Counting down the days

Not hoping for a miracle

Florence Nightingale, a woman whose legacy is synonymous with care, shares a birthday with my grandad.

Of course, this isn’t a piece about Florence Nightingale, nor my grandad, but both of them will forever be linked in my mind to ME (cfs) Awareness Day, 12th May.
I was diagnosed with ME in 2018, I was the same age that Florence became bedridden with chronic illness just a year after her homecoming from the Crimean War, and as Florence experienced for nearly all of her later years, I’ve been living and experiencing life from my bed ever since.

2019 ME Debate illustration

I created this image in 2019 for the ME Debate at the time. Things haven’t moved on very much since then, there’s a complex and simple reason for that.

ME still gets a bad rap from the media thanks to the psycho-social crowd (psychiatrists who are intertwined with politicians and funding bodies, need I say more!) as it used to be treated as a mental illness rather than a biological illness. Mental illnesses are given psychiatric meds and CBT, easy and simple, next!
Biological illnesses require proper funding for research, years of trials, and establishing a cause before treatments. Not so simple. Expensive. Arduous. Committed.

Fortunately, I have a wonderful GP who has known me pre-illness and listens to me when I come to him with evolving symptoms that worry me. Not everyone is that lucky. Too many are still sectioned because they aren't responding to the trope of "fresh air and exercise" that will make any sane person better.

Some terms of use

Long-Covid (LC) has a huge cohort of symptoms similar to ME, to the point that up to 50% of LC sufferers can receive an ME diagnosis on top.

If you have noticed, I prefer to use the initialism ME (myalgic encephalomyelitis) meaning muscle pain, and brain & spinal cord inflammation.

CFS is the old term (chronic fatigue syndrome), coined by a group of folks who wanted to downplay an epidemic in Lake Tahoe in the mid-1980s, and entirely around minimising public knowledge. There is a posthumous belief that Florence Nightingale had ME or a very similar chronic illness as she became bed-ridden with pain and fatigue in the mid-stage of life. She stayed in bed to manage her legacy, as many of us now do. What she had access to that many of us don’t, however, is the direct contact with the government establishment, substantial power associated with her name, and a team who will care for her if she needed it.

What, how, where?

I don't know how I contracted it.

Stress, burnout, trying to keep my daughter alive whilst training for the Offa's Dyke Path run (length of Wales) in order to raise money for mental health charities undoubtedly gave my nervous system some damage. As everything comes back to the brain, the trail is hot for effective, relentless brain and spinal cord inflammation.

When I'm sick, I have too many symptoms to list, but here are some notable ones that affect me being present online or IRL (in real life):

• My brain heats up (think lactic acid when you've sprinted a 100m).

• I lose ability to talk, or understand language, even simple words.

• I am not able to feed myself, or move my body; pseudo-paralysis or the weight of the world?

• I keep myself in bed to minimise use of muscles. Everything, typing this, sitting up recumbent, reaching for something, is all exertion.

Naturally, this makes ‘working’ awkward.

The 9-to-5 Conundrum

Currently anyone with mild-moderate-severe ME is likely dealing with the UK Labour government's plans to cut disability benefits, a life-line for accessing payments to therapies (NHS does not offer ANY treatments) and that top-up for those like me who cannot just get a job. These cuts affect me, on a deep level, my dignity is not spared, and on a realistic level my partner cannot afford to also pay for all my therapies, supplements and food on top of the rising costs of general living. This is what the government support helps me with, besides the sense of an independent fund, now that my personal independence has been taken away.
It's been very stressful dealing with this recent news. The increased distress of losing my meagre financial independence whilst having to prove the severity of my condition to people who are not emphasising the ‘care’ model of social welfare particularly well, caused so much pain in my body that I spontaneously developed a new, lifelong diagnosis of TN (Trigeminal Neuralgia) a facial nerve pain disease which may or may not be resolved with brain surgery, if I’m lucky.

I honestly thought living with ME was as bad as it would get for me. The universe threw me that curve ball and the only upside is that the medication for TN really does help with all of the nerve pain that ME gives me! Obviously, the pain was there to remind me of my exertion. And pain medication eventually fades…

Ah, ah, ah, ah, Stayin’ Alive!

Staying alive has been hard. I've wanted to give up so many times over the past 7 years. I’ve felt my body move closer to death because it didn’t feel possible to live in so much pain and survive it. I’ve made my peace with death and am happy to talk to anyone who is curious about what this can mean, beyond “passing away”.

I lost 99% of IRL friends. I have one friend who has remained who sees me once or twice a year. I am very lucky to have her in my life.

