Archive for October 27th, 2008
GUEST BLOGGER: The Daily Challenges of Coping with Invisible Illness
Living with an invisible illness comes with a lot of obstacles. The hardest obstacle was accepting that I had to live with this illness day after day. It took me a long time to accept it. I went through long periods of deep depression. I had questioned the purpose of my existence. I have yet to figure out exact ally why I’ve been dealt a hand of cards full of pain and suffering, after a childhood full of dysfunction. I can only hope someday that will become clear to me.It’s taken me years to deal with all it sends my way. My eyes finally opened up the day that my neurologist validated my leg pain of four years. I had complained about my leg pain symptoms for four years, with not one doctor running a test. All it took was a doctor to listen to my symptoms and react. The neurologist ran an EMG to find out what was wrong with me. It was one of the most painful tests I’ve ever gone thought’s was diagnosis with nerve and muscle damage in both legs and both arms. My legs are worse then my arms. But I finally felt validated and not crazy.
Some days, I don’t feel so bad and then there are other days that I just plain feel like every train in town is out to get me.
I think the one of the hardest things to accept is the reactions of people. There’s been many instances of me being told that I did not hurt that much or doctors ignoring my symptoms. It really hurts when people say you can’t hurt that much. I have to remind myself that it is my body and I am the one living with the chronic illness, not them.
For a long time I became very angry about there reactions to my illness. I’ve come to believe that if they want to be in denial its there business and I can’t let that define me. It still does bother me when people avoid that I even have a chronic illness. Some people find it easier just too totally avoid the topic of your illness. Once again it’s easier for them to live in their own denial.
Another hot topic is the fact that sometimes I use a wheelchair and sometimes I walk. Let me tell you I use both because I need to use them. I cannot walk too far or I will pay for days with extreme pain in my legs. Short distances are not so bad or if I know I can sit down from time to time. Then there are days I can’t walk at all.
Each day is a new adventure for me while living with lupus, fibromyalgia and its side dishes. I can never plan to have a “good” day because of these illnesses. Before I got sick I could plan things, now I can only have tenetive plans.
The many aspects that these illnesses have brought for me at times are overwhelming and I’ve learned to deal with them the best way I know how. One of the main ways I deal with living with lupus, fibromyalgia and its side dishes is spreading awareness of the chronic illnesses on my website
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