Doctor, Doctor

There was a doctor in France who told me my post viral fatigue symptoms were due to a problem with my shoulder and sent me to a physiotherapist. There was a consultant lipidologist in Ireland I was referred to, but she refused to talk to me because I was hesitant about taking statins. A doctor in Canada who refused to look at the articles I’d collected on chronic tick-borne conditions and instead told me my problem was depression. The surgeon who almost had a temper tantrum during a consultation because I was feeling faint and needed fresh air. The doctor who neglected to tell me they had a specialist nurse in the practice for menopause and hormone issues, forcing me to go private. The doctor who didn’t like the sleep medication I was on and put me on another that is harder to get off, and has worse side effects. There was the surgeon who didn’t discharge me after an operation because he was too busy, and left me in the hands of a nurse who was unaware of what I needed to know in terms of my recovery. There was the doctor who insisted I had a thyroid disorder in spite of the fact blood tests were normal and gave me thyroxine which made my hair fall out.

The list goes on. But then there was the doctor at university in England who gently indicated my mouth and said, We’ll need to take care of that. I’d had a sore there for months because I was bulimic, stomach acid splitting open the tender skin. The doctor slid open a drawer and handed me an ointment that cleared it up in a few days, and without me asking referred me to an eating disorder specialist. There was a doctor in Ireland, my mother’s, who listened quietly to my endless story of ill health, looked at me and said, We’re going to get to the bottom of this and I knew he meant it.  Sadly I couldn’t be his patient because I lived elsewhere.

I have good doctors here in Brighton. They do what they can, but they are not specialists, and they have little or no time, and it’s hard to actually get a face-to-face appointment. They do refer me to specialists but it takes a year or more to see anyone, unless it’s a cancer scare (and I’ve had a couple of those). I’m on the NHS list to see a gastroenterologist, a rheumatologist, a neurologist and a cardiologist.

In the end I gave up waiting for two of these, and thanks to the extraordinary generosity of so many who donated to my fundraiser, I’ve recently seen a private rheumatologist and a private neurologist.

I saw these doctors at two different private hospitals, all quiet and ease flowing the corridors. Free coffee and tea and biscuits, nice comfy chairs. Lots of nurses and other staff to assist with whatever is needed. A universe away from the usual hospitals I’ve had to go to.

The rheumatologist, Dr. Vijay Hajela, had the best bedside manner and I left the session feeling generally better about things. I went to him as I have most of the symptoms of Sjögren’s syndrome. He listened closely, read all the information I’d brought to him, and looked not only at the symptoms that were specific to his speciality, but the wider picture. Essentially he does not think I have primary , but possibly symptoms that are secondary to another autoimmune disorder or a ‘sicca’ syndrome. He’s ordered serum ACE, IgG4, Immunoglobulin profile and ENA bloods. He feels I have an issue with my central nervous system, hence the multi-organ/body symptoms. Possibly neurological inflammation/ sensitivity. He made a medication suggestion regarding this. He was quietly shocked that I hadn’t had a pancreatic scan yet given the diagnosis of severe pancreatic insufficiency in the summer (another specialist I’m still waiting to see), and pressed for this.

The neurologist, Dr. Dennis Chan, couldn’t have been more different in manner, but he wasn’t arrogant (unlike the private surgeon I saw last year), just very comprehensive, methodical and specific with his various investigations and questions. He took a full history and then poked me everywhere with a pin; told me to walk as if on a tightrope, and did all those finger to nose tests you see on TV. I felt a bit like I had an incredibly efficient robot doctor, but I knew I was in good hands!

Dr. Chan thinks I most likely have small fibre neuropathy, which is what I thought. He has ordered a variety of tests to exclude other possibilities, including an MRI of the spine. If these don’t show anything untoward, then I will need to see a peripheral neurology specialist. He also works for the NHS and was able to order the MRI on the NHS. Probably you will get an appointment in January, he said. Or maybe February, he added with a disappointed frown. I could hardly believe it – I knew I’d normally have to wait several months or more. Later, I realised I’d forgotten to ask him about further investigations regarding various ‘head’ symptoms I have (sense of pressure in the head, extreme tinnitus, etc), and so I emailed him to check. I promptly got a call from his secretary saying he’d be happy to order a brain MRI.

