Thursday, May 23, 2013

30 Things About My Invisible Illness(es)

30 Things About My Invisible Illness You May Not Know

1. The illness(es) I live with is: CFIDS (chronic fatigue and immune deficiency syndrome) and TOS (thoracic outlet syndrome)

2. I was diagnosed with it in the year: 2002 and 2012

3. But I had symptoms since: forever for CFIDS and only recently for TOS

4. The biggest adjustment I’ve had to make is: just changing my entire life

5. Most people assume: that I'm healthy. People always tell me how tired I look, but that's it.

6. The hardest part about mornings are: from the CFIDS: how stuff and achey my joints are and from TOS: staying awake long enough after my various alarms to get through my pills schedule

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

8. A gadget I couldn’t live without is: my iPhone

9. The hardest part about nights are: waiting for the medications to knock me out as my brain races through horribly sad and scary and depressed thoughts about my future

10. Each day I take 25 pills, and a few spreads of my ketamine cream

11. Regarding alternative treatments I: desperately need to find out if my insurance covers them.... I've tried acupuncture for other things and had no success but I need some serious help and Western medicine has failed me thus far

12. If I had to choose between an invisible illness or visible I would choose: invisible. For one thing, it's the "familiar evil" so I know what it's all about. Also, I hate when people treat me differently the second they find out I'm sick. Like suddenly I'm fragile or no longer an equal adult.

13. Regarding working and career: I've lost mine and I desperately hope to get it back

14. People would be surprised to know: how bad it really is, because I put up too tough of an exterior and avoid being vulnerable. However this blog is helping to change that.

15. The hardest thing to accept about my new reality has been: 1-that my health is totally public to people I barely know (via Kevin sharing it very openly with all of his friends even before the wedding) and 2-the complete dependence on other people, usually Kevin (so I can't be mad that he shared it, because it's now his story too). I can't drive or bathe myself or dress myself. And I am a VERY independent person, or at least I was... Maybe the hardest thing to accept really is the loss of the self-identity I had. I'm not the person I was...I can't be, my health doesn't allow it, but my heart still hold onto that.

16. Something I never thought I could do with my illness that I did was: keep on fighting, after surgery failed me

17. The commercials about my illness: don't exist. My invisible illnesses aren't the "popular" or well-known ones. They are both rare.

18. Something I really miss doing since I was diagnosed is: playing soccer. All forms exercise really.

19. It was really hard to have to give up: coaching

20. A new hobby I have taken up since my diagnosis is: this very blog.

21. If I could have one day of feeling normal again I would: drive and run and play soccer all day

22. My illness has taught me: a lot about who I am, more about who other people are, and even more about the point of life and how to live it

23. Want to know a secret? One thing people say that gets under my skin is: "if it were me, I'd do ______" Biotch, it isn't you and you don't have one single effing clue how you'd survive in my shoes. Don't tell me how to live when your health is perfect or even normal!

24. But I love it when people: back up their offers to help. Everyone says, "oh I'm here if you need anything" but those are usually empty words. I can't garden, do yardwork, fix stuff around the house, drive myself places, grocery shop, walk a flight of stairs alone, carry my laundry basket, etc etc etc. And I'm lonely. My world is very small. So go ahead, help. Show up. Not many people do.

25. My favorite motto, scripture, quote that gets me through tough times is: "everyone who lives, dies, but not everyone who dies has truly lived"

26. When someone is diagnosed I’d like to tell them: practice embracing/accepting change. Everything in your life will change and you can't stop it. Much easier said than done.

27. Something that has surprised me about living with an illness is: that someone still loves me, instead of leaving me for being sick, like everyone else did in the past

28. The nicest thing someone did for me when I wasn’t feeling well was: Kevin. Marrying me. And taking care of me daily ever since.

29. I’m involved with Invisible Illness Awareness Week cuz I like who blogged for it and I really like a fill-in-the blank form to share some of my own issues **it's not IIAW right now

30. The fact that you read this list makes me feel: like you're actually listening and like you genuinely care, if you've made it this far. So thank you.