About three weeks into my diagnosis of fibromyalgia, I felt like my symptoms were so much worse than they were before. I was in a lot of pain and my thoughts were in total chaos. Not that I hadn’t felt this way before, it just really seemed to be ramping up. I think the difference is that now I know that my disease is something that cannot be cured, and treatment may or may not work for me.
I have had moments of complete and total despair the last few weeks since being diagnosed. I feel in many ways the same way I felt when I lost my father about seven years ago. At that time, I would sit on my bed and cry and fist my hands in my lap, feeling so frustrated and hopeless, and just begging God, saying, “I just want him back” and “Please just give him back to me, please!” I found myself doing the same thing. I was sitting on my bed, inconsolable, looking up to God and saying, “Please! I just want me back” and “Please, I just want to be exhausted and stressed because of life, not because of an illness that I cannot be easily treated and I truly don’t understand.” I sat there begging and realized I will never be that “me” again. That “me” will never be my reality again. And this is something I’m trying so hard to accept.
My life is different now, and I know it will always be different. My heart is broken for my girls who’ve had to witness their mom go from who she was to who I am now. I hate feeling like my husband is disappointed in me when he comes home and it looks like I haven’t accomplished a thing during the time he was gone to work. I hate feeling that people feel that I’m just not social or I just don’t want to be around people, when the truth is sometimes being around people or being in loud environments, or when the environment is just too stimulating, can be too much for me to handle.
On one hand it has been a blessing to know this wasn’t all in my head and I wasn’t just making it up. On the other hand, it has been a big shock to me and I have found it hard to accept that this is who I will be, maybe for the rest of my life. I would take all the pain I could physically handle if I could just be able to think clearly and interact with my kids the way I did before, and to be present for them. I would love to sit down and make out a grocery list, or be able to accurately follow a recipe. I would love to have the energy to have dance parties with my girls, putting on make up and doing our hair and dancing in the living room on a Friday night
While I have not lost anyone in the true sense of the word, I still feel like I’m mourning the loss of someone I love very much. I am mourning the loss of “me” and if experience tells me anything, I know this feeling of loss and pain will get better with time. I know I have to go through some of the same stages of grief that I’ve had to go through in the past when I’ve lost someone I love. I know I have to learn to accept this disease and all it represents. I know that is the only way I will ever move on and make any improvements my life.
I am aware that all these thoughts I’ve had, whether they are rational or irrational, are going to lead me to a place of acceptance. I know it’s going to take time. I’m going to need help from my doctor to find the right treatment and I’m going to have to learn to ask my family for help when I need it and ask for their patience when there is something I just cannot get done. I believe the hardest thing is going to be learning to have patience with myself, and accepting myself for who I am now. I have to get to a place where I no longer grieve for the person I was and accept who I am now and that there are ways I can improve my life and the lives of those I love who are suffering right along with me.
So now I am committing myself to finding treatments that will help my quality of life, educating myself on this disease so I can make more informed decisions about my healthcare and learning to accept all the life changes that accompany a chronic illness. I am still trying to deal with the feelings of loss. I know it will take time, but I know I will get there. I have realized I am not alone in this journey. I have found support from those who love me. I have decided not to be ashamed or embarrassed about the hard times I have had because of this illness.
Maybe one person will read this and realize it is OK not to be OK for a while after getting this kind of news. It’s OK to feel sorry for yourself and grieve for the life you once had. It will also be OK when you are able to find acceptance and move on to a place where you can look back at your former self without feeling pain, and can feel happiness because of who you were and realize you are still that person. You are still the same person you were before your diagnosis. You may even be better because of it. I am not quite there yet, but this is the place I am trying to reach and I know I will get there.