15 Apr 2013

Invisible Illness Week

For Invisible Illness Week


1. The illness I live with is: Systemic Lupus Erythematosis ( I also have Sjogrens, IBS and Hughes Syndrome)
2. I was diagnosed with it in the year: 2011
3. But I had symptoms since: 2009
4. The biggest adjustment I’ve had to make is: Learning to slow down
5. Most people assume: That I'm not that ill because I don't look it
6. The hardest part about mornings are: Joint pain/stiffness/getting ready and then being so tired I feel I need to go  back to bed!
7. The worst thing about my illness is: The extreme fatigue, the pain and the fact that its invisible...Not that I WANT it to show but people don't realise how badly you are suffering as they can't see it on the outside
8. A gadget I couldn’t live without is: my phone - it reminds me when to take my tablets!
9. The hardest part about nights are: The night sweats (I have them EVERY night) and mad medication induced dreams
10. Each day I take __ pills. : 16 pills a day
11. Regarding alternative treatments: I've tried a few things but docs have always told me to stick to my regular meds.  Is asked a doctor once what would happen if I stopped taking my medication and he looked me in my eyes and said, "You would die"
12. If I had to choose between an invisible illness or visible I would choose: None!
13. Regarding work and career: Sadly I have recently made the choice to give up my job.  I hope to have a rest and get back into work part-time.  

14. People would be surprised to know: I don't think Lupus is all bad as it has taught me lots of new life lessons and made me realise how strong I am
15. The hardest thing to accept about my new reality has been: That I have gone from a normal healthy person to having a life-long and incurable illness that could potentially be fatal.  And I can't do all the things I want to
16. Something I never thought I could do with my illness that I did was: Accept it
17. The commercials about my illness: What commercials? There is no awareness for Lupus whatsoever
18. Something I really miss doing since I was diagnosed is: Going to the gym three times a week, going out every weekend, Going out after work, being able to work a full week, not having to sleep allll the time, sunbathing, getting out of bed easily, not worrying about my health, generally being an active person, I miss the feeling of not being in pain and a decent nights sleep
19. It was really hard to have to give up: My fast-paced life-style
20. A new hobby I have taken up since my diagnosis is: Writing
21. If I could have one day of feeling normal again I would: ENJOY EVERY SINGLE SECOND
22. My illness has taught me: To do things that make me happy and to never take anything granted
23. Want to know a secret? Since having lupus I actually believe I am a better person, I appreciate so much more
24. I love it when: People take the time to educate themselves about my illness and try to understand what I am dealing with

I hate it when: People say "have you u tried this..." Or, "Why don't you do this..." IF that was the answer everyone with Lupus would be doing it and we'd all be fine and they wouldn't still be doing research into a cure.
25. My favorite motto, scripture, quote that gets me through tough times is: I am not Lupus' bitch.  Lupus IS MY BITCH
26. When someone is diagnosed I’d like to tell them: Lupus is shit  but I am here for you every step of the way
27. Something that has surprised me about living with an illness is: The lack of knowledge/understanding about Lupus and some people's ignorance has astounded me...you also realise quite quickly who is worth your time and who isn't
28. The nicest thing someone did for me when I wasn’t feeling well was: Just be there for me
29. I’m involved with Invisible Illness Week because: I have lupus and I want to raise awareness
30. The fact that you read this list makes me feel: Loved!

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