Saturday, September 15, 2012

This is Invisible Illness Awareness Week 9/10/2012


30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW

1. The illnesses I live with are: Myalgic Encephalomyelitis (ME) also known as Chronic Fatigue Syndrome (CFS) also known as Chronic Fatigue Immune Disorder Syndrome (CFIDS); Fibromyalgia (FM); Reflex Sympathetic Dystrophy (RSD) also known as Complex Regional Pain Syndrome or CRPS.

2. I was diagnosed with it in the year: RSD/CRPS in 2001; ME/CFS and FM in 2010

3. But I had symptoms since: 1999 for RSD and 2009 for ME/CFS and FM.

4. The biggest adjustment I’ve had to make is: Not working;

5. Most people assume: I just need to get out more  (trust me if I could, I would)  and that I will get well (there are no cures for  ME/CFS, or FM or RSD/CRPS).  One can only manage the symptoms.

6. The hardest part about mornings are: Getting up

7. My favorite medical TV show is: Grey's Anatomy and House

8. A gadget I couldn’t live without is: my computer. It keeps me connected to the world.

9. The hardest part about nights are: Ironically ME/CFS comes with a horrible sleeping disorder, so sleeping is a huge battle. Many nights I am exhausted, but not sleepy.  We call it unrefreshed sleep or being wired and tired.  

10. Each day I take _15_ pills & vitamins. (no comments please  )

11. Regarding alternative treatments I:  explore everything, but I check with my doctor.

12. If I had to choose between an invisible illness or visible I would choose: a visible one.

13. Regarding working and career: I miss working more than I can say. I miss my students every day.

14. People would be surprised to know: How much I grieve over my illness and what this thief (ME/CFS and FM) stole: my career, my social life, my energy, traveling, dancing.

15. The hardest thing to accept about my new reality has been: Staying home after a college teaching career that spanned 30 years.

16. Something I never thought I could do with my illness that I did was: Continue writing my memoir and poetry

17. The commercials about my illness: There are no commercials about ME/CFS or RSD/CRPS

18. Something I really miss doing since I was diagnosed is: Being with people on a daily basis.  I love people and have been forced to become a semi recluse.

19. It was really hard to have to give up: Traveling, dancing, working.

20. A new hobby I have taken up since my diagnosis is: I'm working on that.  A good friend has suggested water color painting.  

21. If I could have one day of feeling normal again I would: crank up my stereo and dance.  The old Katherine was a whirl of energy, and I miss her.  

22. My illness has taught me: That going slow teaches me to see, really see. I treasure each moment in my backyard with my dogs when the weather is good.  To pay attention to what  I can do rather than always focusing on what I can't do.  Oh I still get furious on some days, but I believe life is a classroom and this lesson is hard. 

23. Want to know a secret? One thing people say that gets under my skin is: You need to get out of the house more, or you need to exercise, or have you tried xyz??  Trust me I have spent literally thousands of hours researching this horrible disorder.  I want to get well.  If it's out there, I've tried it.

24. But I love it when people: Ask me how I'm feeling and really believe that I'm ill.   The National Institute of Health has deemed ME/CFS a serious and life threatening disorder. 

25. My favorite motto, scripture, quote that gets me through tough times is: "Be here Now",  "Do not compare today to your old life.  Compare today to yesterday." "Any day above ground is a good day." "Remember just breathe."

26. When someone is diagnosed I’d like to tell them: To be gentle with themselves and practice loads of self compassion. Do your research, find a doctor who believes you are ill, and never give up, ever.  This disorder is not psychological; you are not crazy; you are really ill.

27. Something that has surprised me about living with an illness is: How hard it is just to take a bath and wash my hair when I am in a crash, and how when I am in a crash my mind just doesn't work, period.  I can't follow a t.v. show, I can't read, I have trouble following conversations, I lose vocabulary.  All I can do is be patient and rest (which may or may not include sleeping) and wait for it to pass. It always does.

28. The nicest thing someone did for me when I wasn’t feeling well was: Brought me a book on Buddhism.

29. I’m involved with Invisible Illness Week because: I believe firmly in raising awareness for all of us who are sick no matter what the disease or disorder.

30. The fact that you read this list makes me feel: happy and validated