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.



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.



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?

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.