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.



Can You?

Dear Fibro,

Today, I want you to remember one thing – I am more than this body. More than pain that shakes me. More than sleep that knocks me out cold for a dozen hours and beyond — more than everything somatic. I am a scandalous cocktail of ideas and feelings and desires. I know that sometimes you aren’t able to open yourself up to considering the bigger picture, to taking this all in. Can you open your arms up wide enough?



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.


Pushing You Back . . .

Dear Fibro,

I’m becoming increasingly aware of how much I’ve allowed you to make me feel like I can’t, like I’m limited, like I might as well give up and allow depression and pain to defeat me. I’m starting to see through the cracks a little more — to break up the ice of complacency and fight back. I’m a young woman, still have so much to do and see, and I need to stop pretending that it’s OK that sometimes I’m like an old woman hermit — my bedroom becomes like a little cave sometimes.

I’m pushing.

I’m making plans to do more fun things like buying tickets to a Broadway show, or working on getting friends together for an overnight beach trip. You might protest, and I don’t know if you’ll kick up with symptoms when I go to do these things, but I can’t keep saying “no” to the things I want to do just because I’m afraid of how I *might feel. From now on, I’m going to try to say “yes” more and then deal with you in the moment as I go along.

I do hope you’ll be reasonable and just allow these things to go smoothly, but even if you don’t, I’m doing it anyway. Take that.