Long Covid, raft of symptoms yet no answers and no support

The only uplift I've had from long covid, was seeing someone else write about their experiences, and I was like, 'finally! someone else knows!' So I'm going to write my experiences and frustrations too, add them to the pile of stuff that's 'out there.'

Since I got covid 4 months ago, I've never been right. I describe it as 'good days' and 'bad days'. For the first couple of months, I would swing between days of heavy-limbed tiredness, irritability, intense thirst and hunger, random headaches that can last all day... aand 'good days' where I was fairly symptom free.

Toward the end of month 3, I had a week, one week of 'good days' and it reminded me what it's like to be me! That shot of regular life feeling was enough for me to really see the difference, it's like night and day. That week of good days was followed by two weeks of bad days, now there's barely a break in the clouds, and I gotta say the symptoms are getting worse.

I'm 49, but through looks/energy/vibe, I've often been taken for being in my mid thirties. Now I feel like I'm in my frakkin' 60s ><

My GP won't actually see me, because they're only taking emergency appointments, and have been for two years now. I called 111, and got a callback from a doctor, who easily diagnosed long covid, only to say I had to get a referral from my GP to the Long Covid Clinic.... which, ofc, I cannot do because my own GP won't take that kind of appointment.

At my work, I asked for a reduction in hours. I worked a lot before, 40-50 hours per week... now it's more like 30-40 per week. But I'm still struggling. i asked for a further hours reduction, but I can't get it. At every level, they say dumb things: My manager, 'you sound like you want to leave.' Her boss: '40 hours goes with your job title, we've done all we can.' His boss, 'yes, let's get you to your GP to see if you're fit for work,' .... well.. that's something else I can't do >< ... aaaand, her boss from Head Office, 'things will seem better when the summer sun comes out.'

I'm trying to cut down eeeevertying that takes effort, so that I can make it through these days, sometimes spending my whole weekend in bed, sleeping/napping/dozing... for the simple reason, that I can't move! I can sit in a chair, but it's .. head tips back, muslces are heavy, there's nothing I can do.... so I end up going back to bed! I arranged with my laundrette to deliver/pick up washing loads, so that I don't have to. The manager of the laundrette was interested in why I wanted this, and I told him about the long covid. He gave me a doubtful look.

I'm draggging myself thru these days. I expected every day.. every week... that this would just clear up... I understand that people have reported 6 months or more, I get that its a marathon. But 4 months in, and the symptoms are getting worse. Now I'm hearing there are lots of people who have had this one or two years, and we dont know if the effects are lifelong in some cases, because we've only got two years of examples to go on.

I climb stairs every Friday morning, I work in a three storey building just on that particular day. Just as I get to the top, I cough, I always do, and I'm coughing up phlem. Proper, yellow/infected level of stuff is coming up. It's the only time I cough powerfully enough to bring stuff up from my lungs... but every week, without fail, I'm getting this sign of infection from my lungs! What is that about!? How can I have a live infection, week after week like that?

There's always an extra drain on my system, I can feel it, adding weight to my limbs, tightening my chest, making my breath and body labour over simply walking, or any kind of activity that was once so easy that the effects of it wouldn't even register on my awareness. Now they leave me worn out.

Even on good days, I'm massively conscious not to overdo things. I've tried exercise to get my body toward fitness quicker, but it takes an entire week to recover from that. Good day + too much activity = loooong string of bad days afterwards.

It's almost intolerable, and yet everyone reacts with shrugs or disbelief. I'm glad there's something of a community for this, damn, finally sane responses!

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