Hello my lovely loves!
This is the first piece in a series I've been meaning to write ever since I started this blog. I really want to discuss ME/CFS symptoms individually, to try and explain how they feel to non-sufferers, and how I combat them for the fellow Spoonies.
It's taken a while to get to this point, partly because I felt there were other things I had to discuss before this would make sense, but also because it's really, really difficult to find the words to express how specific symptoms feel.
It doesn't really help that the first symptom that really needs to be addressed is fatigue, and this is one that's really difficult to put into words. I will try, though!
For my fellow Spoonies, the first part of this post is going to be me trying to get across how hard things are. You might find that helpful, but equally you might also find that upsetting, so if you'd rather skip that part and go straight to the section on coping mechanisms, then I will be posting the first tips section tomorrow. You can sign up for email notifications of when I post if you like too.
Most sufferers have a go-to metaphor for trying to explain ME/CFS fatigue. ME/CFS fatigue is not like normal tiredness, but we're always trying to find understandable ways to explain it to non-sufferers.
I've heard someone liken the difference by comparing walking to the shop to doing a marathon, riding their bike in the wrong gear, or trying to walk backwards through treacle with a hangover.
I've said it's like having a constant wine hangover, like having weights tied to your limbs or being a phone with a broken battery.
All of these are pretty spot on, but for me the one thing they miss out on is the relentlessness of the fatigue.
Those are all great to explain the bizarre "dear-god-why-is-everything-so-difficult-now" feeling in the short term, in a short, relatively light-hearted way, but it doesn't really explain the full extent of the problem, because all over those things end.
Hangovers go away, ME/CFS doesn't.
I've always kind of thought of Spoonies in general as a bit like Sisyphus, the character in Greek mythology who is sentenced to push a huge boulder up a hill in the afterlife for all eternity, only to watch it roll down again and again, ready for the next days work.
(Although actually typing that has made me realise that the reason people use short, relatively light-hearted metaphors is probably so they don't sound that over dramatic.)
For once, though, I'm going to use the metaphor that I have never said. The one I've always thought but never felt comfortable actually saying to anyone else. It's really more of a story, so you'll have to bear with me, I promise there's a reason to making it so long winded.
You've had a hell of a day. It’s 8pm, it's absolutely bucketing it down, you’ve just left work, and you've got to take public transport home.
You've had to work late because there's a big deadline coming up and all of the other people who are meant to be working on it have come down with this horrible flu bug that's going around, so you’ve ended up doing about three people’s work for the last couple of weeks.
This is bloody typical, because they were barely pulling their weight before so you’ve been juggling everything to make the whole sodding thing work for the last couple of months and you’re so, so sick of it. But it’s important, because you need this job, and the pressure is there to keep it (despite all the back breaking work, you’re so skint it’s unbelievable), so you’re hanging on, and working through it as best you can.
Your boss has had a terrible day too, and, as the only person in the firing line, you really don’t want to mess this up. It's a barrage of constant questions and emails and calls and jobs to do, and you're not quite sure how you're going to manage.
You've a horrible feeling that you're coming down with the bug too, because you're head is pounding and your eyes are scratchy and everything just aches. You were hoping that it was just the wine from the boring work dinner you had to go to from the (late, late, late) night before, but the odd disconnected feeling hasn’t left all day, moving feels difficult, and your concentration is just getting worse. You can barely think.
There’s no way you can get ill now because there’s so much work ahead of you, and you’re the only one who’s still upright. Just.
The walk to bus stop is frigid and wet and there's no room left under the shelter so you have to stand in the rain waiting for your bus.The first two buses are too full to let you on and they drive right past, splashing your legs from dirty, freezing puddles.You can feel the water trickle through the insides of your shoes.
It's cold and wet and dark, and, when you finally get on the bus, it has that horrible warm, dampness that feels like germs, and getting sick, and smells like B.O. and passive aggression. There’s a child screaming and they just. Won’t. Stop.
There are no seats left and you’re jammed against several other commuters, who seem as happy about it as you are. It’s almost a disappointment you’re not packed in more tightly, because then maybe you could rely on the crush to hold you up.
You’re now sweaty, even though you still feel chilled, and it feels disgusting. Your head keeps pounding.
The bus terminates before it’s supposed to, but there’s no bus stop, and you're fed up of standing and waiting, so you trudge on home. Your legs hurt. Everything hurts.
You walk down the cold street, and your hair is plastered to your head because your umbrella broke on the way into work, and you had to work through lunch so you didn’t replace it. You didn’t really have the spare arm to carry one anyway. The cold water is making your neck ache worse, and your bags feel like they're getting progressively heavier. Your wet shoes are chafing your feet.
You walk up to your cold, dark house. No one is in, and all you want to do is crawl into bed and never leave.
You look for your keys, but when you look through your bag... you can’t find them. You look through everything frantically, before realising you must have left them at work.
It’s cold, and raining, and you’re damp, shivering, sweaty, achey, weighed down and so, so exhausted that you can barely think or keep yourself standing, but if you want to go inside and lie down, you’re going to have to go back and do the whole thing again.
That. That instant when you don’t know whether to cry, or laugh hysterically, or scream, or pass out, that’s how ME/CFS feels when you wake up in the morning. When you’ve just slept.
Like you’ve already run a thousand marathons, with a thousand hangovers, and dear god you are so tired of it you don’t know how you’ll make it through the day. It’s not the tiredness that gets you. It’s that it never goes away.
Physical tiredness is hard, but the kind of bone-deep, soul-deep exhaustion that comes of being exhausted all the time is in a league all of it's own.
It doesn’t have to be like that, and just because it has, doesn’t mean it always will.
To my Spoonies, we can beat this. You know that it really is that hard, and sometimes, if you’ve pushed yourself, or something unexpected has happen, it’s even worse. I’ve spoken about that before, and I will again.
But, there are ways to beat back the tiredness, the never-ending exhaustion. Hopefully, one day it'll go completely, but in the mean time we can definitely make it more manageable, so that each day the burden gets easier to bear, until the load gets lightened.
And now I've thoroughly depressed everyone, here's a puppy.
Ah, Google. You never let me down. (Except when you don't pay your taxes.)
I'll see you tomorrow for the first lot of tips.