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.
There was a doctor in France who told me my post viral fatigue symptoms were due to a problem with my shoulder and sent me to a physiotherapist. There was a consultant lipidologist in Ireland I was referred to, but she refused to talk to me because I was hesitant about taking statins. A doctor in Canada who refused to look at the articles I’d collected on chronic tick-borne conditions and instead told me my problem was depression. The surgeon who almost had a temper tantrum during a consultation because I was feeling faint and needed fresh air. The doctor who neglected to tell me they had a specialist nurse in the practice for menopause and hormone issues, forcing me to go private. The doctor who didn’t like the sleep medication I was on and put me on another that is harder to get off, and has worse side effects. There was the surgeon who didn’t discharge me after an operation because he was too busy, and left me in the hands of a nurse who was unaware of what I needed to know in terms of my recovery. There was the doctor who insisted I had a thyroid disorder in spite of the fact blood tests were normal and gave me thyroxine which made my hair fall out.
The list goes on. But then there was the doctor at university in England who gently indicated my mouth and said, We’ll need to take care of that. I’d had a sore there for months because I was bulimic, stomach acid splitting open the tender skin. The doctor slid open a drawer and handed me an ointment that cleared it up in a few days, and without me asking referred me to an eating disorder specialist. There was a doctor in Ireland, my mother’s, who listened quietly to my endless story of ill health, looked at me and said, We’re going to get to the bottom of this and I knew he meant it. Sadly I couldn’t be his patient because I lived elsewhere.
I have good doctors here in Brighton. They do what they can, but they are not specialists, and they have little or no time, and it’s hard to actually get a face-to-face appointment. They do refer me to specialists but it takes a year or more to see anyone, unless it’s a cancer scare (and I’ve had a couple of those). I’m on the NHS list to see a gastroenterologist, a rheumatologist, a neurologist and a cardiologist.
In the end I gave up waiting for two of these, and thanks to the extraordinary generosity of so many who donated to my fundraiser, I’ve recently seen a private rheumatologist and a private neurologist.
I saw these doctors at two different private hospitals, all quiet and ease flowing the corridors. Free coffee and tea and biscuits, nice comfy chairs. Lots of nurses and other staff to assist with whatever is needed. A universe away from the usual hospitals I’ve had to go to.
The rheumatologist, Dr. Vijay Hajela, had the best bedside manner and I left the session feeling generally better about things. I went to him as I have most of the symptoms of Sjögren’s syndrome. He listened closely, read all the information I’d brought to him, and looked not only at the symptoms that were specific to his speciality, but the wider picture. Essentially he does not think I have primary , but possibly symptoms that are secondary to another autoimmune disorder or a ‘sicca’ syndrome. He’s ordered serum ACE, IgG4, Immunoglobulin profile and ENA bloods. He feels I have an issue with my central nervous system, hence the multi-organ/body symptoms. Possibly neurological inflammation/ sensitivity. He made a medication suggestion regarding this. He was quietly shocked that I hadn’t had a pancreatic scan yet given the diagnosis of severe pancreatic insufficiency in the summer (another specialist I’m still waiting to see), and pressed for this.
The neurologist, Dr. Dennis Chan, couldn’t have been more different in manner, but he wasn’t arrogant (unlike the private surgeon I saw last year), just very comprehensive, methodical and specific with his various investigations and questions. He took a full history and then poked me everywhere with a pin; told me to walk as if on a tightrope, and did all those finger to nose tests you see on TV. I felt a bit like I had an incredibly efficient robot doctor, but I knew I was in good hands!
Dr. Chan thinks I most likely have small fibre neuropathy, which is what I thought. He has ordered a variety of tests to exclude other possibilities, including an MRI of the spine. If these don’t show anything untoward, then I will need to see a peripheral neurology specialist. He also works for the NHS and was able to order the MRI on the NHS. Probably you will get an appointment in January, he said. Or maybe February, he added with a disappointed frown. I could hardly believe it – I knew I’d normally have to wait several months or more. Later, I realised I’d forgotten to ask him about further investigations regarding various ‘head’ symptoms I have (sense of pressure in the head, extreme tinnitus, etc), and so I emailed him to check. I promptly got a call from his secretary saying he’d be happy to order a brain MRI.
A few days later I get the appointment for both, January 9th. I’m still in shock at the speed of this. I consider myself so very blessed to have been able to access these two doctors, for the choice I made, and for the support I’ve received to see them. I think about all those who haven’t been able to do what I have, who have to wait a year or more to see someone in a crowded and confusing hospital where you hear weeping and cries of pain. The exhausted nurses rushing about. They will be striking this month and I can understand why, and I wonder how it will be for those who have to visit an NHS hospital during that time.
And me. There’s more to do, and I’m still suffering physically, but knowing there are doctors like with Dr. Chan and Dr. Hajela on my case give me hope. I just wish they were easily available for everyone.
I sit here, wondering how to write. What to write. My story feels endless, and therefore boring, I’m sure. 44 weeks, at least in pregnancy, is post-term, past due. In NHS terms, it’s how long it takes to see a specialist.
I know you all want me to be better, I want me to be better! And I am, in so many ways, thanks to your support. But I still have some ongoing – and some new – symptoms that severely affect the quality of my day-to-day life. At times I feel utterly desperate, and quite useless as there is so little I can do, for myself and for others. I glance over Facebook and the hundreds/thousands of stray animals in Bosnia needing help, help that I would normally be able to assist with, but no longer.
