Thursday 13 September 2012

Invisible Illness - 30 Things

I have an invisible illness. I've already blogged about it this week, but today I found out that it's Invisible Illness Week! How fantastic considering Vulvodynia doesn't really have a week or a month of any sorts.
Coincidentally, this week has been one of my biggest flare ups. I'm still stuck in leggings and tunics and itching to wear my jeans and lace tops. I bought new leggings from Roots today, 98% cotton and absolutely amazing. However, the bad/poor leggings from earlier this week have resulted in some unpleasent chaffing... but that might be a little tmi.

Invisible Illness has an opportunity for us to blog about it and share! They have a thirty things list, here I go!

1. The illness I live with is: Provoked vulvodynia

2. I was diagnosed with it in the year: 2011

3. But I had symptoms since: 2010

4. The biggest adjustment I’ve had to make is: no more sex/jeans

5. Most people assume: I'm being overdramatic

6. The hardest part about mornings are: ATM - figuring out what to wear that wont hurt. 

7. My favorite medical TV show is: A Gifted Man

8. A gadget I couldn’t live without is: Our Mimi -- (R rated)

9. The hardest part about nights are:  nothing! I'm encouraged to sleep without undies! How great is that1 

10. Each day I take 2 pills & vitamins. (No comments, please) --- those aren't for my condition, I have no treatment

11. Regarding alternative treatments I WOULD LOVE TO TRY ANYTHING 

12. If I had to choose between an invisible illness or visible I would choose: I haven't thought about this one... 

13. Regarding working and career: I work retail with jeans where I'm supposed to sell jeans I can't sell, it's a struggle... how am I supposed to be a role model. 

14. People would be surprised to know: My husband and I are happily married and enjoy our time together, he proposed knowing full well sex wasn't going to the highlight of our marriage. 

15. The hardest thing to accept about my new reality has been: my sexuality. 

16. Something I never thought I could do with my illness that I did was: no anser

17. The commercials about my illness: don't exist, we don't talk about it, our society is too taboo 

18. Something I really miss doing since I was diagnosed is: sex. ;)

19. It was really hard to have to give up: sex ;)

20. A new hobby I have taken up since my diagnosis is: blogging. 

21. If I could have one day of feeling normal again I would: ride jeans while bike riding? 

22. My illness has taught me: that there are many others like me in pain. but not visible, to appreciate ourselves

23. Want to know a secret? One thing people say that gets under my skin is: when they can't talk about it. or they don't want to talk about it.... and when they think I'm just having sex all the time because I'm a newly wed. 

24. But I love it when people: relate and I can encourage them to see a nurse and talk to me and each other about sex. 

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

26. When someone is diagnosed I’d like to tell them: join the vulvodynia support group, see a naturopath, start yoga and take care of your body, especially your muscles. 

27. Something that has surprised me about living with an illness is: how much it makes me build a strong personal relationship with my husband based on intimacy. 

28. The nicest thing someone did for me when I wasn’t feeling well was: hold me. hug me. 

29. I’m involved with Invisible Illness Week because: I think we need to talk about it and not be ashamed. 

30. The fact that you read this list makes me feel: HAPPY AND ECSTATIC



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