I use to wonder if I would die from this Fibromyalgia Syndrome I have? Fibromyalgia in itself is not an autoimmune disease. An autoimmune disease is when your immune system attacks your healthy cells by mistake, you suffer from inflammation and chronic pain. Some autoimmune conditions even cause death. Fibromyalgia is not this. Fibromyalgia is considered a lifelong central nervous system disorder. It is chronic meaning you will have it for the rest of your life. You live with the pain and the co-existing conditions, but it will probably not kill you. In fact, the number one killer of people with fibromyalgia is suicide.
I have had fibromyalgia since 1998. I was a passenger in a car accident. I experience chronic pain, chronic fatigue, insomnia, clinical depression, post-concussion headaches, severe anxiety, cognitive impairments and digestive issues just about every day of my life since that car accident. Who wouldn’t feel like ending the pain? Some days suicide seems like the right choice. Once you’ve made up your mind, these irrational thoughts become rational. You have decided on a plan and are damn proud of it. Relief washes over you. You feel happy! Finally, you feel like you are in control! But up until now, luckily, something always stops you…
Honestly, I don’t want your pity, your medical advice, or your employment advice. If I hear; ‘get out of your own head,’ ‘I know a person who recovered from fibromyalgia,’ or ‘just volunteer, you’ll feel better’ one more time I swear I will scream! But I do. I hear those bits of advice frequently. I hear these things from people, I thought, knew what I was going through. Obviously not.
By the way, people expect volunteers to show up! I don’t even know if I’ll be able to put together a full sentence on any given day let alone keep a promise to volunteer for a specific frame of time…
I have arrived at a place in my life where I just don’t give a damn what you think because I have to live in this body, not you. You have no idea what I have had to endure until you have walked a mile in my shoes, which I doubt you could stand for 10 minutes.
I read about a man who has fibromyalgia talk about deconstructing your life to reassemble it in a way that addresses your limitations. I have never read a better description of what a person with fibromyalgia has to complete to live some resemblance of a normal life. There are chemical changes in a person’s fibromyalgia brain. These chemicals tell the brain to fire random pain signals as we can’t maintain a feeling of well-being. Our bodies are kept in a constant ‘fight, flight, or freeze’ mode. This results in on-going pain, cognitive impairments, weaker immunity, digestive issues, poor sleep, low energy, and the list goes on… The introspection it takes to deconstruct, then reconstruct your life is painful and takes time. But you do it, you face it. You have to address this chronic disease and your very real limitations because of it.
In the end, people in your life do not deserve to be collateral damage. So, after a few years, you stop with all the doctors, all the tests, all the programs, and all the alternative treatments. You start putting together what works for you. No one can do it for you! I can’t, your mother can’t, your partner can’t. If you are expecting them to help you in this process, they just are not equipped to do so. Eventually, you will stop reporting your daily hurdles to everyone around you. You will get in the right frame of mind, and you will just begin. The double-edged sword that comes with a chronic illness is you don’t want advice, but you get it. No one can help you, even though you want them to.
Finally, my advice to you! (If you want it…) Get professional mental health help, this journey of deconstructing so you can reconstruct is no joke. Join a support group, find one that suits your needs. Find something, anything that you enjoy but works the brain. Adult coloring, drawing, crocheting, reading, crossword puzzles, jigsaw puzzles, go to YouTube and learn something. (I’m still trying to learn to crochet left-handed!) Your process for the rest is all up to you. My hope for you is that you are mentally prepared and supported throughout your journey with fibromyalgia.
Live your best life!