1. The illness I live with is: Charcot Marie Tooth Disease – Ehlers Danlos Syndrome (and the lovely symptoms of dysautonomia that go hand in hand with EDS)
2. I was diagnosed with it in the year: 2004 & 2013
3. But I had symptoms since: Forever
17. The commercials about my illness: What commercials? Even doctors haven’t heard of Ehlers Danlos Syndrome and Charcot Marie Tooth disease. Only last week I asked a doctors advice on where to refer my little girl to regarding CMT and she suggested a dental hospital!!
18. Something I really miss doing since I was diagnosed is: My illness has not been sudden but I miss dancing the night away with my girl friends.
19. It was really hard to have to give up: My career, I am still passionate about education.
20. A new hobby I have taken up since my diagnosis is: Writing, I love it!
21. If I could have one day of feeling normal again I would: Just run with my kids, play and climb trees. I don’t really know if I would like to feel normal again for a day I want to know what I’m missing, it would make living my life that much harder again. I would rather someone step into my shoes for 24 hours to understand.
22. My illness has taught me: Not to judge, to be a better person, everyone has a story if you haven’t got the time to listen to that story and to learn about that person then you aren’t qualified to have an opinion. Be kind always.
23. Want to know a secret? One thing people say that gets under my skin is: When people say ‘but your always smiling’ like my symptoms can’t be real. Just because I’m in pain doesn’t mean I need to be miserable all the time. Don’t get me wrong there are times when I am miserable but being happy is a choice and being ill has taught me to appreciate the joy in every day and not to take things for granted.
24. But I love it when people: Just ask. There was an incident a little while ago with a mum at school who was telling everyone, quite vocally, what a bad example I was to everyone parking on a yellow line outside school. Why didn’t she ask? Why didn’t she just look at my disabled place card? She was very observant where my parking was concerned but not that my daughter falls all the time and can’t manage full time school or that she rides in a pushchair even though she is 5. Some people choose to see what they want to see. Take the time to ask, don’t be so judgemental.
25. My favourite motto, scripture, quote that gets me through tough times is: There are many… At the moment there is a song that is our anthem in our house ‘Freak Flag’ from Shrek the musical. Be proud of who you are, be confident in your own skin. You’ll get the gist….
We spend out whole lives wishing
We weren’t so freakin’ strange
They made us feel the pain
But it’s they who need to change
The way they think, that is
It’s time to stop the hiding
It’s time to stand up tall
Say hey world, I’m different
And here I am splinters and all, splinters and all
Let your freak flag wave
Let your freak flag fly
Never take it down, never take it down
Raise it way up high
Let your freak flag fly, let it fly, fly, fly
It’s hard to be a puppet
So many strings attached
But it’s not the choice you made
It’s just, how you, were hatched
30. The fact that you read this list makes me feel: Inspired – to do more to raise awareness.