LOVING LETTER TO MY “NORMALS” (To: Those (happily) who have not been diagnosed with Intractable Pain/Chronic Pain and have no idea what Fibromyalgia is like to live with.)
Dear Family and loved ones;
I have been hoping for years that you would all be able to understand this illness I have, and maybe even along with myself help advocate for more research and more education. It can start here. It can start with just you & me.
Fibromyalgia: This diagnosis, this explanation for the chronic wide-spread pain and tenderness isn’t all in my head, and it isn’t contagious. It is not terminal, nobody ever died just from fibromyalgia (though they might have wished they could on really awful days) There also has to be something said about the school of reality that some people can and do die from Chronic Intractable Pain. (CP & IP) If you want to read articles or books about fibromyalgia I can share with you some that I think are fabulous. If you just want to learn as we go along, that’s fine too. This is definitely going to be a process.
The first step for this process is for you to believe that there is an illness called fibromyalgia. And that I have it. Most of you do, but there are still some doubting Thomas’. This is for you:
Fibromyalgia is a high maintenance condition with lots of different kinds of symptoms. Too many to discuss here. There’s no way to just take a pill to make it go away, even for a little while. No way to exercise it away. I have tried. Sometimes a certain medication can make some of my symptoms more bearable. Sometimes I can have an adverse hyper sensitivity to a drug and that can cause a whole new set of issues. That’s about the best I can hope for. Other times I may take a lot of medication and still won’t feel any better. That’s just the way it goes. I can’t control how often I feel good or when it is I’m going to feel terrible. Lots of people have been cutting new drugs advertisements out of magazines for me and I appreciate the thoughts, but I’ve seen them too. I look at the list of side effects and the few symptoms they may help to make my choices. No matter how happy the people in the pictures look, there’s still no miracle drug available. Not for me. Not for most people living with CP/IP regardless of its origins. There’s no cure for fibromyalgia and it won’t go away.
If I am functioning normally for me, I am having a good day. I may have saved up for it. This doesn’t mean I’m getting better — I suffer from chronic pain and fatigue for which there is no cure. I can have good days, several good days, weeks, months, or even a few good years. But a good morning can suddenly turn into a terrible afternoon. I get the feeling like someone has pulled out a plug and all my energy has just run out of my body. Think energizer bunny who has wound down. I often refer to feeling like I have been hot by My Mack Truck when my pain levels spike beyond any kind of relief I am able to access. I might get more irritable before these flares, suddenly get more sensitive to noise, or just collapse from deadening fatigue and frightening pain. Weather changes can have a big effect on how I feel. Temperature extremes can have an effect. Other times there may be no warning, I may just suddenly feel awful. I can’t warn you when this may be likely to happen because there isn’t any way for me to know. Sometimes this is a real spoiler and for this I am sorry. This may be one of the hardest things to contend with. The sadness I feel for what my illness does to those around me is more than I can easily describe, or often bare. I am no longer the fun-loving person — and it hurts me that I am no longer what I once was.
Fibromyalgics have a different kind of pain that is hard to treat. It is not caused by inflammation like from an injury. It is believed that it comes from the central nervous system in our brain, short circuiting. But little is still known. It is not a constant ache in one place like a broken bone. It moves around my body daily, hourly, and changes in severity and type. Sometimes it is dull and sometimes it is cramping or prickly. Sometimes it burns Sometimes its jabbing and excruciating. If Eskimos have a hundred words for snow, fibromyalgics should have a hundred words for pain. Sometimes I just hurt all over like I’ve been beaten up or run over by that Mack Truck. Sometimes I feel too tired to even lift up my head. Besides pain, I have muscle stiffness which is worse in the morning and evenings, mornings being the roughest time for me. Sometimes when I get up out of a chair I feel like I am ninety years old. I may have to ask you to help me up. I’m creaky and I’m klutzy. I trip over things no one else can see, fall off stairs. I bump into the person I am walking with. I regularly drop and spill things because my fingers are stiff and my coordination is off. I just don’t seem to connect the way I should. Hand-eye, foot-eye coordination, it’s all off. I walk slowly up and down stairs because I’m stiff and I’m afraid I might fall. When there’s no railing to hold on to, it’s terrifying. I’ll wait until I can no longer if that is where the restroom is if there is no railing. Because I feel bad most of the time, I am always pushing myself, and sometimes I just push myself too hard. Always trying to make up for what I feel I am lacking in my productivity in life. When I do this, I pay the price. Sometimes I can summon the strength to do something special but I will usually have to rest for a few days before & afterwards because my body can only make so much energy. I pay a big price for overdoing it, but sometimes I have to.
I know it’s hard for you to understand why I can do one thing and not another. It’s important for you to believe me, and trust me about this. My limitations, like my pain and my other symptoms are invisible, but they are real. Another symptom I have is problems with memory and concentration which has been termed fibro-fog. Short-term memory is the worst! I am constantly looking for things. I have no idea where I put down my purse, and I walk into rooms and have no idea why. Casualties are my keys which are always lost, my list of errands, which I write-up and leave on the counter when I go out. Even if I put notes around to remind myself of important things, I’m still liable to forget them or forget the notes. I may be holding a conversation with you one minute just fine and the next look like a deer caught in head lights because I forgot what we were discussing. Don’t worry, this is normal for fibromyalgics. Most of us are frightened that we are getting Alzheimer’s. New kinds of brain scans have actually documented differences in our brains albeit not Alzheimer’s.
I mentioned my sensitivities earlier and I need to talk about them in more details.. It’s more like an intolerance to everything. Noise, especially certain noises like the television or shrill noises can make me jittery and anxious. Smells like fish, some chemicals, fragrances or perfume can give me headaches and nausea. I also have a problem with heat and cold. It sounds like I’m never happy but that isn’t it. These things make me physically ill. They stress me out and make my pain worse and I become even more exhausted. Sometimes I just need to get away from what ever it is that is causing my reaction. I just don’t know how else to say it. I know sometimes this means I will have to go outside, or out to the car, or go home to sit alone and that’s really all right with me, but I worry about the people I have left .
I’m shy about others seeing me in pain and often need to be alone. You may remember me as a light-hearted. I don’t want or need you to give up doing what’s important to you. That would only make me feel worse. Sometimes when I feel lousy I just want to be by myself. When I’m like this there’s nothing you can do to make me feel better, so it’s just better to let me be. I have problems sleeping. Sometimes I am unable to get to sleep at all, and other times I get really restless sleep, wake up and can’t get back to sleep. Other times I fall into bed and sleep for fourteen hours at a time and will still be feel exhausted upon waking. Some nights I’ll toss and turn and not be able to sleep at all. Every little thing will keep me awake. . I may have other symptoms and health issues like TMJ disease, migraines, irritable bowel, chronic muscle spasms and pelvic pain, not to mention the problems with my neck that will take their toll on our friendship.
Some of these symptoms are embarrassing and hard to talk about but I promise to try. I hope that you will have the patience to see me through these things. It’s very hard for me too because I love you and I want to spend time with you.
I have made a promise to myself and now I am making it to you: I will try to set aside time when we can have a cup of tea, a chat or two. . During that time we will not talk about my illness. Though I may not always show it I love you a million times more for standing by me. Having to slow down physically and having to get rid of unnecessary stresses will make our friendship even stronger.
I am most grateful for your time and attention. I’d like to think you will be sharing this letter with your family and loved ones. I believe that more we know the better we can all get along, in every aspects of our world~
” Life is short, Break the rules, Forgive quickly, Kiss slowly, Love truly and tenderly, Laugh uncontrollably, And never regret anything that made you smile.”