A few days later I get the appointment for both, January 9th. I’m still in shock at the speed of this. I consider myself so very blessed to have been able to access these two doctors, for the choice I made, and for the support I’ve received to see them. I think about all those who haven’t been able to do what I have, who have to wait a year or more to see someone in a crowded and confusing hospital where you hear weeping and cries of pain. The exhausted nurses rushing about. They will be striking this month and I can understand why, and I wonder how it will be for those who have to visit an NHS hospital during that time.

And me. There’s more to do, and I’m still suffering physically, but knowing there are doctors like with Dr. Chan and Dr. Hajela on my case give me hope. I just wish they were easily available for everyone.

Previous blogs of mine on my physical situation:
44 Weeks
Still Suffering
Feeling Normal
The Real Story
The Unendurable, Part Two
The Unendurable
More Things I Don’t Want To Talk About
On Being Invisible

44 Weeks

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
Feeling Normal
The Real Story
The Unendurable, Part Two
The Unendurable
More Things I Don’t Want To Talk About
On Being Invisible

Still Suffering

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:
Feeling Normal
The Real Story
The Unendurable, Part Two
The Unendurable
More Things I Don’t Want To Talk About
On Being Invisible


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
More Things I Don’t Want To Talk About
On Being Invisible


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
More Things I Don’t Want To Talk About
On Being Invisible

Writing When Ill

I have a new guest post at Your Writing Launchpad that talks about what I do to help me get back to writing when my illness (ME/CFS) has chomped away at my confidence, or I am only able to write for a very short amount of time per day. The tips work for anyone however, and are focussed on how to create a daily writing practice that you can stick to. You can read the blog here.

Ronan cuddling close, staring at me with his big yellow eyes

My ever trusty ‘nurse’, Ronan (he does great acupuncture…)


When coronavirus moved onto UK shores I noticed, whenever I said “I’m not well,” in reply to “How is your health?” I’d hurry on to add, “It’s not coronavirus.” And more recently (fewer syllables!) “It’s not COVID.” I suppose I was saying, “It’s not so bad.” Who was I trying to reassure? Me, or them?

Actually, during the early days of the pandemic, I was not especially afraid of getting coronavirus. I do not usually catch ‘normal’ illnesses (colds, flu etc.), and, during February and March I was enjoying a remarkable period of wellness, spending my time and thoughts on the second draft of my new novel.

Of course it very soon became clear that COVID-19 is not a ‘normal’ illness, and when my health deteriorated rather dramatically with some delicious new symptoms, the very thought of feeling even grimmer than I was already feeling seemed unbearable. In fact, I have no idea know how my body would react to the virus – I don’t have any of the conditions that would put me into the government’s ‘high risk category’.

What I do know is that some people who “recover” from COVID-19 are not, so far, fully recovering. They have similar symptoms to those who have ME/CFS. There is even a new term in the pandemic vocabulary: “Long Covid”.

With an estimated 25% of people with ME/CFS housebound or bedbound, patients suffering from the lowest quality of life of any disease to which it has been compared, including multiple sclerosis, and only about 13% of patients are able to return to full-time work, the potential for many new cases of ME/CFS in the wake of COVID-19 is no small matter.

Lockdown is opening up in England. But it is not opening up for anyone with the severer forms of ME/CFS. My own ‘lockdown’ life has been largely unchanged by the pandemic.  And, due to Long Covid, it’s possible the medical community – the world at large – will finally give ME/CFS the focus it needs, a condition of which my own GP said: “We do not know what it is, and we do not know how what to do about it.” Will she, at some point, be able to tell me, “I believe I can now help you?”

Which brings me to what I really wanted to share today: the question of whether anyone who is relatively well and able-bodied can understand the subjective experience of someone who isn’t. I wrote in an earlier blog: “In spite of finding my health issues tedious to dwell upon, just sometimes, I’d like someone to know, to really know what it is like to live in my body.

