Thursday, September 15, 2011

NICIAW - Pulmonary Fibrosis and Bronchiectasis

This is from Smurf.

1. The illness I live with is: Pulmonary Fibrosis and bronchiectasis.

2. I was diagnosed with it in the year: 2007.

3. But I had symptoms since: some symptoms present from birth which developed into above conditions.

4. The biggest adjustment I've had to make is: Regular hospital treatments/stays.

5. Most people assume: I have a bit of a cough, but otherwise am fit and healthy.

6. The hardest part about mornings are: Breathing.

7. My favorite medical TV show is: None, avoid them.

8. A gadget I couldn't live without is: Portable nebuliser that works in the car.

9. The hardest part about nights are: Breathing

10. Each day I take 30-57 pills & vitamins.

11. Regarding alternative treatments I: Try anything.

12. If I had to choose between an invisible illness or visible I would choose: Invisible. on the rare occasions I wear oxygen nasal tubes in public I can't bare the looks of pity I get.

13. Regarding working and career: I am lucky to have an understanding employer

14. People would be surprised to know: I am scared about my condition and when I wear lipstick, its to hide that my lips are blue through low oxygen.

15. The hardest thing to accept about my new reality has been: Life expectancy and transplantation prospect.

16. Something I never thought I could do with my illness that I did was: Snorkel in the sea

17. The commercials about my illness: I don't know.

18. Something I really miss doing since I was diagnosed is: Not worrying about medication and correct dosages and times.

19. It was really hard to have to give up: The partying lifestyle

20. A new hobby I have taken up since my diagnosis is: None

21. If I could have one day of feeling normal again I would: Go scuba diving and run everywhere

22. My illness has taught me: To take each day as a new one

23. Want to know a secret? One thing people say that gets under my skin is: I thought you were a smoker coughing like that.

24. But I love it when people: Don't underestimate my capabilities when they know of my condition.

25. My favorite motto, scripture, quote that gets me through tough times is: 'Thats life'

26. When someone is diagnosed I'd like to tell them: Don't just see a death sentence

27. Something that has surprised me about living with an illness is: The amazing people I have met along the way.

28. The nicest thing someone did for me when I wasn't feeling well was: Arrange a surprise birthday party when I was in hospital- everyone on the ward got involved and had fun.

29. I'm involved with Invisible Illness Week because: the saying 'don't judge a book by its cover' came to mind when reading about it.

30. The fact that you read this list makes me feel: Heard

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