Long Covid - Anybody Aware?

Lightfooty

Distinguished Member
I see, still strange why I still have lost sense of smell and taste.
I can't even smell paint thinners or vinegar.
Strong curry's only work by the burning sensation.
Seems a coincidence that covids about and its symptoms are the same.
It should come back. Practice sniffing on some essential oils every day for five minutes, if you have them. Or Vicks vaporub. Your smell memory needs stimulation.
Covid Tests can be hit and miss.
 
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DrapedInDarkness

Distinguished Member
I've completely lost faith in the long covid clinic now, the blood tests were not done properly and need to be redone, still no scans have been booked in and nobody has bothered to reply to me since mid November, I know the booster programme is important but so is the clinic meant to be, but after being referred back in January 2021 absolutely nothing has been done in a year after the initial interviews despite me trsveling up to Reading three times now, which is bloody hard these days.
 

IronGiant

Moderator
Not a personal recommendation but I have seen these recommended:

rose, eucalyptus, cloves and lemon

I gather the important thing is to pick ones that you can remember the smell of, so you sniff them and think "I would/should be smelling x now"
 

joner7777

Well-known Member
Not a personal recommendation but I have seen these recommended:

rose, eucalyptus, cloves and lemon

I gather the important thing is to pick ones that you can remember the smell of, so you sniff them and think "I would/should be smelling x now"
I still have only 50% smell /,taste now. 6 months on.
Tried obas and vicks.
Strange thing is ,all toilet functions smell like burnt rubber !
 
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SteveAWOL

Distinguished Member

 

DrapedInDarkness

Distinguished Member
Had to finally admit I now need help with walking, not everyday but some days now I can barely move while on others I limp like my leg has been badly broken, so now I am the proud owner of a walking stick and a walker.

When does it start to get better?
 

mark6226

Well-known Member
I am currently listening to radio 5 live and they are taking about the fall in pressure on the NHS.
Currently there are over 1m people suffering from long covid. That number will grow significantly over time. Out of that number the vast majority will expect the NHS to try and treat them.

That's going to be over 1m new patients for the NHS.

Could someone please tell me how the NHS will cope with that deluge without cutting the care to patients with other disorders.

Five live seems very reluctant to discuss long covid. The papers I've read also seem to be content to ignore long covid.

As someone who has suffered with a post viral disorder for over 30 years I know how distressing they are. I have had ME since 1988. The NHS has proven totally incapable of offering any coherent and organised support. Just about everyone with a long term serious post viral disorder will tell you a similar story.

Ignoring long covid won't make it go away. A significant amount of sufferers are going to have their lives changed forever. Many will have their life plans totally ruined.

When will long covid actually get some recognition beyond a casual passing reference.

There's currently an incredibly high incidence of long covid.

Empirically, the NHS has one solution to dealing with things they can't medicate away.

They ignore it.

Sadly, Millions of sufferers of long covid are about to have their medical conditions totally ignored.

I doubt that hardly anyone will care less about this unless they are one of the ignored. And they are about to become non-people lost in a health system that just couldn't care less.
 

DrapedInDarkness

Distinguished Member
As someone who has suffered with a post viral disorder for over 30 years I know how distressing they are. I have had ME since 1988. The NHS has proven totally incapable of offering any coherent and organised support. Just about everyone with a long term serious post viral disorder will tell you a similar story.

I'm sorry to ask directly, but how do you cope, I'm struggling and cannot see how it gets better or more manageable at the moment, I cannot imagine thirty years of dealing with it.
 

Lightfooty

Distinguished Member
I am currently listening to radio 5 live and they are taking about the fall in pressure on the NHS.
Currently there are over 1m people suffering from long covid. That number will grow significantly over time. Out of that number the vast majority will expect the NHS to try and treat them.

That's going to be over 1m new patients for the NHS.

Could someone please tell me how the NHS will cope with that deluge without cutting the care to patients with other disorders.

Five live seems very reluctant to discuss long covid. The papers I've read also seem to be content to ignore long covid.

