Wednesday, January 25, 2012

30 Questions about My Silent Illness

I get so tired of people telling me how I don't look ill...just a little tired looking they tell me. I found this questionaire on line at Invisible Illness Week blog after reading one on a blog I follow. Linda and her daughter Pea both have ME/CFS and have had it for over 20 years.
Linda's blog is Lindy's Musings From an M.E. Mind.
Check out both sites you will be glad you did. Lots of useful info there!

Now on to the 30 questions!

1. The illness I live with is: ME/CFS and Fibromyalgia
2. I was diagnosed with it in the year: 2010
3. But I had symptoms since: 1990
4. The biggest adjustment I’ve had to make is: loss of identity and mobility
5. Most people assume: I look healthy but a little tired and some even think I may be faking it! I love it when people tell you you just need to push yourself a little more!
6. The hardest part about mornings are: getting out of bed and dealing with life when my brain is still asleep!
7. My favorite medical TV show is: Private Practice
8. A gadget I couldn’t live without is: my cell phone
9. The hardest part about nights are: not being able to sleep. If I do get to sleep I wake up every hour or so.
10. Each day I take _18_ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: am cautious at trying many cause it can cause a set back of weeks if it doesn't work.
12. If I had to choose between an invisible illness or visible I would choose: The devil I dance with right now. I can manage it more or less.
13. Regarding working and career: I can't work and I am on social security disability.
14. People would be surprised to know: I am still me with the same hopes and dreams
15. The hardest thing to accept about my new reality has been: the pain and inability to do the things I used to take for granted.
16. Something I never thought I could do with my illness that I did was: take a long plane trip and not be in bed for a week!
17. The commercials about my illness: Fibromyalgia is getting air time but the ME is not.
18. Something I really miss doing since I was diagnosed is: Gardening and working about the house and yard!
19. It was really hard to have to give up: my job as an RN. I created a new one as an artist! It is really fun too!
20. A new hobby I have taken up since my diagnosis is: painting
21. If I could have one day of feeling normal again I would? I don't think I would know what to do anymore cause I have scaled my life back to meet the illness demands.
22. My illness has taught me: to conserve energy and take medications as I need them and to not worry about addiction to Ibuprofen!
23. Want to know a secret? One thing people say that gets under my skin is: you don't look sick...what is sick suppose to look like? Or you will feel better if you start going to sleep at night! I would love to!
24. But I love it when people: wow you are looking good? Lost some weight?
25. My favorite motto, scripture, quote that gets me through tough times is: Women are like teabags. We don't know our true strength until we are in hot water!
Eleanor Roosevelt
26. When someone is diagnosed I’d like to tell them: learn your limits and stay within them it makes life so much easier. Don't keep trying to be who you used to be cause you never will be that person again. Adapt!
27. Something that has surprised me about living with an illness is: that you can adapt and loved ones help you with it. I don't know where I would be without the support of my daughter and husband! Probably in a nursing home!
28. The nicest thing someone did for me when I wasn’t feeling well was: come sit with me and talk about the world, watch a movie, just be there for me.
29. I’m involved with Invisible Illness Week because: Maybe I can learn something new or teach someone else that has an invisible illness to cope a little better!
30. The fact that you read this list makes me feel: happy. Maybe I reached just one and spread the word.


mckinkle said...

Very enlightening
Keryn x

505whimsygirl said...

Interesting post. I like the 30 thought provoking questions. I'm starting to sleep better, with a little help from a little pill..... I have sleep apnea so am VERY attractive at night ;-) My dogs still love me so that's a good thing. Also, I find the air coming from the ventilation of the machine to be cooling in the hot summer months. I still wake up at least once a night; falling to sleep can be a challenge sometimes though.

I know exactly how you feel about having an illness that doesn't make me look sick. People don't understand just how bad you might feel - until I get up from my chair and have to walk about 20 feet before I'm actually standing straight!

Thanks for sharing your story!


James said...

Will you please post a link to your Blog at The Fibromyalgia Community? Our members will appreciate it.
Members include: Those living Fibro, Family and Friends, Experts, Support Groups.
It's easy to do, just cut and paste the link and it automatically links back to your website. You can also add Articles, News, Photos and Videos if you like.
Email me if you need any help or would like me to do it for you.
Please feel free to share as often and as much as you like.
The Fibromyalgia Community:
I hope you consider sharing with us.
Thank you,
James Kaufman, Editor
My wife Julie lives with Fibro

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