Wednesday, December 8, 2010

Dear People...

I suffer from a chronic illness. It is exhausting and painful and sometimes I will complain and cry. Some days I cannot get out of bed. Some days I feel great and run around like a crazy trying to get caught up on my life. On most I try to balance between the two extremes, for that is where my best success lies. I still have responsibilities and obligations and it often seems that they will take me down. But they don't, at least not for very long. I strive to be a good spouse, partner, parent, employee, sibling, child, friend and anything else that may apply to my life. But I have to set limits. The limits are with myself, for the longer I live with this illness the more I learn about what I can and cannot do to still maintain some semblance of a quality of life. The limits often come across as harsh and selfish, like I am only considering myself. In a way I am, but it is self-preservation, not self-indulgence that motivates me. I cannot engage in the myriad of activities I once did and often have to "sit" out on the fun stuff. I feel horrible about it but try and keep a smile on my face and pretend it does not bother me. I tell you its okay for you to go. The last thing I want to do is ruin your life too.

I have moments of desperation, excruciating pain and fits of rage and anger. I am also full of love and hope and a strength few possess. For to live in the pain I live in, do the things I do to maintain the illusion of normalcy, the lengths I go to in my efforts to preserve a quality of life, those are not for the weak of heart. I am as strong as they come and my reality now dictates that I fight for myself every day of my life. I am often at the mercy of side-effects of medication and exhaustion and can be snappy. I am sorry if I take my frustrations out on you. It is not you I am mad at, it is the diminished capacity I am left with because of this chronic illness.

When I got sick I went to the doctor. They could not find a reason for the pain and ran an exhaustive list of tests attempting to source out the problem. They could not find a medical abnormality so they gave it a name by diagnosis of exclusion. A name the medical community invented, yet sectors of it refuse to "believe" in. Many have blamed me. I have been labeled crazy, lazy, wimpy and a junkie. I have endured emotional abuse in my efforts to get out of pain so I can just get back to living my life. This illness will not kill me, but until a cause and cure are found I will have it forever, so it is something I cannot ignore and must learn how to manage. My life has not turned out like I thought it would, my health is the center of my universe and the ease with which I am knocked off my axis surprises even me sometimes. But I still have hopes and dreams, goals and ambitions. I still want to laugh, love, enjoy and savor. I still want to experience all life has to offer. So please bear with me as I navigate my way through this journey. I am seeking my balance. I am searching for my limits. I am putting everything I have into getting through each day, and at the end of each one I am still me...

Thanks for joining,
Leah

14 comments:

  1. That is so true hun, Thanks for sharing this, xx
    P.S am going to post this on my wall also to get more awareness out there, Hope your having a flare free day xxx

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  2. I am losing a good friend due to this illness but have heard all her compliants and issues. But if I mention having a bad day, it is, well you just need to get out of the house more. That hurts to no end sometimes, I think you act like a stomache is a huge issue, but here I am in so much pain, keep going and going, keep pushing. Sometimes just dont tell her how bad it is. I feel so much more for someone when they are having any kind of pain, but for your dear friend to be this way, it gets hard. Our friendship is dying, I have done what know to do. But the belittling, comments, and saying oh just take a pain pill gets old.
    Saw your picture with fibro t shirt, love it, I want to get fibro shirt soon.
    XO Sheila Lewallen

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  3. Sheila I will be selling "The Fibromyalgia Crusade" shirts soon! Stay tuned ;)

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  4. Thank you for saying what we all feel everyday and saying it so eloquently.

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  5. Thanks for saying how important it is to set limits on ourselves and others. I think that is the hardest part. Just the other day I had to disappoint my husband who wanted to take a day trip 2 hours away. I had to explain that I could not do that and another scheduled activity in the same weekend. It is so hard to say no but I must or be even more miserable.

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  6. So well put, I could copy and paste and scream it to the world! Good for you for standing up for self-preservation- I totally get that, and unfortunately, many don't. Thanks for your bravery for facing this illness head-on and not backing down!

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  7. I was officially diagnosed with fibro last week. It took 3 years, 7 doctors, too many MRIs:MRAs:CT scans, blood tests to get here and i hope that i will now get better. Lost my ability to take long walks, golf and ski (which i have done all of my life) due to the excruciating pain which only seems to get worse each year. tylenol doesn't seem to make a dent in the pain and percocet (et al narcs) puts me up in the sky. Look forward to hear what you folks have to say. Oh yes, I am one of the 1 in 9(?) males with fibro.

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  8. Leah, thank you. Sheila, I'm so sorry you are losing your friend. It's so darn hard to lose someone you care for so deeply. I know, I've been there. But as it turns out, I was always there for her.....when I really needed her, she was not there for me. Your friend will deplete you because she cannot understand you and will continually judge you. She wants you to fit her mold. It's too bad when people can't accept us as we are. You cannot waste your precious time or your limited energy on her. You need all of your energy for yourself.

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  9. Every word, true to the core, speaks for each of us with fibromyalgia. Thank you for putting into words what we deal with daily. Lilacs & <3 for you, Leah!

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  10. Its still amazing to me that others can so well understand how I feel when most folks I know have absolutely no idea. thanks for being so willing and able to give words to how we feel.

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  11. Thank you for posting this! I believe lots of fibro sufferers - such as myself - can relate to your words!

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  12. Leah....you posted this on my birthday! A day when I had just told my mother YET AGAIN..that I was not going to engage in a verbal war with her. That it was my BIRTHDAY!! And I deserved ONE day of peace from her negativity!! (I didn't SAY that out loud!!) I wish I could just TELL her what your blog post says!! It's beautiful!!!

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  13. Sitting at home missing another xmas party and I found your blog. This is great. It brought tears to my eyes because they are the words that I am unable to express--with understanding.

    Soft hugs Leah

    M--Cleveland, Ohio

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  14. A good friend of mine sent your blog to me a while ago. I'm sitting here reading it for the first time and kicking myself for not reading it sooner. There are so many ways that I can relate to your story. I look forward to your next entry as to not feel alone anymore. Also the comments from other Fibro suffers, the understanding that you can only get from others suffering from this strange disease. I thank you, I now have a place where I feel I belong.

    Evansville, IN

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