Thursday, September 4, 2014

30 Things You May Not Know About My Invisible Illness

In honor of Invisible Illness Awareness Week and as part of the September Migraine Blog Carnival I'm going to do the meme 30 Things You May Not Know About My Invisible Illness. Let's get started.

1. The illness I live with is Chronic Migraines and Fibromyalgia

2. I was diagnosed with Migraines in 1986, Chronic Migraines in 2006 and Fibromyalgia in 2011

3. But I had symptoms of Chronic Migraines since 2005 and Fibromyalgia since 2007.

4. The biggest adjustment I've had to make is learning to pace myself - not doing too much when I feel okay and still do something even when I don't.

5. Most people assume I'm exaggerating, after all it can't be as bad as I say and I look fine.

6. The hardest part about morning time is waking up feeling like instead of sleeping I was getting beat up during the night - my whole body will hurt but I have things to do.

7. My favorite medical TV show is NY Med.

8. A gadget I couldn't live without is my laptop.

9. The hardest part about night time is being completely exhausted but unable to sleep.

10. Each day I take at least 3 but no more than 6 pills and vitamins. (No comments, please)

11. Regarding alternative treatments, I've tried many and hope to incorporate more into my treatment plan.

12. If I had to choose between an invisible illness and a visible one I don't know which I would choose. I've never had a visible illness and can't pretend to really understand how that experience would be. I guess if pressed I would choose the devil I know - invisible illness.

13. Regarding working and career, well, my career has been completely derailed due to my conditions. Unable to work a real job, managing things at home and this blog is about all I can do.

14. People would be surprised to know just how much my conditions effect every area of my life.

15. The hardest thing to accept about my new reality has been all the things I can't do anymore.

16. Something I never thought I could do with my illness but I did was maintain a blog for any length of time.

17. The commercials about my illness are overly simplistic advertisements for drugs.

18. Something I really miss doing since I was diagnosed is being involved in live theatre.

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

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

21. If I could have one day of feeling normal I would travel someplace fun with my husband the day before and then spend my normal day with him, exploring and eating great food and a enjoying a nice glass of wine.

22. My illness has taught me to be strong in a way my life never required of me before.

23. Want to know a secret? One thing people say that gets under my skin is "You're so lucky to stay home all day."

24. But I love it when people still want to get together despite my limitations.

25. My favorite motto, quote or scripture that gets me through tough times is "I can't go on, I must go on, I'll go on." By Samuel Beckett.

26. When someone is diagnosed I would like to tell them that they are not alone - there is a fantastic community of support and information available online.

27. Something that has surprised me about living with an illness is just how hard it is physically, emotionally and mentally - but still, it is doable.

28. The nicest thing someone has done for me when I wasn't feeling well was make/bring me food and a cold pack.

29. I'm involved with invisible illness week because I think it's important people understand that just because you can't see what someone is going through that doesn't mean it isn't real and significant.

30. The fact that you read this list makes me feel thankful.


  1. Awesome list, thanks for posting it :)

  2. The list certainly resonates with me and my life with chronic migraine. I have my own version of it that is much like yours. That helps -- we are not alone! I like the way you toggle between the cons and the pros. There are pros, they're just hidden. I like to think that those of us who must search a bit harder than others for the good things in life also find within ourselves deeper gratitude and fortitude. Thanks for posting this.