Hi, my name’s Tina Marie Evans, I’m 32 years old and born and bred in the Gwendraeth Valley, West Wales. At the age of 16 I noticed something was up with my balance, I’d walk into friends and I found it hard to keep my balance whilst closing my eyes to pray in assembly. After some doctor appointments and a few tests I was given the diagnosis, Friedreich’s Ataxia. We had never heard of this rare condition, and being the typical Tina, at the time, I told my parents to do what they had to, I didn’t want to know, and just carried on with life.
I finished high school with three A-levels and went onto Aberystwyth University where I studied Theatre, Film and TV, made some amazing friends and had the best three years. I would consider myself to be more practical than academic, but due to increasingly losing my balance I was forced to stop acting and take on the behind the scenes role. I’m a positive person, and one of my key abilities is to see the positive in every situation. Having some experience in researching landed me my first job with BBC Wales as a researcher for the Education department then with Radio Cymru.
Working in Cardiff prompted my move to Cardiff, I lived here for 7 years and grew as a person. Before moving to Cardiff I had to battle with my pride on whether to give in to the wheelchair,, at the time ‘giving in’ is what it felt like. But I quickly became to realise that it was the best decision I could’ve made. Doing the small things like going to town or walk with friends became hard work due to tiredness and slowly my confidence dropped, but the wheelchair gave me back the freedom to get around and slowly brought back my confidence, it actually made me feel more able.
Telling me that I can’t, motivates me to prove that I can!
‘Your test results show that you have Friedreich’s Ataxia..
…down the line patients can’t work…..can’t drive…..can’t live independently….’
Much of my diagnosis was a blur, but the repeated word that resounded in my head was CAN’T.
At a time when I needed some kind of hope, my head was just being filled by a negative word.
I have had a busy but fun month, letting my hair down and doing things that make me happy and feed my wellbeing right. Here’s a vlog I made last weekend during a camping trip, spent outdoors in the fresh air, soaking in the vitamin D.
August 18-21st, my friends and I went to V Festival and had an amazing weekend. Here’s my vlog of the weekend, I show the accessibility of the festival and how disabled people can enjoy the awesome experience of going to a festival.
As you know I eat clean, gluten free, dairy free and refined sugar-free. I sometimes cheat, if I’m at a restaurant with no healthy alternatives. But as I’m learning to listen to my body, I instantly feel the effects of going off track, this keeps me motivated to be pretty consistent.
When the waiter asks at a restaurant ‘could I tempt you with the dessert menu?’ my reply will normally be ‘no, I’m ok thanks’ and the next words that usually follow from the table are ‘go on you’re allowed a treat’
Why do we deserve a treat? Isn’t it just like a bribe? Do something good and you’ll get a treat?
Up until a year and a half ago, I used to eat anything I wanted, made no connection between my health and what I was feeding my body, believed every word that the doctor said…he knew best right?
A year and a half ago, my cousin made me watch Food Matters documentary
A year and a half ago, I woke up.
In that split second, after the annoying alarm jingle goes off , when my brain wakes up and tries to figure out – where am I? What day is it? What am I doing? My eyes ping open, it’s Ski Wednesday! ?
I want to run the half marathon. But I can’t run. I’m disabled.
The next option is to wheel it, in my wheelchair. But wait, that’s not an option, I struggle to wheel down the corridor.
First blog post. Well what better timing than on my birthday….ok few days after but close enough.
It was my 32nd birthday. 32 years of being alive. Worth celebrating, right?
I was diagnosed with Friedreich’s ataxia at the age of 16, a life-limiting condition. Instead of seeing this as a negative, I have and continue to live life to the fullest and try not to take it for granted. Every birthday since I have always made plans to celebrate.