As someone who has suffered with a post viral disorder for over 30 years I know how distressing they are. I have had ME since 1988. The NHS has proven totally incapable of offering any coherent and organised support. Just about everyone with a long term serious post viral disorder will tell you a similar story.

Ignoring long covid won't make it go away. A significant amount of sufferers are going to have their lives changed forever. Many will have their life plans totally ruined.

When will long covid actually get some recognition beyond a casual passing reference.

There's currently an incredibly high incidence of long covid.

Empirically, the NHS has one solution to dealing with things they can't medicate away.

They ignore it.

Sadly, Millions of sufferers of long covid are about to have their medical conditions totally ignored.

I doubt that hardly anyone will care less about this unless they are one of the ignored. And they are about to become non-people lost in a health system that just couldn't care less.
Underrated post.
Although I wouldn’t say the NHS don’t care, I’d say they don’t know how to deal with something that medication or surgery can’t cure.
They can only deal with the symptoms and make them more manageable.
 

IronGiant

Moderator
It may be an over simplification but the NHS don't seem to deal with chronic anything very well. Just look at the number of charities/hospices there are to deal with the terminally ill :(
 

mark6226

Well-known Member
I'm sorry to ask directly, but how do you cope, I'm struggling and cannot see how it gets better or more manageable at the moment, I cannot imagine thirty years of dealing with it.
It takes time to develop coping strategies. Basic things like learning to listen to your body. When it tells you to rest then you rest.
I did join local support groups many years ago and they really helped on many levels.
I have now totally given up on the NHS because thirty years on and nothing has changed. I've tried and tried to access support and failed and failed. I did try again a few years ago as I was in a desperate state with my ME. It was a waste of time. I'm not going to go into the reasons other than say that the NHS do their best not to allow people to access their ME and post viral services. And they still send sufferers to the infectious deceases clinics. It's insulting. I felt so sorry for the last consultant I saw. He was a really decent man. And he's one of top infectious deceases specialists in the UK. The poor chap had to go through useless inventorys that asked ludicrous questions. He almost begged me just to answer. I can remember him saying that he had absolutely no discretion and has to run through the most moronic and irrelevant set of questions. And in the end I hit another brick wall. And gave up.
I've been on both sides of the treatment fence as both a recipient of treatment and a provider.
I can do 12 mile hikes. Yes I'm in constant pain throughout. I often have to almost drag myself up hills as I'm so fatigued and in so much pain. I'm also riddled with arthritis. But what's the alternative!
I am 60 now and keep very fit. I'm planning a book later this year of hikes for people with mobility problems. Hiking for such people can be incredibly hazardous in the UK.
Basically.
Don't give up.
Listen to your body.
I was told I'd never be able to walk than a few yards etc by the NHS. If I'd followed their assessments I'd be completely housebound now. Or worse.
Watch your diet. Avoid processed foods, alcohol, caffeine etc.
We only get one life. So make the best of it.
 

mark6226

Well-known Member
It may be an over simplification but the NHS don't seem to deal with chronic anything very well. Just look at the number of charities/hospices there are to deal with the terminally ill :(
This is so true. Anyone they can't give a pill to or operate on then they really don't want to know.

Sadly, a large number of those with long covid wiill be treated as if they are mentally ill and filled full of anti depressants. The NHS are masters of this kind of treatment.

Also the DWP are virtually refusing the majority of PIP applications that cite long covid.
 
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Lightfooty

Distinguished Member
Long Covid won’t be a one size fits all. ME isn’t either. It affects different people in different ways, awareness of this is key.
 

Trollslayer

Distinguished Member
True and there are chances to learn from other experiences though.
 

Lightfooty

Distinguished Member
Exactly. Support groups help a lot, even if you can’t get to one there’s zoom calls nowadays.
Seek help if you feel you are struggling alone.
 

richp007

Distinguished Member
I'm sorry to ask directly, but how do you cope, I'm struggling and cannot see how it gets better or more manageable at the moment, I cannot imagine thirty years of dealing with it.

Are you on social media?

There are quite a lot of support groups on there, this is one such -




They have networks and groups where people can share their experiences and thoughts. And links to other resources.

The important thing to remember is you're not alone. Far, far from it.
 

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