Sunday, 1 August 2010

Things you may not know!

30 Things About My Invisible Illness You May Not Know 1. The illness I live with is:
- Chiari Malformation Type I (CM or ACM). In a nutshell, the back/bottom of my brain descends into my spinal canal.

2. I was diagnosed with it in the year:
- 2010

3. But I had symptoms since:
- Forever, without realising it till now. I can't remember a time when turning round didn't make me feel sick. However my symptoms started properly on the 25th March 2010

4. The biggest adjustment I’ve had to make is:
- Learning that I have limitations and I can't always do what I would like, I have to try and predict how things will affect my symptoms and give myself time to recover from them. I get tired out just walking for a few hours. So if I plan a day out, I also have to plan the next day as a rest day.

5. Most people assume:
- That I am drunk. When I am tired I stumble over nothing and can't walk very well.

6. The hardest part about mornings are:
- Everything. I don't sleep well so mornings kill me. My headache tends to be bad in the morning.

7. My favorite medical TV show is:
- Casualty, Holby city and scrubs!

8. A gadget I couldn’t live without is:
- My phone and computer. How else would I keep in touch with people whilst stuck in my bed!

9. The hardest part about nights are:
- Being awake for the whole night, and realsing its light just as my eyes start to feel heavy.

10. Each day I take:
- 60mg Amitriptyline. Between 50mg and 150mg of Diclofenic. 800mg Gabapentin. 150mg of Sumatriptan (doesn't help) 5mg Folic acid. Occasionally I will take other painkillers, no idea of the names.

11. Regarding alternative treatments I:
- have yet to try anything.

12. If I had to choose between an invisible illness or visible I would choose:
- niether, but I guess I am happy with mine. On good days I can go out and no one bats an eyelid.

13. Regarding working and career:
- I am off long-term sick. Hoping to go back as and when is possible. Doing my degree with the Open University.

14. People would be surprised to know:
- How much of my condition I hide. I don't want people to know how sore I am all day long.

15. The hardest thing to accept about my new reality has been:
- Seeing people get on with things and me being stuck behind. Having to live with my mum still and generally putting my life on hold.

16. Something I never thought I could do with my illness that I did was:
- Smile, but I can and I do!

17. The commercials about my illness:
- Nothing. Not even my GP had a clue what it was. When I told him, he thought I was making it up and accused me of wasting his time. Thanks!

18. Something I really miss doing since I was diagnosed is:
- just going with the flow. Getting drunk, hanging out and belive it or not working!

19. It was really hard to have to give up:
- Work.

20. A new hobby I have taken up since my diagnosis is:
- Blogging =D

21. If I could have one day of feeling normal again I would:
- Go on a roller-coaster, skydive, bungee jump and get drunk!

22. My illness has taught me:
- who matters in life. My friends Family and boyfriend.

23. Want to know a secret? One thing people say that gets under my skin is:
- "Don't you just have a migraine?"

24. But I love it when people:
- love me for who I have become, rather than remembering who I was!

25. My favourite motto, scripture, quote that gets me through tough times is:
- For everything a reason!

26. When someone is diagnosed I’d like to tell them:
- to read about chiari. And to take it easy!

27. Something that has surprised me about living with an illness is:
- how something so serious can be unheard of. Its not common enough for people to just know about, but not rare enough that it get reported when someone is diagnosed.

28. The nicest thing someone did for me when I wasn’t feeling well was:
- make me smile.

29. I’m involved with Invisible Illness Week because:
- I want other people to know that there is support out there and not to go it alone. Also, people shouldn't judge a book by its cover. Just because I stumble and sway doesn't mean I am a pisshead!

30. The fact that you read this list makes me feel:
- like I am not invisible any more!

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18 at

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