And I want to stop defining my life by my physical situation, and I know this is possible, even if the symptoms don’t go away. I just need help, solid, professional help.
My main issues are:
Burning feet and hands at night, waking me up constantly.
Blurred vision every few days or more, so I can’t read.
Excessive dry mouth and dry eyes.
Fatigue, of a new type, for the past 6 weeks. I am constantly exhausted. I get up, eat /shower, then I lie down for an hour or two. I get up, can manage an hour or two maximum doing a couple of things, and then I have to lie down again. By then its time for supper, and then for bed. My ‘useable’ hours are shorter than they’ve ever been other than last year when things were really bad.
My GP has done all they can and now I’ve been referred to three consultants: gastroenterology for my ‘severe pancreatic insufficiency’; a neurologist for the blurred vision and burning feet, the latter could be small fibre neuropathy and this can be progressive – moving up the body, and a rheumatologist for the dryness and exhaustion, to see if I have something called Sjogren’s Syndrome. This too can have severe complications, and needs – but rarely gets – early diagnosis.
So, I have been told it will take 44 weeks to see any of these specialists on the NHS. That the ‘normal’ wait time is in fact about a year. The NHS is broken, my GP tells me. Not comforting words.
I am getting used to physical suffering, more or less, but if there are things that can be prevented by early diagonsis, or at least actually diagnosed so I know what is going on and not spend my few available hours searching the internet or checking support groups for information, it would make a huge difference. Perhaps I could start thinking about other things than my health. Perhaps the bags under my eyes might lessen. It took me a while to have the courage finally post a photograph showing how I ‘really’ look…
I really don’t think I can’t wait 44 weeks.
So, I would like to make two private appointments – one for a neurologist, and one for a rheumatologist (my gastric symptoms are the least problematical at the moment). I am hoping if there are further investigations needed, they can refer me back to the NHS, as this often is possible.
The neurologist is Dr. Dennis Chan, I have chosen him on the recommendation of others who have seen him, but also because he is heading up a Long Covid cognitive study and as I essentially have a version of LC, this might work in my favour. I will also ask him about other neurological related symptoms I have. His fee is £280.
The rheumatologist is Dr. Vijay Hajela, who comes *very* highly recommended by my doctor and others. His fee is also £280.
I’m starting a new fundraiser, to try to cover some of this – the old one feels messy and not specific enough. Again, asking for help – financial help – is very difficult. I have no expectations. The tiniest amount helps. And if you have read this far, I’m deeply grateful.
It’s eight months since I wrote The Unendurable, eight months since I created a fundraiser to help with my healthcare costs. I’m still here, I’m still suffering, although I am not, as I was then, at the complete end of my tether. Thanks to the generous support I received I’ve been doing ongoing trauma work and this is giving me a new-found inner strength, unwinding the programming I’ve had nearly all my life: “I’m alone” “There is no help”. I don’t think these things now.
Nevertheless I am still suffering physically, mostly from my adverse reaction to the AstraZenica vaccines and each day is a challenge, much of it spent lying down. I did hope to be in Germany now, seeing friends, but I just don’t feel well enough. My sciatica is manageable for the most part, but has gotten about 20% worse in the past 10 days, I’m not sure why. I try to stay positive, something that is easier these days, knowing I have so much support. I know the title of this blog isn’t what anyone wants to hear, let alone me, so I’m grateful if you are here, reading.
I still have multiple weird symptoms. It’s difficult to explain them all. In fact I had my first Twitter spat recently when someone I’ve never heard of said, “I am starting to write a paper on vaccine injuries. Which symptoms are you suffering?” I thought this sounded a bit odd, given his handle was about a sheep farm, and when I said so I was swarmed by his acolytes giving me good ticking off. Nevertheless it did make me think a simple diagram would help when people ask me what’s going on, and I’m taking, quite literally, a page out of Caroline Pover’s wonderful book “Covid Vaccine Adverse Reaction Survival Guide”. I’ve kept the book title/author in the image, but the symptoms are mine.
The funds raised by so many generous people are beginning to run out and I’m sending out my fundraiser into the world again to help me continue the treatments that already give me some relief, and perhaps there are others out there that I can’t even consider due to cost – HBOT for example, or a therapy that has helped many with Long Covid and post-vaccine-syndrome, but is only available abroad. Also possibly seeing a private neurologist as I have a 44 week wait for proper diagnosis of could be a progressively worsening condition (small fibre neuropathy). And, I still haven’t seen a gastrologist though it was two months ago I was diagnosed with “severe pancreatic insufficiency“…
It’s still hard for me to do, still hard for me to ask for money, and I have no expectations. And if you do donate, I thank you from the bottom of my heart.
Rex coiled a thick rope along the wooden floor of the treatment room, dragged out three plastic bags from a cupboard. One bag was full of large rocks, the other full of smaller rocks, and the third full of artificial flowers.
‘The larger the rock, the bigger the trauma,’ he said. ‘Flowers are for positive events in your life.’ He placed a bouquet at one end of the rope. ‘That’s for your birth.’
