thefrogman:

A lot of people have been sending me links to articles about a recent development in CFS research. Basically it is believed CFS is caused by a retrovirus reactivating and that antiviral treatments may help those afflicted.

I don’t know why this is getting so much attention at this point in…

Some very important research, also recent finding in Fibro patients reaction to cold. I really hope these studies are repeated and in other populations to see what has been overlooked in the past. 

Also, yeah, the best treatments for RA are in the $1000 a week range. Which in NZ meant I waited 9 years for one (which made me allergic to the sun- really to the point of skin bleeding) then because that failed another.. year(?) for the other. And now finally I may meet criteria for an infusion. Which is the last resort. 

Given the hurdles to get to this drug (monoclonal antibodies to destroy B cells, oy!) it might mean people understand that these are not handed out wily nilly. But it doesn’t 🙁 I too still get the “live a healthy lifestyle” advice which hurts so much. Because it does make negative assumptions. Which makes me angry and that is an energy suck as well as makes human interaction fraught with tension. i do what I can when I can how I can. That has meant giving up daily walks (before I was sick I worked full time and went to the gym and did theatre… man I miss being able to even one of those things).

I will continue to write about the pain I am in regardless. It’s not for attention it’s a reminder that this is a dull monotonous disease and makes it really difficult to look forward in to the future and even to the next day or next hour. While in a full flare I was living life in 20 second blocks. Which is as exhausting and depressing as it sounds. Luckily the brain does block out a lot of the long term memories of this which is the only way I can get through them. The understanding that I will forget them even if it is a year long.

And so life threatening drugs lose a lot of the sting- not morbid, just the idea of  a timeframe gets appealing. I am more worried about a long term issue from them (recurrent infections, the surgery I am totally avoiding discussing with my medical team). In fear for me and concern for family and friends and draining their energy.