I tend to stay on the periphery of the ME/CFS communities because I often find myself lost in a depressive warren of questioning (Is there something I’ve overlooked? Should I find the money to pay for the more accurate Lyme/Rickettisa tests not available on the NHS? Should I be tested for Tethered Cord Syndrome? What about mould?), but recently on Twitter I stumbled across Vlad Vexler’s ME diary.

Vlad is a philosopher working in ethics and musicology, and, he has ME.

He has recorded over 50 two-minute videos, articulating beautifully and elegantly what it actually means to have a chronic ‘invisible’ illness. Many of his symptoms differ to mine, but I found myself deeply moved listening to him. The talks – more a conversation than a ‘talk’ –  are wide-ranging: how people with ME are judged and misrepresented when they temporarily function better; how people with ME have to fake and fabricate to enjoy simple pleasures; how people with ME are, in fact, too unwell to be “fatigued”, to name but a few.

Vlad has compiled these diaries on YouTube, and if you are able bodied, I urge you to watch them. Two + hours might seem a lot, but he is an engaging, vibrant speaker – even at his most ill. And, two hours or so is so very short compared to how long many of us have suffered with this illness – over 25 years in my case. And, if you have ME or a similar condition, I am sure you’ll find a great deal of comfort in his words. It is certainly a comfort to me to know there is this voice in the world, telling the world about us.

And, I worry he speaks to the ‘converted.’ So please listen, please share.

Vlad’s ME Diary Episodes 1-10

Vlad’s ME Diary Episodes 11-19

Vlad’s ME Diary Episodes 20-23

Vlad’s ME Diary Episodes 24 “It’s Not Fatigue”

Vlad’s ME Diary Episodes 25 “Disability and Possibility”

Vlad’s ME Diary Episodes 26-54

Covid-19 has perhaps shown many of us just how connected we are; and just how important it is to stay connected. It is often in the darkest times we deepen our humanity – we reach out to others (even if only via Zoom) and we begin to enquire into the experiences of those who have it worse than we do. In this way we make the world a better place.

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

Yet Another Thing I Don’t Want To Talk About

I am engaged in a writing practice with a friend, a practice I call Page A Day. We write a page – of whatever arises – every day, and share with each other. In the past I have had some success with this practice, producing short-form work that I could edit for publication. These days it seems to be mostly a kind of journal. I’m not happy about that, but there is not much I can do, it feels. It is what ‘comes up’. There was one piece my friend said she thought should be published in some way, part of a longer essay perhaps, as it was about one of those subjects no one likes to talk about, not if it applies to them: the subject of loneliness. It’s the same with chronic illness, and death/grief, the other things I have in fact written about in this blog, not really wanting to, but somehow feeling compelled to do so. I have written before about loneliness, but I suppose it’s asking to be talked about again.

This isn’t an essay, but it’s the best I can do for now. At the end of the blog I will copy the “page a day” I wrote.

As a writer, and an introvert, I actually need to be alone for long periods, to create, to recharge, but being alone and loneliness are two very different things.

Loneliness is of course a ‘side-effect’ of having a chronic illness. And, as I wrote in the above mentioned blog, there are other circumstances in my life that contribute: my beloved partner David’s work takes him away for nearly six months of the year (each trip about 10 days to two weeks long) and the fact we don’t have children and that we have moved around so much and don’t have roots where we live. Most people our age have full lives and families and enough friends, so it is hard to make connections – particularly for myself, being a writer and so my ‘work’ is at home, but mostly because I am chronically ill.

Friends drop away. This is a fact for those with a chronic illness. We often have to change plans last minute, or we can’t travel far to meet people. These limitations have a knock on effect: in the end it’s just too much trouble for people to fit into our limited lives. And, when I’m sick, I feel quite vulnerable, there are not many people I feel truly comfortable being sick around. Instead I tend to over exert myself to fit in with their level of energy. So it’s easier just to wait things out before I suggest meeting up for a tea or coffee. But it’s a vicious circle: loneliness actually alters the immune system. And another great article in The Cut on this subject: What Loneliness Does to the Human Body by Ashley Fetters.

