I received an email that brought tears to my eyes yesterday: my personal essay “Invisible“, has been nominated for Best of the Net, the awards-based anthology, by Under the Sun. I am so honoured! This is not only my first Best of the Net nomination, but the first personal essay I’ve written that includes my various health issues. Once again, huge thanks go to the wonderful team at Under the Sun, especially editor Miriam Mandel Levi.
(I think Ronan is looking pretty happy with himself, and so he should, given he’s my Muse.)
I’m long overdue for one of my rambly updates regarding my health. For now, suffice to say it’s been a challenging time, a challenging year. But I am super proud that a personal essay of mine, “Invisible“, was just published in Under the Sun. This is the first piece of creative writing I’ve done that includes my physical situation. Other than blogs, I generally avoid writing about my illness, for me creative writing is a way to forget that I’m a sick person. But I was trawling through some old pieces last summer, and found something I wrote about an experience I had in a German sauna. It needed work, a lot of work actually, especially the ending, and I found myself expanding on what I experience physically on a day to day level. It was a bit clunky, to be honest, but I sent it out, and the wonderful readers and editors at Under the Sun, especially Miriam Mandel Levi, helped me smooth things out and make the piece work. I actually haven’t ever had such an in depth and supportive experience of editorial input from a literary magazine. The whole process was a joy, thank you Under the Sun!
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?
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.
I’ve been thinking about writing about my latest health, er, journey, for some time, but that journey has been so extreme I simply wasn’t able to. And I’ve wondered, how in fact can any of us truly understand the inner experience of another person? How can anyone put words to this experience in a way that can reach not only the logical brain? Is there a point to trying? I think of the blog I wrote in 2022 titled The Unendurable. Little did I know there was worse coming down the line for me.
And then I picked up The Wounded Storyteller by Arthur W. Frank. I’ve only just started it but it feels clear that there is worth in telling the story, if only for others facing similar ordeals. Frank quotes someone who lives with chronic pain, Gail Garro:
“And all these people in pain… all these people with aches and all these people suffering. We walk in different dimensions. We have access to different experiences, different knowledges. And there are so many of us, too. What would happen if we all knew what it really meant and we all lived as if it really mattered, which it does. We could help the normals and the whitecoats both. We could help them see that they’re wasting the precious moments of their lives, if they would look at us who don’t have it. I’m convinced that only sick people know what health is. And they know it by its very loss.“
And so, here is the tale of my ordeal.
As many of you know, I started late-stage Lyme antibiotic therapy in January under the guidance of a private consultant here in the UK, with much thanks to generous donations. I preceded this therapy with some weeks of a high level nutrient protocol also suggested by the consultant, and again, covered by a very generous loan from a lovely friend.
Interestingly, I was in fact doing a lot better than ‘normal’ in November and December, partly perhaps because of the nutrient protocol. I began the first antibiotic on January the 6th, and the second two weeks later. I was doing fine, no side effects other than perhaps a slightly disturbed bladder.
On January the 20 I started taking the second antibiotic twice a day, as per the protocol.
A week or so prior I noticed I had a canker sore on the very tip of my tongue. I hadn’t had one of these for decades. I also had an HSV2 infection, which isn’t unusual for me, but it was on the severe side.
On the 23rd I felt like I was ‘coming down’ with something. Just general malaise, headache, weakness. Nothing totally out of the ordinary, other than I hadn’t felt this for many weeks. The following day, I was far, far worse. I had the most violent nausea I have ever experienced. Sea-sick nausea, the type that takes all your energy just to endure. My temperature was going up and down all the time, and my heart, while regular felt like it was pounding in my chest like a drum. I had a headache, I felt incredibly weak, and due to the 24/7 nausea, I could only eat the simplest of meals.
I thought I had Norovirus. But I had no diarrhea, and no vomiting. The nausea was worse when lying down, I tried my two prescription nausea meds, but they did nothing. I messaged my GP practice asking for a stronger nausea med, and was told to just go to the pharmacy and get something there, which was useless advice as they would not give me a stronger anti-nausea medication without a prescription and I was too ill to get there anyway.
The nausea was utterly crippling. It’s perhaps my least favourite symptom (hence having two prescription meds for this anyway). But to have it 24/7 for four days? Plus all the other awfulness?
