I’d like to spend a bit more time talking about the things in my life that I have lost to fibromyalgia. I want to break this constant cycle of grief that I have been trapped in for the last 12 years. I hope that by bringing these things out into the light, I can find a way to move past them and continue my journey to a healthier, happier me.
My last post on grief talked about the loss of dreams and the loss of abilities, while there are many other dreams and skills that have fallen prey to fibro, I’d like to talk about something else: hope.
Fibro is a truly wicked disease to be afflicted with. You feel embarrassed by the fact that you’re in pain, but have no “proof” of it. The constant pain keeps you from sleeping (or the lack of sleep causes pain, it depends on how you look at it), and the lack of sleep messes with your mental functions, which cause further embarrassment because suddenly you’re having trouble carrying on conversations or performing “normal” tasks. Eventually, you fall into a pit of depression, and it’s no simple task to claw your way back out.
For me, all of these things culminated in me shutting myself away from everyone. I stopped working and locked myself in my house. I shut out my family, my friends, and even my husband. I started trying to pretend that everything was fine, I put up a façade because I was ashamed of my pain. The stress of keeping up the façade drained me even further, making me a truly miserable person to be around. The worst part is, at the time I couldn’t see it. I was sure that people just didn’t want to be around me because they didn’t know how to deal with my being sick all the time.
The truth is, they didn’t want to be around me because they didn’t know how to deal with me. It was the way I was dealing with the illness that was pushing people away, not the illness itself. I was almost always angry, grouchy, sad or some combination of the three. I felt trapped in my own skin; I forgot how to truly look at the bright side of things and most importantly, I lost hope.
I look back at the person I was, and I grieve for all the time and all of the chances that I lost and all of the things that could have been. Unfortunately, a great many things have been destroyed by what I allowed myself to become. I would give anything to get them back, to restore them, but the sad truth is, that it just may not be possible. Right now, that grief is the heaviest burden I carry; perhaps all I can do is let it go, and move on to fight another fight, I just don’t know how.
How do you give up on something when you’re convinced to the core that it can be saved? The strength of my convictions won’t allow me to stop fighting, even if it looks utterly pointless from the outside. I guess all I can do is remind myself that what’s done is done; I can’t change it, but maybe I can make amends by changing myself now.
It’s been a long, hard road, but I have finally found that little golden spark of hope again. I have hope that I will find a new way to use my talents, hope that I will someday have children with the man I love, hope that one way or another, I will beat this disease.
I won’t give up.
Fighting Fibro with Fire 
Jun 02, 2013 @ 12:45:27
I understand your grief. As we have discussed recently, I have carried with me a secret grief that I’ve always been bitterly ashamed of. Although we grieve for what has been stolen from us, by two entirely different thieves, our grief is the same. The only reason I survived my childhood of neglect and abuse, was because of the hope that I would make a better life for myself. No one would ever “give” me a better life, I’ve had to work and struggle to make it for myself. You, my darling first born, saved my life, because you gave me hope- for a better life, not just for myself, but for you too. If I ever write my story- the entire message would be, “never give up hope”.