20 Things about my Chiari
1. Diagnosed when? March 2010
2. Decompressed, if so when? July 2011
3. Other additional conditions, if so which ones? Scoliosis, SM, strabismus, osteoarthritis
4. Have you personally met someone else with Chiari? Yes, about 30 people.
5. Most challenging symptom(s)? Pain and sleeping. Crazy bad insomnia.
6. Most embarrassing Chiari moment? Getting told off by an old lady at 4pm for drink driving. I was just walking a bit wobbly!
7. Biggest Chiari frustratsions(s)? Having people look at you as if to say "you don't look sick"
8. Number of medications in your personal medicine cabinet? 12, excluding over the counter products
9. Number of Doctors/Therapists stored in your phone? 3
10. Do you attend Dr appointments solo or with support? I always bring someone with me but, depending on the appointment, I will go in the consultation room alone.
11. Biggest regret that Chiari has created? Missing out on events that friends and family attended. Missing out on Jacob's first holiday and 2nd birthday.
12. Biggest lesson that Chiari has taught? To live each day to the full because you never know what can happen tomorrow.
13. Favorite non-medicinal therapy? Relaxing in a bath with some music or a good book!
14. Worst medicinal side effect? Weight gain from gabapentin, amitryptline and dexamethasone
15. Biggest change in your life since diagnosis? I lost my driving license, moved back home with my mother and was off work for ages!
16. Worst medical test? Lumbar Puncture or having an ICP bolt inserted.
17. Hardest thing to give up because of Chiari? Driving, rollercoasters, and trampolining.
18. Have you become more or less religious since diagnosis? I have never been religious really. I feel that nobody deserves to be ill and if there is someone out there who has made me this way, then why would they do that?
19. Where do you find enjoyment now, that you didn't before? I enjoy life at a slower pace. No going out clubbing or partying. Now I like good friends and some glasses (or bottles) of wine
20. Favorite Chiari websites? Chiari Group on Facebook =D
3. Other additional conditions, if so which ones? Scoliosis, SM, strabismus, osteoarthritis
4. Have you personally met someone else with Chiari? Yes, about 30 people.
5. Most challenging symptom(s)? Pain and sleeping. Crazy bad insomnia.
6. Most embarrassing Chiari moment? Getting told off by an old lady at 4pm for drink driving. I was just walking a bit wobbly!
7. Biggest Chiari frustratsions(s)? Having people look at you as if to say "you don't look sick"
8. Number of medications in your personal medicine cabinet? 12, excluding over the counter products
9. Number of Doctors/Therapists stored in your phone? 3
10. Do you attend Dr appointments solo or with support? I always bring someone with me but, depending on the appointment, I will go in the consultation room alone.
11. Biggest regret that Chiari has created? Missing out on events that friends and family attended. Missing out on Jacob's first holiday and 2nd birthday.
12. Biggest lesson that Chiari has taught? To live each day to the full because you never know what can happen tomorrow.
13. Favorite non-medicinal therapy? Relaxing in a bath with some music or a good book!
14. Worst medicinal side effect? Weight gain from gabapentin, amitryptline and dexamethasone
15. Biggest change in your life since diagnosis? I lost my driving license, moved back home with my mother and was off work for ages!
16. Worst medical test? Lumbar Puncture or having an ICP bolt inserted.
17. Hardest thing to give up because of Chiari? Driving, rollercoasters, and trampolining.
18. Have you become more or less religious since diagnosis? I have never been religious really. I feel that nobody deserves to be ill and if there is someone out there who has made me this way, then why would they do that?
19. Where do you find enjoyment now, that you didn't before? I enjoy life at a slower pace. No going out clubbing or partying. Now I like good friends and some glasses (or bottles) of wine
20. Favorite Chiari websites? Chiari Group on Facebook =D
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