I told myself, I need to go to Accident and Emergency. I didn’t. It was the weekend. The hospitals here are packed with people with Norovirus and Covid and all else. The thought of waiting hours to be seen while experiencing what I was experiencing was unthinkable.
After the four days, the nausea abated, but none of the other symptoms. My stomach was sore, and the exhaustion crushing. I had an ache in my kidney area. My bladder felt inflamed. I was hot and then freezing. Often very dizzy. I might have an hour or so of relative strength, but the rest of the time was spent bedridden, my heart pounding away preventing any kind of rest. And then I noticed another symptom: my mouth was continually filling with saliva. And, about an hour after eating – no matter what I ate – I would have a sensation that I was going to vomit, but didn’t.
I had one evening where this sensation of being about to vomit was so strong, and combined with feeling I was going to faint, my face hot, my head whirling. It was indescribably awful. Again, I thought, I need to go to Accident and Emergency. Once again it was the weekend, and after about half an hour the ‘attack’ settled.
Another strange symptom was incredible hunger, and the sensation that someone had scooped out my stomach with a spoon most of the day, regardless of what or when I ate.
Retrospectively, I wish I had gone to hospital. But perhaps I’d have had the same treatment I had from a GP I will tell you about later.
I also had a second HSV2 infection. Very unusual for me, to have two back to back. Some of my symptoms could be attributed to this, the malaise, but none of the others.
I then noticed I had developed a weird rash of flat red spots on my thigh.
I began to assume what was happening was related to the antibiotic protocol. Either side-effects or a herxheimer (Jarisch Herxheimer) reaction – or both. A herxheimer reaction from antibiotic protocol for Lyme is the result of Lyme spirochetes being killed off, creating inflammation, in particular for cytokines, and if someone cannot clear these dying bacteria /toxins well, the situation can be extreme, and even life threatening.
I had tried to get hold of my consultant but it was the weekend. I decided on Saturday the 1st of February to stop both antibiotics.
Then, the next day, eleven days from when my ordeal started, I noticed my urine smelled diabolical, and I was exceedingly faint. It was a Sunday. I prepared an overnight bag and called 111 (the ‘sorting’ number to provide urgent medical advice and see if you need to go to hospital). They put me through to an out of hours Doctor. We discussed at length the pros and cons of going to accident and emergency. He could understand my reticence. He suggested I bring a urine sample into my own GP practice the following day, and go on an antibiotic specifically for urinary tract regardless and to see if I could see someone there that day. He sent a note to my GP practice to this effect.
So to great exhaustion on the Monday I take the urine sample and come home, awaiting the initial results and when I could have what they call an “emergency same-day GP”, not my own doctor, that is impossible these days. I got the appointment, so trekked out, the most activity I had done for two weeks. The initial test suggested ‘possible’ infection, but the proper lab test results would take a week. The emergency same-day GP was lovely. But he could do nothing for me really, other than prescribe a UTI antibiotic. Once again we discussed the pros and cons of going into hospital. He said, and wrote in my notes, this is a very complex case. He suggested I see how I do on the antibiotics and he was able to make me another appointment with a GP in the practice for the following Monday.
I felt slightly better, but not much. Extreme malaise, exhaustion, the mouth filling with saliva, the pounding heart, the sensation of an inflamed bladder, the horrible sensation of about to vomit after eating. I honestly wasn’t sure I did have a UTI, I know them well from decades ago. I decided to stop the UTI antibiotic after 5 days as I was not improving in any way. I spent most of the time in bed.
This whole period was the most unwell I had ever felt in my life. I do not say this lightly. I’ve had acute kidney infections. Tick bite fever. Walking pneumonia. Epstein Barr Virus. Mumps as an adult. Chicken Pox as an adult. Covid last September, which I thought at the time was the most sick I’d ever been. But nothing, and I mean nothing, compares. I was incapacitated entirely, unable to do anything much at all, unable to think properly. Overcome with one symptom and once it abated another would arise.
And all the lying in bed made my sciatic pain much, much worse. I did my best to take care of myself, and even managed to teach my Art of Therapeutic Writing workshops because for the short time they lasted, I could feel like a person, rather than a set of debilitating symptoms. But any activity meant a very severe crash afterwards.
