A Sunny Day…

(with fibromyalgia)

I’ve been waiting so long for this. It’s sunny and beautiful out today. Usually a rare appearance of the sun lifts my spirits and makes me feel better. But today I don’t want to know. I don’t want to know that the sun is out and the sky is clear. I don’t want to see people walking their dogs or out for a run. I don’t want to see it because I know I can’t enjoy it today. I can’t enjoy it like the people all around me taking walks or just going about their business in the warm sunshine. Just thinking about taking a walk makes me tired. And even if I sit out in the sun I know I won’t be able to enjoy it the way I used to. I won’t be able to focus on how lovely it is because I’m too exhausted to focus on anything. And the pain and random ailments in my body are too distracting. The warm weather and birds chirping are all a sad reminder that I can’t enjoy life.

Instead of waking up and being greeted by a gorgeous day I’m sitting on my bedroom floor crying because I’m so tired. I went to bed at midnight last night, which is early for me. I’m a night owl and can easily stay up to 4am before realizing I should probably get some sleep. But these days I have to get to bed early to have any chance of functioning like a normal human being. And even then it doesn’t always work. Some days it seems very random; even if I get a full eight hours of sleep I wake up feeling like I just blinked and now I have to keep going alongside people who have slept, are fully rested and eager to use the energy they’ve recharged to get through the day. I feel like I haven’t slept in years. That the days just continue on with no rest in between and there isn’t anything I can do about it.

For a long time I chastised myself…

if I just did the right things I wouldn’t feel like this. The truth is it actually feels better to beat yourself up because you are convincing yourself that you have some control. The reality is that I don’t have much control over how I feel. I just have to try my best and hope that my body will respond. And the trying is hard on an already tired mind and body. Having to constantly do the best thing for myself feels taxing.  Having to make decisions I don’t want to make about how I spend my time and not getting to do things I want to do is psychologically painful and wears on me.

The Worst Part

The worst part really is that there’s no one to say these things to. I live alone and when I come home from the end of a long day there is nothing in the world I want more than to say to someone “it really sucks to live with a chronic illness”.  That’s all I want. I don’t need someone to fix it or tell me what I should be doing. I just need someone else to know what I’m going through. To have a glimpse into what it’s like to have to go through life being me. To care.  But there’s no one to receive the words. I don’t have any support system to speak of and that’s part of the problem. The loneliness feeds the illness like bacteria.  It’s a constant frustration. I have tried relentlessly to build meaningful relationships. I have been involved in numerous groups and activities. I have constantly reached out to others, sometimes despite my own health. But it never really paid off.  And still, even through the “fibro fog” there’s so many thoughts I’d like to share. If there was someone to hear.

If there was someone to hear today I’d say take this beautiful day away or at least distract me from it until I hopefully, someday again feel well enough to go out and enjoy the sun.

Rebecca is a free spirit who lives resiliently with fibromyalgia. She lives for sunny days when she feels well enough to make it to the  lake.