Twenty-four hours after my wonderful trip to Bönigen, I see the same picture of post-neuroimmune exhaustion again (PENIS). It's not about fatigue or general weakness, but palpable inflammation in the brain/brainstem coupled with high blood pressure. Now my ice packs are used. They seem to cool down the brainstem a bit.
I can say from experience, that my PENE pattern has changed constantly over the years. Currently my ME is more dynamic than before. I can bark higher than 2017/18/19/20, but at the same time the crash is associated with an increasingly worse cerebral adrenergic blood pressure problem …. this has been a problem with my ME for decades, resp. possibly even in my earliest constitution: I can't break down adrenaline or only slowly. At the same time I live from it.
I don't count, that I can still solve this problem.
It sure is madness, to make a half-day trip as a moderate ME sufferer and to walk 1.40 hours.
But I've lost my patience, to 26 years ME, 7 years difficult, to continue to adhere to strict lying discipline.
Of course it would be different, if I could be a rest cure guest somewhere on a magic mountain among nothing but other sick decadents. Of course, we also have such spa houses here. You are deeply conservative, so, as if illness itself were something deeply bureaucratic. Health resorts for the super-rich on hygiene and discipline (call themselves e.g. curativa or holistica!!!!), who could certainly copy something from the Magic Mountain Clinic. Zb.: that the chronically ill and even the dying want to have fun!
My idea for a clinic: a simple house, moderate prices, as few therapies as possible, preferably none, simple fare, loaf, legumes, fruit, ev. a therapist or two to talk to, spatial comfort, bit of heat and much more. fresh air and beautiful surroundings. That would be affordable quality for those seriously ill for years, who do not want to spend several thousand francs on a hay flower wrap ….. lol.
These therapeutic spa offerings these days in the mountains are like 5***** Hotels. And there is a compulsion, not only to be read from countless menus, but also to put together a therapy regimen, so that the stay meets the cost-benefit ratio. I have serious suspicions, that these offers do not serve the sick, but that someone else fills their wallet with it.
Immundadsorption, currently still one of the few available, ev. helpful therapies in ME, however, remains unaffordable. Or it is refused by doctors because of a lack of knowledge and study results.
This is what it looks like. Since 5, 10. 15, 20, 30, 40, 50, 60, 70, 80 …. years of ME/CFS research
treasure with 4 to 5 Days, until the adrenaline wears off, a crash then follows…then like this 2 It may go up again for weeks