I lost two kilos over these three weeks. Two kilos I could not afford to lose as I am already extremely underweight.
I finally had a consultation with my consultant. He believes I experienced an extreme herxheimer reaction, the worst he’d seen. It is probably impossible to know one way or the other (side effects or herxheimer or both), but when I finally got the lab results back from my urine and they showed no infection, it seemed likely he was correct, as he had described to me that Lyme herxheimer reactions can affect the sacral plexus. My consultant is going to liaise with his Lyme specialist in Germany and come back to me with an alternative protocol, possibly largely herbal based (I had previously said no to a herbal protocol, because I’d had two of these in past years to no effect). He also told me all was not lost, that the fact I had the reaction proves that I have embedded Lyme in my body.
On Monday the 10th February I had the GP appointment the emergency same-day GP made for me. If you follow me on Facebook or Instagram you will know how that went. Essentially she did not ask any questions but ticked me off for asking for blood tests as she thought the private consultant should be organising these (disregarding the fact that my GP, the head of the practice, was fine with me doing this), said nothing about my pounding heart and the other symptoms and told me the saliva was a non-medical issue and I should see a dentist. She asked me if I was ‘into wholistic health care’ or words to that effect, and I was so stunned at her lack of care I just said “Yes,” instead of pointing out that the way she was treating me was not wholistic. I left in tears.
I am slowly, very slowly on the mend, nearly a month later. Throughout this time and prior to the protocol I have been taking pre and probiotics.
I have so many feelings around all this. I am absolutely terrified of re-experiencing what I experienced, to the point of even thinking maybe I don’t go on any protocol at all. I keep thinking about how much better I was doing just a few weeks ago. That although it was still a limited life, with exhaustion and other symptoms, I can live that limited life. It’s not so bad.
I feel terrible about all the money donated by so many lovely people for a potentially undoable protocol.
That I might need more money if I do decide to proceed.
I feel confused. But mostly I am in fear. I know this fear doesn’t serve me, not my mental nor my physical health. I am meditating, and doing all the vagus nerve settling I can manage.
Also quoted in The Wounded Storyteller is Jean Améry:
“I had grasped well that there are situations in life where our body is our entire self and fate . I was in my body and nothing else…My body was my calamity. My body …was my physical and metaphysical dignity.”
Another feeling I have is guilt – here I am, quoting Jean Améry who survived Auschwitz. I think of all the terrible things going on in the world. All the people who are and have suffered far worse than me.
But I try to tell this story. Is there any meaning in it? Perhaps one day I will understand. Perhaps one day I will put together the threads in a way that is more than a list of symptoms. Perhaps someone might stumble across my words here and feel not so alone in their own calamity.
I think of trees. I think of leaves.
I try to remember there are people out there who love me.
Thank you for reading, as always, if you got this far.
UpdateMarch 15: If you would like to know what happened next… read Stopping the Fight
Yesterday, one of my kind neighbours drove me from an acupuncture session back home. Accompanying her was a friend of hers, a young woman (well, I have no idea how old she is, I feel older than most women I meet these days). “This is Amie, who I was telling you about,” my neighbour said – someone else with an ‘invisible’ condition.
I asked Amie what was going on for her. “Oh it’s a very long story,” she said. I smiled. “Don’t worry, mine is endless,” I said. So she told me. And it is a deeply sad story, of someone who has gone through so much, struggled so much, with bizarre and strange and highly debilitating symptoms – including waking up one day to find the skin on her face suddenly droopy – and then the rest of her body following. It’s likely that endocrine issues and pyroluria are a part of what’s going on, but she still has not got to the bottom of it and doctors seem largely unable to help. She’s had to deal with this for so many years, and you’d never know unless you asked. To look at her you’d think she was fine, a bright, funny, gorgeous person.
Amie has found for herself a way of being in the world that helped create at least a small improvement on how it was, step by step, but what a path to walk.
I’ve talked about invisible illness before. I’ve talked about my own physical issues – a lot, lately – maybe too much for most of you reading. But after decades of not writing about what’s going on for me health-wise, this past year of, well, pain and suffering and crushing exhaustion, seems to have pushed me to doing a lot of things I wouldn’t normally do: write more about what’s going on for me, and ask for help – financial help! such a massive step for me to take – and help from neighbours to ferry me to and from various medical and therapeutic appointments.
