Tag Archives: chronic pain

Stopping the Fight

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Pink flower

I thought The Untellable Tale was a difficult blog to write. In some ways this feels harder. It will be short however, which I’m sure will be a relief for those of you who so generously do read my long health blogs.

If you read The Untellable Tale you’ll know I had an extreme reaction to antibiotic therapy for late stage Lyme disease. I stopped the antibiotics on February 1st, and now, nearly six weeks later, I’m still not back to my pre-protocol baseline, but all the extreme symptoms are no longer. I am left with crushing fatigue, poor sleep in spite of sleep meds, almost deafening tinnitus and extremely poor memory. What has been more difficult to navigate is my mood, which has been very low. Not exactly depression, but close. No motivation at all. Everything feels flat, joyless. I suppose this is to be expected. My lovely acupuncturist said my body seemed to him in shock, the kind of shock you might have after a sustained period of trauma.

The past few days I feel the mood lifting a little, giving me the motivation to finally write this blog.

I had another consultation with my private consultant to discuss an alternative, more gentle protocol, largely herbal and supplement based. He said that the stats on this protocol are good, 70% make a good recovery, 20% a partial recovery, and 10% don’t experience any recovery. After the consultation I was still very conflicted, knowing that there is no certainty, that even on a gentler protocol there could be side effects and herxheimer reactions.

After a couple of weeks I finally had the energy to total up the costs of the new protocol. It is unaffordable at well over £500 per month, and I’d have to do it for at least 12 months, more likely 18 months. In some ways this made the decision of what to do easier for me. I am not going to continue. Now there is a grant I could apply for from a European Lyme disease organisation, but I can’t apply until the summer, and I’m unsure what they would cover if I got it. I may, or may not apply.

What has come to me instead is a radical shift.

To stop trying to fix my health. To spend the few useable hours I have per day doing things that nourish me. To stop googling side effects and cures and the latest supplements, to stop reading all the posts in the various forums I’m in on ME/CFS and Lyme Disease. To train my mind to stop focussing on every new symptom as something potentially traumatic.

While I’ve had my chronic illness for three decades and many of those years have been spent looking into ways to improve my health, things changed in 2021 when I got so very ill from the AstraZenica vaccines. I joined Facebook groups (and if you are in the UK and have a vaccine injury I cannot recommend highly enough the UKCVFamily charity/support and advocacy organisation, also on Facebook here), I tried so many protocols and supplements and had so many doctor and specialist consultations given my varied and bizarre symptoms from thyroid goitres to small fibre neuropathy, let alone the malaise and all else.

Actually, what I most remember from those awful times (and I’m still not back to pre vaccine injury health) was thinking, What if I can’t fix my health? What can I do? And the answer I got was to restart trauma therapy. Not just for the trauma of the adverse reaction, but to take another look at the multiple traumas I’ve experienced in my life. I have always considered my illness to be a mixture of trauma and pathogen, and largely a damaged nervous system from both.

It’s interesting to me that I am still in therapy, that I have recently experienced what was even more traumatic than the adverse vaccine reaction, even if occurred over a shorter period of time. I am so grateful that I am still in therapy. That I have an amazing therapist who doesn’t let me off the hook. I told her about possibly stopping trying to fix my health. She asked me how that felt. It took me a moment and then I said, it feels really good.

And, it’s clear it’s still a deeply challenging decision for me. I was sending a voice message to a friend and when I said, I’ve decided to stop trying to fix my health, I broke down in tears. I’m not sure why. Perhaps because it’s become so much part of who I am, and part of my day-to-day life. And it’s not as if I won’t take care of myself in whatever ways I can, but I want to stop trying to find a cure. To live within my limitations. I suspect this is one reason for my low mood: I’ve let go of something I have been engaged with every day for years, if only to remember when and how to take certain medications, with or without food, how much money do I need to raise to do X, blah blah.

