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…).