The Adventure That is on No-one’s Bucket List: My Life with Long Covid 

I woke up at 02:02:02 on 02/02/2020 and thought it was a sign that I would have my best year ever!   That was the most spectacularly incorrect premonition ever recorded …. 

I have approximately 500 – 800 words to try convey the astronomical ramifications Long Covid has had on my life, seems paltry in comparison, but I’ll give it a go.  

My life previously was incredible, I lived in 12 countries, travelled to more than 40, ride motorbikes, have a scuba licence, ride horses, fail at surfing every-single-time, can kayak, have sky dived, white water rafted, raised £50k + for charities, rode London to Paris, renovated my house, moved house several times, cleaned the house, moved jobs, got qualifications, went on holiday, dated, met up with friends, walked my dog, went food shopping, cooked meals, washed my teeth, turned over in bed,  got out of bed ….. breathed, all without a second thought.  

Then I got Covid – twice – working the front line. I experienced approximately 25-30 of widely reported symptoms, several of which are now permanent, including ‘The Fatigue’. 

The word ‘fatigue’ is misleading, it casually suggests that you can recuperate with some sleep or rest, that ‘tomorrow is another day’, that with time, you’ll be back to full pre-covid-strength, and this will be an amusing anecdote to tell your friends over burnt marshmallows, around a campfire. What this word does not reveal to the ‘uninitiated’, is the absolute terror when you realise that your new ‘norm’ means that every-single-thing you took for granted in your old, now distant memory of a life, has been obliterated, actually, ‘you’ have been obliterated.  

If someone had told me I would have to micro-manage my day emphatically to include rest periods – wake up (rest), sit up (rest), get out of bed (rest), walk to the toilet (rest), lift the toilet seat (rest) … and your progress will be excruciatingly slow – like starting again with a grain of sand in the Never Ending Story (apologies to those who don’t get the reference), except without any magic, wishes, princesses, medical knowledge, medication…. or any specifically tailored advice – “You’ve simply got a wing and prayer, my child … oh, but we’re taking your wing and…eh… the prayer too, because …. they are probably infected”. – I would have scoffed. Me, healthy, fit me – needing to rest? Barely able to stay awake for more than a couple of hours?  Pahhh…. This will not be my life, because I can push through that and get well again. “Ahhhh, ooooppppps” they say, “You can’t do that because you will get post exertion malaise and then take massive steps backwards”. “In fact, your whole life will be turned upside down financially, physically, psychologically, emotionally, you will experience discrimination and to a certain extent, a lack of organisational empathy from your employers, which, FYI are all subheadings when describing abuse”. 

There is a vague light at the end of my tunnel (though I really hope it is not the Devil playing hooky and smoking a cigarette, thus luring me into a false sense of ‘light’ security) and that is my unwavering stubbornness, which has been a huge hinderance in the past, but these days stops me quitting altogether. As my blog title suggests, I am all about the adventure so, I have flipped my view on this enforced curtailment of being, by creating my own physical & cognitive rehabilitation plan, accepted all help offered, begrudgingly embraced temperance and I get up every day, look in the mirror and tell myself I will not allow Long Covid to define me as person anymore, I write my own narrative, and create my own adventures (with rest periods included) …. 

I have a ‘new me’ on the horizon, it is just going to take a bit more effort …and time…. 

 My take home messages are pretty simple:  

NHS Managers – have empathy, consideration and remember you have a duty of care to look after all staff, your bottom line should never be about the logistics. 

The Government – STEP UP – help the people impacted by Long Covid to access PIP, benefits, and other help; make it easy for them and not have the system so convoluted that people who genuinely need assistance become so exasperated they quit … because rock bottom isn’t that far.  

Family and Friends – try not to make ‘alternative suggestions’ to sufferers, our medical teams are quite capable of ruling out differential diagnoses (it is kind of their job) and if they take a bit of extra time to do my makeup and my hair that day, then please do not say “…Well, you look ok….” which could be misconstrued as an accusation that somehow you cannot look well and be ill at the same time. Otherwise, always ask them out for coffee (and cake) … and you pay …. because they have money no more!  

Blog written by Treasa Kearney

Author: Alison Twycross PhD RN

Chair - Supporting Healthcare Heroes UK; Editor-in-Chief - Evidence Based Nursing; Former Deputy Dean and Professor of Children’s Nursing

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