I already knew I wanted to write this blog but synchronicstically a friend sent me a link to an interview with the poet Meghan O’Rourke, talking about her book, The Invisible Kingdom, Reimagining Chronic Illness. I didn’t know about Meghan, or her book. The interview is great, it’s short and well worth listening to.
Like so many of us with chronic conditions without clear treatments or even diagnoses, Meghan had to become a detective of her illness, and an advocate for herself.
She talks about the additional pitfalls of this approach: “It’s an irony of illness like this that the more invested you get in saying, no, here are all the little problems, and here are the labs that maybe point to it. The more you look like a hypochondriac.” She talks about how much support one needs – and, generally, money, given the lack in healthcare systems for these kinds of conditions. And what if there isn’t support or money? It’s extremely hard. I know all too well how exhausting and often disheartening it is to be my own advocate, to try to find answers.
“You have to have just incredible determination to live with a chronic illness, and in some sense, that’s really the subject of this book that I think I did not understand that before I got sick,” Meghan says.
She also describes some of what the “well” can do to help those who are not – simple things like accompanying them to a doctor’s appointment. And listening. Really listening, not offering advice.
When I shared with Amie about some of my issues and about the vax injuries, she said, “I’m so sorry.” I could tell she meant it. Most people tend to respond with something like It could’ve been worse if you’d caught the virus. Which makes me feel I just can’t talk about what happened to me at all – amongst other reasons which I mention here.
What I’m mostly trying to say is don’t take anyone for granted, don’t assume someone is doing fine just because they look fine.
Many of us will present ourselves one way to the outer world, but at home, in private, it’s another story. I suspect for the chronically ill, the ‘other story’ is usually even more extreme.
Here’s a little of what goes on for me. I wake up after a generally bad night (due to pain and a resurgence of hot flashes after five years of none, or my latest ‘fun’ symptom: my skin feeling like it’s been given a wrist burn, but all over…), I stick on my TENS pads, limp around until the pain eases, feed Ronan, take my various supplements etc, shower, feed myself, stand out in the sun for a few minutes, do a few movements to help my back, and by then I have to lie down again, usually with my ear pressed to a hot water bottle, so there’s that rigmarole. I get up, have some tea, try to check emails (standing, with my little standing laptop riser as I can’t sit for very long), make something to eat, then I have to lie down again (with another hot water bottle). If it’s a relatively “good” day I’ll walk around the block. I haven’t made it to 4000 steps a day yet, but that’s my goal. Many days it’s nothing close.
I might have a little time before supper to stand some more at my desk or I’ll be attending one of my therapeutic or medical sessions. Then it’s supper, and some uncomfortable sitting-up-straight watching TV and then some uncomfortable lying on the couch on my stomach (the only way I can lie without flaring up pain) to watch a little bit more. By 9 pm I’m smashed.
There’s my night time regime of meds and supplements and hot water bottles, shower, then I fall into bed.
What have I done? Virtually nothing. Writing this blog is actually a large undertaking for me.
There is the rest you wouldn’t see:
The past six weeks of having to wash and dress my incision three times a day from my laparoscopic surgery to remove a cyst and ovaries (not to mention having to use other ointments twice a day on other skin conditions, including nappy rash ointment on the blisters caused by using the TENS machine…).
And, I weigh 90 pounds (6.4 stone), when I should weigh 110 at least, but I can’t seem to put on weight in spite of pouring olive oil over everything and eating coconut butter by the spoonful and so on. I wear loose clothing so I look pretty normal, just ‘petite’.
Nor would you see the frequent crying jags when I get so overtired every part of me feels like its screaming. Or the chronic tinnitus in my head that sounds like a cross between a fire alarm and a grater on a violin string. It’s worse when I have a flare-up of ME/CFS malaise (like you’re coming down with flu), usually for at least a couple days each week. And this isn’t the half of it.
As I said, everyone hides aspects of themselves, or aspects are simply not visible, this is not unique to those with invisible illness.