I did the rest: placing rocks and flowers along the rope, the rope being the timeline of my life. As I did this, Rex wrote down on a sticky note a one-line description of each event. I wasn’t to enlarge too much, I was creating an overview, a way to see patterns and themes that might affect my thought processes, my feeling about life in general. For me this has always been clear: life is unsafe. There is no one to be there for me when I’m in trouble. But I discovered much else. It took three sessions to complete, normally it would take two, but there were just too many events it was almost laughable. After I’d finished each session, Rex photographed everything, so he could put it in a spreadsheet for me to tweak.
It was an extraordinary experience, the rope and the stones and the flowers, a piece of art, really. The act of placing them along the rope a kind of performance art, even. And to have someone witness, hear, ALL of my life, in that way, well, I have no words really. And although there were so many traumatic events, I felt a kind of awe, that I’d gone through all this. That this was my life.
‘It has to amount to something,’ I said. ‘You’re a writer,’ Rex said.
In fact I’ve hardly written for many months, and I’ve not blogged about my health since April. I’ve kept waiting for the moment I could say I’m doing great. That all the sessions and the PEMF mat so many generous people have contributed towards are finally healing me. I wanted to say, I feel so WELL.
I’m better than I was. And, I’m not well. I realise I only started this particular journey in February. Seven months. I’ve been seriously ill with post-vaccine syndrome since March 2021, in extreme sciatic pain for nearly a year, and ill with an ME/CFS type illness for nearly three decades. Healing takes time.
On the emotional side, I see Rex every two weeks for trauma / EMDR therapy. It often feels boggy and difficult and painful, but it’s still very early stages and for someone with a history of complex trauma, certainly there are no overnight miracles. And Rex has a real gift, is a gift, a gift – a flower – that has been given to me, by all those helping financially.
On the physical side, there’s no question I’m in a better state than I was in February when I wrote The Unendurable. I do not have excruciating pain, just ongoing discomfort, sometimes low-grade pain. For this I am truly grateful. I’m still on morphine patches and still taking meds for nerve pain. I’m still having weekly acupuncture sessions and cranial sacral sessions every two weeks. I lie on my PEMF mat twice a day. All of these things are helping, I know they are.
The resurgence of hot flashes has abated, instead I have burning foot syndrome, most likely small fibre neuropathy (still to be diagnosed, but quite common in vaccine injury) waking me up every two hours in the night. I asked the doctor to precribe a capsaicin cream (basically chilli pepper), and this does help (I thought it might, given cayenne pepper eased my burning mouth syndrome in 2021 – you couldn’t make it up, could you!).
And I am frequently unwell, with viral type symptoms, possibly Epstein Barr flare ups. I haven’t returned to my pre-vaccine injury baseline. Some days I’m out for the count, feeling truly grim. Every day I have to lie down for an hour and a half or more, this in addition to the time I spend on the PEMF mat. I get up late, go to bed early. By nine at night, the pressure in my head, the ratcheting up tinnitus is so unbearable I basically swallow sleep meds and wait for darkness to take it all away (not to mention the sensation someone has taken a tiny vacuum cleaner to my tongue. No matter how much I drink, it gets dryer as the day goes on).
What else? Brain fog is bad. I mix up or lose words, forget names, forget what I’m supposed to be doing. My eyesight still blurs for several days in a week, so much so I can’t read emails or text on my iPhone, or even subtitles on the TV screen. (If you want to know more about basic ME symptoms, much of which these are, here is a helpful quick look guide).
And I’ve just received two worrying test results, taken because I’ve been having uncomfortable digestive issues for the past 6 weeks. I’ve now been fast tracked for a colonoscopy to screen out bowel cancer. And on Wednesday, as I scrolled my phone on the bus, on the way to have a reiki session with someone a friend recommended (Carly Steadman) I learn that another test result indicates ‘severe pancreatic insufficiency’. Googling my results was not uplifting. Worst case scenario is pancreatic cancer – which I doubt – best case? I’m not sure. Supplementation with enzymes, dietary modification. I’m still waiting to speak to my doctor. Or perhaps my pancreas will heal by itself, like the thyroid goitres that popped up (!) earlier this year, and then disappeared. I hope so. But I freaked out when I saw that test result. Yet one more thing to contend with.
I can only bless my friend (a fine healer in her own right) for suggesting the reiki session. The timing was perfect. Carly is a special kind of angel and she’s someone who has been through similar health issues as myself. I felt eased after the session and perhaps more importantly, that I’d met a kindred spirit. Another flower.
I’ve also joined an incredibly supportive vaccine injury advocacy group based here in the UK, called UK CV Family. We’re not moaning about our symptoms, we’re mostly looking to raise awareness so that vaccines can be made safer, that the Vaccine Damage Payment Scheme is actually taking us into consideration, as in many other countries. There needs to be more transparency in general, and scientific studies done to find out why some people react so badly. The mainstream media does not want to touch this issue – or has been told not to – but slowly more and more information is coming out.
Perhaps the biggest flower of the past four months, was going to Lesbos. It was touch and go whether I’d be well enough, but I decided I had to, either way. My partner, David Crean, held a Body Resonance Goddess retreat in the beautiful Milelja Retreat Centre near the little town of Molyvos. Twelve women attended. Exquisite women, inside and out. I participated in most of the meditations and sharings. I felt so loved, held, appreciated and seen. And I was in Greece, land of my heart. The food at the centre was incredible, not to mention the surrounding gardens. I would pick fresh mint and rosemary every morning to make tea; at dusk the mimosa trees filled the air with the most exquisite perfume. Bliss.
