post during the week.I just had a few things on my mind that I wanted to spew onto this blog.
First of all, I read a very good article this week about M.E./cfs which included a discussion of the controversy over the XMRV (retrovirus). I wanted to provide a link to, as well as some personal comments on the article:
The things that struck me are:
- It's so true M.E./CFS is an orphaned illness, we are an orphaned group of sickies - deserted for the most part by researchers, medical practitioners and governments (who fund research).
- The phrase "It's not a death sentence, it's a life sentence" couldn't be closer to the truth. For those of us with moderate and severe M.E./cfs it is a lot like being "locked up", unable to participate in so many aspects life.
- I'm not sure if the average life expectancy of those with M.E./CFS is really 55yrs as stated in the article (although I have heard 15 years shorter than average which might explain where that number came from), but surprisingly, this doesn't really scare me. When I think of being sick for another 16 years! I think that will be quite enough, thank-you....now if I get better or improve, I'm sure I'll want a good long life, but at this level of illness I'm not so sure that after 24 years of suffering through this illness I won't be ready to move on.
Sorry, I guess I got a little morbid there...I'm not without hope that I could improve or that there might even be some treatment available someday (although at this rate I'm skeptical!!!!).
I did too much last weekend and yesterday (big surprise). Today I whipped into the grocery store quickly and was standing there feeling so sick and dizzy and weak...close to passing out - asking myself "How is this my life?". I need to take it easy the next two or three days or I'll be back in relapse mode which I definitely don't want.
I've included two photos from my retreat last weekend in this post.
Hey, this is a great blog you have going here. For the most part, I don't leave comments on CFIDS/ME blogs, however your story is very similar to mine (mono/grad school/athlete/go-getter) and I can appreciate your ability to verbally express yourself, whilst still remaining hopeful.
ReplyDeleteIt's interesting because it seems that so many of us with this illness are going through a relapse this year. And like you, I have a viral mystery on my hands, on top of the already well-established CFIDS. I've read the account of another person who has these blisters in her throat that you speak of. Yup, I've had them for 3 weeks now, although they don't hurt like my throat did when I had mono so many years ago; that throat was like razor blades going down. The nodes definitely hurt worse than the blisters. I too was tested for strep (negative-still given antibiotics, no help) and mono (negative, although my first bout was in '87).
I've been dealing with this illness for over 15 years now and it continues to shock me in its ability to knock me down when least I expect it. Although I did attempt to return to work and grad school this past fall, only to find myself gravely ill after only 4 weeks; my body simply cannot run at those speeds. But it was a full scholarship, so I had to give it a go. This viral yuck in my throat has been lingering on and on; exhaustion (more than usual), nausea and low-grade fevers.
Anyway, I suppose I could get tested again for mono, as the levels tend to show up better a few weeks in (or perhaps it's a CMV bourne mono and not EBV), however what's the point? A virus, is a virus, is a virus; carting myself to and fro, back and forth from the laboratory is entirely exhausting and just not worth the trouble considering neither CMV/EBV have a treatment anyway.
I'm sorry you have this illness; I'm sorry to read about what it has stolen from you. I know exactly what that's like and I appreciate you sharing your thoughts here. My blog isn't about my illness, however feel free to come on by and check it out sometime.
all the best,
jenji
ps if you figure out your viral blister yuck, let me know. :)
pps did you happen to get the h1n1 vaccine this year? I could swear things started to go south a week after that vaccination.
Thanks for the link. No, I don't think you are being morbid, just not shying away from the big questions.
ReplyDeleteMe again. Sorry, I can't make the link work.
ReplyDeleteHey Jo, I tried the link twice and it worked...it should take you to a pharma type journal...I'll look up the title so you can google it instead.
ReplyDeleteHi Jenji, thanks for the comments and visiting my blog. It DOES sound like we have a very simlar, very viral case of M.E./cfs....
And I know what you mean about being fed up with testing...they always say, "well it looks viral"...but there's really nothing useful they've been able to do. I can't believe you've been sick for 15years...wow! I just hate the thought of continuing to be sick for so long (I'm coming up on 8)....I've also decided that while this is hard for anyone, us active athletic types take the extra hit when we have so many hobbies (and for me my previous work) built around having a healthy body.
Well hang in there...hopefully summer brings some relief to us both and I'll let you know if I ever figure out the throat blister funk.
I have never read the life expectancy for
ReplyDeletethose with CFS is 55! I'm 62 and just
became a grandparent so I want to be around
to see some of her growing up. I've had
CFIDS since 39- yep for 23 years. I have
a friend with CFIDS since 45 who is 70.
I use to feel the same way as you-- I can't
face years more of this illness, but here I
am. I found looking far ahead does make
you feel like I can't stand more years of
this; but if I live one day at a time it
isn't as daunting. I remember in my forties
I had this thought ..hey maybe they will find
some very good treatments and hey maybe
when I'm older in my 50ies or 60ies I will
feel better than I did in my 30ies. Well
it did not happen; but I think there is hope
for those newly ill and those young
that you will be fortunate to have some
good treatment. Keep hoping.