And, there is this added dimension, a weight of carrying years of suffering, of living with conditions that currently aren’t treatable. The weight of staying determined, of not giving up. Of putting on a brave face, as I suspect most people – family and friends even – would struggle to witness ones true face all the time.
But after talking with Amie, and with my kind neighbour who drove, I felt lighter, happier. We laughed about star signs and being a Pluto person, and when I stepped out of the car and took my mask off, Amie said, “Oh, you’re beautiful!”. For a moment it was as if I wasn’t sick, as if I was a normal person.
It’s just over a month since I wrote The Unendurable, a month since I had my operation to remove a large ovarian cyst, and two weeks since I created my fundraiser. The response to the fundraiser has been utterly overwhelming, so too all the messages and notes sent to me, many from dear friends, many from people I’ve never met at all. I haven’t managed to thank everyone. I’m sorry about this, know that you are all in my heart and that I’m so very, very grateful.
Every day of these past two weeks I’ve wanted to write more, to express something that perhaps is inexpressible, a healing process I had no expectation of. Perhaps this process began when the pain started, last March.
I’ve not been able to write about any of this, because the operation triggered yet another severe ME/CFS “crash”. I was told recovery would be two weeks, but no matter how long I rest, tremendous exhaustion isn’t alleviated. Even my sutures aren’t healing well (I’ve just finished a course of antibiotics). Other ME/CFS symptoms are flaring up- swollen glands, feeling as if I’m coming down with something. There are precious few moments available to do something unrelated to my physical state–from resting or taking my numerous pain medications and supplements, doing my physiotherapy movements, or going to medical appointments and therapeutic sessions.
Most of these appointments I would not have been able to do without the support from the fundraiser, and I’ll write a little about these first.
I had a consultation with a private surgeon. Not an uplifting experience. The situation in my back, at least according to the MRI done last September, is rather worse than was initially implied. It’s not just a disc bulge but “an extruded prolapse on the back of a broad based prolapse eccentric to the left.” This pinches a nerve root, hence all the pain I’m in.
He listed my options (in his opinion):
– do nothing, many such issues resolve in a year, but my year is pretty much up. – have another nerve root block, but since the first one only helped about 15%, he didn’t think more would help. – have the operation, a microdiscectomy. He outlined all the (frightening) risks, and the post-op protocol – 5-6 weeks of no sitting, perhaps propped up in bed with pillows. This alone terrified me, given how long it’s taking me to recover from a relatively minor operation.
The surgeon told me he typically gives an 80 to 85 % chance of surgery benefitting my kind of symptoms, but due to my health profile, it would be 70 – 80%. My gut instinct is it could be even lower.
I was quite depressed after this consultation. Thankfully, just afterwards, I had a face-face consultation with the lovely NHS physiotherapist I mentioned in the fundraiser, the one who’d talked to me about central sensitization, where the brain sends out ‘this is dangerous pain’ signals when perhaps the pain is not as bad as that (and just to be clear, the pain I’m feeling is as bad cuaas I feel it, but it’s possible, due to the trauma of the past year and ME/CFS, my pain threshold is lower than it might be). He was lovely, and suggested I at least try another approach, a kind of CBT of movement of the body, very, very gently teaching the body-mind to try movements I’ve so far freaked out about – and not done if at all possible – for fear of them causing me pain. It was a relief to at least consider something else before going for surgery, and would take time, weeks, months.
The next day my throat lump was scanned. It’s a benign thyroid nodule, nothing to worry about. A huge relief (unfortunately the drive there and back, about an hour and a half in total, caused excruciating sciatic pain for the rest of the day/night. Car seats seem designed to do this!).
In the meantime, thanks again to the generosity of everyone donating to the fundraiser, I’ve been doing sessions of acupuncture with Nik Tilling who specialises in pain. Initially he treated the ‘reason’ for my pain, the disc prolapse, but then he worked on settling my nervous system (in constant ‘fight/flight’), and, well, my whole being. Nik is one of the most empathetic people I’ve ever met, sessions are closer to therapy/healing sessions.
I’m seeing a cranial osteopath and she too is focussing on settling my nervous system, and healing the damage done by the operation, and misalignments of my spine/sacrum. I’ve had one clinical massage session with another specialist in this area and will be having one this coming week.
