Admitting how bad long covid can be

[TurquoiseBeach]

If you have long covid, how vocal are you about it? Do you put plans off - even simple play dates for your kids, hoping energy might be ok in a couple of weeks? Do you tell people the real reason? Do work know how much harder it is to concentrate? Do clients know? If you freelance, have you cut hours, whilst telling them you have other work on? Have you quit work? Do you get scared at how long it's going on for? How many people really know? How many days are you wiped out for if you do normal stuff? Do you feel like you're in limbo? Have you gained weight from not being able to exercise like previously / not having energy to cook as healthily as before? Has your house gone to pot? Is your partner supportive? Do you feel guilty for not being the parent/partner you were?

I'm sorry to read that @notyourmam

You sound really affected much worse than me. It's so random and awful.

forums.phoenixrising.me/threads/part-3-the-missing-voices-speak-up-in-mexico.89000/

Please make sure your GP has it on your "coded record" if you have long covid. It's the only way they will be able to count us.

It sucks.

I went to my Gp appointment on Saturday, he made me feel really awkward like I was making things up. Fortunately, my blood tests prove I still have Covid in my system.
So I’m explaining about my dizziness and fatigue amongst other things and he start quizzing me about my family’s social situation!
I told him I work and so does DH, he then ask’s if I have children I say I have and they are grown up. He then asks what do they do , do they work? I said yes and he wants to know what they do!
I thought to myself, he’s checking to see if we’re a family of benefit scroungers ! Seriously!
He didn’t answer any of questions regarding dizziness, just said he hadn’t seen anyone with Long Covid and didn’t know much about it.
I replied “ oh that’s unusual as all your colleagues I’ve spoken to say it’s really common “
He gave a sick certificate for 3 months ( not complaining)and told me to go and rest.
I thought his attitude was a bit weird, what are your thoughts?

@Furcoatandnoknickerz I think his attitude is really strange. I have had five appointments in the eight weeks I have been poorly and I had a chest x-ray on the third week. I have another appointment on Thursday already booked in as my joints have all been affected and are absolutely agony. Painkillers do not touch it so I could do with something industrial strength. I am absolutely exhausted and can't do very much which I am finding hard going.

@Furcoatandnoknickerz many patients who have had covid have ended up with low B12, low vitamin D and some with diabetes when they weren’t previously diabetic. Low B12 can definitely cause dizziness.

When you say your blood test proved you still had covid in your system,
can you enlighten me, what test was that and was it a hospital request?

It would be worth asking the surgery exactly what bloods you’ve had recently so you can see if they tested B12/Folate/ferritin/Vitamin D. Any bloods in the low end of normal range can leave you feeling symptomatic, normal isn’t the same as optimal. Your dr did have an odd attitude, strange to quiz what your family do.

@HuntingHappiness I had full bloods tested, my b12, blood sugar, cholesterol, you name it was tested, vitamin D ( take supplements) are all good levels.

Ive had Gp explain all the results to me.
It’s kidney and liver function that were abnormal. The serum from liver function shows inflammation, the inflammation in the blood / liver shows a problem with the immune system, which could be anything. As I was still having post Covid symptoms, after Covid, the deduction is I still have particles of virus in my blood which is so minuscule but enough for the immune system to carry on fighting. Blood goes to the brain, hence dizziness and poor concentration…..Covid brain! Hence ongoing symptoms, especially fatigue.That’s a simplistic explanation

The conclusion is, no further action.😢

The problem is , as it’s all very new nobody really how long it will go on for.

@Furcoatandnoknickerz Hello have you been referred to the Hope For Long Covid programme? I found it super helpful. You might be able to self refer.

@avocadoandchill Hi, yes it has been mentioned, but I have to be past the 12 weeks mark.

What is definition of long COVID? I ask as I am only 6 weeks in but still have cough and chest pain (really painful) and general tiredness but not like you describe on this thread. I did have cognitive issues - struggled to form sentences in my head but that seems better now.