Yes, I was exhausted most of the time. Yes, I was sick, for at least two of the ten days. But it didn’t matter. I didn’t spend any time on my computer researching my symptoms and illness, I stopped scrolling my phone endlessly. There was too much beauty all around, nothing else mattered.
When I returned home I didn’t have a massive relapse (remarkable given the awful journey home). In fact for about a week, I felt truly myself. A feeling I hadn’t had for…? Years. But it passed.
Once again I understood I need community (and not just any community), I need nature.
Is this possible? David and I are still very much involved in Heartward, a group of like-minded people wanting to build an eco co-housing community in this area (there’ll be a zoom meet-up in early September to find out more if you’re interested). And, this will take time. Until then? I do what I can.
I found a day I had enough energy to be interviewed by Ruth Millington for her Extreme Holidays Podcast (the episode will be up in the Autumn), she’s another kindred spirit and the whole experience lifted my spirits. The story is one I hope to write as a memoir.
And, in spite of not feeling well, of not being able to write or read really (too tired, too ill, eyes too blurry), I decided our much-neglected patio needed help. So I’ve been planting, little by little. It’s not a private space (a thoroughfare for the shop we live above), and it’s a hot little sun trap, so I rarely sit out there, but it’s lovely to see the flowers blossom, to dig my fingers into earth. I’ve mostly planted bee and butterfly friendly plants, and some herbs. My sciatica has suffered, but it takes me out of the flat, gives me something to think about other than my health.
My dear cousin Jenny visited from South Africa recently and she asked me if I would continue to fundraise. To be honest, it’s still really hard for me to ask for financial help. And if I’m to keep working with Rex and the others, I’ll need to.
Or perhaps I’ll sell my novel instead! It is this I want almost more than anything — my child, out in the world. In the meantime, I tend to my anemones; wonder how to stop snails eating my cosmos flowers. I wait for my sage bushes to grow large enough to start plucking leaves for pasta.
I place rocks around the base of some pots. I think of them as stepping stones.
A couple of days ago I had an unusual thought. Unusual for me, that is.
I thought, I feel normal. In body and mind. I can’t remember when I last felt like this – or if I’ve ever had this thought before, given how abnormal I usually feel.
I do not wake in the night in pain, I do not wake in the morning in pain. To think that just a matter of two months ago I could not stand on my left leg first thing without excruciating pain, and by the end of the day I’d be weeping with the relentlessness of my suffering.
The change is miraculous. I’ve used this word before in recent updates, but it is. If anyone has experienced chronic pain, and then the lessening of it, they’ll know what I mean.
I’ve also talked about feeling gratitude, and I mean really feeling it. Over the years I’ve listened to meditations or been instructed by spiritual teachers to ‘feel gratitude’ – to find something to feel grateful for. I’ve searched in my mind and usually found something, although it has sometimes been a struggle. But it’s been a thought, not a feeling. I thought, I feel grateful for X, but in fact I didn’t really feel anything. I just knew it was good that X was in my life, or good that I experienced X.
Something shifted in the past weeks, where I actually feel grateful. I’m not thinking it. I’m usually lying down, waiting for sleep, and a sensation washes through me, a deep relaxation. It’s not joy – joy can be so ephemeral, almost unreal, perhaps a bit ungrounded. But this sensation is very real, and very grounded. It also doesn’t last that long, but I have a feeling it stays in the cells. It’s like I’m a plant dying for water, and now the rain has fallen long and deep into the soil to the roots. Perhaps it’s closer to one of those moments of spiritual well-being, of connectedness with all that is.
If you’ve been reading these blogs you’ll know the main reasons behind my gratitude – the shift in my pain levels, certainly, but also the support I’ve received, enabling me to step on this path towards healing–both body and mind.
I’ve done a lot of therapy in my life, of all kinds, from shamans to psychiatrists. I have a history of what they call complex trauma (exposure to multiple traumatic events). But, perhaps I’m finally getting the support I’ve really needed. It could be the multi-pronged approach I chose to help me with the pain: acupuncture, cranial osteopathy and EMDR, that latter of which I had my first ‘real’ session early this week. In fact, my therapist used a slightly modified version, using bi-lateral body movements as I re-imagine traumatic events (in particular recent ones – see The Unendurable and The Unendurable Part Two).
Even my therapist was surprised at how deep the session went. You process fast, he said. I’m sure this is because I’d already had several weeks of the other approaches, and perhaps also because of all the work I’ve done over the decades. I’ve also taken on board the fairly radical theory of back pain promoted by Dr. John E. Sarno.
And—and this is the news I really meant to write about—thanks to so many of you donating and to three dear, amazing friends covering what remained, I’ve had the PEMF mat for nearly two weeks and been using it three or sometimes four times a day. In theory someone with a long-term chronic condition like ME/CFS would only see results after 3 months of use, but I suspect it’s already helping.
I think back to when I started on this path in early February, writing The Unendurable. And to what forced me on the path: a year long’s worth of suffering, my utter desperation and despair. And now? Yes, I’ve recently had two nasty viruses, I still have weird symptoms (my eyesight randomly going blurry), I still have to rest much of the day, and I still have pain. Mostly it’s discomfort rather than pain. But that I can sit here, I literally mean sit here on a chair and not be in agony…well, I know I’ve written a lot of words, but there are no words really to express my appreciation towards all of you who have been so kind and generous. Perhaps in French: Je vous embrasse.