I have a number of close friends in the world, but very few living near me. Yes, there is the phone and WhatsApp and Skype, but it is absolutely not the same as meeting in person. I can literally feel it in my cells, a shift, a brightening even, when I’m with someone and engaged in a meaningful interaction.

I have in the past year made a concerted effort to make sure I at least get out and sit amongst people at a café, and my monthly writing workshops are not only a fulfilling experience for me, but have also brought some lovely people into my life. But still, I have frequently found myself in that empty, despairing place that is loneliness.

This is the piece I wrote during one of these times:

When I go upstairs for my lie down, Ronan follows me, and if he doesn’t I call him. He usually starts to knead and purr by my side and hopefully will curl up next to me. I put my arm around him. Sometimes he moves away a little or stretches and I stretch out too, so that a part of me is touching him. Sometimes I hold onto his tail. I love the softness of his fur. The warmth of him. But it doesn’t ease my loneliness. I’d like someone in the house. They can be doing their thing in their own room, but I want someone nearby. Just to know they are there. The worst is at night when I’ve watched too much TV, too much Code 37 Sex Crimes and First Dates. When I’ve had enough of TV I feel the dark cloud fill my stomach. Usually I get up and go to the computer, but I know I should sit with it, and just be with the feeling, to let it come through. To be present with myself, with my loneliness. To be the person in the house, just there, doing their thing.


More Things I Don’t Want To Talk About

I shared my ‘invisible illness‘ blog on Facebook, and in the comments someone suggested I had more to write on the subject. I told her writing the blog made me quite depressed, putting my health situation ‘out there’, in public. For me it seemed to concretize what was going on, to make it all the more real, all the more inescapable. And not long after writing the post – although I can’t prove a connection (there were other factors) – I had a serious CFS/M.E. relapse, putting me entirely in bed for nearly a week. It was the most serious relapse I’d had for months. Imagine having a severe tropical illness, or something like pneumonia, and you are in hospital. You are on the road to recovery, but still bed-bound. This is how such a relapse manifests for me.

I had felt something coming on for several days prior, one of my least favourite chronic symptoms rachetting up: a sensation of pressure in my head, combined with intense bi-lateral tinnitus increasing in volume from the time I wake in the morning until I go to bed, at which point it is almost unbearable. I can do nothing but listen to the clanging, a tone of a school alarm alerting you to a change of class, or the sound of a fire alarm in a public building. It is this particular tone. I’d have a digit removed if it meant this symptom could magically disappear. It started about 3 years ago, and occurs every single day. It’s worse when I’m tired or ill, but it’s always there. An alarm going off inside my skull.

What I haven’t written about my health situation is my anger. My profound despair. My hopelessness. My depression. Much of the time I ‘manage’. I’m good at managing. If my symptoms are fairly consistent and not entirely debilitating, and if I can apply some kind of routine to my day, and if, every so often I am well enough to get out to meet with a friend, I am not angry. I am not despairing. I am managing. Those emotions sit there quietly in the back waiting until I am once again thrown into incapacitation as I was last week. Then I think to myself, “I cannot carry on like this, I just cannot.” When I am so debilitated I can’t write, I cannot see friends, I can barely even read. Life doesn’t feel as if it is worth living. These are hard times.

I went through a protracted period of incapacitation about a year ago, and I realised I had to take stock. If my life was to continue like this, then what? I was at the end of my tether. I have been suicidal in my life, I have had several breakdowns, but this was not that. This was taking a good hard look at my situation. The facts. I knew I needed two things: nature, and a community. I needed to be in a place where close friends would be willing to come to me, to sit quietly perhaps, to make me a cup of tea. Or not, just to be in the house, so I can hear them chat away to themselves. The clink of cups. A kettle boiling. When I am ill it is often better for me to be alone, but I like to know there are people nearby.

