What's The Phrase?

Know the disease know the person... or is it know the person know the disease?

Either way, I’m learning every day how incorrect both those statements are.

No matter the illness, disability or disease, no two people are impacted the same. I mean, yeah, while some of the symptoms may affect everyone, or a certain drug or painkiller may have the same positive outcomes; the impact that something like MS has on someone’s life can’t be duplicated, no matter how similar the situations may seem.

The NHS website describes Multiple Sclerosis (MS) as a condition which can affect the brain and/or spinal cord, causing a wide range of potential symptoms, including problems with vision, arm or leg movement, sensation or balance. The website also gives a list of symptoms which vary widely from person to person and can affect any part of the body. The main symptoms include fatigue, difficulty walking, vision problems such as blurred vision, problems controlling the bladder, numbness or tingling in different parts of the body, muscle stiffness and spasms, problems with balance and co-ordination & problems with thinking, learning and planning, to name just a few.

But MS affects more than just your body, we spent some time with 3 very lovely individuals from the MS Group in West Dunbartonshire, because, while we can read up on MS and note all the symptoms & ways it can impact your life, truthfully you don’t know the full story until you’ve spoken with the people who have to live with it.

Over the course of this blog entry and maybe even the ones to follow I’m going to introduce you to these 3 fantastic people who took time out of their day and let us get to know them a bit better.

Firstly, I want to introduce you to Ann, who to me is an inspiring individual. Ann was diagnosed with MS at 32 and though Ann was quite open with how long ago this was I’ll keep that between us; you should never ask a lady her age and all the gentlemanly like stuff.

Ann described to us how MS changed her life, and it wasn’t an overnight process like many illnesses. When we asked her to tell us about how her disability impacted her life, Ann said,

“It’s multiple sclerosis, I’ve had it for a lot of years now and I think I’ve gradually gotten used to it. Not so much gotten used to it, but I’ve learned how to get around it in ways, basically to live with it as best I can...When I first found out I had MS my life didn’t change immediately because it’s a slow progressive thing, but I found that over the years I was gradually getting worse and worse and now there’s things that I just can’t do now that I took for granted before”.

 She went on to tell us how things like washing her cup after having a coffee or trying to carry something and walk at the same time, were very difficult daily tasks for her. Ann can no longer cook without her husband close by and has had to place her furniture strategically around her home so that she has something to hold on to when she wants to move about. In her words, “It’s quite annoying actually it really is”. I’m sure for many of us we’d have a host of other words we’d use for it but Ann, ladylike as always, has a calm manner is explaining her frustrations.

Taking a cup through to the kitchen, isn’t something that many of us would think about as a strenuous task or even something that would take a lot of thought and effort, however for Ann and what I imagine to be a number of people with MS, the concentration required to make sure you don’t drop that cup can be quite exhausting. 

“I’ll take to empty cup and take it through to the kitchen, holding on to the furniture on the way and holding on to the mug by the handle, really tight because if I stop concentrating on it I’ll drop the mug. I’ll go in and I just put the cup into the basin now because I can’t stand there and even rise the cup out and put it up. It’s a pain in the butt to be quite honest with you, it really is”.

We talked to Ann about the impact MS had on her life early on, what was work like? Where they able to adapt for her changing needs? Was she able to continue working? And I’m pleased to say that work life was a positive experience for Ann while she was still working. Though in Ann’s words, she “was a lot fitter then right enough”, her work seems to be very good to her for the time that she was there. Ann told us how the District Manager had come to the store she worked at not long after she’d started to make sure that she didn’t want for anything and to see what, if any, changes had to be made to make life a little easier. Though Ann pointed out that the only thing that needed fixing was the fact that the carpet grips didn’t lay flush to the floor.

 

And here comes the inspiring bit, through all of Ann’s frustrations and the work arounds she has come up with for daily tasks, she’s done some pretty amazing things in her life, things that I myself would be terrified to do even to this day.

“Well I’ll tell you some of the things I have done, when I was in my 40s I did a parachute jump which I thoroughly enjoyed, really, it was fantastic. I’ve also done a zip slide over the Clyde. I’ve done a few abseils, one off the Titan Crane in Clydebank/Yoker and one off the Forth Rail Bridge, and that was fantastic as well. I kind of like doing things like that. When I go on holiday, I go parasailing off the back of the speedboat and you’re sitting on the back of the speed boat and they attach the parachute to you and the faster they go it inflates and up you go. I just like doing things like that”.

Though I appreciate that not everyone with MS is able to take part in activities like this, it’s great to see the lease of life that Ann has, in her own words:

“I don’t think that any illness is all doom and gloom, there are some moments when you’ve just got to say to yourself go for it, cause I might never get the chance again. So, if you want to do it you’ve got to try it. I mean most of these things, the people who are helping you out, they are right behind you 100%.”

Ann has been a member of the MS Group for a number of years and talked to us about how much the group has helped her. In her experience, meeting people in the same situation and being able to laugh at some of the “silly” things that happen in their life has had a positive impact.


“You’ll never guess what I done again this week, I put the teapot into the fridge again, I put the teabags away, couldn’t find them don’t know where I put them.... and we just laugh, there’s nothing else you can do really, it’s hilarious. I always laugh at myself, cause if I laugh at myself it means I can laugh at other people as well”.

As with anything, stigmas can be a hard thing to change but Ann is positive that the world seems to be changing for the better when it comes to people with disabilities.

“They’re starting to realise that disabled people do need help at times and that sometimes we are really stubborn and decided that no I’m going to do this myself and then we get halfway through it and realise maybe I do need a bit of help. But there’s, I mean I can always stop and even someone passing me in the street and say, “excuse me, do you think you could possibly give me and hand?” and they’re like “sure, what can I do for you?”. I carry cards with me in different languages about problems that I’ve got and if you need help you just show these to someone (provided by the MS Society). It’s amazing what people will do to help you, really. Maybe even if you decided, you decided to walk, and you realised I can’t do this if I’m on my own. They’ll even say do you want me to flag you a taxi and I’ll wait with you until the taxi comes. People are really, really nice. “

Though there’s still some things she wants to make clear to the world.

“We’re not infectious, we won’t do you any harm and don’t treat us like children. It’s my body that doesn’t work, my brain is fine”.

I can honestly say that Ann is a superhero in her own right, from her get up and go attitude to her sunny disposition I’ve never quite met anyone like her. Though I wish that this disease would never touch a human soul, it gives me hope that there’s life after diagnosis and your world doesn’t need to stop because of two little letters. MS is a big deal, to everyone, whether you’re directly affected or not, it’s not something we can ignore.

Next time I want to introduce you to Charles, an accomplished actor and model whose whole life changed when he least expected it.

Until then you can find more info on MS on the NHS website and read more about the MS Society and the work they’re doing across the country here:

 

https://www.nhs.uk/conditions/multiple-sclerosis/

https://www.mssociety.org.uk/ 

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