Sunday, August 30, 2009

Invisible Illness Week--Sept. 14-20,

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Chronic Intractable Headache, and Fibromyalgia

2. I was diagnosed with it in the year:2009 for the Fibro, and 2006 for the Headache

3. But I had symptoms since: age 13 or 14

4. The biggest adjustment I’ve had to make is: T he amount of activities I can do daily. The fact that the old AnnaBeth is really no more. A new one is ready to emerge, if I let her.

5. Most people assume: I look fine, I must be fine.

6. The hardest part about mornings are: Waking up, sleep is elusive and chopped up, also sore neck and hands, and moving to take a shower.

7. My favorite medical TV show is: House, ER too but its over:(

8. A gadget I couldn’t live without is: The new jar popper opener that my husband's grandma sent to me. I also could not do without the Cuisinart, that is if I feel like having minced shallots.

9. The hardest part about nights are:Trying to fall asleep when the pain is all I can think about, and then the worry and anxiety that come from knowing I will not get enough sleep and I have to work the next day, and my pain will probably still be there then too. It is like a nightly merry-go-round ride from hell.

10. Each day I take 30ish pills & vitamins. (No comments, please)

11. Regarding alternative treatments I:have explored homeopathy, reflexology, acupuncture.

12. If I had to choose between an invisible illness or visible I would choose: Neither, but in reality probably invisible. At least I can hide it a bit from the general public and those around me.

13. Regarding working and career: Embarking on new job as an assistant in a holistic health practice. It will hopefully be a less stressful environment, and I will be able to use the treatments!

14. People would be surprised to know: That I sing opera, I love to dance, and I write poetry daily, and I love to cook amazingly fun meals.

15. The hardest thing to accept about my new reality has been: The old me has vanished. My limitations keep me from the lifestyle I was used to. There was a lot of activity, and work, and it was good.

16. Something I never thought I could do with my illness that I did was: I am more sensitive to pain in general, mine, but also other peoples pain. This makes me super empathetic, and I have quick insight and am able to help them. It also has caused me, the go go girl, to slow down. There are things I never saw before that I revel in now. I must treasure the moment because the next one might be filled with blindsiding pain.

17. The commercials about my illness: make it look like little aches and pains, not the incredible all encompassing pain that engulfs my entire being, body and soul, and does not let me go sometimes for several days.

18. Something I really miss doing since I was diagnosed is: The desire to be physically active. I loved to dance, do yoga, swim, bike, and hike in the mountains. I can do these things, but just in tiny increments.

19. It was really hard to have to give up: That beautiful glass of Pinot Noir

20. A new hobby I have taken up since my diagnosis is: Knitting, and now lots of internet communication and activity, and a much over due renewed interest in my writing.

21. If I could have one day of feeling normal again I would: Ride all the roller-coasters I could find, drink the wine I want, and dance through the night, and lots of a certain other unmentionable night time activity (wink wink.)

22. My illness has taught me: Patience and the power of solitude.

23. Want to know a secret? One thing people say that gets under my skin is: They offer the new fix for me. If I had a nickle for every time that happened. I need to remember that people want to help, but sometimes I need to just be treated like AnnaBeth, and not this fragile, untouchable thing that is broken.

24. But I love it when people: Do things with me that make me remember who I am at my core, and that the pain is not me.

25. My favorite motto, scripture, quote that gets me through tough times is: Tomorrow is another day ~Scarlett O'Hara, Gone With The Wind

26. When someone is diagnosed I’d like to tell them: Flow, and don't fight. I have spent several years in denial that this is my new reality, thinking that a magic cure will come along. I think I am just now getting to the point that I accept the new me, and am beginning to love the things she is good at (new things) and am patient with the pain. There may be things that come along to help you, but work to be comfortable with the now reality instead of wishing your days away. Treat yourself well, and take what you need.

27. Something that has surprised me about living with an illness is: New things have opened up in my life. My direction may have changed a bit to the left of where I thought I was going, but there are good things to come, and great things I have renewed focus onto that fit into my new living.

28. The nicest thing someone did for me when I wasn’t feeling well was: My husband always checks on me, and will bring water or ice at any moment, and the best part is, he is so happy to help me. It is hard to let yourself be helped, but when I see the cycle of giving and what it does for us, I realize that it is important to need and be needed. He is the most amazing part of each day for me.

29. I’m involved with Invisible Illness Week because: People need to know that just because the illness does not show on the face of the sufferer, we need to be sensitive to the fact that pain or other suffering may be underneath that smile. We do our best to be unobtrusive, however the sensitivity of those around us can be the difference in being able to interact well in the public, and wanting to just hermit into a hole and never come out.

30. The fact that you read this list makes me feel: Like one more person might understand what it means to be invisibly ill, and that creates one more understanding soul out there for me to possibly find each day.

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

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