I just figured something out and it took about 27 days to get there. I was thinking about my resolutions that I made and one of them has been kind of hard for me to keep.
- “Refuse to say the “F word” (I have Fibromyalgia and it has rearranged my life but I’m not going to let it rule me anymore. My middle name isn’t Fibromyalgia and my blog isn’t about illness.”
Well, I was wrong and I am scratching it off my list. Fibromyalgia is a part of me and it is impossible to not write about it since it is one of “the many facets of donna” which is the title of my blog. Unfortunately, it is also part of many other people as well. I have decided that instead of trying to hide it I need to help people understand it.
It just occurred to me that many people don’t know what fibromyalgia even is or don’t realize just what it really means to a person who has it. I mean, I didn’t know what it was when they told me I had it. The truth is a person that has this will look perfectly normal. They don’t look broken…….. they are not bruised or bleeding. They don’t have a deformity that makes their condition obvious either. And, many doctor’s don’t understand it themselves! Many people go from doctor to doctor for years trying to figure out what is wrong with them actually hoping, as I did, that a test would show something wrong because any answer, no matter how bad, is better than not knowing. Fibromyalgia is INVISIBLE but it is real…and there is no cure. I deal with pain every day and so do a lot of other people who have Fibromyalgia and other “invisible” diseases or syndromes.
According to Wikipedia, Fibromyalgia is defined as…
Fibromyalgia causes a lot of pain and a lot of different types of pain. I have muscle pain, joint pain, and nerve pain. It can even affect tendons, ligaments and other connective tissues. That is why I feel as if my bones are hurting when it is actually the connective tissue. Sometimes I feel like I have a charlie horse in between my ribs. That’s the connective tissue. The nerve pain is the most irritating. You know that ‘pins and needles’ feeling you sometimes get when your arm goes to sleep. It’s kind of like that only it feels more like bees stinging me over and over and nothing makes it go away but time. 30 seconds of nerve pain seem like an eternity! I live with this pain all the time…every day and night. I actually have an implanted device in my hip that controls the worse pain through electronic stimulus and I have a remote for it that I have to carry with me every where I go so I can turn it up or down when needed.
I hate it when I go to church or run into someone at the grocery store and they smile and say, “hey, how are you doing?” because I know they really don’t want to know. I hurt. I love it when a doctor asks where I am hurting. It would be much easier to tell them where I don’t hurt and that could change any time.
Fibromyalgia also comes with a lot of fatigue and sleep problems. A friend of mine who also has fibromyalgia can’t get enough sleep no matter how tired she is and I am always sleeping. I feel like I’m sleeping my life away. I want to get up in the morning and see the sun shining in my windows and feel the fresh air at dawn……. but many times I wake up in the afternoon after going to bed early and sleeping all night and I still feel tired. Sometimes I have slept a full 24 hours at a time. I slept through Thanksgiving and Christmas and my husband made the holiday dinners.
Fibromyalgia is also coupled with many other problems. I had no idea that these problems I had were all related. I have RLS (Restless Leg syndrome) and migraines which are some of them. I have horrible dry eyes and have to put ointment in my eyes at night and heavy oil drops in my eyes during the day. That is also connected to Fibromyalgia as well as being highly sensitive to medications and everything else. I can’t handle the recommended doses of the medications they use to treat Fibromyalgia or I would be sleeping all day all the time. I also am allergic to a lot of soaps and cleaners and get random, unexplained rashes. There are many other things that are also related conditions but really, the point that I am trying to make is how hard this is on the people who have this. It seems as if they are falling apart at the seams and many people think it’s all in their heads…… or that they have become a hypochondriac. People start to distance themselves from them and they feel alone. I should say I feel alone. When friends are going hiking I can’t go because even walking around the block is a challenge for me. I can’t go skiing because I have even more pain when I get cold. Just going outside to get in my car in winter time causes me to have too much pain so I miss going to church and most of the time my husband does all the shopping so I can stay home and warm. Even the walking around in the grocery store is hard for me now but I used to love some of these things. I used to be normal! I used to love riding my bike really fast and far…. I loved walking my dog down to the river. I never had any of these problems until 3 or 4 years ago. Slowly over time it has grown into a huge Elephant standing between me and normalcy.
The hardest thing(s) about having Fibromyalgia has been losing my job and losing my friends…. being socially alienated. I loved my job as a CNA/Endo Tech but had to quit because I didn’t want to harm anyone. A CNA is strength and support for someone that is weak, someone who doesn’t make errors when performing tests or taking biopsies or other specimens. Someone who is sure when they are scared. I was when I started but then I became weak and less sure of myself. I was always exhausted with dark circles under my eyes and my hands shook making patients unsure of me. When I was in pain my thinking wasn’t clear. I worried that I would make a mistake or let someone fall. So I quit the best job I ever had. Now I am a “stay at home mom” to 2 teenage boys that no longer need me. Actually, a lot of the time it seems as if the roles have been reversed. When I can’t get out of bed one of my boys will make and bring me something to eat. My youngest son has taken it upon himself to make sure I drink enough water. Sometimes when I’m having one of my marathon sleeping sessions my oldest son will wake me up with a bowl of soup or sandwich or my youngest son will have a bottle of water for me – telling me I haven’t drank anything for x amount of hours.
I’m not telling you this so you will feel sorry for me. I’m telling you this because there are other people who have this too…maybe you work with them or maybe they are even part of your family. Maybe you think they are crazy. According to the National Arthritis Foundation, “The typical fibromyalgia patient is a woman between the ages of 30 and 50 years. Prevalence studies in the United States indicate that fibromyalgia affects about three to five percent of adult women and about 0.5 percent of adult men. Prevalence increases with age but the syndrome is also seen in children.” If you think about how many people there are that is actually quite a lot! So if you know someone with this PLEASE be considerate. Be there for them. Don’t let them hurt alone – in silence. It is hard enough to deal with the pain and all of the issues without feeling like you have no friends or loved-ones who understand.
Below is a poem that I wrote when I was in horrible pain. Back before the doctors had figured out what it was. This was a very low point in time for me and many other people feel this too.
My body ebbs with pain
I want to be whole again
And do my part
Help shoulder the burden
That I helped start
From where I sit
I see things undone
I’m taunted, haunted
By things undone
I pray for relief
I long to break free
Let me out of this prison
that no one can see
Please dear God
Hear my cry
Copywrite Donna Capps
AKA Kay Raisy