I've been feeling a little uninspired bloggingwise - hence the posts that have been a little further a part.
On the feet of the PACE trial studies and all the media, another study came out which found that over 600 proteins in the spinal fluid of M.E./CFS patients were unique to those of healthy controls. While it might help with a biomarker (and test) for the illness, some of the news coverage was disappointing and seemed (to me) to downplay the seriousness of the illness. Oh well, I guess I have to be thankful that someone at least found something, right?
Here is another really great story written by journalist John Falk who's "coming out" of the closet so to speak as a CFS/M.E. sufferer. A very brave thing to do given the stigmatization.
http://www.huffingtonpost.com/john-falk/chronic-fatigue-syndrome-_b_829651.html
In fact, just today, I met with a classmate for coffee to discuss the online class we're taking. Through talking it came up that I have a chronic illness (partly because I missed a course I was supposed to do last summer). When she asked what I have, I actually deferred and said "If you don't mind, I'd rather not say".
Yes, I'm a coward. Sometimes I just don't want to deal with potential skepticism. And if it's not skepticism, it's often educating someone about the fact that M.E./CFS is actually is a multi system illness and not just about being tired.
On a positive note, my health in Feb. was considerably better than January.
The last two days my energy has crashed and I'm back dealing with major flu symptoms again. Strange, because I can't point to any "overdoing" it. But sometimes this illness is just like that. Bad days come. As much as I would like to, I can't control this illness.
So true, upnorth...we cannot control our illnesees...actually there is little in life we can control! Just need to go with the flow and sometimes hang on tight!
ReplyDeleteHi Upnorth -- I'm Linda from the east coast of Canada (NL) and I've been following your blog for awhile now. Just thought I should 'introduce' myself. I think your answer to your classmate was wonderful. I too get tired (no pun intended) of trying to explain this illness. Kind of a catch 22 situation....trying to explain or not explain...can't win for losing. Gowever, saying there is 'something' wrong without going into details, sets boundaries for sure. I'm going to give this approach a try.
ReplyDeleteAt Home on the Rock - so glad you like the blog....I need to follow yours too.
ReplyDeleteRenee- yes giving up control has been one of the hardest lessons for me - someone who believed before that everything was "fixable" through hard work. Maybe this is a positive that has come out of being ill.
Hi UpNorth ~
ReplyDeleteI'm glad you are feeling better! I too am very careful who I tell about CFIDS. I don't need any more rejection!
Judy
Hey Upnorth,
ReplyDeleteI quite often feel like that about my blog. I usually just leave it until it feels right again. We understand : )
I'm glad you've been feeling stronger lately. You did seem quite unwell and down in January.
No you can't control your illness. It's incredibly frustrating. I know you would like to be participating and achieving more. It's a bitter pill to swallow...
I hope this dip you took again goes away soon.
Rest well. xx : )
Disclosure is a tricky thing, I agree with you Judy, we don't need more on top of what we already deal with.
ReplyDeleteTreya, thanks for your support, I think we need to feel inspired to blog and that isn't the case all of the time.