Observing You

Dear Fibro,

Today, I feel like you are hovering all around me, like you’ve fashioned yourself into a suit of scouring pads, hugging me tightly at every turn. I can’t remove you while you scrub into me. Abrasive to my peace of mind. Bruising me with invisible bruises. 

I feel the weight of you with each move I try to make. Whether I sit, stand or lie down, each position brings its own individual challenges — stabs, jabs, or prickles of pain. Shooting pain or radiating pain. A never-ending menu of surprises.

I stare at you in the mirror sometimes, and it’s like staring at myself but more elusive.

This week, I noticed that I have worn a hole in my sheet with restless legs in pain at night.

I have no questions for you now — just making these observations so that I can remember these days.

~Nicole

Body On Fire

Dear Fibro,

Everything hurts. Every nerve, muscle, skin cell. Headache. Neckache. Backache. My brain hurts. I think this is all your handiwork. I’m exhausted. I missed work today, and the timing was not so great. I don’t know what to think of you, how to feel about this. I am tired. Tired of you. Sometimes I want to learn to live with you, and sometimes I just want you to go away. For today, that’s all I have to say.

~Nicole

Maybe I Can

Dear Fibro,

As I anticipated in my last post, you took your chance today to take me down for the count. I woke up this morning feeling exhausted, ate some breakfast, mowed the lawn and then . . . napped for almost the whole day. I didn’t intend to sleep for so long, but you had me pressed heavily into the bed, each cell of my body feeling drained, nerves groggily firing with pain and discomfort. I slept, then stirred, then slept again.

Tonight, I feel that surreal buzz  that comes with evening hours that feel like daytime. I called my Mom, then went back out to do a bit more yard work, made some dinner (delicious yellow summer squash sauteed with onion and garlic, fresh blueberries, sharp cheddar), and put away some laundry. There is more that I should do to catch up on some housework tonight . . . but before I do, I wanted to take a few minutes to write to you . . .

Are you glad that I pushed you the past couple of days? Glad we saw the comedy show and MacBeth and caught up with some friends? It’s nice that getting out of the house a bit more helped me to feel a little bit more human . . . but I guess I’m wondering if my attitude of pushing you isn’t correct. I tend to sometimes see things as too much all or nothing. Sometimes I feel like I either need to act like you’re not with me at all or just allow you to fully take over, but maybe there’s a better balance.

I know I look at this as me against you a lot of the time, but tonight I’m wondering if I need to stop looking at the long (and potentially frustrating) sleep today as you ‘getting me back’ or as revenge for the week’s activities but just as a natural piece of the reality of your needs. This is not easy for me to understand or accept, but maybe I can.

This blog and these letters are about me learning to live with you.

Maybe I can.

~Nicole

Overwhelmed

Dear Fibro,

I don’t understand why I feel this way – pain all over and so sensitive to anything remotely painful. I accidentally bumped into the car door yesterday and it brought me to tears, as did an accidental bump into the bathroom wall. These things shouldn’t be so painful. I’m sure some people would read this and think it’s just drama, but I don’t think it is – it HURTS, like automatic/involuntary tears-in-the-eyes hurts.

And the fatigue level is high. I slept a lot on Saturday – a lot – and whenever that happens, I do feel like I’m missing out on life. I see photos of other people’s sunny afternoon activities and feel like I’ve become a lumbering troll. I napped again on Sunday, and I went to bed early Sunday evening, and I still woke up today feeling like I had barely slept, un-rested, tiredness in every bone of my body. I guess this is all just part of the Fibro process, for now, for me . . . but I am feeling overwhelmed.

What can I do?

-Nicole