Thursday, 6 September 2012

One day, I will be fine.

I know, I know, I have been slacking with the carnival. Between going back to work, having my ICP bolt done, breaking my foot and feeling crappy I just have been lazy.

This months carnival theme is How are you doing? Theme: Finally answering truthfully.

How am I doing? My normal response would be the generic, FINE! I am fine! I am grand! I feel great! Normally, these would be lies.
Most days I am able to look "normal" look fine. However internally I am feeling rubbish.
I feel I have lost a fair amount, quite a lot physically. I just try and remember that I am not about what my body allows me to do. That does not define oneself. The question is are we our bodies or our minds? Things I have lost are important to me because they help define who I am, don't they? I was a good musician, a good teacher, and enthusiastic person. Now, I am getting back into work, playing music again, much worse than before, due to sore hands. I was thinking of all I have lost and I have lost a lot, but something within me fights against that train of thought. Although some of the physical may have gone, some for ever, some not so, the essence of who I am stays strong. Who I am is still very much alive and functional. People need to remember this distinction. One can work as hard as they want on anything that they think will help to shape who they are, but if one does not know who they are without all of that, then when it comes to the time to rely solely on their personal strength they may falter. I am still trying to learn the new me, the real essence of myself. No one will ever reach true happiness unless they realise there is always a ceiling, a point where you have pushed yourself to be the person you will be happy with, not perfect, but fine.
So maybe one day, maybe in the near future, maybe along my long and winding path, I will be able to look someone square in the eyes and say I AM FINE!

Sunday, 2 September 2012

20 Things about my Chiari

Chiari awareness month! 
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