• Charlotte McGregor-Graham

Don't forget how far you've come...

I don't like complaining or being negative about my situation, because that's not the type of person I am or the message I want to send out to people who are also living with Tourette's Syndrome or other disabilities.

Since my last post, I've faced a few set backs which has left me feeling frustrated with my situation and attitude towards my disability. I've been discharged from physio, I'm 200 miles away from home with no living support, I'm still getting used to using a wheelchair but still trying to walk as much as possible, I'm not gaining weight, the weather is getting worse, the nights are getting dark, and I'm trying to keep on top of my studies.

It's overwhelming to say the least, but at times like this it's easy to focus on what's going wrong and get into negative thinking patterns.

Just before I returned to university I was out with my mum walking the dogs and we met a friend on our walk. It was the first time she saw me using my wheelchair and I told her how much I want to be out of it and back walking around again. She acknowledged my frustrations, but also added, "don't forget how far you've come. There was a time when you didn't leave the house, and now you're studying at university and living miles away from home!"

I remembered how bad things had been in the past. I was reliant on care from my mum and sisters almost 24/7. I didn't go to lessons in school because my tics were so severe and disruptive. I had crippling anxiety so there were many days i didn't even make it into school! I couldn't go out without my mum, I couldn't go out on my own with my friends, and I could hardly feed or wash myself without help some days.

Step by step, over the years, I have learnt to do so many things independently. I can get myself up and ready every morning on my own. I can cook for myself with things to keep me safe in the kitchen such as plastic knives. I can catch the bus or the train to wherever I need to go. I look after Lexi on my own, as well as looking after myself and managing my studies, appointments and finances.

These might seem like everyday mundane tasks that all people have to do, but when living with a disability, all of these things can take a little bit of extra planning, or time, or help to complete.

And that's perfectly okay.

I may not have reached many of the 'milestones' that people my age have reached - I've never had a job, I don't have a degree, I've never been in a proper relationship, and I can't drive - but I've gained so much more life experience through having a disability. I'm more empathetic, I know that the people who are important to me support me 100%, I'm so happy on the path I'm pursuing in music, and I've been able to help so many people in a similar situation to myself through having Lexi.

No matter how frustrated you are with your situation, things can so quickly change.

Last week I was struggling after being signed off from physio and unable to access private treatment due to my diagnosis of Tourette's. But a week later, I met the Head of Movement at college who has offered to help me regain strength in my legs and increase my mobility. I'd gone from feeling let down, disheartened and close to giving up, to supported and optimistic again - literally in a week!

I know there will be challenges ahead. I'll continue to face barriers that will impact my independence and life is not always going to be easy. But when those times come, I'll look back and remember how far I've come...

[Image description: a silhouette of a man sitting with his dog with a dark blue sky. The text reads Tourettes will never stop you from achieving your dreams, it simply adjusts them.]

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