Sunday, August 30, 2009

30 Things About My Invisible Illness You May Not Know

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Fibromyalgia and Osteogenesis Imperfecta

2. I was diagnosed with it in the year: Fibro: 2005 OI: 1997

3. But I had symptoms since: Feels like forever

4. The biggest adjustment I’ve had to make is: Planning ahead and stopping when my body tells me to

5. Most people assume: I live with a "normal" amount of pain and that I should just deal with it

6. The hardest part about mornings are: Everything-- I hate mornings, my body is ridiculously stiff

7. My favorite medical TV show is: House!!

8. A gadget I couldn’t live without is: My cell...I don't really use gadgets to help my Fibro

9. The hardest part about nights are: Getting to sleep, sometimes the pain is too bad to let me sleep

10. Each day I take __ pills & vitamins. (No comments, please) 8

11. Regarding alternative treatments I: am open to them and welcome any suggestions

12. If I had to choose between an invisible illness or visible I would choose: Is neither an option? lol I suppose invisible, that way I can appear to be just like everyone else

13. Regarding working and career: I'm scared of what limitations my illness is going to create for me and that I'm afraid that people will not respect me as much as my peers

14. People would be surprised to know: That I really struggle with the emotional and mental aspects of being in pain all the time

15. The hardest thing to accept about my new reality has been: That I can't do everything I've want or have wanted to.

16. Something I never thought I could do with my illness that I did was: ?

17. The commercials about my illness: provide a totally unrealistic picture of what Fibro is like

18. Something I really miss doing since I was diagnosed is: Being relatively carefree

19. It was really hard to have to give up: Doing all sorts of fun activities with my friends

20. A new hobby I have taken up since my diagnosis is: Blogging

21. If I could have one day of feeling normal again I would: Play sports and run and laugh and have great sex lol

22. My illness has taught me: To be patient

23. Want to know a secret? One thing people say that gets under my skin is: everything (regarding my illnesses)...stop giving me advice if you have no idea what I'm going through

24. But I love it when people: Understand me and offer to help me with something, or completely understand that my pain limits the things I can do

25. My favorite motto, scripture, quote that gets me through tough times is: way too many to list

26. When someone is diagnosed I’d like to tell them: it's time to get organized and don't settle for something--fight for what you believe is right

27. Something that has surprised me about living with an illness is: How much wiser and well-versed I am because of the situations I've been through

28. The nicest thing someone did for me when I wasn’t feeling well was: simply hold me and tell me that they understand and that they will help me get better

29. I’m involved with Invisible Illness Week because: We need to become visible!

30. The fact that you read this list makes me feel: Honored

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

13 comments:

  1. your honesty is open and one can tell from the heart....many people choose not to see the real us...:)

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  2. i hope you get a chance to check out my blog...

    http://throughthewordsofchronicpain.blogspot.com/

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  3. I totally understand. One things that really bothers me most of the time are my pillows at night. They just hurt so much, I keep buying different ones, even expensive ones, they all seems to cause pain most nights.

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  4. Tricia--what's so weird is that I'm the most comfortable in the most unusual places...I need to sleep on a hard bed with hard pillows...I'd be much more happy sleeping on the floor to be honest lol

    I hate shopping for pillows, mattresses, mattress covers, etc...I'm never satisfied.

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  5. Amen on the pillows, mattresses and sheets! That Ewe Cuddle mattress cover thingy always ends up sliding off the bed.

    And I've got one (and only one) pillow that I dearly love and will not part with. I've had it, oh jeeze, at least a decade (oh my...tough, I'm keeping it!) it's a goosedown pillow.

    Between that and my husband I can, most of the time, find some sleep.

    And Jenn, I get the mental and emotional aspect...sometimes I think that's worse than the pain itself.

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  6. Managing life while being in so much pain is really a big challenge and indeed requires a lot of courage! It's good that you share your experiences through this blog ...... this gives inspiration not only to the people who have Fibromyalgia or any other chronic disease but also for the the rest of us who are blessed to be physically pain-free and healthy. Thanks for sharing :)

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  7. Thanks so much for the sweet words Meam! I truly appreciate it!

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  8. Thank you so much Jen. As you know I am also blogging for Invisible Illness Week but I wasn't going to do this post (30 things). After, reading yours, you inspired me to it. Thank you.

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  9. Hi Jenn! I have finally gotten around to blogging & checking out your blog. I really love this blog entry here & I can answer many of those questions quite the same way. Chat with you soon!

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  10. Jenn, you are such a special soul. Thanks for your honest and heartfelt answers. I hate what we have in common, but I love feeling like I know you a little bit better.

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  11. I love your blog, great to learn more about you! I have fibro too and the best thing I've found for stiff mornings is my ChiliPad - a mattress pad that lets you cool down (or heat up) your bed, mine lets me set any temperature between 46 and 118 degrees. It helps with pain and I have been getting more sleep because I'm not woken up by pain as easily. Hope this helps!

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  12. I was diagnosed with fibromyalgia four years ago, and I have been struggling daily just to get out of bed and go about my day. The treatments in the book "Beat Sugar Addiction Now!" by Dr. Jacob Teitelbaum (http://endfatigue.com/) have made a huge difference in my life. I am not cured, but my symptoms are much less and I have a lot less aching and less pain..........I feel that the SHINE protocol which is described in detail here has made such a huge improvement in my quality of life. I was surprised to see thatt he author had suffered with this same condition and had used the treatments he describes here to treat himself and to get himself well enough to complete medical school and live a good life. Knowing that he has been where I have been makes all the difference as far as I am concerned. Dr. T is one of the foremost experts on Fibromyalgia and CFS in the country - be sure to follow him on Twitter: http://twitter.com/DrJTeitelbaum

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