Also, my dear partner has been doing healing bodywork on me, something I’ve not been comfortable with in the past. Partly because it is his ‘job’ and I felt it would just take too much from him to be working on me too, in particular at this time, when his own work situation due to the pandemic and Brexit has been horribly stressful, uncertain and worrying.
With all this, the pain is still there–last night it was as if my calf was being squeezed in a vice and as I write this a burning snake of pain wraps itself around my thigh–but something else quite profound is shifting in me.
And it is this I really wanted to write about.
As I said in that fundraiser, “To be asking for help, for funds, for myself, feels absolutely the opposite of what I ‘should’ be doing, when I know there is so much suffering that I could assist in alleviating. The truth is I’ve never found it easy to ask for help, of any kind.”
Well, in addition to the fundraiser, I steeled myself to make a post on a local neighbourhood website to see if anyone might be willing to ferry me to and from some of these appointments, in exchange for writing help. I didn’t expect any response, but over a dozen people volunteered, and most don’t want anything in exchange. Amazing.
And the other night I spoke to someone who knows physical pain intimately, an animal rescuer amongst other things. A very dear friend (who also truly knows pain) put me in touch with her. In addition to sharing what has helped her, this lovely woman invites me to her house in Ojai, California (one of my favourite places in the world ) where I can soak in her warm pool and learn from her experience. A total stranger, inviting me to her home. What a gift! The dear friend who introduced us has also invited me to her home in the States, in a town that abounds with amazing practitioners and another friend to her home in Austria where she would give me sessions…
So, how to fully express what it means to me to be receiving such incredible generosity? Of course I’m grateful, but it’s more than that. Something seems to be working through layers of past trauma, breaking down an unhealthy idea of how I should ‘be’ in the world. It’s kind of crisis of identity. I’ve had ME/CFS for 25 years but I’ve tried to pretend it wasn’t there and pushed myself to continue to be an independent, ‘strong’, do-it-alone sort of person. And now I can’t be this person anymore. The pain has forced me to surrender, to let go of who I thought I was, who I thought I should be. And in letting go, support and kindness and love just keeps flowing towards me.
I’ve often thought of my mother in the past while. Yes, wanting her to be alive, so I could hear her voice, but also because of who she was, how she behaved in the world. Such an extraordinary person. Someone who also believed in being independent, in not needing help. Someone who helped others, not the other way around. She was a powerhouse of a woman – a force of nature, people said – until her 70s, when things started to crumble, when her way of dealing with life was no longer possible (make a sculpture, build a house, organise a community centre, dig a garden). She was suffering from a variety of debilitating issues (including pain) yet spent the last years of her life alone, lonely, isolated, because she could not bear to be seen as vulnerable. She pushed people away – even dear friends, and family. She once told me she’d wake up in the night weeping.
I could so easily have walked the same path, ended up alone and isolated and afraid.
After one of my healing sessions I had such a powerful wave of loneliness wash through me. Not that I don’t know loneliness – chronic illness and chronic pain are lonely conditions—but this felt deeper, stronger, a loneliness I’ve probably had most of my life, ever since the car accident that killed my father when I was seven. Or earlier. Perhaps, even it’s my mother’s loneliness, or further back, her mother or her mother’s mother, or even further back. This wave of loneliness seemed almost touchable, so that I could truly acknowledge it. And in other sessions, acupuncture, for example, something similar is happening around feeling joy (I can hardly remember when I last felt joy), seeing if I can allow an opening for this, and for transformation in all areas of my being.
So, while I’m still in pain 24/7, still crying with it sometimes, I sense a possibility. I can’t see how it will look yet, but it’s brighter than where I’ve come from.
I have you to thank for this, all of you who manage to read these long posts; all of you who have reached out to me in so many ways. Thank you.
