Sue Crook and the Red Wheelies

“I try not to say ‘no’ to anything”

Sue Crook, 65 from Canterbury (on the far left in the photo), tries to see the positive in every situation, and was part of the ‘Red Wheelies’ until they retired recently.

“I worked in the care industry for decades, looking after people in residential care homes – elderly residents as well as those living with Alzheimer’s. It was challenging and hard work, but I loved it.

When I started to notice numbness in my feet in 1990, I wondered if it was down to the stresses and strains of my job. But then that feeling spread up my body and was joined by tingling down my spine and back.

By the time I was diagnosed with relapsing remitting MS later that year, it wasn’t a huge surprise – I’d had a chance to research my symptoms. But that didn’t make it any easier to come to terms with at the age of 40.

I was able to carry on working until 2001, but then had to take medical retirement as I physically couldn’t cope any more.

Being diagnosed with an illness like MS is unfair, but having spent decades caring for others myself, I felt it was doubly so.

How things are day to day

Some 25 years on from my diagnosis and I now have secondary progressive MS. Luckily, I’m not in pain and my speech and upper body are OK, but my legs and balance are both problems.

A lack of spatial awareness means my feet don’t know where the ground is. It’s a bit like trying to walk a tightrope in a gale.

Coping with MS

In the world of MS, things change rapidly, so I take life half an hour at a time. I’m strong willed and stubborn, and this goes in my favour because I simply won’t let MS get to me.

If I can’t achieve what I need to one way, I’ll find another way. I might be wiped out at the end of it but at least I’ve done it.

When people I meet find out I have MS they sometimes say ‘Oh, I’m sorry to hear that’. I reply ‘Don’t be sorry – it’s not all bad.’ You have to embrace it.

I put some of this positivity down to spending years being upbeat and chipper for the people I cared for at work.

Living alone has helped me

I’m separated from my husband and live alone – and am incredibly independent. My two grown-up sons live locally, and although they’re supportive, I find it hard to ask for help. This might be because I spent so many years as the ‘strong one’ caring for other people.

Getting about, I use a combination of a tripod, two very colourful purple crutches, a scooter and a power chair, which I use when my balance is poor.

I won’t allow anyone to push me in my chair, which is about keeping some control over my life. And can’t help wonder that if I had someone here helping me, I’d be using a wheelchair 24/7.

Living on my own I can do what I like, when I like – even if that means coming home after a big day at 6pm and going straight to bed with a meal on my lap.

Don’t say no

A friend once told me she didn’t say no to anything, and those words have stuck in my head.

So 10 years ago I said ‘yes’ to members of Canterbury Fire Brigade lifting me up Mount Snowdon to fundraise for the centre.

I also said ‘yes’ to becoming a member of the Red Wheelies mobility scooter formation display team until we retired in March 2015. Not only did we wheel across Hadrian’s Wall and travel from Winchester Cathedral to Canterbury Cathedral along the Pilgrim’s Way, but we appeared on the Michael Ball Show on ITV and even did a star turn on Britain’s Got Talent!

Then there was the 24-hour endurance challenge that landed us a place in the Guinness Book of Records for the longest distance travelled on a mobility scooter in 24 hours…

I still miss work hugely – even all the moans and groans you get in every workplace. And life’s far from perfect. But because of MS I’ve been able to do all sorts of things I just wouldn’t have had the chance before.

The supermarket test

At the centre, I have oxygen therapy for energy and reflexology to stimulate feeling in my feet.

I have them both on the same day, and they make it far easier for me to walk afterwards. I know this because I do the supermarket test.

As the years have passed, it’s been harder for me to walk around a supermarket. But I know if I go shopping just after I’ve had reflexology and oxygen therapy at the centre, I can walk around the aisles using my tripod. Any other day, I’d need my power chair.

Finding out about the centre

When I first came to the centre 12 years ago, I didn’t know whether I was coming or going. My marriage was breaking down and I was struggling to cope with being medically retired from work.

The place has been a lifesaver. For anyone who’s making up their mind about coming along, all they have to do is walk through the doors. They’ll soon be hit by a warm wave of support, friendliness and understanding.

Being part of a community of people at the centre has helped me meet the loveliest people who are now true friends. We all look out for each other. I might not be able to say that without MS.”