Battling chronic invisible illness….

I pushed myself maybe a bit to hard while I was out touring Friday, Saturday and Sunday.  Today (being the Monday that it is) has found me unable to do much of anything. It seems like everything in my body aches and showering was the only task have been able to complete. I have taken two naps and could easily take a third.  I have a migraine coming on and I have taken my prescription pills.  However, they aren’t quite getting the job done so I imagine a shot is in order.  It can be horribly frustrating because most people wouldn’t need recovery time.  Alas, those of us with chronic illness can understand the need for pacing oneself and the repercussions of not.
Right now, I am so glad that my body had the strength to conquer three days of light touring.  But, I am also very angry that it has caused me to stay in bed all day. Not that there is anything I wanted to do or accomplish today; but, having the option taken away from me is just unfair.  I often wonder what it would be like to go through an entire day (or an entire hour) without pain.  I can specifically define all of my aches and pains to a healthy person. So can a healthy person describe to me what it feels like to not be in pain?
I joined a great forum called chronic babes at www.chronicbabeclub.ning.com. It’s a great resource for anyone that lives with physical challenges. It’s a source of strength and friendship from other women who understand firsthand some of the hardships of coping with a chronic illness.  They posted this questionnaire for Invisible Illness Week but I felt it very fitting to post now.
30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Arnold Chiari Malformation Type 1 (Chiari) in short-my cerebellar lobes at the back, base of my brain are growing downward into the top of my spinal canal.

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

3. But I had symptoms since: 1980

4. The biggest adjustment I’ve had to make is: quitting a job I loved!!! 

5. Most people assume: that I am healthy because they don’t see anything wrong with me.

6. The hardest part about mornings are: discovering which parts work & which ones hurt.

7. My favorite medical TV show is: mystery diagnosis

8. A gadget I couldn’t live without is: ice pack and heating pad.

9. The hardest part about nights are: sleeping or actually lack thereof.

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

11. Regarding alternative treatments I: if it makes me feel better it’s worth it.

12. If I had to choose between an invisible illness or visible I would choose: Visible anyday!

13. Regarding working and career: I miss working, I miss feeling like I had purpose.

14. People would be surprised to know: that I long to know what healthy feels like.

15. The hardest thing to accept about my new reality has been: I will never be cured.

16. Something I never thought I could do with my illness that I did was: complete a 1.5 mile hike over some fairly tough terrain. 

17. The commercials about my illness: don’t exist, it’s rare and people don’t understand.

18. Something I really miss doing since I was diagnosed is: wearing high heels out more often.

19. It was really hard to have to give up: the thoughts of what my ideal life would be.

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

21. If I could have one day of feeling normal again I would: memorize every feeling that my body experiences.

22. My illness has taught me: patience and it was a HARD lesson.

23. Want to know a secret? One thing people say that gets under my skin is: I never would have known.

24. But I love it when people: ask questions about my condition.

25. My favorite motto, scripture, quote that gets me through tough times is:
It may be that when we no longer know what to do, we have come to our real work, and that when we no longer know which way to go, we have begun our real journey. The mind that is not baffled is not employed. The impeded stream is the one that sings. ~Wendell Berry

26. When someone is diagnosed I’d like to tell them: establish a support system, friends, family and doctors. Let them know that getting the most out of life is a team effort.

27. Something that has surprised me about living with an illness is: my sense of peace.

28. The nicest thing someone did for me when I wasn’t feeling well was: my sis helping the nurse take off my post neurosurgery bandage; she saved me a lot of pain.

29. I’m involved with Invisible Illness Week because: it should have more recognition!!

30. The fact that you read this list makes me feel: comforted to know that you care enough to want to understand the challenges I live with.



Quote of the moment: It may be that when we no longer know what to do, we have come to our real work, and that when we no longer know which way to go, we have begun our real journey. The mind that is not baffled is not employed. The impeded stream is the one that sings. ~Wendell Berry