So now what? I’m not writing (other than this, which is proving to be long, not short, as per usual). What about just ‘being’? Noticing when my mind attaches to a symptom and starts to either try to problem solve it or consider a dire future of worsening symptoms. I’m good at problem solving. My mother was the perfect role model for this. Good in most areas other than my health, that is. I was sorting through some old papers in my office this week, and I’ve been trying to problem solve my health for thirty years with increasing amounts of money and time involved.

Can I stop? Just stop?

Black cat surrounded by houseplants

And what about the incredibly generous people who have donated to help? It’s hard to ask for money. Harder to say, well, I’ve spent it on something that I can’t continue. I sit here, not knowing what to say about this. If I ever sell a book I will refund each and everyone of you. But I know that even if I do sell a book, it’s very unlikely I’ll make enough to do so. I know simply asking has helped me rewire (a little) my programming that I have to do it alone, that I am alone, that it’s not okay to ask for help. On the contrary, asking for help has connected and reconnected me to so many beautiful and generous people, and it is this connection that is one of the things I want to focus on, rather than the fixing of my health.

Sophie Strand who redefines illness and trauma in so many ways including asking “What if sickness is not a separation from the body?” writes the following in her memoir The Body is a Doorway:

If I can’t fix this then let me understand how it could be my superpower. If I can’t close my sensory gating, then open me wider. Dilate me like a cervix so that I may be the birth canal for stories that are not about human beings and human progress. Let me become a doorway for viruses and ecosystems and fungi and dove song. Let me become a doorway so big and so open that a new way of being can emerge, one not tied to the fiction of human individuals. One that is equally aware of the agony and ecstasy and is allowed to wildly swing out of the window of tolerance, achieving both the valleys and peaks that our culture has denied us. Let me exceed the graph. Let me swing past wellness into something wilder and less predictable.

Perhaps my recent awful health experience has taught me something. Perhaps I’ll more fully understand what that is in years to come, but I have an inkling that one thing is reframing the idea of illness as ‘wrong’. Not that I would wish it upon anyone, but perhaps there is another way to be with it. To stop fighting. To spend time doing absolutely nothing. To rediscover the joy in simply being, even with – or especially with – pain and physical suffering. It’s not the first time I’ve been here, I still remember a lightbulb moment, so long ago, in Mexico, when I had one of my many acute kidney infections, and I realised ‘fighting’ what I was physically experiencing was only making it worse. I was literally trying to push myself out of my body, as if that is even possible… so instead I surrendered, and while the pain and malaise did not change, something else did. It simply felt easier. When I do my Yoga Nidra guided meditations on Insight Time, and the person speaking asks me to come up with a ‘sankalpa’ – a hope/resolve/intention – what comes to me most often is to ask for ease. Not health. Not even happiness. Ease.

Black cat looking up

Previous blogs of mine on my physical situation:

The Untellable Tale
My Late-Stage Lyme Treatment
My Late-Stage Lyme Diagnosis
The Art of Illness: Part Two
The Art of Illness
Finding Home
Doctor, Doctor
44 Weeks
Still Suffering
ROCKS AND FLOWERS
Feeling Normal
The Real Story
The Unendurable, Part Two
The Unendurable
IT’S NOT COVID
More Things I Don’t Want To Talk About
On Being Invisible

THE ART OF ILLNESS: PART TWO

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For some reason I cannot post an update to my Fundrazr Can you support my journey to physical recovery? So I emailed everyone who donated, and am going to post a version of what I emailed, as so many lovely people have reached to see how I am doing. (If you are stumbling across this blog and don’t know the ‘story’ (and want to!) have a look at The Art of Illness.)

I just had my first consultation with Dr. Ben Sinclair, which is what the fundraiser was for, two consultations with him. Oh I wish all Doctors were like Dr. Sinclair. Prior to the session I had completed several pages of questions regarding my health history and so on, which he had read through prior to the meeting (Google Meets). Dr. Sinclair was very thorough, and my take was he had an excellent, intelligent and multi-disciplinary approach, taking in all the complicated aspects of my story. As I also suspect, I most likely have both viral and bacterial issues, plus damaged autonomic nervous system / dysregulated immune system, from both trauma and pathogens (including EBV, HSV, mycoplasma pneumonia, tick-borne disease etc). He listened really well, was articulate and positive, and I felt had a clear understanding of the many issues I have/have had. He himself had Long Covid and had such poor treatment on the NHS, which is why he started his own private practice with a small team behind him including Dr Carsten Nicolaus who specialises in Lyme, tick-borne diseases and associated health conditions.

