Can you support my journey to mental and physical recovery?
Previous blogs of mine on my physical situation:
ROCKS AND FLOWERS
The Real Story
The Unendurable, Part Two
IT’S NOT COVID
More Things I Don’t Want To Talk About
On Being Invisible