My children became carers whilst in primary school and secondary school. My son has known me to be ill far longer than his memories are of me being well and strong.

ME is a difficult condition. It is not contagious. It can happen from a viral condition, overnight, where the body just stops functioning properly. For me it was gradual. I was used to pain from physical training, I smirked at pain, it hadn’t gotten me yet. I was always on the go. It was when the pain meant I couldn’t hold the lead of my puppy during a one-mile walk with my then-ten-year-old son; when my body would become a well of lightning strikes criss-crossing my body all night; when I could barely hold a paint brush without feeling as if I would collapse in pain, sending my heart rate into spikes because something was dramatically happening.

Something physical, biological, insidious, was happening within my body.

The others

It can happen to absolutely anyone. Yes, I was that person who was “uber-fit, doing all the things, being all the things, and in my mid-30s, my life was just starting, illness can never touch me” sort of attitude and ignorance. I did what was right according to the messages that society was telling me I needed to be. I was healthy!

Gah.

Sorry, it happens to more women. And simply because research is terrible for any women's health issues, who knows if we will ever understand why this is. My previous point may be part of the reason why. Don’t take my non-medical professional word for it. Sarah Ramey tells all in her incredible book “The Lady’s Handbook for her Mysterious Illness”.

Another great media production related to ME is the film “Unrest” which won a lot of awards after it was aired on Netflix. This is a documentary about ME by PhD researchers and involves stories from around the world.

#ThereForME

More research is being done, but even now the UK government, for example, will not fund any support for ME patient-specific care in an NHS hospital setting —the most dangerous place for ME sufferers. I refuse to go to hospital unless it’s a specific appointment. If I’m in pain, the usual pain folks will get themselves to A&E about, I wait to see how close to death I can get. If it’s a situation that continues for months, only then will I bother my GP about it.

Some folks with ME have been made aware that their medical records contain a DNR (Do Not Resusitate) indicator, not something they would have agreed to. It’s a difficult decision for anyone to make even with a choice. Having the choice is the principle.

Are the government even meant to help folks with ME?

Well, yes. It’s part of the agreement of a social contract. We elect officials to organise funds to help cover our social needs—street lighting, telephone wires, schools, buses, hospitals, specialised clinics. The specialised clinics for ME, as with those of LC, have dwindled. There were two in North Wales. Now there is, maybe, one which deals with both ME and LC. These clinics confirm a diagnosis, but offered no treatment. Offered no blood tests, or physical therapy, or integrative health treatments. They were, strictly speaking, administrative. Thankfully there is a band of briliant advocates who are trying to remind the government of their duty of care to those with ME. This is via the #ThereForME initiative. It’s really quite a simple approach, if the will is there.

So far, this Labour government doesn’t have much will with regards to anyone who is suffering with an untreatable condition.

What a journey

I have been on a profound spiritual journey with this. Suffering being a concept that ebbs and flows, depending on how attached to life and outcomes I am. My ego has been pretty pulverised. I have no idea if my body will ever recover, it can happen, but percentages are fewer than 5% of making a full recovery once you hit the 5-year mark. Or so I once read.

So I take my life as it is, grateful to be included in places where I cannot get to IRL.

Grateful that my sunshine, joyful, emotionally-in tune nature is still able to come through (it doesn’t always, to be fair, even I can check out from all comms too often).

Grateful that I have technology that means I can carry on creating from my bed. I didn’t have this tech for the first few years I was sick, and have only had a laptop since early 2023 so accessibility has been hard to get.

That was a lot of the suffering, the exclusion because of ‘simple tech’ that I simply couldn’t afford.

What can you do?

I don’t have a specific charity for you to go look at. There are several great ME charities focused on research for causes in order to pave the way for diagnostic measures and treatments. If there’s anything positive from this, it’s that you’re reading this and wholly more educated about ME than you were before.

And like other chronic illnesses, it requires a lot of extra consideration before judgement.

They are expensive conditions to manage.

Perhaps you can promote and champion the campaigns to reverse the Labour decisions for cutting disability support, this would be a good place to start. Allow us the dignity to choose our own treatment path whilst the government gets its ducks in a row. Also, here is MP Richard Burgeon’s petition against these disability cuts.

Be the person who recognises that someone with a chronic illness is trying hard to be there, and some days they simply can’t because of the pain and pathological exhaustion.

Oh, and if there’s anywhere that offers accessible, up-to-date tech at a discount for chronic illness sufferers (because ME isn’t alone in this category), champion those!

Thank you for reading!

Happy Moon Day! ✨🌕✨

Many blessings for this Scorpio Full Moon!

Yvie x