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.



Creating Against Gravity

Dear Fibro,

I’ve been trying to push you aside long enough to be inspired . . . to sort through thoughts about the things I find interesting or engaging . . . to think about what I want my life to look like outside of your boundaries. I do find that there are moments when I get into a creative flow and time passes without my notice, when I am able to put you in a mode of suspended animation and pay less attention to your nagging nudges.

Tonight, I’ve been gathering images and reference to put together a mood board for a creative project I want to do, and I have found myself really enjoying the process. It is low-key and not strenuous, allowing my mind and emotions to dance in any direction they desire, but as I type this note, I do feel your prickly pricks running along my shoulders, back, hips, legs. I feel bruised all over. I feel very, very tired in a way that someone without you as a constant companion might not understand.

So, here’s a question — Do you think there’s a way that we can work together to re-channel the energy you spend hassling me? Any chance that we could get that to flow into more positive directions, to support and invigorate my creative process? Sometimes I feel so stuck when you are being your least cooperative . . . and I want to spend more time ‘unstuck.’

Think about it, ok?

That Thing You Do

Dear Fibro,

I’ve been meaning to talk to you about that annoying thing you do first thing in the morning. I know it’s protocol to use “I” statements when addressing frustrations, but I’m skipping the formalities for now since we’re on a first-name basis.

I don’t like it when I wake up with that deep aching feeling in my legs. It’s first thing in the morning, and I’m barely awake, semi-comfortable in bed, maybe stirring from a good dream, and it should be a sweet, soft “hello” moment for my day, but right in the middle of my first yawn, I feel that crawling sensation and find that my legs are on fire. I would prefer if you would try to restrain this, but since I suspect that you will probably not heed my preferences, I wanted to at least get this out into the open.

When people talk of “leaping from bed with vigor to start a new day,” I laugh. What a nice fairytale. Instead of leaping, I slide, roll, crawl and hobble. But, despite you, I am choosing to enjoy my days and do whatever I can to keep your antics on the back-burner.

I don’t mind telling you that I plan to air even more of your not-so-nice secrets . . . if you have any defense for yourself, I’m all ears.

– Nicole

The Day that Wasn’t

Dear Fibro,

Okay, I know I didn’t really have plans for today, but did you really have to take THE WHOLE DAY away from me. It’s Saturday, and I would have liked to have gotten some projects done or felt like I had the energy to enjoy going outside.

Instead, you completely zapped ALL of my energy, and I slept and slept and felt pain in between sleeping — deeply aching arms and legs and shoulder blades and sternum and hands and . . . — so much pain — and then I finally woke again with a migraine to endure until eventually I slept again.

I missed the two calls from my Mom and couldn’t catch back up with her schedule, so I spent the day without human connection in a warp of sleepiness. I’m not happy with you at all right now. This has been one of your most demanding (dare I say selfish) days in a while. Why do you do this to me?

I admit it. I’m angry.

And sad.

And still so tired that I know I won’t be able to fight you over this.

Please try to be a little bit more reasonable tomorrow.