30 Things About My Illness You May Not Know

It's Invisible Illness Week this week, which is fitting since I feel the worst I've felt in a long time.  I'm sure you've noticed the lack of quality posts lately.

I did this a few years ago, but a lot has changed since then, so here is a new list of

30 Things About My Illness You May Not Know:


1. The illness I live with is: Fibromyalgia and Chronic Fatigue Syndrome
2. I was diagnosed with it in the year: 2008
3. But I had symptoms since: My entire life.
4. The biggest adjustment I’ve had to make is: Not physically being able to do things I use to love (ex: backpacking, rollercoaster riding, etc.)
5. Most people assume: Most likely people probably assume that I'm exaggerating about the pain and fatigue, but I promise I'm not.
6. The hardest part about mornings are: Actually waking up and moving.  I am so exhausted in the morning, and seriously stiff and sore from pain.
7. My favorite medical TV show is:  Can't say that I watch any medical TV shows anymore.
8. A gadget I couldn’t live without is:  Oh my wonderful wonderful MacBook Pro.  Her name is Samantha and she is wonderful.
9. The hardest part about nights are: Getting comfortable and actually falling asleep.
10. Each day I take __ pills & vitamins. Currently I take 3 prescription medications, and am working on a new vitamin regimen that so far consists of 9 pills and a powder to drink.
11. Regarding alternative treatments I: As far as I'm concerned when it comes to Fibro, there is no such thing as "alternative".  I see the chiropractor, and get massages when I can.  I would totally consider acupuncture.
12. If I had to choose between an invisible illness or visible I would choose:  Oh goodness, I wouldn't want to choose.  I feel grateful on a daily basis that my illness does not threaten my life.  As long as I'm still alive I am still living.  
13. Regarding working and career:  Been out of the working world for 4 years now, but seriously want to return to something low key.  I honestly don't have any serious career aspirations, which makes me incredibly sad.  But I love helping people learn about the things that I love, and that seems to be pretty fulfilling.
14. People would be surprised to know: I'm not really sure.  I'm pretty open and honest about everything, so not sure what would be a surprise.
15. The hardest thing to accept about my new reality has been: Not being able to keep up with my peers.  I can deal with the pain and the fatigue, but I've been extremely lonely.
16. Something I never thought I could do with my illness that I did was: I rode in a 13 mile charity bike ride.  So fun, and hurt for days.  But best day in several months for sure.
17. The commercials about my illness: Make me really angry.  This might not be the popular opinion but people in commercials look and act nothing like me.
18. Something I really miss doing since I was diagnosed is: I miss school a lot.  I loved learning and discussing what I learn with my classmates.  Also miss eating things with gluten in them.
19. It was really hard to have to give up: I don't think I made a conscious decision to give anything up besides gluten, which sucked but wasn't hard because I started feeling better almost immediately. 
20. A new hobby I have taken up since my diagnosis is: CROCHETING!! One of my favorite things in the world.
21. If I could have one day of feeling normal again I would:  Spend it with friends outdoors.
22. My illness has taught me: To not be afraid to ask for help.
23. Want to know a secret? One thing people say that gets under my skin is: When people say "glad you are feeling better" when they see me.  Just because I'm out in public doesn't mean I feel remotely well.
24. But I love it when people: give me hugs and ask how I am.
25. My favorite motto, scripture, quote that gets me through tough times is:  Man I really don't have one of these right now.  It's always been Philippians 3:14, and haven't really had the need to contemplate anything new.
26. When someone is diagnosed I’d like to tell them: There are good days to go along with the bad days, and although bad days seem to be way way more in number the good days do exist.  (see number 16)
27. Something that has surprised me about living with an illness is: The cost of medical care sucks, a lot.  And healthy people don't seem to understand that.
28. The nicest thing someone did for me when I wasn’t feeling well was: My husband Ryan does amazing things for me on a daily basis.  However, my friend Jenni has sent me TWO packages from conventions she went to this summer, and that has been amazing. One was Amanda Tapping's autograph from the convention I really thought I was going to go to till the end of July.
29. I’m involved with Invisible Illness Week because: Not really involved outside of this blog post this year, but wanted to get some words out there.
30. The fact that you read this list makes me feel: loved.