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.

Pediatric CFS/ME

Just read an article about Pediatric CFS/ME! I am really having a hard time with the concept that a child can come down with this crap. I know what I am dealing with but to think of a small person having it makes my heart cry. How do you tell them they will never be able to run, play, and be a normal child ever again?

Tuesday, January 24, 2012


I meant to update this blog more frequently but I seem to be failing on that aspect right now! I won't promise to blog more often but...lets take it one day at a time so to speak.

I am not feeling really hot right now! I don't know why or what the cause is but I feel like I have been run over by a Mac truck. Probably all about this damn disorder/syndrome/or whatever you want to call it but my head is foggy and I can't seem to concentrate or remember well today. I fell again getting out of bed so I need to remember to do the exercises to get my muscles ready to hold my body and speaking of body!! My body hurts ALL over today and it feels like I have a bad case of the flu. I can't seem to stay normal temp either because I am either hot or cold. Not that the temp issue is anything new cause that has been going on for years. I lack any umph! I hurt too bad when I lay down, I hurt when I sit up and getting up or down is an issue. I am tempted to take a pill and go to bed and just stay there.

Has anyone been following the discussion on Research 1st regarding ME vs CFS? I have to agree that CFS has bad connotations now cause there isn't a definitive diagnosis that goes with it. It sounds better when you say myalgic encephalomyelitis instead of chronic fatigue syndrome! A friend told me that CFS sounds like someone is just lazy rather then having a real disease like the -itis gives to ME! I hadn't thought of it that way but it does sound more legitimate doesn't it.

Has anyone read the Research 1st analysis of the criteria to be diagnosed with CFS/ME?
International Consensus Criteria Published for Myalgic Encephalomyelitis K. Kimberly McCleary, President and CEO of Research 1st talks about the recent publication of criteria defining CFS/ME. This is a graph of the new criteria overview that was presented in the article and is to be used for diagnosis of the disorder.
Go check it out! The original article titled Myalgic encephalomyelitis: International Concensus Criteria was published in Journal of Internal Medicine
Volume 270, Issue 4, pages 327–338, October 2011 and is available at the link for anyone to read. It wasn't hard to understand and cleared up a few issues for me.