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Tuesday, September 1, 2009

30 Things About My Invisible Illness You May Not Know

1. The illnesses I live with are Fibromyalgia, Chronic Fatigue Syndrome, and scoliosis in my neck. And I had a double-level spinal fusion at L4-L5-S1.

2. I was diagnosed in the year: Spondylolisthesis: 1993; Scoliosis and Fibromyalgia (as well as a hematoma on my T2 vertebrae): 2007; CFS: I've always just known.

3. But I had symptoms since: CFS started when I was a teenager, severe back pain started when I was 23 (spondylolisthesis), spinal fusion in 2003, car accident in 2007, FMS diagnosed in late 2007.

4. The biggest adjustment I’ve had to make is that I can't do the things I used to do.

5. Most people assume that I'm blowing this out of proportion, or that if I "just exercise" I would get better.

6. The hardest part about mornings are waking up to pain, stiffness, and another day of the same.

7. My favorite medical TV show is House, of course!

8. A gadget I couldn’t live without is my TENS unit. If you have back pain, I highly recommend you getting one!

9. The hardest part about nights are not being able to sleep because of the pain, or having bad dreams when I do sleep.

10. Each day I take approximately 25 pills & vitamins.

11. Regarding alternative treatments, I am open to it if it works.

12. If I had to choose between an invisible illness or visible I would choose the one from which I would experience less pain

13. Regarding working and career: I am currently unable to work because I can't sit up due to severe lower back, hip, and leg pain.

14. People would be surprised to know that I used to be very active; I was a hard worker; I excelled in college; I'm close to earning a Master of Arts in Education; I was fiercely independent.

15. The hardest thing to accept about my new reality has been that I can no longer do the things I used to do, the things I want to do, the things I need to do.

16. Something I never thought I could do with my illness that I did was take road trips to Dallas, go to hockey games, and still be able to have fun.

17. The commercials about my illness are a joke!

18. Something I really miss doing since I was diagnosed is going to school and feeling well.

19. It was really hard to have to give up my life.

20. A new hobby I have taken up since my diagnosis is researching my illness.

21. If I could have one day of feeling normal again I would enjoy it to the fullest.

22. My illness has taught me to be mindful of my limitations.

23. Want to know a secret? Things people say that gets under my skin are "you should exercise more" or "walk it off".

24. But I love it when people understand and accept my limitation and don't try to fix me.

25. My favorite motto, scripture, quote that gets me through tough times is: When someone I love tells me, "I love you."

26. When someone is diagnosed I’d like to tell them to research every aspect of their illness, and to take that research to their doctor. If your doctor does not allow you to be an active participant in deciding on treatments, get a new doctor.

27. Something that has surprised me about living with an illness is how people will abandon their friendships with you just because they don't know how to handle it.

28. The nicest thing someone did for me when I wasn’t feeling well was made me dinner and brought it over.

29. I’m involved with Invisible Illness Week because I may not look sick, but I am sick.

30. The fact that you read this list makes me feel like someone is listening.


5 comments:

  1. Wow hun, you've been through alot. I'm sorry. I know what it is like though. One question though, what is a tens unit? *hugs*

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  2. TENS is the acronym for Transcutaneous Electrical Nerve Stimulation. A TENS unit is a pocket size, portable, battery-operated device that sends electrical impulses to certain parts of the body to block pain signals. (I didn't know how to explain it, so I stole that from about.com). :D

    Anyway, the device has wires with removable and reusable electrodes on the ends that you adhere to the tender points for wherever you have pain. It's like an electrical massage. I got the one I use off Amazon.com. If you check my blog site, I have links to TENS units and supplies under "Recommendations." I also got a book called "The Trigger Point Therapy Workbook" (also on my blog) that shows me where to put the electrodes for maximum results. It's really something I cannot live without! With my TENS unit, I am able to go to the movies with minimal pain, go the the mall, do things I would otherwise not be able to do! Unfortunately, I can't wear it all the time. It does get a little uncomfortable eventually. :\

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  3. I didn't read the entire list yet, just skimmed (tired and need to attempt sleep tonite)... but amen to #17!!! we hit mute every time now. i can't take it.

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  4. 27. Oh man, that just amazed me how many people I thought of as good friends bailed. But the truly great friends stayed. And now I'm making more!

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  5. yes, #17
    how irritating and even offensive
    The Lyrica one drives me nuts.
    That one is so full of lies. If you take Lyrica and it works, it makes you gain weight and walk around like a zombie. You would never be able to handle a business while on Lyrica. And, like in my case, did not work, but still, made me gain weight and walk around like a zombie for the 3 mos I was on it. :(

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