Until that point I was very isolated. I had no friends in this city I’d been living in for five years (word of advice: if you have a chronic illness, are a writer, do not have a ‘job’, have no children, do not go to church, and your partner’s work takes them away for nearly six months of the year, do not move to a city where you don’t  really know anyone). It’s not that I don’t have friends, I do, several wonderful friends, but most of them do not live in the country I live in. Isolation is well documented to adversely affect health.

So, I forced myself to teach once a month (doing any kind of regular work, a normal ‘job’, has been impossible for decades, as I never know when I might be too ill to do the work).

My teaching has brought a handful of beautiful people into my life. But it’s not enough, particularly since they don’t live within walking distance.  This is what I call community. Someone next door. Someone across the way. A tiny village.

Nature is our minuscule patio filled with the sound of the industrial fans from the shop beneath us and the shop beside us. The patio is also a thoroughfare for those working in the shop below, so is never private. There are no parks near enough for me to walk to, and although the English Channel is but ten minutes away, it entails crossing a highway. This might not seem like a big deal but I am so noise sensitive (hyperacusis) going near this road actually hurts.

We need to move, not just because where we live is not conducive to my health, but also because our overheads are unsustainable. And then I worry: if we move far, to a new place, what happens to the friends I’ve managed to make here? Will I have to start over? What about the wonderful psychiatrist homeopath I am able to see nearby on the NHS? The TCM practitioner I’ve just found? There are so many other factors that make any kind of move complex and difficult, let alone the actual move itself. This is barely conceivable for me to manage.

Everything feels like a catch-22.

I have avoided talking about my anger about my illness. It’s not present right now. Anger is not an emotion I feel frequently. I can count on my two hands the times I’ve actually been enraged. I’m not suppressing anger, it’s just not there. But I am angry about my illness. I do not feel I signed up for this. I remember a friend, some years ago, telling me I did not seem like a sick person. I do not have the profile of a chronically ill person, whatever that is. Does anyone sign up to be ill? No, of course not. Also, I do not believe we are given these challenges by the universe to “teach” us something.

But we do have an opportunity to take a look at how we react to challenges, how we are ‘with’ whatever is going on. We can learn from what we are going through.

In the early years of my illness, when it manifested as bouts of acute bacterial and viral infections, I learned something: if I fought what was going on (a literal physical sensation of trying to push my body, my discomfort, away from me), it worsened the symptoms.  If I physically relaxed, and was ‘with’ what is, things eased. I did not get well, but my experience of whatever was going on improved.

Now that the progression of the illness has changed, now that each day includes long periods of discomfort, I am neither with nor against what is happening. I am simply bearing it. Even when I tell myself “I cannot bear this.” I am bearing it. I have no other choice. I will not end my life, even though sometimes it feels as if my life is ending me.

I have avoided talking about my despair. In my blog about having an invisible illness I linked to a post in the New Yorker about memoirs of disease. One of the memoirs is ‘Sick’ by Porochista Khakpour. I haven’t read it. I had come across it some time ago, and thought I should. Porochista Khakpour was finally diagnosed with chronic Lyme disease and treated with antibiotics amongst other things. A few days ago I decided to find out how she was doing. What I discovered was the thousands of dollars it took for her to be diagnosed and treated. More money than I have, far, far more. She raised much with crowd funding. I am not sure I could do this: my shame around my illness prevents me (another thing I haven’t written about). And then I learned she is still not well. By the time I finished reading all this, I could barely breathe. I don’t have the money to pay for this kind of testing or treatment. And even if I do, it may not make an iota of difference.

I was at rock-bottom. Sick, despairing, hopeless.

But at the bottom there is nowhere else to look but up. Once again, I knew I had to take stock. I had to turn my focus to the aspects of self that are not my illness.

I recently won a prize for my writing (I cannot announce the details publicly for a few weeks), and I am reminded: I am not just a sick person. I am also a writer, even if all I can do is to think about what I would like to write. I am also a friend, even if all I can do is talk to you on WhatsApp.

I am still here and the day will unfold with its challenges. I haven’t given up yet.