This quiz is adapted to my situation from Invisible Illness Awareness Week’s “30 Things About My Invisible Illness meme“. I don’t have an invisible illness, which is why I’ve adapted it and it doesn’t have 30 questions any more, but I thought it would be a good introductory post to share some things about me.
1. The illness I live with is: congenital muscular dystrophy
2. I was diagnosed with it in the year: I think it was 1992 maybe?
3. The biggest adjustment I’ve had to make is: learning to pace myself rather than try and do everything straight away!
4. Most people assume: that because I am a wheelchair user, I must be affected cognitively.
5. The hardest part about mornings are: dealing with pain and waiting desperately for my medication to kick in
6. My favorite medical TV show is: a toss-up between Holby City and Casualty for drama, and the early episodes of Scrubs for comedy
7. A gadget I couldn’t live without is: my Macbook. It’s one of my main ways of keeping in contact with my friends and family – I’d feel so isolated without it, especially on days I don’t feel up to going out on
8. The hardest part about nights are: getting comfortable and stopping myself from worrying/stressing so I can fall asleep
9. Each day I take 14 pills & vitamins.
10. Regarding alternative treatments I: don’t believe in it completely, but I have tried several alternative therapies: I like getting a massage or reflexology. I also recently bought a magnetic therapy bracelet to see if it would help with pain relief, but I haven’t seen any benefits yet.
11. If I had to choose between an invisible illness or visible I would choose: a visible illness. As much as I hate being stared at, it must be extremely difficult for people with invisible illnesses to be taken seriously as having a debilitating condition, and not be called ‘lazy’ or a ‘scrounger’
12. Regarding working and career: I would love to be able to work and have a career, but my fatigue and pain levels mean I can only be in my wheelchair for a maximum of 5-6 hours. I do some voluntary disability campaign work on a casual basis, and am hoping to start volunteering in a library for a few hours a week soon (why I can’t just yet will be explained in another post soon!)
13. People would be surprised to know: I wouldn’t want to completely cure or get rid of my disability. I don’t think I would be the same person at all without it – my whole character and outlook on life has been shaped by my disability.
14. The hardest thing to accept about my disability has been: that I’m really unlikely to be able to have children, unless with a surrogate or through adoption – due to my scoliosis (curvature of the spine) and small frame, carrying a child would squash my lungs too much and affect my breathing (which is already fairly crap!). It never used to bother me, but in the last year, I’ve become really broody.
15. Something I never thought I could do with my illness that I did was: go and live away from home at university.
16. A new hobby I have taken up recently is: blogging! Before I started blogging, I’ve taken on moderating a forum for people with neuromuscular disease (the umbrella term for many muscle conditions (including my own)
17. If I could have one day without my disability I would: go on a bicycle ride and enjoy the feeling of one wind in my hair and being able to take deep breaths of the fresh air.
18. My illness has taught me: never to judge a book by its cover
19. Want to know a secret? One thing people say that gets under my skin is: “have you got a license for that?” (referring to my powered wheelchair)
20. But I love it when people: compliment my positive outlook on life and recognise how hard I’ve worked to achieve things
21. My favorite motto, scripture, quote that gets me through tough times is: “Believe you can and you’re halfway there.” – Theodore Roosevelt
22. When someone is diagnosed I’d like to tell them: never to give up hope. The prognosis is quite frightening, but there’s no reason you can’t live a happy, fulfilled life.
23. Something that has surprised me about living with an illness is: how amazing it is to belong to a community of people with the same/similar conditions to myself – we have such common experiences and just understand and can relate to each other’s problems
24. The nicest thing someone did for me when I wasn’t feeling well was: when my cousin came to see me nearly every day when I was really poorly with pneumonia – she’d sit with me for hours, even when I was sleeping, just so I’d know she was by my side. She even threatened to dump her boyfriend when he was moaning about her spending so much time with me!