“Do you know that’s a disabled parking bay?” – my experience of MS misconceptions

“Alright buddy. How are you doing? Are you not working today?” The question I fear the most. I could be out for my short walk. At the shops using the trolley like a walker. At day time classes. “Are you not working today?” Like a knife in the heart.

I go to the dentist. “Can you provide evidence of your benefits?” Louder please. I don’t think everyone heard it.

My symptoms might be invisible. But they are real.

If I’m having one of  my better days I’ll try not to use a disabled parking space. When it’s not a good day, a parking space close to where I’m going can make all the difference.

On more than one occasion as I’ve climbed out the car, someone has asked “Do you know that’s a disabled parking bay?” The feeling of being an imposter hits me again.

It may not be evident but my MS is real. Pain, fatigue, brain fog, stumbling, medication - everyday. Channelling the spirit of Elvis Presley every night as my legs jerk and shake during my disturbed slumber. My appearance may seem like a healthy individual, but it’s not always the case. I can give the  appearance of a swan, but inside my symptoms are an ugly duckling.

People can’t see brain fog

The confused look during a conversation when I can’t remember the answer to something that had happened the previous week. “No sorry, I can’t remember. It happens sometimes.”

I’m often asked. What medication are you taking? It sometimes seems like a game of one-upmanship in certain circles. I know this. What is it? A confused daze. “No, sorry I can’t remember.”

At the gym. I couldn’t work out what to do with the machine, even though I use it twice a week.

Always the same routine. Machines one to ten, in that order. I keep a note of the weights and repetitions or times for each piece of equipment. But today nothing was making sense. How do I sit? What way do I turn? I racked my mind but nothing came. Do I do this? Do I do that? Nothing. Hoping that no one had noticed, I took a drink of water and moved to the next machine. I remember how to work this one. 

My time at the gym was ruined. Normally relaxing, I was now confused how this had happened. I could have asked one of the gym assistants, but they had seen me using the machine, that machine, so many times before. I imagine them saying: “Are you joking? How can you forget?” No, I tell myself. Just move on.

I can’t remember the steps, but I will persevere

I thought about how I can combat these short term memory issues. Line dancing. My son Luke had been wanting to try it. My rationale. Instructions to be followed. Would this work or would it be a choreographed step too far?

I attended because I always have a giggle thinking about Uncle Bryn and Nessa in Gavin and Stacey singing ‘Islands in the stream’ at a party. The audience line dance in unison. So funny.

The beginners classes are fun but difficult for my cognition and balance. But I persevere. “Other side Grahame. No. The other way. Let’s do it again. Have you got it Grahame? Are you sure?” The ladies in class stop to assist me. They are very kind and patient. I think to myself: concentrate, balance. Remember to practice at home. I can’t even remember the last steps as I am leaving. But I will persevere.

What will MS trick me with today, and when?

There’s a Kenny Rogers song:  ‘I just dropped in to see what condition my condition is in’. This sums up my thoughts each morning. What condition is my MS in today? There are days when if there are no disabled spaces beside my destination. I will just drive home. The extra effort of the further walk would impact too much on my condition.

College one day a week - too much? I have missed more days than I have been. When I do go, I have to leave early with the pain or fatigue.

Don’t judge a book by its cover

So it looks like life has more question marks now. But the answers will come back to me eventually. Maybe not in the correct order or the right format.

Just give me some time.

But questions like: “Do you know that’s a disabled parking bay?” I can do without.

MS can be invisible to other people, but it is a disability. Sometimes I think it might be easier to wear sack cloth and ring a bell when I go out, to make people aware that I have a condition. But I shouldn’t have to.

I am not an imposter. My disability is real. Very real.

Encouraging people to #MSThinkAgain 

We’ve teamed up with seven of the UK’s biggest MS charities to challenge harmful assumptions. And help people living with MS to be heard.  

Find out how you can get involved in the #MSThinkAgain campaign.