Context: I got Covid in September 2023 which turned into Long Covid shortly after, a chronic illness where the symptoms of Covid stick around long after the virus has left. It has radically altered my life in ways I’m still trying to come to terms with 2 years later. As an official member of the chronic illness club I hope this post makes you feel a little less alone and a little more seen. If you are fortunate enough to be a person in good health here is an insight into how things have changed for me.
Saturday morning at 9:00 a.m, sunlight streaming through the windows and a cup of tea in hand. I sat in the living room as my parents bustled round the kitchen, Barney the beagle trailing after my dad, either trying to be helpful or seeing if any of the breakfast bacon would make its way absentmindedly to the floor. They were visiting for the weekend to help with some house and garden work, a godsend since I got long covid. Me and my mom sat on the couch as she fills me in on an endless stream of family gossip and small town drama, words are washing over me when I feel it, like a white noise rushing in my ears, a distant ocean coupled with dread.
I’m crashing and it’s coming fast…..
I’ve run to the end of a line I didn’t know I was using up, looking to my mother I realise her words had stopped making sense about 5 minutes ago, they’re sliding off my brain and a dull thudding in my head is starting to grow.
“I’m sorry I need to go lie down”
Concern and understanding mix in her expression, it’s not the first time or probably the last, I stumble up the stairs, parts of my brain that aren’t centred around fatigue are writing down their list of objections to us having a crash now (like I made the decision to do this) when we had so many nice things planned for today. Annoyance and frustration are the irksome backseat drivers, while self-preservation has taken the role of the parent to get me to a comfortable place to lie down and whatsapps my partner the lone word “crash” so he can launch into action like a military operation that’s been run so many times before.
He grabs drinks, blankets, cushions, medication and a myriad of other little things I might need today that I will no longer have the energy to get myself.
My main symptom is fatigue, where all the others have diminished or left to go do something else fatigue has always stayed annoyingly consistent. It’s hard to describe if you haven’t had a fatigue related illness so I don’t know how well I will do here. Like a bone weary tiredness mixed with jetlag and usually accessorising with a headache that could turn into a migraine at a moments notice. Thoughts feel slow and sluggish, everything feels distant and incomprehensible, like I’m listening to a radio show in a language I don’t speak.
When you’ve gone for a while without a fatigue crash you can almost convince yourself you’ll never have one again, because look at you you’re doing so well and you’re eating right, in fact we may have just got better and don’t know it yet.
Disclaimer: You know your Crashes and Flare ups best and can judge the severity of what your going through, this is not a one size fits all list, this was what I felt helped me on a really crap day. If your at the point where you are having to be in a darkened room with no light or sound then this probably won’t help, but just so you know I see you, I hear you and you will get through this.
Step 1: Lie down somewhere with a view
When your head can barely string a thought together let alone look at a screen sometimes looking outside, regardless of the view is better than looking at the wall. I set up in the spare room (aka the library when I finally learn how to make my own cabinets) and at least felt a little closer to nature even when I couldn’t imagine stepping into it.
It’s scientifically backed as well, with the first research paper dating to 1984 where 23 patients recovering from surgery were placed in a ward with a view of a nature setting and 23 were placed with a view of a brick wall. The 23 with the window into nature had shorter postoperative stays and required less potent painkillers compared to their brick window counterparts. So if you can, go look at a tree!
Step 2: Barricade against the head gremlins
Sometimes when your defenses are lowered that’s when the head gremlins decide to attack, they sniff out your weakest point and decide to barrage you with negative self talk. They’re going to shout regardless so build up your barricades of positivity, this is going to be different for everyone so here’s some examples of mine:
- Comfy pyjamas
- Familiar audiobook (Mines usually a Terry Pratchett that I’ve listened to so many times I could probably recite it to you)
- Blankets
- Cat (work with what you have please don’t steal a cat)
- Favourite book/film if you can concentrate on that
Now please understand you won’t magically silence those negative thought projectiles but you can strap some fuzzy armour on to take some of the blows.
Step 3: Take your meds and a nice herbal liquid
If you haven’t already take your damn meds! Don’t wait until you feel worse to get the full benefit, your version of worse is likely to give a 999 operator heart palpitations. So take them while you’ve got the wherewithal and ask for a nice herbal tea for after you have. I went for a Pukka tea – Tumeric, Ginger & Orange, it’s lovely and warming, the smell makes me think of autumn leaves and chill winds.
Step 4: Get outside when you feel you can
Luckily now a days my crashes aren’t as severe as they once were, what once took me out for a week now will only take me out for a day. So gripping that silver lining like a vice I managed to go sit outside before the day had lost all its shine. I couldn’t garden, only sit with my guard dog in a cap and sunglasses, but some days it’s the little wins you take.
If you can, go sit outside, even if it’s just outside your door or just for 5 minutes before you have to steal away back to your little cave. I promise if you can it does help.
So in conclusion, chronic illness sucks! I don’t think there’s a way to end this that will feel remotely satisfying, the crash eventually died down and I crawled out of that black hole as I always manage to do, but there’s no exercise I can do or shake I can drink that will mean it won’t happen again. It seems to grate against what was once my current understanding of the way things should be, your ill for a while and then you recover or you go through physio to claw your way back to normalcy. But my normal changed, yet the back of the mind gremlins still shout “it should not be this way, it’s unfair!” and they’re right it is unfair but then I was never promised fair, I was just promised a life.
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