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

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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?
~Nicole

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.

-Nicole