Yesterday was Sunday. I needed a haircut in the, 'if I don't get one I'll either shave my head or folks will think I am a transient,' kind of way. It is odd now that I am a full-time bed filler rather than a professional worker that what I look like is no longer critical. (except to my hubbie who still seems to think I am the cat's meow). I mean, you don't see many fashion accessories that complement a catheter bag. So we headed to the mall to one of those haircuts in under 12 minutes places. It was one of those rare cool in August mornings, my MS was at a low thrum, and it seemed possible to be out and about. Lurking in the background was the ever present question: For how long and at what cost?
Recently, one of my closest friends said that she has trouble seeing my cognitive dysfunction. I tend to be talkative, happy, and positive. I finish the Friday and Saturday New York Times crosswords about 70% of the time. So, I am no dumb blonde. I am also rather stoic about the endless gnawing pain and creep deep in my cave when it becomes unbearable. No one wants to hear about it and I am sick to death of living with it. I can blithely explain the cognitive impact as that I have trouble following directions and remembering the last thing or two I am asked to do. But what is harder to explain is the fog. Thick soupy stuff that winds in sticky tendrils through my brain before making its way down over my eyes and lips and finally wending its way over my arms, torso, and legs. Until I am cocooned in a gossamer shell that I can see vague images through, but can't seem to break free from.
Haircut joint...fog free. Wandering over to lunch...feel the first tugs or slips; my left arm has to be reminded to do its thing, the sunlight hurts my eyes, I can't quite process how to negotiate the curb cut/street/parking lot combo to our destination. At the restaurant the noise and conversation start the downward spiral. It feels like my brain is stuck on a tilt-a-whirl. I can't seem to filter out any of the myriad noises around us and so can't concentrate on the menu. Eventually I pick something. After the waitress leaves I realize I am not sure what I ordered. I smile at my hubbie, we talk and food arrives. Oh, good, salad. I can eat that. I want so badly to be here with him; but my brain is at war with reality and my body is paying a high price.
Our plan was to stop at JC Penneys on our way back to the car. Sounded good at the outset, but now I am not so sure. It is so hard to explain. My body is drained, my mind is befuddled and I can't seem to keep them in sync or on track. We go in and ask a clerk the way to our department. I can hear her, but can't follow what she is saying. I ask for clarification and I can tell she finds me odd. John leads the way. I can't seem to track the item, size, and style I am looking for. I am snarly and trying to put on my normal face.
Back home, after a 1.5 hour jaunt I am smooshed out like roadkill. Two maintenance errands and a bite to eat have cratered me for the rest of the day. My nerve pain is roaring back and the MS fog has rolled in. I can't seem to work up enough fluff to converse with the old man or answer the phone.
Damn, but I quite simply hate this illness. Quite a high price to pay for a cheap hair cut and a pair of sweats.
2 comments:
This is a vivid account of your daily life. I hate your illness,too. It's more incipient than what people can imagine and this post paints that picture in senso-vision.
lvya, Janet W.
You write very well - and leave your readers with a hefty dose of "hey, I want more" feeling.
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