30 Things About My Invisible Illness

1. The illness I live with is: Stiff Person Syndrome(yes it's real) among others but this is my main one

2. I was diagnosed with it in the year: 2013/2014

3. But I had symptoms since: 1996

4. The biggest adjustment I've had to make is: learning I can no longer do the things most people take for granted, I try but end up making myself go into spasm and then get frustrated

5. Most people assume: I'm not the same person....although my mobility is greatly reduce my personality is still the same

6. The hardest part about mornings are: wondering if I will be able to get out bed or will this be the day I become bedridden (a great fear of mine)

7. My favorite medical TV show is: don't have one....I use to watch medical mysteries hoping I would see a story that was like my condition and only found the show on Stiff Person's after my diagnosis.

8. A gadget I couldn't live without is: my tablet for the days I can't move well it gives me something to do, and my phone in case I need to call for help

9. The hardest part about nights are: trying to find a comfortable way to sleep... and once asleep waking up because I am stuck in that position and need force my body to move to another position

10. Each day I take 12 pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: would be willing to try some options if I felt it truly would help me, but not because someone read something somewhere I like treatments back up with actual facts.

12. If I had to choose between an invisible illness or visible I would choose: invisible so I can trick myself and others into thinking I'm fine (even at times when I am not), except when people stare at me using a handicap space on my bad days, on the outside I look fine but on the inside my body would tell you a different story

13. Regarding working and career: I never realized how much work defines a person in our society until I was unable to work

14. People would be surprised to know: the odds of this disease is 1 in 1 million, when you put that in prospective that means only 35 people in Canada have this... if they are lucky to be diagnosed

15. The hardest thing to accept about my new reality has been: losing my independence and accepting help I was always the one to help people and now that I need it I am not comfortable asking'

16. Something I never thought I could do with my illness that I did was: still find happiness and being joyful each day (once I got over the anger)

17. The commercials about my illness: do not exist due to it being so rare

18. Something I really miss doing since I was diagnosed is: going for walks with my husband, swimming and going out dancing

19. It was really hard to have to give up: cooking up a storm and spontaneously going out

20. A new hobby I have taken up since my diagnosis is: I have always been a voracious reader and so glad that I am(my favorite hobby), but for new that would be my blog it helps me express how I am feeling, the highs and lows

21. If I could have one day of feeling normal again I would: bend down and putting lace- up shoes on (have not worn lace up shoes in years unless Chris is home to help me)....then run away 

22. My illness has taught me: how quickly life can change and how for granted we take each mundane and simple task we perform daily.

23. Want to know a secret? One thing people say that gets under my skin is: how they think they know some magical cure, even with not knowing anything about my illness but a name, and it bothers me how others laugh when they hear the name Stiff Person Syndrome. People it's not funny, educate yourself then if you still find it funny tell me so I can laugh when I'm trying not to scream when a spasm hits.

24. But I love it when people: call me or even better call and tell me they are coming over for a visit

25. My favorite motto, scripture, quote that gets me through tough times is: I shall pass through this world but once. Any good therefore that I do, or any kindness that I can show any human being Let me do it now. Let me not defer nor neglect it. For I shall not pass this way again.

26. When someone is diagnosed I’d like to tell them: I'm the only lucky person in Manitoba to have this but I tell myself to "stay strong" and would say the same to them.

27. Something that has surprised me about living with an illness is: how people's words and actions are so different. I think I always knew this but now the reality is hitting home .

28. The nicest thing someone did for me when I wasn't feeling well was: whenever I am having a bad day and my husband makes me smile through my tears like today when he started blowing on my back when I asked him why he was doing that he said "I'm trying to be the wind beneath your wings". How lucky can a person who is ill be with support like that.

29. I’m involved with Invisible Illness Week because: To bring awareness to a crippling disease 

30. The fact that you read this list makes me feel: grateful that you care to have a better understanding what life is like not just for me but for others with any type of long term illness you may encounter in your life.