1. The illness I live with is: Charcot Marie Tooth Disease, hypermobile 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
4. The biggest adjustment I’ve had to make is: Acceptance – not that I have the conditions but the impact that they have on my daily life
5. Most people assume: I’m fine because I look okay
6. The hardest part about mornings are: Getting up with a smile on my face and getting all three children off to school. Some mornings there is pain, others fatigue, others dislocations. Some all three! Then I have to motivate the children who may be feeling some or all of the above.
7. My favourite medical TV show is: House – I’m rather good at guessing the unusual medical conditions that are featured.
8. A gadget I couldn’t live without is: My ipad because it connects me with the world and allows me to write where holding a pen is tricky now. Also my water heater, it saves me lifting the kettle. When I go on holiday or to visit a friend I struggle to make a cup of tea and we all know there is nothing that can’t be solved with a nice cup of tea.
9. The hardest part about nights are: Pain and fatigue, pain is always worse in the evenings for me particularly if I haven’t paced the day particularly well and fatigue is just a killer.
10. Each day I take 21 pills & vitamins.
11. Regarding alternative treatments I: Believe in staying strong with a combination of Pilates, swimming, walking and physiotherapy and managing pain by pacing daily activities. It is key to me living well with EDS and CMT.
12. If I had to choose between an invisible illness or visible I would choose: This is tricky, my illness isn’t invisible to those that know me well – they see it in my eyes. Does anyone else really matter.
13. Regarding working and career: At first the fact that I could no longer teach anymore killed me but it has opened doors to many new opportunities that I would not have had if I had been a career teacher. It has also allowed me to be at home with my children to watch them grow and I am so grateful for that, I would not have made that decision if I had been well.
14. People would be surprised to know: That I can be standing having a conversation with someone quite normally with a joint dislocated (like a rib, wrist or a my big toe) and if I didn’t know you well I wouldn’t even tell you!
15. The hardest thing to accept about my new reality has been: To be the best I can be everything in my life has to be slower paced. This is hard for me as I’m driven but to stop feeding into the boom bust cycle I have had to learn.
16. Something I never thought I could do with my illness that I did was: There was a point where my mobility was awful, where walking on grass would cause a dislocation. I was told by a doctor that I would be a wheelchair user by the time I was in my mid 30’s. I’m 39 and I walk my dog around the field each morning come rain or shine. I am thankful that I can.
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 doctor’s 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
26. When someone is diagnosed I’d like to tell them: It will be OK, there is a period of adjustment, sometimes grief, loss, sometimes relief, don’t lose sight of your hopes and dreams and who you are as a person, it will be OK.
27. Something that has surprised me about living with an illness is: What a positive experience it can be and the amazing relationships that have been fostered because of it.
28. The nicest thing someone did for me when I wasn’t feeling well was: It’s the simple things that mean the most, someone just knowing without me having to say because they ‘get me’ and understand my illness. Taking the time to chat, not about how I’m feeling but normal daily stuff. To laugh because that really is the best medicine!
29. I’m involved with Invisible Illness Week because: It is a powerful initiative uniting those who live with invisible illness and giving them a voice.
30. The fact that you read this list makes me feel: Inspired – to do more to raise awareness.