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"My life completely changing due to long covid. My hell."

About: NHS Lanarkshire / Long Covid Rehabilitation

(as a service user),

Before covid I have martial arts schools all over and motorcycle riding schools. Biker cafe and a motorcycle garage. I wrote articles for motorcycle magazines and was as sharp and fit as could be. Then covid came and my partner and I got it. Both hospitalised but not really bad. I have diabetes but it was very controlled. 

After we were distracted I just got worse and worse with long covid. Lost everything. All my businesses and spent almost all my time in bed. Brain fog, memory, mouth sores, smell hasn’t completely come back, can’t swallow, my voice is different, my voice disappears but when I shout the noise comes out. Lungs are not good, can’t get up the stairs now and was a Grand Master! Heart races. Joints, balance, dizzy, sweating all the time. Shaking, Sick, so so tired, can’t move most of the time, my body feels Traumatised. Like I was taken apart and put back together wrongly,  feeling of dread and confusion, Thrush that just won’t go away. It’s been almost 3 years of constant thrush.  Pain in head, puzzled feeling. My Perception is sometimes all over the place. I can’t sleep then I go into a coma. Muscle spasms, twitches. You can only imagine how depressed I am and how useless and scared I feel sometimes. 

The doctors have been great. I also put on about 5 stone almost overnight. My diabetes went crazy out of control and no matter how much insulin I took my blood sugar was still sky high. I now take over 40 tablets a day, 3 to 4 injections a day and 3 inhalers a day. My diabetes it now under control after about 2 years, they found the insulin wasn’t working so I now take a hormone jag to make it work. 

My life has been totally ruined. Going from being so active to being stuck in bed has been so hard not just on me but on my family. The Covid Team psychologist was great. And the physio tried their best. I struggle to look to the future, but I do try. I still have very dark places but I need to believe that things will get better. If I didn’t have all my dogs to stay in bed with me all day I would have ended it or gone completely mad. 

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Responses

Response from Abi Campbell, Clinical Service Lead - Covid Rehab Team, NHS Lanarkshire 2 years ago
Abi Campbell
Clinical Service Lead - Covid Rehab Team,
NHS Lanarkshire
Submitted on 18/05/2023 at 11:01
Published on Care Opinion at 11:01


picture of Abi Campbell

Dear Trieda825,

Thank you for sharing your experience of Long Covid with us - it makes for hard reading and I'm so sorry that this has happened to you.

It is so clear from your description how devastating it has been for you, on many different levels. You describe very well how hard recovery can be with Long Covid, where returning to 'normal' may not be possible - and how that makes it difficult to have hope. I can really see the daily fight you have to undertake to keep that hope.

Your experience of the impact of Long Covid is what motivates the Covid Rehab Team every day. I'm glad the doctors and our team have been able to offer you support and encourage you to stay connected with us - I will pass on your kind words to them. I hope for the day that more treatments options are available. Locally and nationally, we have networks that help us stay on top of (and contribute to) the latest research and best practice in managing Long Covid.

Please don't stop sharing your story as it is a powerful message of the need to pursue this relentlessly.

Many thanks,

Abi

ps. Thank God for dogs! They really are a man's best friend

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful

Update posted by Trieda825 (a service user)

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