1. The illness I live with is: Chronic Osteomyelitis (chronic bone infection in my right tibia)
2. I was diagnosed with it in the year: 2011
3. But I had symptoms since: 2006
4. The biggest adjustment I’ve had to make is: not being able to go on long walks anymore, and realizing that I simply do not have the energy to do all the things I used to do.
5. Most people assume: that because I am recieivng treatment I will get better very quickly.
6. The hardest part about mornings are: waking up when I am exhausted, even after 10 hours of sleep.
7. My favorite medical TV show is: ER
8. A gadget I couldn’t live without is: my MP3 player. When I am to tierd or in to much pain to do anything I can still lay on my bed and listen to music/the radio - Yay! for staying connected to society.
9. The hardest part about nights are: bone pain
10. Each day I take 10 pills & vitamins
11. Regarding alternative treatments I: am currently doing nothing but considering yoga.
12. If I had to choose between an invisible illness or visible I would choose: a visible illness.
13. Regarding working and career: It is difficult to get through university because I am always exhausted. Luckily many of my professors are very accommodating and I still get very high grades. I cannot work at the moment because I am so tired and cannot stand for long periods of time.
14. People would be surprised to know: that there is dead bone inside my right leg.
15. The hardest thing to accept about my new reality has been: how something so serious could have been misdiagnosed for over five years. Also, on the inside I am still the same person even if I cannot do the things i used to do.
16. Something I never thought I could do with my illness that I did was: be happy and confident even while facing uncertainty for my health/treatment. Don't get me wrong though, I still have many down days.
17. The commercials about my illness: there are none.
18. Something I really miss doing since I was diagnosed is: walking to the beach by the lake I live near.
19. It was really hard to have to give up: Army Cadets
20. A new hobby I have taken up since my diagnosis is: embroidery.
21. If I could have one day of feeling normal again I would: go to the zoo where I would walk around all day and not feel pain.
22. My illness has taught me: to take life one day at a time. With a chronic infection it is all to easy to get bogged down with worry when thinking about the long term. This is something I am still learning.
23. Want to know a secret? One thing people say that gets under my skin is: "I have a cold and feel terrible. I don't think I could feel worse. By the way, how are you feeling?" and "You are ill? but you look so good!"
24. But I love it when people: modify some of their activities so I can still partake.
25. My favorite motto, scripture, quote that gets me through tough times is:
26. When someone is diagnosed I’d like to tell them: that is will be heard, it will hurt, there will be worry and despair, but there will be good moments within the bad which although not worth the disease are still wonderful to experience.
27. Something that has surprised me about living with an illness is: that the days which used to be my bad days before I got sick, i.e, days with a cold or the flu, are now my good days and I embrace them.
28. The nicest thing someone did for me when I wasn’t feeling well was: to make me a big cup of tea and get me a magazine from the bookstore.
29. I’m involved with Invisible Illness Week because: there are many people who struggle with everyday tasks. I think that people need to learn that life is not about doing extraordinary things and failing if they do not achieve there goals, but about enjoying and savoring what you can do. Accept who you are and what you can do withing your limitations because pushing yourself to hard, mentally and physically, can make you unhappy.
30. The fact that you read this list makes me feel: that people recognize hos serious chronic osteomyelitis is.
