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| This cat looks how I feel, mostly. |
If you want to know what long haul feels like, just ask me. In 1973, at 16, I got Glandular Fever (Infectious mononucleosis), caused by the Epstein–Barr virus (EBV). The NHS still say that, "You should feel better within 2 to 3 weeks. Some people might feel extremely tired for months." Lies! My GP back then had said it would take six weeks, but when I didn't get better and went back to him because I was exhausted and not feeling better, he just said it was my imagination.
This year [2023], I finally got my pension at 66 - I'm also one of those WASPI, 50s women who were robbed - and this year I've had Myalgic Encephalomyelitis (ME) for 50 years. It's as far away from just feeling extremely tired as you could possibly get. And I'm still not better, and I 'effin well cannot still be imagining it! Seriously, the older I get, the more angry I become that we haven't progressed; that there is still only stigma and lies and no real treatment, nor care.
Generally, I don't have the energy to write (and don't want to depress myself), but I feel this 'milestone' needs to be acknowledged and highlighted to draw attention to the continuing injustice that is being done to so many people with ME.
After 50 years, I still couldn't even find an image that properly portrays it.
Anyway, that was the 70s. The GP I had then will be long dead now. He wouldn't have understood ME, but he didn't want to understand what was wrong. Some guideline said six weeks and that was that, like it was law and set in stone. I had no idea what was wrong then, I just knew I still felt (and feel) ill.
It wasn't then and isn't now depression. I've always WANTED to do things. I have no wish to be and constantly struggle to be idle or even rest. But no, I've been accused of being depressed, lazy and even lying. I'm deeply, deeply, offended and angry about those false accusations and the knock on effect that these have had, meaning I've been denied help, treatment and even compassion as a result.
In the 80s, articles about "Yuppie Flu" began appearing in the press. Ironically, it was their descriptions of the symptoms that made me realise what I had. On the other hand, I was not about to go to a doctor and get labelled with it. The harm of that labelling has already meant I had no alternative but to keep pushing, keep working, until I could only work and crash and eventually couldn't do my job and was let go - not once, but several times - until I was unemployable.
I've never had a good relationship with a GP. Something must have been written on my records at some point that presumably says I'm difficult, or a malingerer, because more than once I've moved to a new area, registered with a new doctor, been to see them and had a helpful, positive first encounter ... then a week later, once my notes had caught up, was instead treated with utter contempt. Add the frequent harmful advice to exercise, or offers of yet more CBT! [1]
Nothing changes. It took me 35 years to get a diagnosis at all, such as it is. That was way back in 2008. Fifteen years later and I'm just 15 years older, quite a bit worse and the last form I filled in, I had a list of 14 conditions (not counting a laundry list of comorbidities masquerading as symptoms of the others.)
ME is acknowledged as variable: I can feel fine (my fine, not healthy fine) one day and not the next or even vary from hour to hour, minute to minute. What hasn't varied has been the steady downward decline over the years. At 16, my lack of energy was relative to how I was pre-illness. By 1995 - and around that time suffered another serious, unidentified, virus - I was unable to work and became mostly housebound - only managing to leave the house once or twice a month. Pandemic lockdowns were no problem when I'd already, effectively, been in lockdown for 25 years. Once upon a time, I could even sit in chairs!
All I can do now is to recline on the bed, supported and at a low angle and not for many hours, before needing to lie flat. I can't sit up. Sitting at the dining table is just no. Occasionally, I'll try to recline on the sofa for a couple of hours for a change of scenery. It'll take me 3 or more days to recover to baseline. Once in a while, I just have to go out and attempt enjoyment, or I will properly go mad. As I write I'm on day 8 of having to lie mostly flat to recover from an outing and from sitting up long enough to eat a wrap for lunch, while my back feels "broken" and where, if I try to raise myself up, I shake from exertion, feel nausea, my head almost explodes from the pain that hits it and I feel like I have a fever.
There are no "daily living activities" that I can manage. I can't make myself meals, I can't take care of myself, or the house, or anything. I have a view from my room, but I can't get up to look at it, nor can I tolerate the level of light. One little chore, or repeated visits to the loo cause me chest pains and PEM.
There really is nowhere left to go with this, nothing to be gained from wishfully thinking that there may one day be a miracle. That's just toxic positivity: yet more denial, minimization, and invalidation. There's no point seeking any form of medical care, merely to experience more medical abuse and gaslighting.
'Managing' this chronic illness, now means avoiding doing anything. Not from choice, but from necessity caused by a lack of research, treatment or care.
The hardest thing for me used to be asking for and accepting help and feeling that I was as entitled as anyone else to getting that help. Now there is no help available. I've asked. [2] Now, the worst is feeling there's no hope. At 66, even if adequate biomedical research were being done into Myalgic Encephalomyelitis (ME) (it isn't), there's no realistic hope that such research would be translated into effective treatments, available to the general public, in my lifetime.
For me, all that's left is to let go of hope and stop fighting a battle I can't win.
[1] Having been offered (coerced into) CBT for ME (well, CFS) on many occasions by the NHS, as well as for just about every other ailment down to ingrowing toenails (sarcasm), I tried - I went along and wasted my precious energy - but never saw the point. So, I decided to do a course, from which I 'qualified' as a CBT therapist with distinction, a certificate and everything and, laughingly, am "thereby entitled to use the letters O.A. Dip. (Cognitive Behavioural Therapy)". I do feel qualified to say CBT is completely inappropriate for anyone with ME.
[2] One thing I was not prepared for is the 'lottery' of care provision. In Devon (from 2018 - it had taken all that time to get any help at all), I had carers daily who helped me with personal care; prepare simple meals, change beds, laundry and light housework: washing up, tidying, hoovering, dusting, accept grocery deliveries ... They'd even feed the cats. This was provided so I could conserve what little energy I did have for some sort of 'life' and to prevent exacerbating symptoms. This was all lost with the pandemic. Tried to reinstate some help after I moved last November and, locally, all they will provide help with is personal care (which is the least of my needs and I haven't taken it up, because I need help in the house, not someone 'up close' yet, because of COVID). They won't provide help with housework at all (the only way to get that is to pay a cleaner), nor with preparing food, just told me to get 'meals on wheels' delivered - impossible with all the dietary requirements and food intolerances that come with ME/CFS. Without such help, I'm therefore required to make myself more ill trying to cook and feed myself (and wash up, etc.), or make myself more ill eating food I cannot tolerate, or starve. This is a completely unacceptable situation.
