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The Challenges of Living With Multiple Sclerosis and Working in Retail

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I’m not sure how many people who have multiple sclerosis (MS) work in retail, but in the five months since I have been diagnosed, and the years before I was diagnosed but still experiencing symptoms, I have found it particularity challenging.

Unfortunately for me, retail is all I’ve ever worked in.

Retail is a very fast-paced business. So as much as they try to support you, that’s just the way it is. I had a support plan to begin with but now that I’m as good as I’m going to be, I’m trying to get back to normal.

When the shelves are empty, one of my team is off sick and there’s still 10 cages to work, what else can I do but get on with it? At the end of the day that’s my job.

My colleagues try to understand, and like to think that they are helping. But the reality is, none of them understand anything about it. When the fatigue hits me and I say to them that I’m tired, the response is most commonly a laugh and a “how can you be tired?!” I’m sure as the years go on I’ll learn to deal with that response, but that infuriates me.

Then I try to explain how that half hour I had to spend helping out on the checkouts is too much, as my head goes fuzzy after about 20 minutes. Constantly making conversation with customers, looking right and left as you scan things through, working out their change… such simple things. That exhausts me. And after about 20 minutes when I look at the change in my hand I struggle to add up what’s there. When I look up at the customer it takes me a few seconds to focus. But yeah, how can I be tired?!

Perhaps I should elaborate. I am a retail manager. So I have a team who work underneath me, yet I work for a team above me. And I’m not the type of manager who just sits about and delegates everything. I believe that working with your team is the way to get the best out of them.

The fatigue isn’t even the worst part of my MS. At the moment for me, it’s the pain and weakness in my leg. Luckily for me, gabapentin has reduced the pain for me for the majority of the time. But when I’ve been on my feet too long or have been doing something I maybe shouldn’t, the pain can vary from the feeling of someone dragging a knife down the vein in my leg, to someone squeezing the inside of my knee tighter than you can imagine. And don’t get me wrong, there isn’t a moment goes by that I’m not grateful that I can walk. In November 2016, when my worse relapse hit (before I was diagnosed) I couldn’t lift my leg off the ground. I lost count the amount of times I tried to take a step and fell. But the last time, when my face hit the ground first, I was admitted to hospital and was kept in for two weeks. And all I wanted then was to be able to walk. Now a mere five months later, I’ve been walking for a while and from afar I’m back to normal. So not doing something because I know it’ll cost me, or not helping someone because I worked myself too hard the day before isn’t always an option.

Don’t get me wrong, some of my colleagues really watch out for me and try their best to understand. But I still have to spend at least some part of each day explaining to them what multiple sclerosis actually is and how it’s affecting me.

And don’t even get me started on my advancing cognitive problems. I tend to be OK at the start of the day, but at the end of the day, things get a bit jumbled. I can be having a conversation with someone, a colleague or a customer, and I’ll be completely unable to find the word I’m looking for. Or my brain will subconsciously replace a word with a completely random one. Customers tend to just give me a strange look, and I’ll laugh it off saying it’s been a long day. Colleagues laugh saying it’s old age (I’m 27), or just look at me in a concerning way. Not sure what’s worst to be honest. If they only knew that every time I do that I become more terrified that there is increased inflammation in my brain.

Hopefully it will all get better with time. I do my best to just work on myself and not worry about what others think. The real things that matter to me are family, friends and travel. As long as I have all those, I am a very lucky woman. I know that people have it a lot worse than I do. And I am so thankful every day for the things I am able to do, such as walking up stairs and putting my socks on, as it wasn’t so long ago that I couldn’t.

For all those out there with MS, keep your chin up. We can do this.

I’ve always been quite an ambitious person, so I’m now not sure where to go next. How do you go for an interview and explain that you have MS, and that you don’t really know what you’re going to be able to do day to day, and you have no idea what you’ll be able to do next year? Just like how do you explain to those people in your team why you can’t help them pull 40 cages off the wagon because your leg keeps giving way, without feeling like you’re asking for sympathy?

I try to share the occasional article on MS in the hope that each time another person has a look and understands this condition a bit more. Not just for me but for everyone. Things could be so much easier if more people understood that little bit more about this “invisible” condition.

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Thinkstock photo by Wavebreakmedia

Originally published: April 7, 2017
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