https://www.medscape.com/viewarticle/post-exertional-malaise-fatiguing-diseases-what-know-avoid-2024a1000ot1?form=fpf
Post-Exertional Symptom Exacerbation is horrid, conventional ‘wisdom’ says that after you have been ill, part of the ‘road to recovery’ is exercise, to Re condition your body, muscles, lungs ect.
Post-Exertional Symptom Exacerbation means that exercise where you push to expand your limits, makes you worse.
It will empty your energy Tank, cause a crash so you ended up in bed for 1 to 2 days, & it can take a week or so to recover to where you were. Sometimes you won’t recover to where you were, it can shrink your tank further each time you have a crash.
Post-Exertional Symptom Exacerbation with #LongCovid means that trying to Push through, is damaging, in the short term & the long term. It’s not just via exercise, using up all your energy in a day doing too many things can also cause a crash.
Which can be an involuntarily nap, & spending the next day in bed.
You end up having to count & calculate the energy cost of everything.
Having to unexpectedly stand for 20mins+ can throw everything off.
Constantly having to stop and sit, so you don’t ‘over do it’ is frustrating. It is more manageable at home, but when out & about it can make you anxious.
Also weather is a factor, cold weather makes the energy tank more sluggish, like a car with a dodgy battery.
It harder to get going, & keeping warm helps, so thermal underwear, even at home. Leaving the house just isn’t an option. Post-Exertional Symptom Exacerbation with #LongCovid is so very life limiting.
Event running was one of my favorite hobbies, from staffing community events to being on the committees of such events.
4 day weekend of 16 hour days on my feet, doing all of the things, was the best fun. Which just is not possible for me now due to #longcovid
Between Post-Exertional Symptom Exacerbation, cognitive fog, & chronic pain, I can’t even do committee work. I am no longer reliable, when it comes to getting tasks done or being at meetings.
So all the activism stuff which brought me so much joy & purpose, I can’t do it.
#LongCovid has robbed me of so much over the last 4 years.
My career, my hobbies, my activism, relationships, my independence. I don’t even have, half the life, I had before.
Everything has to be planned, spontaneous things have to be refused.And another infection will make things worse.
I had a 2nd and it did make my #longcovid worse.
So I still mask, I avoid non ventilated spaces, crowded places.
Attending any event is taking a risk, even if I don’t get covid again,
any viral infection has a horrid impact, or I might over do it & have a crash. #LongCovid has pretty much forced me to be a home body even more than having kids.
But sure my blood work and labs look mostly normal, ‘with in tolerance’ & I don’t look sick or in any way disabled.
And as consultants run out of things to try cos ‘covid is a new & novel virus’ it’s now Psychology & Psychotherapy referrals.
To look at managing the depression & anxiety which is either part of the effects the covid virus has on the brain, (the virus is in all our organs) or due to how life limiting #LongCovid is.
There are days I happy to be alive, to be able to read my comics, enjoy good cup of coffee & be able to make my friends laugh.
There are days where I am miserable as I will never spend the day hiking, or climbing a mountain, or be able to do a March for Choice,
or even clean the damn house. I have had to hire a cleaner.
I have alerts for research & developments for #LongCovid, I am in support groups. But not enough is being done globally, & the HSE is doing sod all.
There are no treatments for the over all condition, bar few very experimental & expensive private ones, in other countries.
And the HSE always wait until treatments are absolutely proven to work for a majority, & at a price point that fits their budget.
So we get desperate & people start trying all manner of supplements & OTC stuff, alt therapies hoping & praying for an improvement.
Because not having any hope will kill you.
And the HSE seems to be where hope goes to die for those of us who have #LongCovid
One group of medical health professionals who were well ahead of the curve, have been physiotherapists.
But too many drs and consultants, still are recommending graded exercise which is damaging to those of use with Post-Exertional Symptom Exacerbation. A good resource on this can be found here
https://longcovid.physio/post-exertional-symptom-exacerbation
The whole site is full of useful information for those of us having to learn to live with and manage Long Covid.
https://longcovid.physio/long-covid-video-series/common-symptoms
