National Invisible Illness Awareness Week
|September 13, 2010||Filled under Uncategorized|
As some of you may know I have a chronic illness called Fibromyalgia. It’s considered an invisible illness because to look at me you can’t see that I have an illness. Even though I look healthy I live in chronic pain.
Fibromyalgia causes many symptoms. My symptoms include wide spread pain, extreme fatigue and sleep disorders(something like the fatigue when you have the flu), morning stiffness, chronic headaches, chemical sensitives, cognitive issues (called “fibro fog” my memory is very poor and I will often forget simple words or what I just did), muscle twitches and weakness, anxiety, sleep starts (falling sensations), irritable bowel syndrome, paresthesias (tingling and burning) and many more.
At times in my life I have spend days at a time in bed because of pain, thankfully I’m doing much better now due to my natural lifestyle. It’s hard to describe fibromyalgia pain. Sometimes it feels like their is acid in my veins, other times it feels like someone is stabbing me with a hot ice pick, other times crushing pain and sometimes electric shocks.
I always hurt even on good days but a good day I can live through the pain. I can handle pain very well but being tired all the time is hard. Also the cognitive issues bother me a lot.
Fibromyalgia is one of the reasons I live like I do. I don’t want to take a lot of drugs to cover up my symptoms so I have done a lot of research on natural ways to be better and one thing I kept finding was links with toxic chemicals and Fibromyalgia so I thought I should get those out of my life. A healthy organic diet, yoga, gentle exercise, vitamins, and herbs have helped me a lot.
Another invisible illness I live with cluster headaches. These are different from your everyday headaches and migraines. The pain is so severe they have been called suicide headaches as some people turn to suicide to stop the pain. They also are on one side of the head and are typically shorter than a migraine. Mine last 5-10 minutes but some people have them for a few hours.
The pain is a terrible stabbing pain by or in your eye. Often you also get eye swelling and sinus drainage or stuffiness on the side of the pain. Unlike migraines resting and being in a dark quite room doesn’t help. Most people with cluster headaches will want to find distractions if possible or will walk around or rock trying to get away from the pain. (some even will head their head on the wall)
There are some drugs that help, several migraine medicines help as well as oxygen. I find caffeine can also help me to abort my headaches.
Thankfully I have found what most of my triggers are, they are nitrates, MSG, and many toxic chemicals. By avoiding these I haven’t been having as many headaches. Also thankfully this is a rare condition with only about 0.4% of people suffering from it. I’m extra rare as it’s normally men that suffer from cluster headaches.
Having lived with these illnesses makes me look at people differently. You never know who is suffering with a chronic illness. Telling someone “but you don’t look sick” or “just get over it we are all tired and hurt sometimes” is hurtful to those of us with illnesses. Just because someone doesn’t look sick doesn’t mean they aren’t, so treat people with respect and remember these illnesses are real, our pain is real
If you have a blog and want to help spread awareness for those of us living with chronic invisible illnesses go to Bloggers Unite to find more info.