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).
(I actually collect rocks and stones!)
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.
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.
Ronan taking over my job (most of writing is staring into space, right?)
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.
Sandra Jensen 