Flare Thoughts From One In Partial Remission
My sneezy cold is now a coughy cold. Yay. It seems my hopes of coming through this weeny illness without any serious flares have been shattered. I was getting better from Wednesday on-- but then woke up at 1pm in the afternoon today after a night spent coughing and struggling to breathe. Fun. My sinuses are more clear now and it seems my cold is truly waning at last. But it left a legacy that my thrilling chronic condition just couldn't sustain any longer. I'm exhausted today. Hardly able to walk kind of tired. It's flare fatigue.
Since my partial remission began in late 2003 I've become so much better that at times I'm able to actually forget that I even have any real health issues. I carefully have pushed myself towards a more physically active life and lost 18 pounds and kept it off (still have about another 10 to go, though.) I do housework regularly and have a part-time job that's very physical and yet I've managed to avoid pain, fatigue and brain fog flares for the most part for years. I still have some bad days here and there, but in general if I'm not stupid and pace myself (and obey the signals my body gives me and totally ignore people who tell me I should do even more when I know I can't) I am able to maintain this nearly-normal existence. It's SO precious to me, as vitality was never a part of my youth as it is for most people.
But there is always the looming shadow of CFIDS/REDD/XAND (they keep changing the name as more information about what causes it comes out.) I know too well the consequences of pushing when my body hints to me to slow down. And I know how my immune system is inexorably tied into the entire web of health versus illness. One cold can cause me to crash for weeks. The flu or a bad infection can take me out of commission for months. A more serious illness can have me bedbound or wheelchair bound for a couple of years. There is a lingering fear of my own vulnerability that I can never quite shed. Chronic illness means a life that is up for negotiation at all times.
And so every minor cold causes a certain amount of wariness in me. Will this one take me out long enough to lose a job again? And along with the job the respect I get from others that disappears when I can't work for a while? People are so harsh and cold-blooded in these rushed times. Sympathy and softened expectations almost impossible to come by. Mercy is an anachronism. I dread facing that reality again.
I had some minor fog flares the first 2 days as this cold first hit over a week ago. Then it was mostly a normal cold. The severe fatigue flare today is smacking me upside the head. It's on the recovery end-- that's a bad sign. Luckily I don't work until Wednesday this week. Hopefully, I come out of the flare by then.
Not able to DO anything much today, I lugged my heavy body across the floor and went out onto the deck, thumped my way over to a chair, and thunked down into it. Then I just sat-- for a couple of hours. All bundled up in polar fleece and sweat pants, though the temps were mild, because my body temperature is down. It was cloudy and slightly breezy. A few trees are just beginning to change color ever so slightly. A light haze of smoke from burning brush piles kisses the air and lends a spice scent. And I just sat and let it all soak into me. When my body slows down, I've learned to take my cues and slow down with it. Offer myself the gift of peace and appreciation for "the small things."
And through my mind the repeating, swaying mantra like a prayer circles through me:
"I'll be okay. I'll be okay. No matter what-- I'll be okay."