Creatively visualising PEM and fatigue

How could someone draw, paint or otherwise visually portray these? [eta - over time] I want to do a creative project for myself but it's tricky to get going with this one...

• PEM
• Exertion intolerance / Fatiguability
  
• Random symptoms coming on for no apparent reason
• needing to sit or lie down

I like the way Trish summarised it here:

If you've seen anything like this then please share a link!

 

On the fatiguability one I was trying to squeeze vinegar from a squeeze bottle into another one the other day as after a few seconds my hand and thumb started shaking as they couldn’t keep the pressure down needed to keep the ‘squeeze’

another common one is using arms eg to wipe something high briefly then being unable to lift them (so eg you can’t get a cup to your mouth without arm shaking at a certain point with exhaustion) abd having to have them supported completely on a pillow for many hours

the other common one I guess to nearly all is having to wait until well enough to be able to shower even though doing so sitting down. And then having to lie down afterwards for a long time due to exhaustion

 

I have a lot of sympathy with the sun god, Ra. Often feel as if I've rowed the length of the subterranean Nile overnight carrying the sun and fighting off attacks by the god of chaos.

Which is why the La Tène gold boat found near Lough Foyle is what always comes to mind. No connection to the religions of ancient Egypt, it's just that I've seen it.

 

To me if I had to explain PEM in imagery. It’s like I did a lot of exertion one day and the next day I wake up lying flat on the road. Everything hurts. It’s extremely loud (“hypersensitivity” + tinnitus) and every time I try to get up I get knocked over by a passing car. So I just have to lie defeated on a busy road while traffic acts like I didn’t exist.

 

I embrace chaos

 

For PEM, I'm imaging an animation of a simple figure, walking, super upbeat, waving to the camera. He/she would look something like this (courtesy ChatGPT):


We'd be following him as he walks, and on the way he'd do a few little activities. Maybe shake hands with another person, toss a basketball he finds. Then he'd come across something really intense, like saving a cat from a tree. He'd do it, climb down, then continue on his way just as energetic and happy as before, doing a few minor activities. Then after like 15 seconds (which represents much longer) he'd start slumping more, walking more slowly, looking more and more tired until sitting, then laying down and pulling a blanket over himself.

Maybe a voice over all the while explaining what PEM is.

 

For PEM in the early days (ie before we knew what it was) many who knew me well enough would say that if I had eg an evening out then I’d end up with raging tonsilitis every time. But of course looking back I think that was just the nature of being in rolling PEM then having pushed limits at end of week (when your body needed you to rest at weekend) and so it all cumulatively catching up with a big bang. And the timing being such that you are exhausted at first then because more symptoms hit a bit later you assume you caught something.

the other is the classic migraine every Friday - which is probably PEM and some sort of just cumulative exhaustion and by Friday you’ve either had enough control you scrape forcing your way through the week or your body gives out before you get to the end


In a cleaner sense, when you can control more and aren’t in work etc then the having to have an appointment is the classic. For me I ‘magic’ (by resting and planning) seeming far more functional than I am for that walk in and talk to notes for 10mins but then 36later I’m in pain from a rheumaticky thing all over in hands and wrists and feeling awful and I have extreme lower leg pain and wee a lot and am exhausted but can’t sleep due to the pain headache and being so exhausted I need to rest for that to ease so I can rest. I always assume others will get it because I remember when I had tonsilitis that there was often times within that where you aren’t just fast asleep but stuck awake in pain feeling ill

 

Forestglip's imagining seems right to me: something showing someone active, and then "the life drains out of them" and they crawl to bed and hide under the covers. I think the latter part will be understood by most people, since most people have had that feeling from a flu or other illness. For verbal imagery, I tell people to remember how it feels to have a flu come on, and you feel lousy and achy and just want to hide under the covers.

