Tuesday, May 12, 2009

head, shoulders, knees and toes



Today is Fibromyalgia/Chronic Fatigue Syndrome (myalgic encephalomyelitis) Awareness Day, though relatively unknown, a lot of people suffer from one or both of these chronic illnesses. I was diagnosed a year and half ago with both, and while it is comforting to have a reason for what I was feeling, it is not fun. It is hard to explain what it feels like to have your whole body hurt. Or being called lazy for not being able to get out of bed. It isn't that I don't want to, it is just that I feel like I am laying under a ton of bricks and cannot move. When I first started blogging I thought I would keep the fact that I suffer from FM/ME to myself. But as I became more involved in Twitter and other social media, I realized that it is a great comfort to have people out there who, unfortunately, can relate. Being that it is FM/CFS/ME International Awareness Day, I thought I would do my part and share my story.
I have always been tired and have always had trouble sleeping. I just thought it was the way I was built, but people could never understand why I was always tired. Or why my back, neck & knees would hurt (not to mention elbows and hips). "Head, shoulders, knees & toes" is not a childrens song for me, but a list of all the places that I hurt. I couldn't understand how people could wake up in the morning feeling "refreshed." I never once knew what that felt like. It has always been a struggle for me to get out of bed in the morning. And, as tired as I am, it takes forever for me to fall asleep. Add panic & anxiety disorder plus ADD to the mix and you're in for one helluva ride! Well, over time I've learned to deal with the anxiety and ADD and hopefully I'll be able to deal with the pain and fatigue soon also. It is not fun to feel like an old lady when one is only in her mid-thirties. It is hard to explain certain sensitivities too. I am more sensitive to touch and smell, heat and cold. I hope this post helps those who don't have it understand and be able to sympathize; and for those who do, I truly empathize.

10 comments:

  1. Kathy Coomer (Tangelobaby)May 12, 2009 at 3:48 PM

    I know exactly were you are coming from. Great post and thanks for sharing.

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  2. i dint no wot wos jesska an they do be big werds for me. i fink i giv yoo lost of uggs to elp yoo feel betta. from yor frend Henry on twitta

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  3. Thanks for sharing this Jessica a great post which I hope health professionals/media/public will start to recognise.

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  4. Thanks! I wasn't always so open about it but I realized that by being open about fibromyalgia and chronic fatigue syndrome, I could teach people something. I have also learned so much for the wonderful people who support me day by day through the struggle. We are definitely not alone even though on the worst pain days, it feels like we're in our own personal kind of hell.

    If you'd like to read my posts on fibromyalgia, check out my blog: http://www.alizahausman.net

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  5. Great post and think it does help those who suffer from this nasty disease to realize they're not alone and have others who can understand how they feel.

    Agree with Henry, should have lottsa little bear hugs to try to make you feel better all the time. Hope they find a cure for this disease very soon and you have lots more better days than worse ones.

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  6. I didn't know there was a day for this and really didn't know much about it. Thank you for filling in that void but I am sad to hear it is an affliction you suffer with! I send you wishes for good health and wellness!

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  7. Nina and HoneybellMay 12, 2009 at 8:49 PM

    Hi Jessica,

    In celebration for Fibromyalgia Day, Honeybell and I, (Nina) slept and had a wonderful nap due to FM! Wish one day, someone could help us all with this but until then, we shall help each other and keep laughing, that helps a lot! Thanks Jessica for the blog

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  8. Great article. I too know whereof you speak. I have RA and have struggled with it for four years. It's not fun but it can be funny. I am @princessthecat's She-Staff, @beadqueen aka Kathy.

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  9. The Beardoctor has found that however bad an illness may be, it seldom hurts as bad as the ignorance of people that should know better, i.e. medical professionals.
    Finding a cure for many illnesses is urgent but maybe not as urgent as educating people. So Hurray for al awareness days.

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  10. It would be great to see you blogging for ME/CFS Awareness again in May 2010.

    Remember to sign up to the list at http://meaware.wordpress.com so we can collate a list of those who are blogging for ME/CFS Awareness this year.

    Thanks

    Rachel

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