Coping with the wobbles – a neurology story.

What challenge does this story focus on?

In April 2018 I had sudden onset Functional Neurological Disorder, a condition that means I sometimes find it hard to move my body, or my body shakes, goes into spasm and adopts strange positions! Sometimes my brain freezes and I start to cry. I get so very tired.

It comes and goes, and is triggered by stress, sensory overload and tiredness. It’s all a bit weird. The wiring in my brain goes wrong temporarily. It seems to be getting better, but it’s a slow road to recovery.

How has this challenge affected you?

This condition has changed my life. I don’t know when it’s going to come on. When it does it can be in very public places. Walking my younger daughter to school is really triggering, particular when we get to the part when there are lots of families walking along the same pavement or in the noisy playground.

It leaves me very tired. I have to sleep a lot more than before and sometimes take to my bed for a day or two. It’s meant that I’ve had to change my work and it’s also affected my children.

What has or is helping you to move forward with this challenge?

I think believing that I will get better is pretty crucial to me. Taking every day as it comes, and rather than thinking “I can’t do that”, instead say “I can’t do that today, but I could try tomorrow”.

I’ve been open with people about what happens to me and what people can do to help me. My movement problems are so public, so I haven’t felt like I’ve had a choice. But this has been good. I feel supported and people seem keen and willing to help out. Family and friends have been amazing.

My bike has been brilliant too. Cycling takes less energy than walking, so it’s a great way to get around, and my brain seems to behave better whilst on my bike. Sometimes I use my bike to prop me up.

What have you learnt as a result of this challenge?

Initially I was worried about getting stranded somewhere feeling ill, but then I learnt that things always worked out OK. Someone would help me if I really needed it and I’m so grateful for that.

I’ve learnt to ask for support, for me and also for my children. Being open about my stuff often encourages others to say what they find a challenge too. It seems we’ve all got something that we struggle with.

I also now realise I’m much more resilient than I thought. I’d never have thought that I could have had such quality of life with this neurological disorder, but actually life is good. And I’m really grateful for what I can do.

How do you use this learning in your life now?

Everything is a bit of a journey, so I’m learning as I go. I think being forced to rest can be a good thing. Rather than focus on what I can’t do, I can really enjoy the positives. So feeling tired means a chance to listen to a good radio programme, snuggle under the duvet or listen to the birds.

I also think that learning that things can work out OK on a day to day basis, means that I am more positive about the future. Whatever happens, I’ll find ways to get through it, even if that takes a bit of time.

Because of the importance of being able to cycle when my legs will hardly walk, this has encouraged me to talk more about the benefits of cycling for disability. I’m now organising a mass bike ride around NHS places in our city with Cycling UK, to raise awareness of cycling for accessibility.

I feel proud that I am more resilient than I might have imagined. This has been a real confidence boost.

What positive message would you like the reader to go away with?

Every cloud has a silver lining, and that silver lining might be really beautiful.

Don’t be afraid to reach out. Be open and honest about what helps you get through your bad days.