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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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.

~Nicole

 

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

Back to Reality . . .

Dear Fibro,

Today was our first day “back to reality” after a long week of Fourth of July festivities, family visiting from out of town, fireworks, site-seeing, and lots of grilling! I am so grateful that you decided to cooperate with me while everyone was here visiting. I had a lot of fun playing with the nephews and catching up with the adults, too! My legs were the most painful, and I wrestled through some¬† heavy exhaustion at times, but overall nothing unmanageable. I’ve been crossing my fingers now — hoping that getting back into my normal weekly routine won’t also bring along a flare as a residual punishment for having a fun stay-cation, but I will continue to hope for the best.

Two things that the clarity of a week out of the office have helped me to remember and re-focus on are my need to express myself creatively to stay encouraged . . . and the importance of family connections. I plan to continue remembering these things even if there are days when you don’t want to go along for the ride.

Back to life.

~Nicole