Dr. Sinclair came up with a plan for me:

First off I need to do some blood tests on immune function, vector borne diseases and so on. Some of these I might be able to have paid for on the NHS, others will have to be done privately. I won’t know for a week or so as I’ll be filling out further forms and discussing with my own NHS GP what she can get done. I am hoping I have enough from what was raised to at least cover the blood tests, but I’m not sure at this point.

Once the tests are done, I will go on a trial of a month of the antiviral drug, Valacyclovir (which I know my NHS GP will be willing to prescribe, thankfully). This is something I’ve been thinking of doing for a while. Dr. Sinclair talked about ‘clearing the decks’ so to speak, before bringing out the big guns (my words!) – as it will help him decide more specifically what to use – antibiotics or alternative approaches or both. 

Dr. Sinclair said a lot of very encouraging things, including how it’s possible my activated sciatic nerve issues could be connected not so much to the prolapsed disk but to all else that is going on. I do know there are people walking around with exactly my diagnosis (pinched nerve from prolapsed disk) who have NO pain, so…. It would be miraculous if this was one of the many things that eased with his treatment programme. And, he thinks my restless leg syndrome could also be an aspect of the whole situation. It would be so amazing if this also cleared up! And, it will take time. I think we are talking about at least 6 months or more of treatment.

My health has been bad lately, including a week of such profound physical weakness I could barely open my eyelids. This is very unusual for me, it might occur for about an hour in the evening but not for a full week. I was so despairing I thought if I had the funds I’d check myself into a respite care or something similar (mostly respite care is for carers, but as I am my own carer for the most part some respite would be lovely…). Thankfully the weakness eased.

Anyway, I am eager to get started on this journey!

I’m sure most of you aren’t interested in all these details but I did want to update once I had the first consultation. 

Again, thank you all so much for reading, and for your generosity.



Previous blogs of mine on my physical situation:
The Art of Illness
Finding Home
Doctor, Doctor
44 Weeks
Still Suffering
ROCKS AND FLOWERS
Feeling Normal
The Real Story
The Unendurable, Part Two
The Unendurable
IT’S NOT COVID
More Things I Don’t Want To Talk About
On Being Invisible

THE ART OF ILLNESS

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It’s been over a year since I wrote a blog about my health (the latest one being Finding Home). Mostly because not a lot changed since then, both positive and negative aspects were on an even keel – nothing drastically new, but manageable, many thanks to all the support I received from so many of you. So: better mental health, lessening of weird symptoms (burning mouth/foot syndrome, thyroid goitres etc) but still the small window of energy each day, bordered by exhaustion, still a continuous discomfort veering sometimes into pain down my sciatic nerve, still my pancreatic insufficiency for which I have to take digestive enzymes with everything I eat, still getting up in the night to wee several times, and sadly the restless legs returned when I stopped the sciatic pain medication, but if I can get my ‘bad’ leg pulled (quite literally!) before sleep, this seems to ease it so I’m sure it’s associated with my prolapsed disk. I’m also still waiting for consultations with an NHS cardiologist etc (it’s been over 2 years now…), but it’s been a while since a tachycardia episode has woken me violently in the night.

If there is an art to illness, I felt I was learning it.

I suspect one of the main skills involved in such an art is being willing to ask for help. If you’ve read my blogs you’ll know how difficult this is, was, for me, and yet doing so created a fundamental shift inside me, the beginnings of rewiring of old programming that I had to do it alone, had to be independent, strong, without needing help from others. This was what my mother modelled, and although I could see how negatively this affected her and her life, it was hard to shake myself free of the same beliefs. I was forced to, my health deteriorating so severely I more or less had no choice (see The Unendurable).

