30 Things About My Invisible Illness You May Not Know1. The illness I live with is: Septo Optic Dysplasia with congenital Panhypopituitarism, high functioning Autism (now called Asperger's) Fibromyalgia, Neuropathy, Trigeminal Neuralgia, Anemia
2. I was diagnosed with it in the year: 1982, chronic pain conditions since 2009, anemia one month ago
3. But I had symptoms since: birth, chronic pain since 3 years ago,
4. The biggest adjustment I’ve had to make is: I'm fortunate that I've grown up this way so it's pretty normal for me, it's hard to pace myself when I'm used to doing as much as I want to do
5. Most people assume: that I'm using crutches because I sprained something
6. The hardest part about mornings are: the whole thing!! I'm very stiff and sore and have a hard time getting out of bed but need to because I have to have breakfast to take my morning meds by 8am
7. My favorite medical TV show is: Mystery Diagnosis/House (I don't really watch much TV)
8. A gadget I couldn’t live without is: my Eeepc and iPod touch, perfect when I'm having a day where I'm stuck in bed
9. The hardest part about nights are: trying to sleep with pain which always seems worse when there is nothing to occupy my mind
10. Each day I take 20 pills & vitamins. 1 injection and biweekly patches (No comments, please)
11. Regarding alternative treatments I: will try anything a few times, I have tried cranio-sacral osteopathy, acupuncture, massage (yay), chiro for the chronic pain. I cannot do alternative treatments for the pituitary issues as that would endanger my life.
12. If I had to choose between an invisible illness or visible I would choose: I use crutches so mine is visible at the moment. I don't really mind, sometimes people get confused when I'm using them one day and not another, my arms are affected too so somedays using the crutches is more painful than helpful, I tend to not go far from home on those days!
13. Regarding working and career: I've been on medical leave from a job I love very much, being a live in caregiver for 6 awesome people with developmental disabilities. If I can't return to work I will volunteer when possible! I just wish it was settled instead of being in limbo!
14. People would be surprised to know: I'm stubbornly independent
15. The hardest thing to accept about my new reality has been: asking for and receiving help
16. Something I never thought I could do with my illness that I did was: travel alone!
17. The commercials about my illness: drive me insane, the fibro one makes me wanna throw things at my TV! there are no commercials about my rare illness
18. Something I really miss doing since I was diagnosed is: washing my hair without pain
19. It was really hard to have to give up: working
20. A new hobby I have taken up since my diagnosis is: sewing
21. If I could have one day of feeling normal again I would: normal what's that? never been normal, sounds boring!
22. My illness has taught me: to rely on God, to reach out to others, to be patient
23. Want to know a secret? One thing people say that gets under my skin is: you're too young to be disabled!
24. But I love it when people: compliment my crutch artwork
25. My favorite motto, scripture, quote that gets me through tough times is: "3 More than that, we rejoice in our sufferings, knowing that suffering produces endurance, 4 and endurance produces character, and character produces hope, 5 and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us." Romans 5:3-5
26. When someone is diagnosed I’d like to tell them: they aren't alone
27. Something that has surprised me about living with an illness is: life goes on, fun times can be had!
28. The nicest thing someone did for me when I wasn’t feeling well was: brought me chocolate and a "greatest grandma" balloon while I was in the hospital! hee hee hee got a lot of looks and second takes from nurses lol
29. I’m involved with Invisible Illness Week because: it's good to be connected and not feel alone
30. The fact that you read this list makes me feel: honoured and empowered, thank you!