ME Awareness: Coronavirus and ME by Rebecca Smith | 07 May 2020

May 7, 2020

Coronavirus and ME By Rebecca Smith.

I was diagnosed with M.E. in 2015, but I wanted to talk about my Covid-19 experience in the hope it would raise awareness with people.

Mid-March I started to have a dry cough. I was fine at first, but I soon felt it really take hold of my lungs. Burning pain and a tight chest were the main symptoms with a bit of wheezing.

One of the most concerning symptoms of Covid-19 infection is the effect it has on the lungs and associated breathing difficulties.

I also felt extra tired, achy and flu-like. I went very up and down for about 2 ½ weeks and tried to work from home on several occasions but it made me feel worse. 

I do have an underlying health condition, myalgic encephalomyelitis/encephalopathy, but I am one of the lucky ones and it was considered mild. I have still been able to manage light tasks and to work three days a week since my diagnosis. 

The medical people I have spoken with have been lovely but have not really been able to help me with the Covid infection.

At one point 111 called out paramedics for me but the paramedic team said because I could talk a sentence at a time, despite being extremely breathless they couldn’t send an ambulance and asked if I could get to hospital myself. At a 2-3 mile walk I said there was no way I could but was told that would be the only way I would be seen. 

I had to stay in bed and not move or talk to get my breathing back under some sort of control and hope for the best. 

Three weeks into it and most of the other Covid symptoms passed – except the most worrying ones. My chest was still painful, and I got out of breath just walking to the bathroom.

If I did a bit of housework I ended up having what I called a breathing attack where I could not breathe well and felt externally faint. My M.E. symptoms also got a lot worse.

Download the latest ME Association updates on Covid-19, PVFS and ME/CFS.

The fatigue was unbearable on days when I was getting payback from things I could do easily before. My arms hurt when washing my hair, my body was weak and shaky, and my brain fog and memory was terrible.

I have already taken lots of time off work and can’t see how I am going to be better for a while. It terrifies me that this virus might have permanently made my M.E. worse.

I have spoken to 111 several more times as my chest was worse especially the burning and pain but have been told to stay in bed for 1-2 more weeks and even minimise talking if necessary.

They said there is nothing much they can do apart from prescribe me pain meds for the chest pain and make sure I stay in bed as they don’t know much about what works yet. 

I was scared when my breathing was getting worse. I was told I won’t be given any ambulance help unless my breathing became so bad that I couldn’t speak, or that I am in cardiac arrest. I can’t see any doctors and I am missing weeks of work at a crucial time. 

Four weeks in and my lungs are slowly getting a bit better but doing most things makes me more breathless and gives me a burning feeling. It is worse first thing in morning and last thing at night. 

The worst thing right now is trying to work out how to deal with my M.E. symptoms that have dramatically worsened. I hope my lungs do eventually recover. 

I just have my fingers crossed I improve soon and can get on with the luxury of being bored at home like everyone else!

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Image credit: 123RF/Kateryna Kon

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