But something changed in March and once again I’m asking for help. If you’d prefer to skip to the specifics rather than my lengthy preamble, go here.

For no particular reason (that I know of), my exhaustion no longer had a window of energy and became crushing. It is 24/7. It’s affecting my eyesight, I can barely focus until late in the day (I’ve had my eyes tested, they are fine). The only times this had happened before was if I was actively ill, or after my adverse reaction to the vaccines. I was (am) still “aggressively” resting which means guided meditations lying down and an eyemask, at least twice a day – my days being shorter than most people’s as the best sleep I seem to get is in the morning, so I get up late, and my body starts to shut down around 7 pm, so the most I’m doing then is watching TV or reading.

Although this exhaustion bothered me, I decided to participate once again (and hopefully assist a little) in my partner, David Crean’s  Body Resonance Goddess retreat in the beautiful Milelja Retreat Centre near the little town of Molyvos. I was much sicker the first time (two years ago), and almost didn’t go. I’m so glad I did as it was a deeply healing experience. This time, although I continued to feel very tired, it was once again amazing. Particularly important for me was making deep connections with three beautiful women, two of them half my age (but twice as wise), connections I know will last my life. But the journey home was challenging, 19 hours of delayed flights and long drives and sitting on runways or in the air awaiting a slot.

Two days later I became profoundly ill. What I sometimes call my ‘usual’, only more severe and lasting much longer than normal: deep malaise, as if you are about to come down with a tropical illness, or a bad flu, but without any coughing or sneezing or even fever. I could sense something was ‘in’ me, something unwanted – a virus, bacteria, mycoplasma, I don’t know. Something that lives inside me and hurtles to the surface when triggered, most likely. A retained pathogen, my acupuncturist believes. Three weeks of utter grimness.

At the time I was reading The Invisible Kingdom: Reimagining Chronic Illness, a 2022 medical memoir by the poet Meghan O’Rourke. It tells the gruelling journey of her own physical health, but also delves into the social and political ramifications of chronic illness. The gaslighting, the sexism, the failures of the medical institutions. The book is extensively researched and she interviews a number of doctors and scientists. It’s not an easy read, not because it isn’t well written, it is, but because of all she suffered emotionally and physically, still suffers, and the truth she writes about how it is for those with chronic illness.

There is so much I’d like to quote from the book but the parts that struck me the most were about how so many who are ill are expected to learn something from it. We do, of course we do, but at what cost? As Meghan writes:

“There is a razor-thin line between trying to find something usefully redemptive in illness and lying to ourselves about the nature of suffering. Until we mourn what is lost in illness—and until we have a medical community that takes seriously the suffering of patients—we should not celebrate what is gained in it.”

If you don’t want to buy the book, Goodreads has a good list of short extracts and quotes.

Like myself, Meghan has multiple reasons for her illness. But the thing that helped her the most, the thing that allowed her to live a relatively normal life, was treatment for Lyme disease: an intense and long-term course of antibiotics. (She followed this up with FMT in England – fecal microbiota transplant, to take care of the microbiome killing side-effect of antibiotic therapy, something I’ve known about for years as it can help those with chronic illness, but for me it’s unaffordable).

One of the factors that most likely triggered my ME/CFS was South African Tick Bite Fever (similar to Lyme, but often called Rickettsia). I’ve long thought about embarking on an antibiotic treatment, long avoided it, long wanted to try everything else. I’ve also thought about taking antivirals, which some with ME/CFS do very well on, and given it’s likely I have flare ups of Epstein Barr Virus and that I do have flare ups of HSV 2, they could help. But my impulse has always been towards alternative approaches, and even when I went to a tick-borne illness versant doctor in Germany fifteen years ago, she treated me with herbs (one year of them, after which she said I was cured and yet my health steadily deteriorated, possibly because I wasn’t properly dealing with past traumas that can also be a factor in chronic illness. I went on another tick-born illness focussed herbal protocol about six years ago – you read Finding Home you’ll see the extensive trauma therapy journey I’ve been on – and my mental health has never been better thanks to this. But I’m still ill).

