30 Things About My Invisible Illness You May Not Know

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Narcolepsy with Cataplexy
2. I was diagnosed with it in the year: 2007
3. But I had symptoms since: 1993
4. The biggest adjustment I’ve had to make is: to let things go. I can't do everything I want to do, and I can't do it perfectly. I have learned I have limitations.
5. Most people assume: I'm lazy or just enjoy sleeping a lot
6. The hardest part about mornings are: getting ready to leave the house is a HUGE undertaking. I have to take a break after every step. Take a shower; take a break. Get dressed; take a break.
7. My favorite medical TV show is: Mystery Diagnosis
8. A gadget I couldn’t live without is: motorized wheelchair
9. The hardest part about nights is: getting myself ready to go to sleep. I have to take a bunch of medicine, set two alarms so I can wake up in 4 hrs to take my second dose of meds, clean my CPAP mask and put water in the machine, plus all the normal stuff like brushing my teeth, etc. When I'm so tired I can hardly stand up, it's a nightmare.
10. Each day I take 21 pills & vitamins.
11. Regarding alternative treatments I: have found that they cannot be used to the exclusion of traditional treatments and vice versa.
12. If I had to choose between an invisible illness or visible I would choose: visible because then I wouldn't have to explain myself all the time.
13. Regarding working and career: I can NEVER work a normal 9-5 job because I don't have the stamina and can't be depended on to be somewhere at a certain time. I work from home and help with my husband's business as much as I can.
14. People would be surprised to know: how much I struggle with feeling inadequate and unproductive
15. The hardest thing to accept about my new reality has been: having to admit I can't do things and having to depend on others to help
16. Something I never thought I could do with my illness that I did was: graduate college. It took me until I was 29, and I dropped out, dropped classes, and asked for extensions more times that I can count. But I did it!
17. The commercials about my illness: what commercials? Most doctors don't even know what cataplexy is. I carry info sheets with me wherever I go in case I have an attack.
18. Something I really miss doing since I was diagnosed is: DRIVING!!!
19. It was really hard to have to give up: singing in the choir and singing specials at church
20. A new hobby I have taken up since my diagnosis is: bird watching
21. If I could have one day of feeling normal again I would: not know where to begin. It's been 16 years since I've felt "normal," so I don't know if I would recognize it if it actually happened.
22. My illness has taught me: to be compassionate and empathetic toward others
23. Want to know a secret? One thing people say that gets under my skin is: "It must be nice to stay home and relax all day!"
24. But I love it when people: offer to pick things up from the store for me or take me out for an afternoon
25. My favorite motto, scripture, quote that gets me through tough times is: Romans 5:3-5 "Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.
26. When someone is diagnosed I’d like to tell them: it's normal to grieve over the loss of your health and your dreams and goals for your life. Don't worry about putting on a brave front. God sees your pain; don't be afraid to let others see it so they can love you and hurt with you.
27. Something that has surprised me about living with an illness is: no one will ever understand completely what it is like for me to live with my illness, so I cannot expect that from people
28. The nicest thing someone did for me when I wasn’t feeling well was: came over and cleaned my house and didn't make me feel bad about how dirty some things were
29. I’m involved with Invisible Illness Week because: there are so many hurting people that are feeling alone in their illness, but spreading awareness can bring hope to those people like it brought hope to me.
30. The fact that you read this list makes me feel: that you love me enough to learn more about my struggles.

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