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.

Update, 9 March 2022
A new blog: The Unendurable – Part Two

Three previous blogs of mine on my physical situation:
More Things I Don’t Want To Talk About
On Being Invisible

25 thoughts on “THE UNENDURABLE

  1. Oh Sandra this sounds like a living hell. You describe your pain and situation so vividly and really bring home what living with ME/CFS is really like. I’m sorry that the vaccine made everything worse. I’ll be thinking of you as you undergo all those procedures. Are you a patient at the Royal Sussex?

  2. Dear Sandra, I don’t want to tire you out – even further – with a long “reply”, so will make this as short as I can. I have followed your posts – and love of animals – on FB for a long time. And the ‘story’ of you and your mum. You have all of your mum’s pluckiness and courage – or you would not have endured all that you have with such grace and perseverance. She will be with you on Sunday, as will my prayers – beginning right now, as I am writing this – and continuing on in the days to follow. Much love to you,. Claire

  3. Sandra I’m so sorry to hear that you’ve been in pain. I’m glad you’re not going through this alone. Much love to you ❤ Having been through mind breaking sciatica, I hope you find the path that leads to wellness because that is a gadawful pain.

  4. Sending love and reiki Sandra. You changed my life with Diving Deeper. Thankyou. You give and give and that’s what sometimes contributes to your ill heath. Time to accept wonderful things in return. I was thinking water is a healing medium that may benefit you and then you mentioned spa waters. Even a swimming pool. Addressing all those small things that don’t seem related may improve how you feel. I have found that living with an auto immune illness has improved when I had my thyroid removed, then a mastectomy, then a great deal of swimming and water rehab for the cancer has all greatly improved my wellbeing. I believe there is hope for you. I also have a wonderful very gentle chiropractor who has made a big difference.

  5. Dear Sandra, Thank you for sharing and I wish you moments of sweet relief and lasting improvement. I am so glad you have the support of a loving partner and Ronan. Sending you energy, strength, and continued perseverance toward healing. Love, Allison

  6. Dear Sandra, I’m so terribly sorry you’re going through all of this. I do understand very well, having endured ME/CFS for years plus a slipped disc since childhood.
    I mention this because for me, the ME/CFS did slowly get better. It took time and I knew you’ve already had this apx 25 years if I read that right. I had the benefit of a wonderful Naturopath, Jaine Kirtley, who had since moved to New Zealand. I’ve never found a better Naturopath and I believe she would do an online consultation.
    I hope you’re receiving all the correct benefits, including PIP. It’s still hard financially but without it would be impossible.
    I’m not at all religious but I will be thinking of you and sending love and hoping you’re procedure goes as well as possible. Maybe more importantly, I hope you see the Grief work through. I’m sure you know that grief of any kind will manifest in the body. Forgive me if I’m telling you what you already know.
    You do yoga or have done when you could I presume. A session I did a while back, released stuck emotions in the belly. I sobbed for the whole hour and a half of the session and it was so cathartic. Unfortunately I don’t know what my teacher has is do but I could try and contact her and ask if she’s still on FB.
    Sorry, its a bit long and it will tire you. No need to reply even if you can.
    Please believe this will get better but my goodness I can understand the exhaustion of the pain and the endurance needed.
    Much love to you. You’re a special person, loving and kind, you deserve happiness and freedom from all of this. I pray, in my fashion, that you have those things soon.

    • Susan… thank you so much for this. I only found out I might be eligible for PIP this year….financially things are awful… so have applied but have been told it could take a year or more …. I do think I have a lot of unresolved grief and met with a therapist yesterday (zoom, she’s in Portugal), hopefully she can help – I’ve had tons of therapy but no-one to see me through all this, sadly and then I was in too much of a crisis to find one. I can’t do much yoga due to my pain issues but certainly I’m interested in anyone good… I will look into Jaine Kirtley – I do have a friend who is helping me with supplements and so on but still. thank you xoxxo

  7. Sending you the biggest hug and some healing vibes. You rescued me a long time ago when you were involved with rescuing little Masha from Bosnia in 2016. She found her way to me and is now my soul mate and support through my journey with ovarian cancer. I’m not suffering anywhere near as much as you but empathise with not being comfortable most of the day and fatigued and not able to do what I used too. Hope the op goes well, mint tea for trapped wind afterwards! Marlie (Masha) sends you her biggest tail wag. Kx

  8. I hope for a good day for you too. Congratulations on finishing your novel! It is a great achievement. Bodies and we as beings are so complex … But you really have a lot to bear at the moment! So I wish you strength, as the Dutch say, and all the best for the surgery and for your recovery.

  9. Thank you fro sharing this Sandra. It touches me and brings up many memories of the connection we have shared for many years. It brings tears to my eyes and I so want you to feel better. I will be think of you and holding you in my thoughts on Sunday (I guess tomorrow) when you have you procedure. I would also love to hang out again one day in the warm pool at Harbin Hot Springs. Those are some happy memories.

  10. Dear Sandra, I’ve just read your newest blog entry and your words (one again) touched me deeply. I am feeling compassion and grief. I had some of your symptoms somewhen during my own life and I am honest – I am not able to imagine how unendurable it would feel to have all the symptomes you described at the same time and some of them for soooo many years.
    And I feel hope and faith. I ‘was with you’ on Sunday and I prayed the days before and I really hope you are recovering as fast as possible now. I am sending love and wish you a lot more of endurance and ease and joy. With loving care of mine.

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