One of the saddest things about being in #LongCovid support groups, is new people who join who have gotten the condition in the last 6-9months, hopefully looking for a cure or treatment to get back to living their life.
They are frequently shocked to find there are no treatment protocols for #LongCovid approved by the HSE. All the clinics do is offer referrals to treat post covid consultations & symptoms.
We don’t even have the basics the NHS has about trying antihistamines.
When all the post covid conditions have been catalogued, & somewhat medicated, there is nothing for the crippling fatigue & brain fog. For for the condition of #LongCovid it’s self.
None of the research being done in other countries about MCAS or microclots or viral debris, has been accepted here.
So they then want to know what supplements people are on or have tired, as Dr’s won’t talk abut or recommend them.
But while some of them may help, a small bit, none of them touch the chronic nature for #LongCovid
The latest thing we are now being told is, that our immune system is not behaving cos we are stressed, to quit #LongCovid support groups & try just to get on with our lives.
To be mindful, & work to get our parasympathetic nervous system to chill. So pretty much blaming us for our condition.
There are also people who are confused & then angry that they have gotten #LongCovid when they have been vaccinated, and if there is a vaccine, why isn’t there effective treatment.
They go through the entire cycle of grief. Which I know I am still in about how #LongCovid as restricted my life. I cant work, I have chronic pain, chronic fatigue, 7 new medical conditions I am on medications for and cost me a significant romantic relationship.
I understand their hope, hurt, disappointment and anger.
We need better led #LongCovid clinics, many infectious disease consultants do not want to be dealing with Long Covid.
And the HSE has to stop looking for the lowest cost ‘treatment’ for #LongCovid and the Dept of Social welfare keep not approving people for invalidity or disability payments.
Every time you get covid there is an increased risk you will develop #LongCovid even if vaccinated, many people new to the support groups were completely unaware of this & feel public health messaging let them down.
We are being ignored, written off, blamed, and gaslight about having the chronic condition with is #LongCovid.
At least 1 was 45 when I got it 3 years ago, I had lived some what of my life, unlike those in their 20s and the kids who have #LongCovid.
Right I am off to take my evening meds and extra pain killers cos this weather makes both the chronic pain and chronic fatigue harder to deal with.