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To COVID 'Long Haulers,' From Someone With Chronic Fatigue

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I can fully empathize with those who are struggling to recover since having COVID-19 and hopefully these cases will bring more research into post-virus illnesses such as CFS/ME — aka chronic fatigue syndrome.

I’ve read that over 60,000 people in the UK who have had COVID are struggling with symptoms that seem to mirror CFS/ME, however I know they won’t yet have that diagnosis provided as its a long process.

I hope that those struggling do get their normal lives back, as I know how mentally and physically challenging it can be. I hold onto hope that normality will return despite my symptoms being two years in and my health continuously deteriorating.

Will we find out what causes CFS/ME?

Will these COVID cases give us more answers?

Will there be treatments available to help us live a fairly normal life?

Will there be more awareness of CFS compared to general tiredness?

These are questions running through so many of our heads.

I know mine is likely triggered by my glandular fever in 2015, and then made worse by my four major bowel operations in 2017/2018.

Will I now find out why others have recovered but I’m still struggling?

All I get told is that there’s nothing that can be done to improve my health. Which is frustrating. Being 28 years old and unable to get out of bed most days is soul destroying. I was in a successful career, was newly wed, had recently moved into our forever family home and was planning to have children. It’s heartbreaking knowing you aren’t well enough to look after yourself so you can’t bring children into the world, which you have always dreamt of. You feel like you are constantly letting your loved ones down. Delaying their dreams or even when cancelling on plans.

Having a form of treatment would give us hope of having a bit of normality back. I would love to be able to get out of bed most days and just do simple tasks like going to the toilet without help or even doing housework and going shopping without worrying what effect it will have on me. I’ve been called lazy on so many occasions because I will sleep days on end. I worked hard to get where I was prior to my ill health so these comments upset me. I don’t choose to be unable to work. I don’t choose to be on benefits. I’d choose to be back at work any day but unfortunately that’s not a choice I have.

I’ve forgotten what it feels like to live a normal life and I know I’m not the only one. So many people don’t understand what fatigue feels like. Why don’t you just have a nap? Why don’t you just push through it? Why don’t you go to bed earlier? I wish it was just that easy. I’d love to just feel tiredness again. Fatigue is another level.

My naps turn into hours and I still don’t have energy after them. If I push through it I can suffer for weeks afterwards or even collapse. No matter what time I sleep, I still wake up feeling like I haven’t slept for weeks. On my good days, what little energy I have burns out easily. I’d love to be able to go about a full day of tasks without needing to rest in between.

If I have an event planned I have to rest for a week or so to build up enough energy to manage it, but there’s times I still have to cancel. I’m grateful for adrenalin because that pulls me through until I crash for weeks afterwards. A smile can hide your struggle so easily. You’ll see me sitting down a lot as a way to gain some energy back.

For anyone reading this who is still struggling after COVID, please know you are not alone. There are numerous support groups out there with people who can relate. You don’t have to feel alone. My inbox is always open too. There are success stories so I truly hope you pull through.

Sending lots of strength your way.

Follow this journey on Making the Invisible Visible.

Originally published: December 9, 2020
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