Anyone else caring for someone with long haul covid?

[Galaxxy]

As title! DP suffering dreadful post viral effects of COVID. The range of weird and debilitating symptoms are insane, ranging from being completely wiped out with fatigue to the point he can't even watch TV as its over stimulating, insomnia, tinnitus, breathing problems to name but a few. This had been going on since early March and the GP is less than helpful. Prior to this we would spend most weekends hiking, surfing, swimming and cycling. He now cannot walk further than the end of the road. It's really really hard, no one gets it, and I'm somewhat cracking up from the strain of not being able to really help at all. We can't even really chat properly because long conversations are so draining as the fatigue is so extreme. It's very difficult with the DC and I have to take them out constantly and it's had a massive effect on their home life. DP is doing everything he possibly can to help himself from diet, gentle yoga, supplements, alternative therapies, following all medical advice (which has been shit tbh). I don't know why I'm posting really. I have no one irl really to talk to about it as everyone has their own problems atm and I feel really alone. Our whole world changed overnight

I'm so sorry others are going through this too, but also reassuring that we're not alone. I think my anguish has come from a realisation that he may not get better. He's shown no improvement at all in SIX months, despite doing everything 'right' from rest and pacing to supplements etc. I don't feel supported by the medical world who seem to have no idea that even a trip to the GP is like a week long planning event to prevent worsening symptoms. The timing has to be right, we literally hope and pray its a 'good' day when he needs to go, have to factor in every possible thing to make it go smoothly. Its been a sudden dawning that omg this is life now. It all feels so bleak. This time last year we were on a cycling holiday and were planning another. Everything is crumbling. I know I sound negative. I haven't been so far. I've been so proactive and accepting, I've read, researched, advocated, helped, managed, the whole hog. I don't know how to look after myself - there's no time. There's literally no time. And I'm only working PT at the moment and kids not in school. September is virtually days away. How will I cope? I feel bleak and I hate how selfish I sound here but I can't help it.

Gabriella apologies, I was on the defensive yesterday. I think I'm just accustomed to people's instant reaction being disbelief or dismissal.

mittens I'm so happy you're on the mend! It gives me such hope to read about people beginning to recover.

Galaxxy it's really tough. Ill health can just strike any of us at any time. And the impact is felt by the whole family. ME/CFS/ post Viral syndrome is one of the hardest things to have as nobody really understands it or how to treat it and there is almost no research about it either which is very unfair considering there are 250,000 sufferers in the UK (and thousands more Covid patients are likely to join them).

I think you need to hang on to hope that your DH will make progress and eventually recover his previous good health. I think seeking support from others in the same boat is a really good idea as most GPs have no idea about post viral symptoms and how to help them, in fact the majority are uneducated on this (not included in NHS training) and/or uninterested or even dismissive and the current NICE guidance on graded exercise therapy is considered by many sufferers to cause permanent damage to individuals.

To make things worse it's extremely difficult to qualify for financial benefits from the DWP even when sufferers are very clearly unable to work. Long COVID is getting way more publicity and funding already than ME/CFS has ever had, so I am hopeful that this may result in some useful treatments.

You will find a way through this.

Sympathies all all suffering with this, its terrible. A friend of mine is in the same situation and has lost her sense of smell and taste.

Interesting article here

www.theatlantic.com/health/archive/2020/08/long-haulers-covid-19-recognition-support-groups-symptoms/615382/

Average sufferer in US appears to be middleaged women. Have to say I'm afraid of longCovid.