So....
I don't know when I started beginning my sentences with the word "so". It is actually kind of annoying to even myself, so I presume it is annoying to you as well... it's kind of like the word "like"... you remember back in the 80's, the movie Valley Girls? I think this must have been Nicholas Cage's first movie....hahaha... anyway, they used the word like, like every other word... so annoying. I really must try to stop starting my sentences with the word "so"! So anyway, what the heck was I going to write about....LOL!
Oh Yes... now I remember...
I want to talk about invisible diseases. The ones where the person suffering from them are in pain and have to deal with it day after day, when those around them can't see any symptoms, and therefore they have a hard time wrapping their head around what is really going on. There are many of these diseases that are a mystery to people unless you suffer from them and then they are very real... Lupus, Arthritis, Fibromyalgia, Depression, Anxiety, just to name a few. I suffer from symptoms of fibromyalgia. Fibro is still somewhat of a mystery because the medical community doesn't know a lot about it, what causes it, or how to cure it. All they can do is treat the symptoms. I first went to the Dr when I noticed that I had a lot of pain all the time. I was cranky because i just felt achy like I had the flu all the time. I just wanted to lay around and sleep. It got worse and I couldn't keep weight on. I really thought I had arthritis...
So, the Dr (there I go again...hahaha) determined I had no antibodies indicating arthritis and that I must be depressed and put me on anti-depressants. It didn't make the pain go away and then I started having heart palpitations from the meds. Back to the Dr I went and this time he listened to me and did every test imaginable. Through a process of elimination when all the tests came back negative, he determined that I must have a condition called fibromyalgia. What the heck? I had heard of people talking about this and to be honest, I had been one of those people that thought they just used it as an excuse when they wanted to get out of doing something.
I couldn't have been more wrong.
So (hahaha... I can't help myself) what exactly is fibromyalgia?
Here are the gory deets from my particular symptoms...
The definition actually changes every few years as more becomes known. It is currently thought to be caused by overactive nerves. A person feels pain in multiple quadrants of the body. Most people have certain trigger points where the pain starts and then it just spreads throughout the body from that point. There is a vicious cycle you go through... you don't sleep because you have so much pain in your body... then you wake up in more pain because you didn't get the really restful sleep when your body regenerates itself.... then you can't sleep because of the pain. Muscles get really tight and it almost feels like arthritis. Another thing about fibro patients is that they all experience the disease in different ways and we all react to the treatment in different ways. I have tried almost every pain medication on the market. Some have worked and some have had side effects that are worse than just dealing with the symptoms. I have tried exercise and the strain on the muscles causes a very negative reaction that causes what we call a "flare up", which is when the symptoms are a little more extreme than what we normally experience. A flare up feels much like having the flu. You feel weak and achy and sometimes even a bit fevered. My legs feel like they are on fire and it hurts my skin to have even soft loose clothing rubbing on them. I get muscle spasms in my back that are so strong, they sometimes pull my rib heads out of place. The bones in my back are frequently out of alignment and going to the chiropractor is futile because by the time I get back home, they are back out of place. The pain in my back will cause a migraine and then bad things happen. I morph into some kind of monster mommy. The best thing I can do is put myself into time out...haha.... actually it's not funny. It so the opposite of funny, that the only sane thing to do is laugh about it.
What do you do for the symptoms?
Like I said earlier, every person reacts differently to their unique set of symptoms. I take medication now to try to break the cycle of not sleeping. By getting restful sleep, it makes a huge difference in how I feel the next day. For me now, sleep comes at a price. I have about 30 minutes after I take them before I must be horizontal or I will be stumbling around like a drunk, bumping into walls and drooling on myself... glamorous image, isn't it...LOL
The other thing that I have found that is very helpful is to stretch out the muscles... gently! If I can keep things loose, then it seems to help with some of the pain. Massage helps with that as well. I don't like to pay for massage, because there are things that our family needs more and using the money for myself seems selfish, so it just stresses me out, so I don't do it often. What I try to do instead is get my family members to help me with this. When the muscle spasms in my back get really bad, I have Wayne or one of the kids use their elbow to grind out the knot in my back. ( Ewww... I know!) This is really painful, but it's kind of a hurts-so-good kind of thing. While the things I am doing to manage the pain, don't take away the pain, it does make it manageable enough that I no longer take prescription pain medication. I can usually manage with OTC meds (very, very large doses of OTC....hahaha).
I have now come to terms with the fact that this will never go away, the only thing I can do is learn to live with the symptoms and try to not let it win.If you know someone who suffers from an invisible illness, there is not much you can do for them except stand by and watch them suffer.... Compassion IS one thing you can offer them.... and maybe some chocolate.....lol! If someone you love is suffering in silence, please be compassionate and understanding with them. It makes all the difference in the world!
No comments:
Post a Comment