In the past normal was never a descriptor I wanted applied to me. I wanted to be different, unusual. I prided myself on my so-called artistic temperament, my mood swings, my emotional upheavals. But I’ve come far from this—I’ll gladly accept all the moments of feeling normal that come my way (although Ronan might have other thoughts…).
Yesterday, one of my kind neighbours drove me from an acupuncture session back home. Accompanying her was a friend of hers, a young woman (well, I have no idea how old she is, I feel older than most women I meet these days). “This is Amie, who I was telling you about,” my neighbour said – someone else with an ‘invisible’ condition.
I asked Amie what was going on for her. “Oh it’s a very long story,” she said. I smiled. “Don’t worry, mine is endless,” I said. So she told me. And it is a deeply sad story, of someone who has gone through so much, struggled so much, with bizarre and strange and highly debilitating symptoms – including waking up one day to find the skin on her face suddenly droopy – and then the rest of her body following. It’s likely that endocrine issues and pyroluria are a part of what’s going on, but she still has not got to the bottom of it and doctors seem largely unable to help. She’s had to deal with this for so many years, and you’d never know unless you asked. To look at her you’d think she was fine, a bright, funny, gorgeous person.
Amie has found for herself a way of being in the world that helped create at least a small improvement on how it was, step by step, but what a path to walk.
I’ve talked about invisible illness before. I’ve talked about my own physical issues – a lot, lately – maybe too much for most of you reading. But after decades of not writing about what’s going on for me health-wise, this past year of, well, pain and suffering and crushing exhaustion, seems to have pushed me to doing a lot of things I wouldn’t normally do: write more about what’s going on for me, and ask for help – financial help! such a massive step for me to take – and help from neighbours to ferry me to and from various medical and therapeutic appointments.
I already knew I wanted to write this blog but synchronicstically a friend sent me a link to an interview with the poet Meghan O’Rourke, talking about her book, The Invisible Kingdom, Reimagining Chronic Illness. I didn’t know about Meghan, or her book. The interview is great, it’s short and well worth listening to.
Like so many of us with chronic conditions without clear treatments or even diagnoses, Meghan had to become a detective of her illness, and an advocate for herself.
She talks about the additional pitfalls of this approach: “It’s an irony of illness like this that the more invested you get in saying, no, here are all the little problems, and here are the labs that maybe point to it. The more you look like a hypochondriac.” She talks about how much support one needs – and, generally, money, given the lack in healthcare systems for these kinds of conditions. And what if there isn’t support or money? It’s extremely hard. I know all too well how exhausting and often disheartening it is to be my own advocate, to try to find answers.
“You have to have just incredible determination to live with a chronic illness, and in some sense, that’s really the subject of this book that I think I did not understand that before I got sick,” Meghan says.
She also describes some of what the “well” can do to help those who are not – simple things like accompanying them to a doctor’s appointment. And listening. Really listening, not offering advice.
When I shared with Amie about some of my issues and about the vax injuries, she said, “I’m so sorry.” I could tell she meant it. Most people tend to respond with something like It could’ve been worse if you’d caught the virus. Which makes me feel I just can’t talk about what happened to me at all – amongst other reasons which I mention here.
What I’m mostly trying to say is don’t take anyone for granted, don’t assume someone is doing fine just because they look fine.
Many of us will present ourselves one way to the outer world, but at home, in private, it’s another story. I suspect for the chronically ill, the ‘other story’ is usually even more extreme.
Here’s a little of what goes on for me. I wake up after a generally bad night (due to pain and a resurgence of hot flashes after five years of none, or my latest ‘fun’ symptom: my skin feeling like it’s been given a wrist burn, but all over…), I stick on my TENS pads, limp around until the pain eases, feed Ronan, take my various supplements etc, shower, feed myself, stand out in the sun for a few minutes, do a few movements to help my back, and by then I have to lie down again, usually with my ear pressed to a hot water bottle, so there’s that rigmarole. I get up, have some tea, try to check emails (standing, with my little standing laptop riser as I can’t sit for very long), make something to eat, then I have to lie down again (with another hot water bottle). If it’s a relatively “good” day I’ll walk around the block. I haven’t made it to 4000 steps a day yet, but that’s my goal. Many days it’s nothing close.
I might have a little time before supper to stand some more at my desk or I’ll be attending one of my therapeutic or medical sessions. Then it’s supper, and some uncomfortable sitting-up-straight watching TV and then some uncomfortable lying on the couch on my stomach (the only way I can lie without flaring up pain) to watch a little bit more. By 9 pm I’m smashed.
There’s my night time regime of meds and supplements and hot water bottles, shower, then I fall into bed.
What have I done? Virtually nothing. Writing this blog is actually a large undertaking for me.
There is the rest you wouldn’t see:
The past six weeks of having to wash and dress my incision three times a day from my laparoscopic surgery to remove a cyst and ovaries (not to mention having to use other ointments twice a day on other skin conditions, including nappy rash ointment on the blisters caused by using the TENS machine…).
And, I weigh 90 pounds (6.4 stone), when I should weigh 110 at least, but I can’t seem to put on weight in spite of pouring olive oil over everything and eating coconut butter by the spoonful and so on. I wear loose clothing so I look pretty normal, just ‘petite’.
