1. The illness I live with is: Severe Chronic Fatigue, POTS, and probably a million little Argentine parasites that are really good at hiding
2. I was diagnosed with it in the year: 2006
3. But I had symptoms since: 2005
4. The biggest adjustment I’ve had to make is: Cutting Back. On everything. I had to cut back so much in school that I finished with a portfolio that will never get me a real design job. Not that it mattered too much, because after I graduated I had to cut away all my dreams of being healthy enough to hold a real job. I’ve had to quit any extra activities I enjoy, resign from church callings, cancel plans with friends, learn to live with a dirty kitchen floor, enjoy eating off of paper plates etc etc etc.
5. Most people assume: I got better a long time ago.
6. The hardest part about mornings are: Getting out of bed. I feel like gravity is so much stronger in the mornings. It makes every part of my body ache and wish I never had to move again.
7. My favorite medical TV show is: None. I deal with being sick enough, I don’t want to involve the medical world into my spare time as well.
8. A gadget I couldn’t live without is: My laptop. If my design clients only knew the state I’ve been in while finishing so many projects…. Stuck in bed and barely able to move my fingers….
9. The hardest part about nights are: Insomnia. I usually go to bed around 10 or 11 and don’t fall asleep until somewhere between 1-4am. I’ve even had a night where it took so long that I was still awake when Doug’s alarm went off the next morning. I just got up with him.
10. Each day I take __ pills & vitamins. (No comments, please) Whew. I don’t even know…. Probably about 10 right now but we’re always trying new things and taking out old ones.
11. Regarding alternative treatments I: am willing to try anything. But nothing alternative has ever really helped. (neither has anything traditional for that matter…)
12. If I had to choose between an invisible illness or visible I would choose: VISIBLE!
13. Regarding working and career: I’m not healthy enough to hold a job- even part time. Trust me, I’ve tried. I try to do design work as much as I can from home, but right now I can’t even do that.
14. People would be surprised to know: I’m usually lying when I tell you I’m having a good day. The truth is, I’ve just gotten really good at functioning when I feel horrible. And it’s amazing what some cover-up and a thick layer of blush can do to my pale complexion. And it’s easier to tell people I’m feeling ok than to deal with the annoying “But you look so healthy!” reactions when I tell people I’m feeling sick.
15. The hardest thing to accept about my new reality has been: Learning to find joy in a life I never wanted. Growing up I dreamed of working as a designer and having kids and being the person everyone could turn to at church and doing lots of fun and exciting things with my husband. I can’t have or be any of those things right now, and I have no clue when or if they’ll ever be back in my grasp.
16. Something I never thought I could do with my illness that I did was: Graduate from college. I had no idea how hard school was until I had to learn while being in complete and constant pain.
17. The commercials about my illness: I don’t know what this one is talking about…
18. Something I really miss doing since I was diagnosed is: running more than 2 errands at a time.
19. It was really hard to have to give up: Being able to create relationships without the awkward wall of a misunderstood illness. (Nope, I can't got hiking with you... nope, not even if it's an easy one....yeah I know- so weird- I'm not in a hospital bed or wheel chair or anything and I'm STILL sick.....etc etc etc. To the point that it's just easier not to talk to anybody)
20. A new hobby I have taken up since my diagnosis is: Finding things I can do now BECAUSE I’m sick, that I wouldn’t be able to do any other way. For example, every Tuesday I have a craft day. I get to work on crafts ALL day with no interruptions. Now what healthy person can fit that into their schedule? I am seriously going to miss that when I am healthy again. I also enjoy at least an hour of scripture study every day and when I’m healthy enough I go to the temple once and sometimes multiple times in a week. I also feel completely justified to eat off of paper plates for every meal and let my house get as dirty as it wants when I’m not feeling up to scrubbing.
21. If I could have one day of feeling normal again I would: Go to Disney’s
22. My illness has taught me: So many things. I’ve learned there are two kinds of people in the world- those who have been through a life changing trial (death in the family, divorce, chronic illness etc- any trial that comes with no hope of ever ending) and those who haven’t. It seems whenever I meet someone who is really supportive it’s because they fit into that first category. I’ve also learned of the joy that comes as we accept God’s individual plan for us- even if that plan is far from what you want and the ‘greater things’ He has planned for us aren’t yet in sight.
23. Want to know a secret? One thing people say that gets under my skin is: When people just assume. They assume I’m using my grandma’s handicapped permit. (yes, I’ve actually been given a ticket for using my OWN handicapped permit. Boy was that officer in trouble when I went and explained his assumption) Or they assume that when I go in to buy compression stockings or a wheelchair it must be for someone else. They just assume I’ve gotten better (don’t you think that when I find the cure I’ve been searching 4 years to find that I’ll make a big deal of telling everyone?) or they assume that because I’m not in a hospital bed I must be feeling pretty good. I hate when people see me and say- Wow, you look like you’re feeling a lot better! It’s amazing how much people will assume without ever actually asking me a thing.
24. But I love it when people: Show that they genuinely care about how I’m doing. Even if they’re not very good at showing it- as long as it’s sincere, it’s great. I also love it when people just treat me like me and not a walking illness. (which is why I don’t talk about being sick very often)
25. My favorite motto, scripture, quote that gets me through tough times is: "Oh, Lord, I am yet strong. Give me one more mountain." -Jeffery R. Holland referencing Joshua 14:11-12
26. When someone is diagnosed I’d like to tell them: 1-people who require convincing are not worth wasting your energy on. (it sounds cruel, but it’s true) Instead, learn to live your life despite what others think and you’ll find people who are worth every last bit of your energy. 2-Give yourself time to grieve for the loss of your old life. 3-Find reasons you can be happy for your new life, things that you can do now that you could never have done when you were healthy. 4-There's nothing wrong with getting a professional counselor to help you learn how to be happy again. In fact, I'd highly suggest it.
27. Something that has surprised me about living with an illness is: How hospitals and doctors devote their effort to healthy people who get temporarily sick. There is no place for someone who can not be cured.
28. The nicest thing someone did for me when I wasn’t feeling well was: When we were dating, Doug got a book to read to me on my sick days. Our dates those nights would consist of him reading out loud and me lying on the couch- he never complained that we couldn’t do anything more exciting. And he still never does- even on my sickest days.
29. I’m involved with Invisible Illness Week because: It’s crazy how many people are sick and find no support from friends simply because their friends don’t understand.
30. The fact that you read this list makes me feel: Honestly, a little embarrassed. I don’t like talking about being sick. But I’m glad you care.
Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com
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