What is next? The NHS has put me forward for another kind of injection, ‘radiofrequency denervation‘ (essentially cauterizing the nerve). I’m a bit nervous about this and the surgeon didn’t even mention it, but it’s not till May so I have time to consider. [Update: I was given incorrect information – it’s just another kind of steroid injection.] I have enough in the fundraiser to explore not only acupuncture, cranial osteopathy and clinical massage but other modalities for several weeks. I’d so love to take up the kind invitations to stay with people in a healing environment–I’ve often said if I could wave a magic wand for myself it would be to be in nature near warm water–but I need to be much stronger to make any kind of journey. I wonder if this will ever be possible, given how unwell I’ve been for so long, over and above the pain. I’ve known of some approaches that have worked wonders for others with ME/CFS, intravenous glutathione and vitamin C or a PEMF mat – pulsed electromagnetic field therapy – for example (some studies used PEMF for Long Covid and chronic pain). And these would eat up my entire fund and more, so in the meantime I will try to keep myself open for ‘what wants to happen’ – an approach I use in writing, actually!
[Update: a friend just read this blog and said that in my wording of the very last sentence she heard the old voice of scarcity and limitation, that I shouldn’t assume the support I’ve been given would be over… so once I feel more sure about what might help, perhaps I’ll do a new fundraiser –argh, even writing this feels once again SO uncomfortable!]
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.
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.
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.
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.
I recently read a lovely post on Instagram, the words of a brave young woman who had CF (cystic fibrosis), it moved me deeply to hear how this she described the challenges of her short life, as it felt so similar to my own challenges. I hesitated in commenting as I felt my health situation could not compare, but perhaps someone out there needs to read how my life is for me, and perhaps not feel so alone.
Like most children, I used to pretend I was able to make myself invisible. It seemed I was quite good at it, I could enter and leave rooms without anyone noticing, I could ensure a teacher would not choose me to answer a question.
But the kind of invisibility I am writing about now is quite different. I am seen, but not seen.
For the past 24 years have a chronic illness (variously diagnosed as M.E./CFS or CFIDs or possibly chronic Rickettsia, a lyme-type pathogen), which to the “chronically well” goes largely unnoticed. Much has been written about ‘invisible’ illnesses and the challenges of having one, and I’ll put some links below this post, but I suspect it is mostly people who either have an invisible illness, or those caring for them, who read these things. So I’m writing this in the hopes that someone stumbles here, who is unaware of how an invisible illness is experienced by someone who has it.
To most people I look fine, I sound fine. I seem to be doing things healthy people do. I don’t have a feeding tube up my nose, I don’t have to walk around with an oxygen tank, I don’t even have an inhaler. I don’t have a terrible skin affliction. I have all my hair. In fact I am lucky to have a lot of hair. I am rarely pale. I walk at a normal pace, for the most part, although this is generally because I’m trying to keep up with a chronically well person, I hate to be a drag. My illness is so invisible, that even when I tell someone, I feel really dreadful, they carry on treating me as if I am feeling perfectly fine.
Actually, this is often my preference: to be treated as if I am as healthy as I seem. My illness is a boring subject for me, having had it now for so long.
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. There are a few people who have a good idea – usually those with a similar illness or the loved ones of those with a similar illness. I also do not want to be pitied, or to have people give me that Oh you poor thing look.
Generally I try to keep my health situation to myself. Illness is like death and grief. For the most part, people don’t want to have anything to do with it, and if I do talk about it, instead of simply asking, Tell me how are you affected by this, I’d like to know, most pull their eyebrows together and frown sadly, which is meant to look sympathetic but really is a kind of defence. I know, because I’m guilty of doing this myself. I also had one friend who would do everything she could to hear me say, Things are good before she would continue her conversation with me, or she would somehow find something in what I said to prove to her that I was doing better, that all was fine, and tell me so.
Or, people carry on as if the illness (or the grief) simply doesn’t exist. Being on the receiving end of these approaches is challenging. I may be chronically ill, but I am also so very many other things, and, I am often feeling really awful, in spite of appearances, and it helps me to have all of my ‘selves’ included in a friendship.
If you lived with me, my illness would not be invisible. You would see that just two hours after getting up in the morning, I am forced to go back to bed for an hour or so (on a good day). You would see me do some work for perhaps three or four hours at most, and then you would see me spend the rest of my day mostly lying prone. You might see me out and about, doing reasonably well, and then suddenly crashing, and then you’d see me desperate that I cannot be at home, in bed, instantaneously. You would see me leave the house in the evening for my weekly ukulele class, and you would know what an enormous undertaking it is for me. I haven’t taken a class in anything for years because I just felt too awful. I still feel too awful (in fact I’ve gotten progressively sicker over the years) but now I’d rather be taking the class than not.
