I am writing this so that people who love me can understand, people who are curious can understand, and also maybe even to try to help myself understand.
I have spent years of my life tired and in pain and sad. Only it is so much more than that.
I never admit that I have been diagnosed with fibromyalgia because I have only ever heard negativity towards it. But the thing is, it is real, and it really sucks.
I have noticed that over time, my good days have become fewer and farther between. Good days are the days when I am able to wake up and function like a normal person or get the things done that I need to before I crash. I think it is confusing for people to understand what it is like for me because they see me on days I am able to push through. But on days when I just can't, I often have to let people down. I hate when I have to do that.
I often can't settle into a comfortable sleep. I have nightmares every night when I do sleep. I toss and turn quite a bit. I cannot even tell you the last time I woke up feeling at all refreshed. Every day is a struggle to make myself start my day. Getting myself ready to leave the house is an extremely exhausting experience for me. I have to stop and sit often. I am always late and I always hate myself for it.
I get in trouble at work because I am not consistent or reliable sometimes. I am smart and have ambitions and I let myself down most of all for not being the educated career driven person I know I should be. But for some reason I just can't let go of that and be a "disabled" person. I'm not sure I will ever get to that place. So I just keep trying.
I hate this whole thing.
I hate that I will never be the vibrant active person that I used to be. I hate that my life and energy have been taken away from me.
I hate being in pain.
Sometimes I actually forget some of the pain I feel every day. I have programmed myself not to notice I think. There are these weird muscle spasms and random sharp pains and tender points that are always stressed and I just have to make myself ignore it most of the time to get through the day. I have days where I simply can't get out of bed or lift my arms or climb the stairs. Those days are the scariest.
I get embarrassed because I feel like people just think I'm lazy. I push myself to do as much as I can, but sometimes I just can't walk that far or stand that long or wake up. Sometimes I push through and find a way to force myself to do things, and then I end up having to sleep for days straight afterwards.
All of this makes me depressed. I hate that part too. But I think that feeling this way for as long as I have would get most people down.
My toes are numb. My hands ache. Some days I can't grasp things like a pencil or drop glasses because I can't hold on to them. That is probably the thing that I have been scared of most lately.
My body does not tolerate transitions well. Going in and out and in and out make me uncomfortable and pained. I am sensitive to lighting and temperature and particularly humidity. I can feel the changes from the top of my head to the bottom of my feet. And guess what? I know that I'm sweating. You don't have to tell me. But you can hand me a fan or a towel and I will be extremely grateful.
I mourn the kind of person I should have been in this world. I will never know her. She had my smarts and my wit - but she could DO things. She didn't let people down.
I know that my family is a blessing to me and that they get me through this. I wish I knew there would be some way to repay them. I give what I can of my good days to them. And I know that they deserve better.
I am glad for the friends who are there to share the good days with me. Inside I will always be a fun-loving thrill seeker. I appreciate being able to let loose and dance when I can and that I have people to do it with. I hope somehow they can forgive me for the times when I can't do this or be this way. I hope they know that on some days I am just as happy to be there and watch them do things I used to be able to do. And to laugh with them. The laughing keeps me sane most of the time.
I count on people to remind me who I am. I feel such deep gratitude towards those who can just take me as I am and enjoy me anyway.
I feel trapped in myself and it is a scary feeling. My body is like a prison.
I get so angry sometimes and it comes out in such strange ways and that makes me feel guilty. I have never been able to understand the pressure and frustration that builds up inside me.
I let people down. Every day.
And then I unfairly ask you to love me anyway. Surely some part of me is still deserving of love. I try to repay those who are able to do it, but not always very well or consistently.
Fribromyalgia. This thing is real. It is a disease. It has stolen my abilities. It is invisible. It is hard for me to explain. It has no cure. Treatment is uncertain and changing and unreliable.
It is what I have, but it is not who I am. I am still me inside.