I have doc appointment tomorrow but my focus is the chest pain which is debilitating. He says it's muscle strain from all coughing. It could be but it's is so painful at times.

@Jewel1968 from what medical professionals have told me it’s when all the debilitating symptoms last longer than 12 weeks. Up until then is still classed as normal recovery time.

@Furcoatandnoknickerz thanks. That makes sense.

I’ve found my people!

So shit being so ill - yet also no one realises how terrible things actually are!

too tired to read at the mo but will come back when I can.

Ah didnt realise you weren't past 12 weeks. I would definitely sign up for it if you get to that stage. Some of it seems obvious but it's an at your own pace do what you find helpful thing. There was a whole session with a professor who studies long covid and he suggested all sorts of vitamins to try. I've found vitamin c, magnesium and an antihistamine helped me.

Also rather oddly I found catching covid again but really taking my time to recover from the 2nd lot seemed to help. It might have been coincidence though.

Its never really been called POTs for me, just ‘long Covid’ but I have POTs symptoms and have been on POTs meds under a cardiologist for a year now. I first got Covid in 2020, and have had Covid a few times since then which causes relapses of several weeks.

I have absolute sympathy for everyone on the thread struggling with their health. Do we still have a long running Covid support thread on here? There was the Covid lungs series of threads but I kept getting ill and not keeping up with those.

I only work part time but am seriously considering stopping it and just dealing with the financial fall out once my savings run out because the stress of working in my demanding job makes me ill by the end of the week every week and then I have the stress and guilt of not working or being present in my family life due to illness.

Stress and exhaustion/recovery time has a knock on on family life, I can’t parent well. I’ve given up on any kind of social life. I have to ration out my non-work time to be able to continue working and I feel very guilty that everything else has to take second place to work.

I know other people have it much much worse- I have a friend who has long Covid and can barely leave her bed, so in lots of ways I feel very lucky.

@TurquoiseBeach i had to give up work and all my hard won clients I was gutted but I left it so long - far too late - that I almost stopped caring. I had about 18 months of virtually zero work and I have improved. Enough to function as a Mum, a bit. Enough to work PT.

Like many of you I still can’t walk anywhere, nor at any speed. I need a scooter but I just can’t bring myself to do it. I’m too embarrassed for people to know what a total mess I’m in. It’s not like it’s my fault but I feel sort of responsible for not having gotten better when do many others have. @Rae36 yep destroyed fitness is an accurate term…

@Furcoatandnoknickerz I am sorry your your GP was such an uneducated knob, you didn’t deserve that.

ive had everything tested -at my request!- and iron and folic acid was a significant help, B12 shots did nothing, levothyroxine adjusted, melatonin didn’t improve sleep long term. After Xmas I may try LDN. I know someone who is doing better on this plus antihistamines. AHs did nothing for me except make me more tired…

Keep meaning to read the Gez MEDINGER book on LC but not got around to it.

Carnitine - I tried that but not convinced I was taking enough … I may go back to that…

I tick pretty much all of the points in your first post. Am self-employed and had to hand several clients to a competitor as I felt wiped out for a couple of months. I got long Covid in March 2020 just before the first lockdown. It's interesting to see thyroid mentioned here as I was diagnosed with underactive thyroid this time last year and am convinced it was the virus that had affected my thyroid, as it had my lungs and brain. I am slowly getting better, slowly getting more energy. But I do sometimes wonder if I'll ever walk for a couple of hours in the country or around London as I used to. It's hills that do me in! I can do a 20 minute online yoga session now that I couldn't a few months back. Incidentally I found a ten-minute Yoga for Thyroid vid on YouTube which really helps kick your thyroid into action. I fall asleep at about 8pm some nights. I recommend pacing yourself - if I do something like meet a friend for lunch I have a lie down after. Today I've done some dusting in the house! Small steps!

And no, I don't tell people any more, unless I have to. It's boring for me and they don't understand, because I seem normal.