Nor would you see the frequent crying jags when I get so overtired every part of me feels like its screaming. Or the chronic tinnitus in my head that sounds like a cross between a fire alarm and a grater on a violin string. It’s worse when I have a flare-up of ME/CFS malaise (like you’re coming down with flu), usually for at least a couple days each week. And this isn’t the half of it.
As I said, everyone hides aspects of themselves, or aspects are simply not visible, this is not unique to those with invisible illness.
And, there is this added dimension, a weight of carrying years of suffering, of living with conditions that currently aren’t treatable. The weight of staying determined, of not giving up. Of putting on a brave face, as I suspect most people – family and friends even – would struggle to witness ones true face all the time.
But after talking with Amie, and with my kind neighbour who drove, I felt lighter, happier. We laughed about star signs and being a Pluto person, and when I stepped out of the car and took my mask off, Amie said, “Oh, you’re beautiful!”. For a moment it was as if I wasn’t sick, as if I was a normal person.
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!]
In her beautiful memoir, The Shapeless Unease, Samantha Harvey talks about having to endure her life when it’s unendurable. She writes specifically about insomnia, but much of what she says feels so close to my own journey. This phrase, enduring the unendurable, has come to me many times in the last year. I’ve had chronic illness for a quarter of a century [Edit: I originally wrote quarter of a decade… brain fog!], and often my symptoms and the fall-out from the disease have felt intolerable, but then things changed in March of 2021. Since then I have been enduring the unendurable.
It actually started before March, perhaps late 2020. I developed a condition with an almost laughable name: Burning Mouth Syndrome. I thought it was a version of dry mouth, one of my many symptoms, but then it got worse, and worse, an ongoing sensation that I’d gulped down a hot cup of tea, that my tongue was scalded. Sometimes the tip was red and sore to the point of affecting my sleep. I’d weep with the awfulness of it. There’s something about pain and discomfort in the head/face that is particularly distressing. I eventually discovered two things that helped, holding chamomile tea in my mouth, and, bizarrely, pasting the affected parts of my tongue with cayenne pepper. At first I made a solution with water and powdered cayenne pepper, and then I just used straight cayenne pepper as it was easier…
And then, came March 2021. I did not want to write this blog, partly because of how much energy it would take to do so, but mostly because of what I’m about to write. I had my first AstraZeneca vaccine in March. It caused the worst ME/CFS crash I have ever had. I spent many days and weeks unable to do anything but lie in bed – doing what so many with ME/CFS know well: ‘resting’ but without ever feeling rested. I slowly began to recover and took the decision to have the second vaccine in June. The reaction was not as severe, but just as unrelenting. I am still not back to my pre-vaccine state. Essentially I have moved from mild/moderate ME/CFS to moderate/severe ME/CFS. All of my usual symptoms are doubled or tripled in intensity: fatigue, light/sound/skin sensitivity, brain fog, tinnitus, dry mouth, dry eyes, inability to walk for more than a block or so… And then there were other little delights, for example, at some point in September I had mouth ulcers so painful I thought I had an ear infection.
Essentially, on top of ME/CFS I have vaccine-induced Long Covid. I am a “vax Long Hauler”, as some call it. Yes, there are others like me. I am not an anti-vaxxer, and I know talking about my reaction will fuel the anti-vaxxers, which I do not want. It’s important I also say some people with ME/CFS improved after getting the COVID vaccine. I want you to read that sentence again before jumping to the conclusion that the COVID vaccines are inherently toxic. I’ll write it again: some people with ME/CFS improved after getting a COVID vaccine.
Unrelated to the vaccine, a low-grade sciatica I’ve had for years began to ramp up. And then it ramped up again, and again. To the point where I couldn’t stand on the affected leg in the morning the pain was so piercing, to the point I was weeping in pain (weeping is something I’ve been doing a lot of this last year). I went to a physiotherapist and he put me on an exercise regime, but I wasn’t getting better, I was getting worse. Finally I had an MRI in September which showed “Left L5 nerve root compression” or a disc bulge in my lower back that’s pressing on the nerve going down the left leg. Some googling and an osteopath put me on a different regime, but the pain is at times intolerable. Sitting for more than a few minutes increases the pain, lying down increases the pain.
Writing, reading, and resting have become almost impossible. To have ME/CFS and to be unable to sit or lie down is, well, a tiny form of hell. I can’t look forward to watching a mindless TV drama in the evening any more, as the only way I can comfortably watch TV is in cobra position. I’ve had to teach myself to sleep on my stomach, not exactly comfortable.
I was, I am, living on a variety of pain killers. I had a steroid injection in December, which for some can be a miraculous cure to nerve pain, but not for me.
The pain lessened, and then got worse, and now I’m in constant 24 hour pain or discomfort. Sometimes it’s as if there’s a burning coal buried in my calf, or that a hot iron is pressing against the back of my thigh. I can wake up in the night feeling as if someone has kicked me in the sacrum. I used to have some periods in the day without discomfort, but no longer. All this in spite of the pain medication. I’m waiting for another steroid injection, as I’ve been told sometimes it needs to be done in a slightly different place, but right now all I see in my future is pain, and fatigue.
Most of my waking hours revolves around trying to alleviate discomfort or heal my body. I meditate for long periods twice a day (lying flat on my stomach, the only possible position). I consume all the appropriate foods and supplements. I’m lucky to have a couple of skilled friends who generously offer their time and knowledge. I’d love a month or more at a spa with thermal waters and clinicians / body workers specialising in my various issues… or a series of MDMA trauma sessions in the Netherlands to give me a totally different experience of life, even if only for a little while.
