Myalgic encephalomyelitis [ME] aka chronic fatigue syndrome [CFS] is a serious long-term condition that impacts multiple systems in the body. Sufferers can experience severe fatigue and persistent insomnia, while symptoms can be severely exacerbated as the result of physical, mental and emotional exertion, no matter how minor.[this phenomenon is known as post-exertional malaise].
May 12th was chosen as the day to raise awareness of the condition because it is the birthday of nurse Florence Nightingale. Many medical historians believe she developed ME/CFS as a result of a chronic brucellosis infection. Of course she wasn’t diagnosed with it because the name Chronic fatigue syndrome (CFS) wasn’t used until the mid 1980s when the term was coined by the CDC in response to an outbreak of “chronic flu-like illness” in Incline Village, Lake Tahoe and several other outbreaks and sporadic cases in the United States.
After being forced to move recently, Paul talks about the way in which his new environment impacts on his condition. Too often people look at problems through their own lens and fail to understand just how severely people with ME/CFS are impacted, even by seemingly small changes in environment. Mat Amp [Project Coordinator]
When people talk about my MECFS they often cite this paragraph on the MEpedia page about me.
“CFS sufferers are the masters of Cost Benefit Analysis. Every decision has to be weighed up and merited for its benefits. Do I shower OR wash-up, won’t have the energy to do both, which is the most beneficial. Shop or Cook? Eat or drink? We work in 10 minute chunks, we know the distance and energy required to get to a shop, but If the products we are going for have moved 3 shelves inside, we won’t make it. We’d planned and exerted perfectly but any deviation, we’ll be reliant on the assistance of someone to get us home.”
But those impacts are never considered by Social Workers, Housing Officers or the DWP. The very essence to how I manage my time and what makes me successful is the least concern for the people paid to support me.
Only in the insanity of the 21st Century would that make any sense to anyone.
The results of my 3 months of housed security during “Everyone In” April to July 2021, access to a working shower, ability to cook and manage my own food purchases was manifest in my story for The Bureau of Investigative Journalism twitter takeover.
Healthy, relaxed, toned and clean.
Paul Atherton FRSA
Environment is everything. As many of you know, last week, this being Monday the 26th of April 2021, last week I moved into new accommodation. The upside- windows, daylight. I had opaque glass at the previous accommodation and that was incredibly oppressive considering we were stuck in all the time. The other upside is I’m closer to the park. This makes a huge difference to my mental health, my ability to turn around what could potentially be a serious chronic fatigue syndrome crash. You see, it took me fifteen minutes to walk to a park at my previous…from here it’s four.
Now, whilst for most people fifteen minutes won’t be here nor there, to a CFS sufferer, fifteen minutes can be the difference between getting out or not getting out. So four minutes there, four minutes back is eight minutes. It’s half the time of what I had to get there previously and sometimes that’s all you’ve got. Sometimes you’ve just got eight minutes of energy in you. But it means if it’s a fifteen minute walk, you won’t make the attempt to walk, it’s too far. An eight minute walk allows you to get to the park and sometimes just get to a bench, come back, but that’s better than not getting out.
That’s likely to make your recovery quicker. It’s not always possible but it helps. But the downsides of where I am is there are no supermarkets or no Tescos or Waitrose or anything of that nearby. There is a NISA, literally a minute or two around the corner, which you may say is great, except it is four times more expensive. than a supermarket would be so let’s take something as simple as a packet of biscuits, a packet of dark chocolate digestives in this shop costs nearly three pounds. Normally, we get them for about a pound 30. Milk is the only thing that’s about the same price. But I try to avoid drinking milk, it makes me bloat, it causes all kinds of various impacts on my condition, so it’s not a good thing to have. So I normally have a milk alternative, either sort of almond milk or coconut milk or anything of that sort. In the local Marks and Spencers I can usually pick up a litre carton for a pound. In Nisa it’s three. That’s beyond my expenditure.
The other thing I don’t have here is a workable kitchen. The fridge is in desperate need of a deep clean, it’s been cleaned once, but there’s a stale stench that I can’t get rid of and taints anything that goes in the fridge. I haven’t had running hot water for a week. Oddly enough, the shower is on a separate heating unit, so I can at least shower, but the shower is broken. Now, for an MSF sufferer, anything that stops you from doing something can scupper your entire day.
And one of the most important steps of the day is getting to the bathroom, brushing your teeth, and then the next step is a shower. If the shower is a problem, it will knock you off your perch. They’re little things, they’re inconsequential things or can be to other people, but to chronic fatigue sufferers they are sometimes insurmountable. And this is often what’s forgotten when people are placed anywhere in this sort of ‘aren’t you lucky to have a roof over your head type attitude.’
Now in this context? I’m actually incredibly grateful because this isn’t a state delivered thing. This was the hotel manager doing his utmost to make sure I stayed inside. Then that is a generous thing, then that is someone going beyond the call and of course, you’re appreciative of that. But even with that in mind I am now having to eat out. Previously, I was spending about six pound a day to get three really healthy meals. I’d lost weight, I looked good, I felt good, the exercise was helping inordinately. Everything was just better. And I know I probably talked about this before, but it was, it was just better.
But that was only for the first three months. That was ‘Everyone In’. That was just from where I landed from April 3rd to July the 3rd. After that because of the insecurity, all of that good work vanished. And so here I am now with an unworkable kitchen, a difficult to deal with bathroom. I’ve lost the separation of living room and bedroom because I’m now in a studio, so the bed is in that space. I don’t have a table or chairs. I have a couple of sofas, but that’s it. And that means I can’t sit up, it means I can’t get breakfast, so I often don’t eat until midday when I go out to buy something out so I can sit at a table and eat proper food. That means that my expenses have gone from six pounds a day to nearly twenty. That isn’t sustainable for very long.
My social worker hasn’t organised food parcels or anything of that ilk, and so everything’s a whirlwind at the moment. But I just wanted to keep coming back to this notion of environment – the idea that where you are impacts on how you feel, how you function. And it’s so often forgotten. ‘Look, here’s an accommodation, go off and do that’ and you’re like ‘but there are so many other facets to that’ And this is what people keep saying again and again and again. You cannot just place people inside. That is not the solution for those people experiencing homelessness. You have to take the person as a whole, and find accommodation to meet their needs, not have accommodation and just chuck them in it.