She's a character, she has opinions.

30 Things About My Invisible Illness You May Not Know

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1. The illness I live with is: Post-Herpetic Neuralgia (PHN), Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), Migraines, Asthma, Anxiety, Depression, Diabetes.

2. I was diagnosed with it in the year: 2008, 2010, mid-1990s, 1986, early-1990s, early-1990s, 2010

3. But I had symptoms since: For CFIDS it took about a year and a half to eliminate all other possibilities and get a diagnosis. Asthma I had all my life. Same with anxiety and depression.

4. The biggest adjustment I’ve had to make is: CFIDS and PHN are physically and mentally debilitating. I went from being an overachieving Type A to someone who had to learn to pace herself and in some cases stop altogether.

5. Most people assume: that I’m fine when they look at me.

6. The hardest part about mornings are: Everything. I never know from day to day what my pain and energy level will be. The first thing I do every morning is assess myself and how I’m feeling.

7. My favorite medical TV show is: I don’t have one. I don’t watch them. Hey, I live it!

8. A gadget I couldn’t live without is: My laptop. I have to lie down and rest a lot and I can take the laptop with me.

9. The hardest part about nights are: Sleeping comfortably. Sometimes the pain makes it hard, sometimes it’s the fatigue.

10. Each day I take 6 pills & vitamins. I also use two inhalers. (No comments, please)

11. Regarding alternative treatments I: am willing to try them.

12. If I had to choose between an invisible illness or visible I would choose: I can’t answer this. I think whichever I had would seem worst to me.

13. Regarding working and career: I had to give up my dream career because of the pain and fatigue from my illnesses. I don’t work now because I can’t. To say I am heartbroken over this would be an understatement.

14. People would be surprised to know: that I am in pain and exhausted every single day of my life.

15. The hardest thing to accept about my new reality has been: Learning to pace myself. I’m not good at taking it easy and giving up. I’ve always been more of a push through it no matter the cost person.

16. Something I never thought I could do with my illness that I did was: I haven’t run into anything like this yet. I guess I go into everything with an open mind.

17. The commercials about my illness: Are such crap. Shut up, Lyrica, you are so not the PHN miracle cure for everyone.

18. Something I really miss doing since I was diagnosed is: Working. Seriously, I loved my job. I was an activist dealing with women’s issues and it was everything I ever dreamed of doing. I also miss being awake more than 8 hours each day.

19. It was really hard to have to give up: *sigh* My life. My social life, my work life. I can’t make plans and know for sure I’ll keep them.

20. A new hobby I have taken up since my diagnosis is: Reading all about it?

21. If I could have one day of feeling normal again I would: Spend the entire day awake and active. (But I hate the wording of this question. I’m normal now, I’m just sick.)

22. My illness has taught me: To prioritize.

23. One thing people say that gets under my skin is: “I’m tired too.”

24. But I love it when people: Understand my limitations and realize that I want to be with them even when I’m too sick.

25. My favorite motto, scripture, quote that gets me through tough times is: I don’t have one. When times are tough I talk to my ill friends and we commiserate.

26. When someone is diagnosed I’d like to tell them: I’m sorry. I understand as best I can even though you and I are different. I’m here to talk.

27. Something that has surprised me about living with an illness is: How absolutely difficult it is to make it through life if you are outside what is considered to be the norm.

28. The nicest thing someone did for me when I wasn’t feeling well was: Understanding that I wasn’t feeling well and accepting it.

29. I’m involved with Invisible Illness Week because: I’m an activist by nature, I guess.

30. The fact that you read this list makes me feel: Good. Hopeful.

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Written by tldegray

September 14, 2010 at 4:00 pm

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