At 45 years old as I sit in this chair trying to shake off the morning stiffness and pain, thoughts come to mind. My growth through grief in living with fibromyalgia has brought me a long way. I used to wax and wane through the stages of grief with this disease. I have had denial, shock, depression, anger, bargaining, and acceptance phases. Not to say I am in acceptance 100% of the time now, however maybe about 95% of the time.
Some days I guess I can still feel sorry for myself and want to scream from a mountain top and say "HEY, this stuff is real, you have to beleive me". But for the most part, it is a waste of my time to worry about whether or not anyone believes me. Belief or lack thereof makes me no less ill. In the end, I still live in this body and must cope with the challenges the cruelty in which fibromyalgia brings.
I have not come completely off that mountain top and still want all of society and every friend and aquaintance to understand this. But it will be to no avail to spend my energy any longer with attempting to convince. People are who they are and I cannot change them. If they are closed minded, they have to choose to open the mind as I have no power to do so.
I accept that life is never going to be pre-fibro again. I will wake up every morning with the stiffness and pain. Only with the neccessary pills and time every morning will the misery subside into a realm of resemblence of functioning.
I accept that motherhood will never be what I wanted it to be. Fibromyalgia did take that control away. The control to be able to do what I want to do anytime and anywhere with my children. So I must accept that they have an ill mother. I believe they have because as far back as they remember, I have been this way. I have learned that love is the most important part of motherhood. And love is all they get from me. They know they are very loved.
I accept that I will take pills everyday for the rest of my life in order to function in some fashion close to "normal". I have accepted the uncertainty of the future. The uncertainty that I may not be able to work for the rest of my younger life until I reach retirement age. I may not be able to do that, but I will face it all one day at a time.
Perhaps we must reach a level of acceptance in order to live in some peace emotionally with this invisible curse. If so, I am almost at peace with life.
I know what you are going through. I have been there and back and gone again. My name is Tricia or Trisha. It doesn't matter to me. I have a story to tell and a book to write. I was born with 2 different diseases and they are Crouzon's Disease and Apert's Syndrome. One doctor would say I have Crouzon's and the other doctor would say I have Apert's. So as I got older I wanted to check it out for myself and I have come to terms that I have both. And here are what they are. Crouzon's is dealing with the bones and muscles and Apert's is dealing with the web hands and feet. The Crouzon's is the worst one. I am 44 right now and my bones are the age of 80 years old. The specialist has done a bone scan ofme and he said that my bones are a mess. But they have been like this for a long time. And I know it's going to get worser. (I know that's not a word) and just found out last year that I also have Fibromyalgia, and Degenitive Bone Disease, Carpool Tunnel in both arms and both wrist and hands have bad nerve damage. How or why I don't know only the Lord can answer that one. In time I will be bed ritten. My doctor that I have known since I was 2 years old said my legs and feet will give out on me and they are doing that now. But I am still fighting all the way. I have to I don't want to give up. When I wake up every morning I hurt and I hurt pretty much all day. I am taking meds but that doesn't stopping the hurting. And when I go to sleep I still hurt. At times I can't sleep because I can't get comfortable because of the pain. At times it drives me nuts because I can't do anything about it. And I have days when I just want to sit down and start crying. I would love to go up on a mountain and scream out and cry out. But I know if I do that I will get sore. I also have the days of the poor me's because nothing goes right an I just give up and watch tv. But the buttom line I know that the Lord has something in store for me and me only. I am talking the talk and walking the walk. I am praising the Lord for everything He has given me. Even though that my life sucks right now. The few things I can do I enjoy. I love talking to people about thier problems or what they did that day. I am a good listener. I don't judge or put you down. ...Hugs and Prayers, Tricia
You sweet woman! I am 35 yrs old and dont have near the problems u do but suffer with diabetic nueropathy in feet and legs and arm. It is unbearable sometimes and even on meds I just cry my eyes out till the stronger meds kick in. It is depressing and discouraging but it is what it is and we just have to go on. I pray for you and just want u to know that I know where ur coming from and u r not alone! I have a sis and mom who understand but my fiance does not. He just cannot comprehend this idea of (invisible) pain. It is hard and I dont know if we will b able to move forward with our relationship. Being supportive is a very big part of a relationship. I guess I will have to decide if I can live with this. However I am not alone I do have support from family and friends so I will be okay. Though it is hard to understand why we go thru this everything in this world has a purpose even if we are unable to see it. I suppose this is where faith comes in! God knows my pain and if I allow Him to direct my life it will be how it is supposed to be! I feel for u and pray all will be well with you!