I know it's a strange thing to write, but I'm really feeling the chronicity of this illness lately.I'm not the sickest I've ever been, but I'm going though a two-week bad patch. I think it's a combination of winter blues and the after effects of the cold virus I had over Christmas and New Years. Strangely, often during a cold, my M.E. symptoms improve, but then after I've fought off the cold, I have a crash.
I'm thinking about how much endurance it takes in order to deal with an illness like this. I woke up this morning and couldn't believe how ill I felt (should it really be a surprise after 8 years??). I'm having trouble remembering back to how a "well" body feels....it seems a long time ago. And looking to the future I'm having trouble envisioning a time where I'm not feeling the heavy burden of this sickness.
Coping: One way I cope is to try not to think backwards or forwards, rather just to focus on one little thing today. Maybe it's reading a paper for the online course I'm taking. Maybe it's just getting dressed. Maybe it's my morning coffee, eating a piece of chocolate or writing an email. I try mostly not to think too much outside the simple every day tasks of today.
How do you cope with the chronicity of it all?
The photo is one I took new years day. My roommate and I drove to an overlook in the city for a little outing and some air.
I've also posted a new poll of the month. I took the Canadian Clinical definition for M.E. and listed the categories. I was interested in which symptoms (outside the fatigue and post-exertional malaise) were worst for folks?
My specialist was one of the authors who wrote the definition. I'm one of those odd folks who doesn't really have the pain and the sleep issues but has been diagnosed with M.E. based on fitting the remainder of the definition and having had a sudden post-infectious onset. http://www.cfids-cab.org/MESA/ccpccd.pdf
For an outline of the definition go to page 5 of the document (I'm one of those asterisks)
I am feeling the same today upnorth and am finding comfort in your words here. I have had the flu this past 5 days (only realizing it last night!) and am now struggling with severe ME/CFS...have not been this bad in over 3 yrs. I am going to take your coping skills here and make them my own. Focus on the moment and not the weeks ahead. Excuse errors....laying down while typing.
ReplyDeleteWith thoughts of you this day of chronicity.
Love your photos
upnorth - I so agree with you. It takes all my strength and concentration - to be frank - to just get today done. Addine yesterday and tomorrow just makes my day overwhelming and exhuasting.
ReplyDeleteWhere did you say the poll is. I didn't see one in your usual place in the right column?
BTW, you have some of the most spetacular views!
First of all, I love reading your blog. I have a light form of CFS (I'm able to have a full-time job and do a lot of things), but I do crash from time to time. And each time I crash, I don't seem to remember that it was this bad the last time. After having felt quite good for a couple of years (with ups and downs of course), a lot of symptoms have come back lately. About getting things done, it's all realistic objectives! (I know, easier said than done, right?!) Hang in there!
ReplyDeleteRenee, thank-you as always for your supportive words. It's amazing to me that being as sick as you are this week that you still reach out. What an amazing heart you have. I hope you feel better soon. Influenza is the worst and on top of M.E.?!!!
ReplyDeleteDominique, living for today seems to be the best coping technique I've come up with for our hard days. The poll is in the top right as always...I wonder why you're not seeing it? Could it be your browser?
San, thanks for stopping by and reading my blog. I always like meeting others with M.E./CFS and hearing their stories - it helps so much to know we're not alone...what's your story? How'd you get sick? And your profile photo is great....I used to love skiing.
The chronic nature of this disease is definitely often overwhelming. I try to stay focused on each day, but some days are much harder to do that than others. And of course, sometimes even the present moment seems too much to take in. It's a constant struggle.
ReplyDeleteI got your posts to my blog -- thank you! And please don't worry -- I have done the same sort of thing before! But I deleted the one earlier message as you requested. :)
Hope things pick up for you soon. I love your nature photos, by the way!
How I deal with the chronicity of it all?
ReplyDeleteOne day at a time.
Sometimes one hour at a time.
And sometimes one minute at a time.
Judy