Tag Archives: mental health

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

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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

FINDING HOME

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I can’t believe it’s been been five months since I wrote here. I don’t know where the time has gone. My various symptoms were really awful for a long time – the burning feet syndrome (most likely small fibre neuropathy), the nocturnal polyuria made for very little sleep, which in any case is never restorative. I was given a drug to help me sleep, but that gave me restless legs, which was almost worse than either of these, so I stopped taking it. I had an awful, endless viral infection in January, not COVID but a kind of cold or flu, the worst I’ve ever had. It caused a ticking sound in my head which got worse if I moved or even moved my eyes, and this was layered on top of my already horrible tinnitus. But it did pass, eventually. I still have burning feet and I still have to wee throughout the night, but it is better than it was. My pancreas is still not working properly so I have to take digestive enzymes with every meal and snack, and my hormones won’t settle down into something relatively normal. I’ve had weird heart arrhythmias and I’m still waiting to see a cardiologist about this, so too an NHS neurologist and rheumatologist to proceed with the small fibre neuropathy diagnosis. I did have an appointment with an NHS gastroenterologist, and I’ve had an abdominal CT scan for which I’m awaiting results. I’ve had brain and spine MRIs, which showed nothing out of the ordinary (other than the prolapsed disc).

About the prolapsed disc — my sciatic pain has varied from awful to completely manageable and back again, but mostly it is nothing like it was in 2021, not even close, I can’t tell you how grateful I am. I still take a drug for this, but I’ve reduced what I had to take in the early days. Overall I’d say most of my symptoms have eased, even if only a little. Again, I’m so, so grateful. But I still have a tiny window of energy available to me each day, no more than 3 hours usually. I still have severe, crushing exhaustion, and dry eyes and dry mouth and so on.

But….! I’ve had some really good days recently. My mental health is overall better than it’s been in many years – and it is this I mostly want to talk about because I’m going to ask for your help again.

I was long ago diagnosed with C-PTSD – complex post-traumatic stress disorder. I have never really known what to do with this – over the decades I’ve done different kinds of therapy and therapeutic approaches, and I’m sure these helped but I still have had breakdowns and periods of severe depression. And, as you know, after the drastic downturn in my physical health in 2021 I knew I had to do everything I could, both on a physical and mental level, to at least bring me some kind of ease, for otherwise my life as it was then was not worth living.

Thanks to so many generous people I’ve managed to do a lot about my health from acupuncture to seeing private consultants. I’ve talked about Rex Brangwyn, the extraordinary EMDR therapist I worked with for several months, and then early this year I started work with another therapist, Montseratt, someone Rex recommended who has a different approach. As soon as I saw her photograph on her website, I knew she was someone I had to work with. She’s a soul worker, mentor, grief worker, doula, childbirth activist, singer and of course, a psychotherapist. She and I do weekly sessions on Zoom, and 3 or 4 intensive in-person sessions that last all day. I’ve had 3 so far, and the last one was incredible.

I was able for the first time in my life to truly access the deep river of pain that lives inside me, that lives beneath all the dissociative behaviours I’ve learned to avoid the pain. I’ve always been frustrated that I could not access how it actually felt to be seven years old and survive a car crash that killed my father in Crete, and all the associated trauma that unfolded afterwards: my mother’s severe illness, living in a foreign country and so on, not having family or friends around for support. Not to mention my early teenage experience of being an unwitting/unwilling witness to my mother’s violent and overtly sexual relationship with her second husband. And all that followed: the years of bulimia, the suicide of a friend, the near death of my own second husband. I can remember how awful it was when I was older, but when I was seven? No. The traumas that followed just compounded my dissociation, my feelings of isolation, my coping behaviours (be strong, capable, independent).

In this last long session with Montseratt felt all of the pain, all of the grief. So deeply and so fully and so painfully it literally flowed throughout my body – for hours, and at the same time I experienced an extraordinary sense of compassion and love. Montseratt was with me the whole time, witnessing what I was going through, holding me, talking with me. At one point she said, “This is home.” The issue of not having a home has been huge for me all my life – not just because I have lived in so many countries, but because I’ve never felt grounded in myself, never really felt committed to living, to life. And when she said This is home, I could feel the truth of that. And afterwards, something shifted inside me. I’d felt the pain I’d been avoiding all my life, and I’d survived. Not only survived, but discovered within me a compassion I never knew existed.

After this session I had some days and hours of feeling better in my body than I’ve felt in years, actually healthy. And even happy!


And, the work is not over, I need to practise this self compassion on a daily basis. And after this long session I knew I needed to do another one. The original idea was to only do three, but my second session was not fruitful, so it felt clear to me that more is needed to truly ground the work within me, or possibly to access other emotions I’ve repressed (anger, for example, an emotion I so rarely feel I assume I am just someone who doesn’t really feel anger, but….). Montseratt brought it up too, that one more session like that would be really helpful.

But these long sessions are expensive – not relatively, but it’s a six to seven hour process, all in one day and Montserrat is completely focussed on me the entire time. I need help to do this, and as always as I write this, I feel… awkward. I have no expectations, I trust that somehow it will be possible.

If you can help, that would be amazing. If you can’t, thank you so much for reading this far. It’s a support just knowing you have, that you are there.

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

Previous blogs of mine on my physical situation:
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