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.



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.


More and More

Dear Fibro,

I know you’ve been keeping a tally of the snow days and that every time you look out the window at the heaps of snow piling up more and more, you just cringe. Me too.

Don’t worry, Darling; we can get through this together. I know it was difficult to go out and take that walk today, but I’m really glad we did it. It was really pretty and clear and the cold air felt so fresh. It was good to remember that sometimes we just can.

I wanted to leave you a few reminders today: stretch, chill out, allow yourself rest, do creative things, drink warm beverages . . . be kind to yourself. Spring will come eventually.

– Nicole

Gentle Hugs

Dear Fibro,

I know you’re not enjoying this cold, wet weather — eight inches of snow over the weekend and now more snow and ice. The chill gets right up against you and makes you feel prickly. I know.

I’m writing you this note because I’m trying to remember that I need to pay attention when things are like this — need to face you more carefully. You know that I tend to want to bully you into doing more than you’re able to do . . . and then (inevitably) regretting that I was so stubborn. I admit it’s not easy to care for you when there are things that “need to be done” — snow to shovel, work to do. But I’ll keep trying to do it a little better.

Even though I express frustration with you sometimes, I know that part of your behavior is dependent on my own choices.

Even though it’s cold, let’s take a little walk later — let’s try to forget about pain and tiredness and stresses for a bit and just be in the moment with the brisk air, blanketed lawns, glistening icicles. Or, if you’re not up for a walk, maybe we can just stand on the back patio and breathe?

Gentle Hugs for you today.