Does anyone here remember a commercial for some breakfast cereal, where the question was "Do you feel like you have to drag yourself to work in the morning?" and the image is of a woman lying on the sidewalk, seeming without the energy to move, and then "her" arm yanks her along the ground. Then she eats "that" cereal, and strides briskly to work, passing another guy on the ground yanking himself along. Very funny, and it does remind me of ME/PEM.

I expect that a good actor or model (mime?) could express ME symptoms in a way that other people could understand. Artists too. Unless you find one with ME, you'd have to explain it and provide feedback "No, that person doesn't look drained enough." Finding an art form and artist that communicates the symptoms of ME clearly might do more for ME funding and public acceptance than a lot of other options.

 

I love these!

I get the arm thing a lot too!

 

Yes I see why this get the message across!

 

I was imagining a video game with batteries on the screen/dashboard and line graphs, somehow showing that when you do stuff when not in PEM it eventually leads to PEM, and when you try do do stuff when you have fatigue or PEM it actually costs even more and compounds

 

We absolutely need a video game I think to get people to understand ME/CFS properly. From the PEM and energy limit perspective.

so that they stop misinterpreting what they see when we step up to ‘fight’ on a good day having saved all our energy by attending an appointment and having rested before, prepped notes, been careful about any travel. And stop using that against us to coerce us ‘if you can do this now’ etc you aren’t that ill

I think them trying to navigate the strait jacket of a tiny envelope and realising brushing your teeth is a major activity, as is someone else’s noise you can’t stop or control and definitely all the obligations to do with forms or appointments are normally way beyond them - and how do they make it so they aren’t more ill in six months time when they need their medication, will lose something vital if they no as certain appointments or paperwork and don’t want their teeth to rot but dentist is a huge exertion as is tooth brushing etc

 

Only thing is, players would get frustrated too quickly to get to the 'good' part

 

I see shapes within my body.

Increasing exhaustion is like the dark blue-black blade of a sword descending within my spine, pointy end down, two dimensional duality created by trying to be active and control my actions despite the resistance and crushing fatigue. When it reaches a certain depth it pierces something and PEM will be the result, only its not obvious, I cant see it, only know from experience, "oh-oh that did it" kind of thing. The fatigue also creates a big mill wheel on my head placed like a crown but full of pinky fuzz with fluttering shapes at the edges which is my hypersensitivity, confusion and indecision, this gets heavier and the rim sinks lower and gets more fluttery the more tired I get until it is like a hemisphere of no clue whatosever.

PEM used to be like an angry pink and brick red ball of frustration rising from somewhere in my midriff, to meet the descending wheel of confusion before covid, setting my fatigue and confusion in stone as it were and creating a crash when they meet and overlap. But now it is much easier to trigger PEM after covid (plus the PIP appeal to tribunal I had to do in 2017 which forced mental overexertion) and it comes like a vice, invisibly winding in on both sides to squeeze my brain 24 hours later and create a migraine which only loosens its grip 24 hours after that.

Naturally I try to avoid causing PEM now as it is disproportionately painful. Since covid I can do much less before PEM is triggered, the blue sword doesnt even get to my neck. I don't dare be angry as it only makes it worse I just have to stop and drop everything to rest and try to return to my rested natural sword free form, as a free floating jellyfish-cloud-brain.

Dont worry, people don't normally get where I am coming from. Its probably because while undiagnosed for 10 years, not having a clue why I was the way I was, unable to work, I tried all kinds of new age meditative stuff with various cults and shamans, partly to seek some kind of cure and partly to justify being unable to engage with the world of work by inventing a Quixotic mystical quest for myself. One phase of which involved focussing one's mind on parts of one's body and trying to transform the feelings and visual images experienced in relation to the part of one's body focussed on.

I will always owe a debt to the one who taught me ... £80 to be precise which I am unlikely to pay! hahaha!

(Not to worry as she had already acquired quite lot of my money. My departure required a final act of rebellion!)

PS when thinking about the ramifications of such imagery I am reminded of the Arthurian legend, the sword in the stone also the sword of Damocles and the granite ring of Berkeley, you can get pink granite though the ring at Berkeley is not pink.