I was in tears after the painter came a couple of days ago to inform Flora and I that our units will be painted on the inside next week. It all seems too much - having to get everything off the walls and windows and shelves and out of furniture (eg. the large glass display cabinet) that has to be moved before next Wednesday. Anything that I don't want wrecked ideally should be gotten out of the way and most of the gear that has to be moved or removed also needs dusting, cleaning, de-spidering. Consequently, I have been pushing myself to do what I can. Unfortunately that also means that I won't have any energy left over for healing. Life is just an endurance but I am lucky compared to some.
On Sunday Emily Collinridge, author of The Essential Severe ME Handbook died and the news has cast another black mood over the ME and CFS communities. Other than ME, I have never heard of an illness so painful and so neurologically damaging that life itself feels like death for decades. How do bodies survive this kind of punishment yet remain alive despite the woeful treatment the medical profession provides? The medical neglect and "head-in-the-sand" attitude by the very people who you would reach out towards for help has to be the most frightening aspect. My latest rheumatologist says that ME does not exist and that symptoms can be explained by some other condition (which is never diagnosed). Consequently he is looking for something else but so far the tests have failed to reveal anything abnormal.
I have received an appointment with a public hospital specialist - a gastroenterologist named Van de Bogarde - and it is scheduled for the afternoon of my birthday. I must change that.