But even if I knew where to go, these things are, for me, unaffordable.
My Burning Mouth Syndrome did improve, it’s not gone, but it’s much better, so there is that to be grateful for. And lately I started developing other weird symptoms: nausea and a short lived spike in my body temperature after eating or drinking something hot; my eyesight suddenly going blurry. And then, the other day, I was doing my cobra-position TV watching, and noticed a lump on my throat. It’s probably been there for a while. I haven’t exactly been paying much attention to how I look. My doctor thinks it’s a thyroid goitre, and has booked me in for a scan, most likely it’s just a watch and wait situation. It’s not giving me pain, and although I freaked out for a couple of days, it feels the least of my concerns.
What else about the year? Anything good at all? Well, yes. I try to remind myself. I turned 60 in August. I spent an afternoon with wolves.
And, I finished my novel in late spring, the novel that won the 2019 Bridport Prize. I finished it largely thanks to a Project Grant I received from Arts Council England, and The Literary Consultancy assessment and mentorship process that was part of the Bridport prize. Jonathan McAloon gave the initial assessment: a highlight of my writing life. He wrote “…of the fifty or so novels I have written reports on through the TLC, whether from first time novelists, those who’ve won a read like yourself, or established authors, your novel seems the most complete, and has given me the least causes to criticise.” My TLC mentor, Anna South, wrote in one of her final reports: “It’s very likely Samantha will prove to be one of those rare first person narrators who’ll live on in my memory long after I’ve turned the book’s final page.”
For various reasons the novel was ‘on hold’ for the rest of the year but it’s now on submission to agents.
And, also thanks to Arts Council England and to Sam Ruddock at Story Machine, I wrote four blogs that are mostly aimed at supporting writers living with chronic illness or disability. You can find them here. We recorded two podcasts where Sam interviewed me about my work and my life as a writer with chronic illness. I’ll make a post as soon as they’re live. Also part of this ‘project’, I led a webinar for writers with chronic illness, disability and other chronic conditions. While we did not discuss our situations in detail, the participants expressed how relaxed they felt knowing they were writing with others who knew chronic suffering. Some of them were experienced writers, including two playwrights. I shared my approach to writing, and the work that came out of the exercises was vibrant and exciting. What I did not expect was how nourished and energised–and relaxed– I, as workshop leader, would feel. Normally leading workshops on Zoom drains me, but not this time. Thanks in part to Sam Ruddock’s lovely hosting, but the main reason was simply being with those who understood what it meant to have one’s writing life impacted severely by physical challenges. Several of the participants expressed interest in further workshops, I’m truly hoping Sam and I will be able to do this.
But, after I’d finished my novel and was waiting for the next step in its journey, I stopped writing fiction. For the first time in many years I didn’t have a novel or short story to attend to, instead I attended to my multiplying physical issues. My mental health kept on spiralling downwards. I stopped reading. I haven’t read a book since October 2021. Normally I read at least two novels a month. I can’t read other than in cobra position–lying on my back or my side hurts too much, but mostly I stopped reading because I was just too depressed or too involved with all else.
I have felt so isolated in all this. My friends are, for the most part, dotted all over the world and I’ve found it hard to keep the connections. I send an email, and can’t follow up. I start a WhatsApp conversation, only to drop away for days or weeks – or months. And if I do manage an actual conversation, talking exhausts me. I used to be heavily involved in animal rescue on Facebook. No longer. Some days I can barely manage a single email. My to-do lists become longer and longer, or just get lost in the morass on my desk.
An astrologer friend of mine who I’d lost touch with, reached to me out of the blue. I managed to tell him a little of what was going on. He decided to check my chart: it is as if you have been in the centre of the world’s chaos. He also said things should ease gradually, oh that this be true!
I started The Shapeless Unease in January and while I’m reading it very, very slowly, perhaps this marks a shift. In the (distant) past I had an extended period of not writing, yet when I started up again I was, as if by magic, a better writer. I have to trust this will be true for me this time.
Sam Ruddock has invited me to write more on what it means to be a writer living with chronic illness, to share any supportive tips I might have. I’m excited about this, and daunted, given my recent track record of zero creative writing… As I put this sentence down, I realise I need to re-think what “creative” writing means to me. In November I started the Page-a-Day process with a dear writer friend. It seems to me I’m just cataloguing my woes, but my friend insists not. Perhaps she’s right. Perhaps one day I’ll read through, and find something beautiful.
I recently managed–forced myself really — to attend a five-day Arvon writing workshop in Devon where Samantha Harvey was one of the tutors (she’s just fantastic). This in itself is a massive achievement, I’ve not been anywhere for 2 years (I’m paying the price however, with a kind of tiredness you might feel after several back-to-back transatlantic flights). But…. I did make lovely connections, and have some unexpected ideas for another book, thanks to a chat with one of the participants over supper. How does a comic memoir about a ruby deal going catastrophically wrong sound? Synchronistically on Twitter I saw that Ruth Millington heads up an Extreme Holidays Podcast… I asked if she might be interested and she is!
And, the physical story isn’t over.
In two days, on Sunday, I’m having laparoscopic surgery to remove a large and growing ovarian cyst. I’ve been putting this off but finally felt it was time to do it. They’ll remove both ovaries and my remaining fallopian tube. The last time I had laparoscopic surgery I healed well, apart from my belly button incision, but I was not as debilitated as I am now. If you can think of me, that would be lovely.