If you lived with me, you would see that my symptoms usually increase over the course of the day, so that by the time I go to bed, I’m entirely overwhelmed by them and can barely think or speak. If you lived with me, you would know that a mumble means Night night,I love you.
The disease has changed for me over the years, there was a time when I would in fact a few weeks of relative health, and then severe viral or bacterial infections of some kind. But now, it is a daily experience of navigating relative levels of discomfort.
I am chronically ill and yet I attend to my writing, I attend to my animal rescue work, my friendships, my family, and I attend to my teaching commitments – all done in those few daily ‘useable’ hours. I can’t say I attend very well to these things, but I try.
I even manage to travel, and to participate in some events that demand a great deal of me, and I’ll seem just fine. I might even be just fine. Until I get home, and then, usually, I will get so ill I have no useable hours at all for a few days, or even a few weeks.
This is how it has been for years. You might suggest that I don’t do anything in those few hours, I should experiment with resting the entire day, or that I don’t go on trips. The thing is, I have spent so very many entire days in bed and I want a ‘normal’ life, and so those useable hours, those trips, are precious to me, they make me feel as if I too am a chronically well person, if only for a little while.
There are other interesting challenges associated with this ‘invisible’ illness ( although for some people it is not so invisible, many with M.E. / CFS are bed-ridden or have to use a wheel-chair). One is the name ‘Chronic Fatigue’. Most people will imagine how it is when they are tired. But Chronic Fatigue is not ‘fatigue’, it is not tiredness, it isn’t even exhaustion. It is frequently the severe, all-encompassing, crushing weakness and aching one might have with a serious flu or tropical illness. And then there is the multitude of other symptoms that would fill an entire blog post.
And then there is the unasked for advice. I understand this impulse, I have it myself – to try and ‘fix’ whatever it is that is wrong in someone else’s life. I’d much rather be listened to than given advice, I am a font of advice for myself, I don’t need anyone else to give it to me, unless you have a similar heath issue as myself, and have genuinely found something that has helped you or something you truly think worth trying. However, one of the main ‘problems’ with M.E. /CFS is that no two people have the same set of symptoms, and what ‘works’ for one person may not work for another.
M.E./ CFS is not a considered a terminal diagnosis, yet ME/CFS patients are at increased risk of all causes of mortality, especially suicide. Few people know this. In fact, no-one really knows what M.E. is. My own GP admitted: “It’s a name for something we don’t know what it is, and we don’t know what to do about it.” Personally I think these chronic illnesses are often the result of a kind of ‘cocktail’ – a pathogen and trauma. I’ve tried everything from Mexican Shamans to immunologists, but to no avail. So I try to carry on with my life.
Recently I had brief brush with a frightening, and often terminal disease: cancer. After a few terrible hours writhing in pain in A&E on a Saturday night, a mass was found in my pelvic area, and thought to be a suspicious ovarian cyst. I was fast-tracked for further investigations and then scheduled for an operation to remove both ovaries and fallopian tubes, the cyst to be sent for analysis. For 6 weeks I lived in a new dimension: a dimension where what I had was not chronic, but acute, possibly life-threatening. I cannot say it felt good to be able to tell people of my ‘new’ health situation, but it certainly felt different: everyone was well-informed about cancer and the potential ramifications. I had little explaining to do, and a lot of wonderful support. I no longer felt I was moving through the sludgy, invisible world of my chronic illness, instead everything became pin-sharp and bright – interwoven with a great deal of fear. I was afraid about the cyst, and about the operation. It was my first.
M.E. / CFS does not make me afraid, but it does make me feel extremely limited. I feel the illness has taken away much of my adult life. I realise this is a negative view, and that perhaps I have also learned much because of the illness. I have learned compassion, at least, for those who are in a similar situation.
The operation was not only a success, but miraculously they found no cyst, and only one fallopian tube was removed as it was severely twisted. On hearing this I felt so grateful, so very alive. I try to remember these feelings as I return to my ‘normal’, invisible illness. And that in spite of all, I am here, I am alive, and I am well enough to be writing this, for this I am truly thankful.
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?
I am engaged in a writing practice with a friend, a practice I call 
I shared my ‘
Sandra Jensen 