"My experiences of long Covid"

I would like to share some feedback about my experiences of long Covid and how this has been dealt with by my local GP surgery. As a long term asthmatic, I have had many experiences and interactions with the NHS and I have never had problems in the past. 

When Covid hit, back in March 2020, I knew that the symptoms I was experiencing weren't asthma. 

I have worked in the care sector and, at the time, I was working with a client with autism, whose mum had tested positive for Covid, I started developing symptoms and went up to the PRI Hub. I arrived there and they assessed me. When checking/testing me the GP said, there's no wheeze which should've flagged up to them that I wasn't presenting with asthma. They were offhand with me and sent me away with a flea in my ear. 

I returned home and started to panic. I was using inhalers but I was struggling to breathe. I phoned the surgery and got through to a different GP, who was very good. They prescribed a week's course of an oral steroid but it made no difference. I was given another week's course and that made no difference either. I was lying in bed very frightened, I couldn't see anyone. My wife thought she had lost me on a couple of occasions.  I think my previous experience of asthma means I should have been admitted to hospital for assessment. My symptoms developed during this time and 3 days later I really started burning up and by this time I could hardly move. I felt very frightened. Symptoms began to ease after 10/12 days. It was a horrible experience. 

I have never fully recovered from Covid. I developed a very painful bout of shingles after this. And then fatigue hit me and I have been that way since and experienced many other weird symptoms. I have a lot of bodily pain, in my arms, legs and hands. I am a qualified illustrator and I was on my 3rd book when this hit. I haven't drawn now for 3 years. I used to go into schools and now I can't. I really struggle with the long term effects. I couldn't even manage my part-time job and I had to leave that because the pain in my arms and legs increased too much. I have also lost a 3rd of my lung capacity. And every-so-often I get severe chest pains. Once, after a funeral, they hit me and it felt like I was having a heart-attack. I couldn't move and I was sweating profusely. 

Some days can start well, but can end up rotten. Other days are ok. I can manage if I stay within my energy limits.. 

I did go back to the same GP after developing hand tremors. And I was given medication for that. After this,  I was examined by the same GP. The GP did 3 things here. They raised their voice and asked me. Do you want any treatment? Next they asked me, Are you sure you want treatment' Then they raised their voice again and said Do you really want treatment? I responded I did. I was prescribed Gabapentin to help with the nerve pain. But I really feel this treatment by the GP was bad practice. 

I have avoided this Dr ever since. And I have since dealt with 2 other Drs. One of those Drs told me, very condescendingly, I was just deconditioned. I wonder if this Dr and the initial had spoken as previously I'd had no issues with any member of staff and I was being treated as though I was problematic. 

A 3rd Dr sent me for blood tests on 4 occasions, but typical blood tests don't test for micro-clots. I was contacted by the receptionist after my last bloods and was told the Dr had instructed them to call to say that the tests were clear and I was fine. I did speak to a GP who told me that they didn't know what was wrong with me and then hung up. I avoid them now.

The message I feel I'm getting from the GP is that they don't want anything to do with me. And I don't want anything to do with them either now. I only use the surgery for the repeat prescription line. And I only ever contacted them in the past when I really needed to. I am careful with my health.

From my conversations with health care professionals has indicated that there seems to be some problem with some colleagues willing to accept or acknowledge long Covid as a real condition. We are dealing with an NHS under extreme pressure and unless they know about the condition and are able to treat it, then they came across as having a dismissive attitude towards it. Some staff seem to manage. Others can't. I feel I have encountered those that can't seem to manage. 

All of this has impacted on me feeling able to go to the practice. Now I only use the repeat prescription line at the surgery. I have tried to swap to a different surgery but the rules mean I can't change to a different GP.