Bit by bit fibro is killing me. It takes pieces from me, from my strength, from my pride and from my soul. A diagnosis of fibromyalgia is a death sentence for a normal life. I’ve lived with it for seven years and I still haven’t finished grieving for the life I should have had. I should be preparing to study a year abroad right now. I should be fluent in another language. I should be hungover every Sunday after spending a night out with friends.
Instead I lie in bed, all day everyday. Or I lie on the sofa. Or I go to someone else’s house and lie on their bed or their sofa. Fibro is an arch nemesis, a jealous friend. It is always there always there trying to take me down at every opportunity. It’s like the villain in an old silent movie. It’s a man with a twirly moustache, striped jumper and a cape who creeps comically behind me, who thinks hiding behind a twig of a tree makes him invisible.
But then again it’s the opposite.
Instead of the audience knowing the villain is there and the protagonist being oblivious, only I can see it and my audience are blind. Fibro chips at my physical and emotional strength. Every set back takes away another bit of me. I don’t know how long it will be until everything comes crumbling down. Fibro has taken away my foundations.
The foundations I built over twenty years living on this earth. I feel like a game of Jenga, each time the fibro hits, I get one step closer to tumbling to the floor. Maybe I’ve already crashed and burned. Maybe this is rock bottom. If I didn’t know what fibro was like I would say it probably is. This is the lowest I could be, or the lowest I think I could be. But there’s no way I could put that much faith in this curse.
I could experience the worst pain I’ve ever had and my fibro treats it as a challenge because the next time it will be worse. Some flare ups are better than others but others test my physical and emotional strength more that I could have previously imagined. Fibromyalgia isn’t an imaginary excuse.
I would never have chosen this life for myself and if I had the option to get rid of the demon that holds me, I would without hesitation. This is my life. This is real. This is me, and it is and will be with me for every moment of every day for the rest of my life.
whispered in my ear
“You’re not strong enough to withstand the storm”
Today I whispered in the Devil’s ear
“I am the storm”
I am Fibromyalgia Warrior
Fibromyalgia Roller Coaster: Soul searching- Where do i Go Now
Jessica Stredd Pudicombe added to it that So, there are nights like tonight that I just feel lost. Lost in emotion, lost in thoughts, lost in pain, and lost in what lies ahead. For those of us women, we fully understand the ups and downs of our emotions, happy one minute, then angry, then sad, then nervous, then etc…. It’s a roller coaster of ups and downs. Add on chronic illness and hell, where do we go from there?!?! Male, female, the burden of chronic illness overturns our world. Sometimes we feel like things are under control. We have come to terms with our reality, we know things will never be what they once were and we adapt and learn to live with what our lives have become. But sometimes , sometimes the reality of what lies ahead breaks through and it overtakes our life. We know life as we knew it will never be the same.
The life we once enjoyed has been blown apart by this evil force that dictates what we do and can’t do. It messes with the emotional state we hoped was dealing with this new life. There are good days and bad days, highs, lows, ups, and downs. We used to look ahead and plan for the future, or live in the present with the ones we loved. Now, what is consistent? Nothing! The plans we made with friends, well, maybe another time. The party with our family, well, you all go and give my regards. To make plans is is like the target game at the fair, it’s hit or miss. We want more than anything to be a part of all the plans that have been made but we can’t guarantee anything.
We really want to be a part of our families plans, we want to be able to make plans and stick with them. We want to work, we want to go out, we want to be a part of the world we were once involved in.
Sometimes we are able to say no, to step back and respect what our bodies are telling us. We can just say, nope, not today. Other times say yes, we follow through with the plans, we try to be a part of life, for once, we can at least pretend and say it was fun , it was great to get out. But tomorrow happens. Our bodies say what were you thinking?! The life we once knew is so different than what we thought it would be. We really try hard to maintain some semblance of what we thought things might be. But no one, no one could prepare for this life we are living. We will continue to try to keep plans we’ve made but please don’t get mad or judge us if it changes.
We struggle to maintain a “normal” life but it has been pulled out from under our feet. Whats left? From here on out all we can do is be positive, be humble, and most of all, be patient with ourselves. Take time for us, take time to grieve, take time to reflect, take time to learn what our new normal is. And most of all, take a minute to focus on ourselves, what works for us and what makes us happy. Learn to live this new existence, learn to appreciate what we can still live and love each day. Take it one day at a time, live day to day, hour to hour or minute to minute. Embrace what you have and learn to live and love life as you can! Soul.