The Many Obstacles of Living with Chronic 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 chronicchicktalk.
August 23 2008 03:21 pm | Life with Lupus
August 23rd, 2008 at 8:22 pm
You did a beautiful job of explaining what it’s like to live with an invisible chronic illness. We just need to live one day at a time with lots of hope and a good support system.
Keep going GF!
BTW, I’m following you on Twitter now. Follow me back. ConnieFoggles
Connies last blog post..I Hate Cooking
August 23rd, 2008 at 9:08 pm
Ya, sometimes its very hard to explain exactually how it feels to live with this crap. The only word to explain is it “SUCKS”. Need I say anymore
August 24th, 2008 at 7:07 am
That was a really good post and described exactly how I feel most days. I really identify with the planning part, as well. I am a Type A- my career is a professional organizer and since I was diagnosed with MS in January there are days I can’t do anything or days I can function till midday, etc. It is incredibly difficult to accept those limitations and not try to push yourself anyway…thanks for the post!
Melissa, Multitasking Mamas last blog post..Problem with Procrastination
August 24th, 2008 at 12:49 pm
For something so impossible to see, you described in wonderfully. I think we all cope with these same issues and though we are always sorry to hear of others in pain, it’s nice to know there ARE lots of people who do understand if we can find them (don’t you love the internet?)
I specifically thought these were great points you made:
–The hardest obstacle was accepting that I had to live with this illness day after day. (I went through that same thing… didn’t really like the word “chronic” at all)
–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. (Friday night/Sat was one of those for me, worst pain in years, whole left shoulder froze up and the kind of pain you will do ANYTHING to stop NOW!)
–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. (been there, done that; even wrote a book on it to help ME get through that journey (”Why Can’t I Make People Understand? Discovering the Validation Those with Chronic Illness Seek and Why”) and the ironic thing is… when you are the author and then you read your book 2 years later, you can’t really argue with the author not getting YOUR experience!
– 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. (And it varies minute to minute for me too. Got out of the car at a restaurant last night and this elderly couple was sitting outside probably wondering why I was moving so slow.. and just as I got in front of them my whole knee cap slid into another place and I leaned over and gasped. They looked at me and I said, “Bad knees.” But the weird thing? Part of me was glad they knew something was seriously wrong and I didn’t just look like I was poking along…, lazy or something)
– Before I got sick I could plan things, now I can only have tenetive plans. (Yep, my saying to most things is… “Lord-willing!”)
Thanks for your blog, I’m enjoying reading it and your writing style too!
Lisa Copen
Founder
National Invisible Chronic Illness Awareness Week
http://www.invisibleillnessblog.com
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August 24th, 2008 at 2:36 pm
I can totally understand the not being able to function some days. Some days I feel like I haven’t slept in years and simply go through the motions of things.
August 24th, 2008 at 2:40 pm
Lisa,
Thanks for your long comment and response to my post. Planing is something of the past
September 3rd, 2008 at 11:05 am
hey.. i enjoy reading ur blog so much.. even though i just stumbled upon it while googling.. i have sle too.. it sucks.. i must say it ruined almost everything i thought would be great for me.. learning how to face it, deal it and accept it is !@#$%^&*..
but time flies it’s almost 5 yrs since i got lupus.. i didn’t realised that till i start typing this to you.. but ur posts are so encouraging and real for an sle patient.. the anger, the annoyance, the ranting, the pessimistic etc..
do keep on posting in ur blog.. i’ll be here encouraging you on the other side of the world..
kristy
September 3rd, 2008 at 11:00 pm
Kristy,
Thanks for visiting my blog. Yes, Lupus sucks sucks !
chronic chick