I have a wonderful new GP who told me to do some grief work around this operation. When I said I’d never wanted children, he leaned close and repeated firmly, Do some grief work. My partner has gathered stones and seaweed from the beach. I’ve added a stone from the ocean where we spread my mother’s ashes in Crete. I wish her to be with me now, more than ever. We’ll do the ceremony on Saturday. I hope for sun. I hope for a good day.
I simply hope.
For my book to be published. To be pain free. To no longer be in the centre of the world’s chaos.
And there is much to be grateful for. My partner, who goes through all this with me. It’s easy to forget sometimes it’s as hard to witness a loved one suffer as it is to suffer. I’m grateful for my brother, who checks in on me from whereever he is, Portugal, Brazil. For the friend who brought tea and food when my partner was away and I had to go to Accident and Emergency, and waited for me in the cold for hours until I was seen. I’m grateful for Ronan, who seems to know something is wrong.
I’m I’m grateful for trees. For stars.
And I’m grateful if you’ve managed to read this far. (Please forgive spelling /grammatical mistakes and looping repetitions, my mind is not at its best, to say the least!). There is an update below the tree.
Update, 20th February 2022 The operation went well, as far as I know. I was not warned about post-operative gas and experienced the most extraordinary pain for about 24 hours because of this. And then, the sciatic pain doubled. To the point of utter despair. I made a fundraiser to try and help me find answers, and it tells more of the story. I will soon write another blog about my process around this, which has not been easy – to ask for help.
When coronavirus moved onto UK shores I noticed, whenever I said “I’m not well,” in reply to “How is your health?” I’d hurry on to add, “It’s not coronavirus.” And more recently (fewer syllables!) “It’s not COVID.” I suppose I was saying, “It’s not so bad.” Who was I trying to reassure? Me, or them?
Actually, during the early days of the pandemic, I was not especially afraid of getting coronavirus. I do not usually catch ‘normal’ illnesses (colds, flu etc.), and, during February and March I was enjoying a remarkable period of wellness, spending my time and thoughts on the second draft of my new novel.
Of course it very soon became clear that COVID-19 is not a ‘normal’ illness, and when my health deteriorated rather dramatically with some delicious new symptoms, the very thought of feeling even grimmer than I was already feeling seemed unbearable. In fact, I have no idea know how my body would react to the virus – I don’t have any of the conditions that would put me into the government’s ‘high risk category’.
What I do know is that some people who “recover” from COVID-19 are not, so far, fully recovering. They have similar symptoms to those who have ME/CFS. There is even a new term in the pandemic vocabulary: “Long Covid”.
“With an estimated 25% of people with ME/CFS housebound or bedbound, patients suffering from the lowest quality of life of any disease to which it has been compared, including multiple sclerosis, and only about 13% of patients are able to return to full-time work, the potential for many new cases of ME/CFS in the wake of COVID-19 is no small matter.”
Lockdown is opening up in England. But it is not opening up for anyone with the severer forms of ME/CFS. My own ‘lockdown’ life has been largely unchanged by the pandemic. And, due to Long Covid, it’s possible the medical community – the world at large – will finally give ME/CFS the focus it needs, a condition of which my own GP said: “We do not know what it is, and we do not know how what to do about it.” Will she, at some point, be able to tell me, “I believe I can now help you?”
Which brings me to what I really wanted to share today: the question of whether anyone who is relatively well and able-bodied can understand the subjective experience of someone who isn’t. I wrote in an earlier blog: “In spite of finding my health issues tedious to dwell upon, just sometimes, I’d like someone to know, to really know what it is like to live in my body.”
I tend to stay on the periphery of the ME/CFS communities because I often find myself lost in a depressive warren of questioning (Is there something I’ve overlooked? Should I find the money to pay for the more accurate Lyme/Rickettisa tests not available on the NHS? Should I be tested for Tethered Cord Syndrome? What about mould?), but recently on Twitter I stumbled across Vlad Vexler’s ME diary.
Vlad is a philosopher working in ethics and musicology, and, he has ME.
He has recorded over 50 two-minute videos, articulating beautifully and elegantly what it actually means to have a chronic ‘invisible’ illness. Many of his symptoms differ to mine, but I found myself deeply moved listening to him. The talks – more a conversation than a ‘talk’ – are wide-ranging: how people with ME are judged and misrepresented when they temporarily function better; how people with ME have to fake and fabricate to enjoy simple pleasures; how people with ME are, in fact, too unwell to be “fatigued”, to name but a few.
Vlad has compiled these diaries on YouTube, and if you are able bodied, I urge you to watch them. Two + hours might seem a lot, but he is an engaging, vibrant speaker – even at his most ill. And, two hours or so is so very short compared to how long many of us have suffered with this illness – over 25 years in my case. And, if you have ME or a similar condition, I am sure you’ll find a great deal of comfort in his words. It is certainly a comfort to me to know there is this voice in the world, telling the world about us.
And, I worry he speaks to the ‘converted.’ So please listen, please share.
Covid-19 has perhaps shown many of us just how connected we are; and just how important it is to stay connected. It is often in the darkest times we deepen our humanity – we reach out to others (even if only via Zoom) and we begin to enquire into the experiences of those who have it worse than we do. In this way we make the world a better place.