So far, the hamstery is running on the pure good will of my family. Particularly my husband.
I see more and more news on long covid which is great as it means that things might get done. To date I’ve seen no one specifically for my long covid other than my GP who, try and she might, cannot find a place for me to go. Support groups such as the one in the image are invaluable. If you suffer from long covid please follow them for news and google your local support group.
Complicating matters is my recent diagnosis of chronic thromboembolic disease. This relatively rare disease occurs when the body does not aborb blood clots, usually in the pulmonary blood vessels. My two large friends, nicknames Bill and Ben, are still with me and apparently here for good. I may have medication options but have no idea if Long Covid makes me a good candidate for surgery.
I’m waiting on the specialist Pulmonary Hypertension Service to get back to me with, hopefully, some more info. My respiratory consultant was, as usual, a bit too brief and I’ve had to do my own research (as usual) as to what this actually means for me. I had hoped the cardiologist might be more illuminating but instead she too ignored my long covid and suggested graded exercise might be a way forward.! When I reminded her of , ya know, crippling fatigue she almost…..almost….. shrugged. And visibly seemed to either a) be confused or b) not care. It was hard to tell which to be honest.
I feel very sorry for all you M.E/CFS and fibromyalgia peeps who’ve had to put up with this sort of thing for decades.
So, the consultants think my long covid isn’t a thing worth discussing, my GP is trapped between me and them, and I’m transformed. From a bright and lively 40 year old juggling two jobs (one full time), the hamstery, voluntary work, walking three dogs and hiking in my spare time to …. this.
The official reply seems to be ‘well just go exercise then’. Laughably and woefully inadequate. This month NICE changed it’s guidelines on graded exercise as it has been proven to do more harm that good, promoting ‘crash and burn’.
So far my list of changes are:-
Now moderately bad asthma instead of really mid
Super allergic to everything
Exhausted by both physical and mental exertion
Cognitive dysfunction – I feel stupid and like I’ve got early dementia
Clotting – As above
IBS – used to be unidentified dyspepsia that varied in intensity
Acid reflux – now really quite bad
Vision – Blurry half the day, as if I’m not wearing my glasses at all
New type of migraine – Used to only have optical migraine with aura. Now have this weird beast of a migraine that sneaks up unannounced and takes out my whole skull, neck and shoulders
What I am not – Deconditioned, weak, frail or elderly. I’m still doing physical activity because otherwise the hamstery would have to shut. but I’m pacing this around other strenuous tasks like getting dressed. I just can’t walk far from the house and not far enough to commute to a job, and I can’t do more than 20 minutes of exertion at once. I doubt an employer will let me work from home for 20 mins a day…….
I have taken up yoga and meditation. Kinda. I need to grow more patience with myself and start to accept that getting back to work is just not going to happen for a while. I’ve now got a wheelchair so at least I can go see places further away that the end of my road (assuming someone pushes me). Luckily my husband is a competent wheelchair pusher lol
It is my hope that the hamstery will live long and prosper into 2021 and that I’ll recover from the long covid symptoms at least. Crossing all my fingers!