Reading Meghan, and feeling so entirely awful for three weeks got me thinking. There are tests for tick-borne diseases, mostly in Germany and the US, but they are hugely expensive and not entirely conclusive. I spoke to my GP here in the UK and she told me she has a patient with a similar profile– trying everything including trauma therapy, and that the antibiotic most used for Lyme, Doxycycline, finally helped this patient. Would I like to try? I had no hesitation. YES, I said. I didn’t expect any result but within a day of taking them I no longer felt grim. The tiredness, the difficulty focussing, yes, but not grim. I’m on a week trial, to be extended another week if I’m doing alright.


A couple of days after starting the antibiotics I connected with someone in a support group for those with tick-borne illness. I’m not sure why I reached out to this particular person, perhaps because she’s both a scientist and a writer, because I liked her profile picture, her posts about solar power, about how humans and apes share a common language, her posts about cats. She hasn’t been ill for as long as I have and she initially thought it was ‘just’ Long Covid. She discovered Dr. Ben Sinclair, a private consultant who is putting together a centre of excellence focussing on hard to diagnose and treat illnesses like Long Covid and Lyme and is working with some world leading experts on these.

As I know, many with post covid infections or adverse reactions to the vaccine have reactivation of other viruses or bacteria and based on her symptoms, Dr. Sinclair treated her with both Doxycycline and antivirals (Valacyclovir). While she still has Long Covid, she is doing much better since this combined treatment, and still works with him.

Given my own GP is not a specialist in this area, given the NHS only allows for 10 minute slots if that, and given this new journey I am on is not straightforward, not without side-effects or detours or set-backs (as is clear from Meghan’s book) I strongly feel I need such a support, at least an initial consultation.

It’s not cheap, of course, but much cheaper than the blood tests I had vaguely been thinking about over the years: £299 for an initial 45-minute consultation. (The ten-day FMT Programme Meghan did in the UK costs £5175.00 but that’s not in my sights right now!).

So, yes, once again I’m asking for your help. Once again it isn’t easy, and I have no expectations. But if you can help that would be amazing. (If you’ve read this far, that’s amazing too!).

I would like help towards two consultations with Dr. Sinclair, one to start with and another to see how I’m getting along. Thankfully as I’m ancient now, prescriptions are free 😊

Here is the link to the fundraiser: Can you support my journey to physical recovery?

Thank you for reading. Thank you for being there. Thank you for the little messages I get on my Facebook and Instagram posts, it all means so much to me.



Previous blogs of mine on my physical situation:
Finding Home
Doctor, Doctor
44 Weeks
Still Suffering
ROCKS AND FLOWERS
Feeling Normal
The Real Story
The Unendurable, Part Two
The Unendurable
IT’S NOT COVID
More Things I Don’t Want To Talk About
On Being Invisible

44 Weeks

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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.

Fundrazr link:
Please help me shorten the 44 week time to see a neurolgist and rheumatologist

my in-house acupuncturist hard at work

Previous blogs of mine on my physical situation:
Still Suffering
ROCKS AND FLOWERS
Feeling Normal
The Real Story
The Unendurable, Part Two
The Unendurable
IT’S NOT COVID
More Things I Don’t Want To Talk About
On Being Invisible

Still Suffering

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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.

Previous blogs of mine on my physical situation:
ROCKS AND FLOWERS
Feeling Normal
The Real Story
The Unendurable, Part Two
The Unendurable
IT’S NOT COVID
More Things I Don’t Want To Talk About
On Being Invisible

ROCKS AND FLOWERS

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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.

Previous blogs of mine on my physical situation:
Feeling Normal
The Real Story
The Unendurable, Part Two
The Unendurable
IT’S NOT COVID
More Things I Don’t Want To Talk About
On Being Invisible

FEELING NORMAL

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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…).

Previous blogs of mine on my physical situation:
The Real Story
The Unendurable, Part Two
The Unendurable
IT’S NOT COVID
More Things I Don’t Want To Talk About
On Being Invisible