Living a Life With MS
In collaboration with the MS Society for MS Awareness Week, we spoke to Stuart Nixon who was diagnosed with MS at just 18 years of age to share his experiences of living life to the full, despite the progressive illness that has affected many areas of his life. #LetsTalkMS
Can you tell us a little bit about your experience in the time leading up to your diagnosis, the symptoms you were having and what prompted you to go to the doctor?
You talk about a diagnosis at 18 but you experience symptoms long before you go to a doctor. My first symptoms was when I was 13 years old, I was walking to school to play a game of rugby, and I fell flat on my face on just an ordinary, flat pavement. Didn’t think much of it, got up, went and played rugby! That started a five year process of lots of other symptoms; blurred vison & fatigue. When I got to 18, I went to the doctor and was told “Stuart, you have MS”. I waited for the second half of that sentence, the half where they would tell me what they were going to do about it, but back in 1980 that didn’t come. The doctor simply told me to go away and live with it. Not something you want to hear when you are 18 years of age.
So from first symptoms at 13 to diagnosis at 18 it took around 5 years for that diagnosis to come?
Absolutely. Things are much better now, we’ve got the NICE Guidelines for MS which talks about maximum length of time to diagnosis. Unfortunately people still have a protracted period because often we don’t go to the doctor. You may have a bit of blurred vision, it goes away after a few weeks and you think “what was that” but you don’t worry about it. It’s only when something happens again, a month or a year later, you think that maybe you should go and talk to a doctor. So my advice would be, if somethings happening and you aren’t sure what is going on, go and see your doctor!
What kind of thoughts were going through your head at that time?
I didn’t really understand how life changing it was because the standard of information I’d been given wasn’t quite good enough so I had to go away and do a lot of reading and delving for information. There was no internet back then either, so it was all book work! Once you understand what’s going on you get over the initial confusion and that gives way to fear, frustration and anger.
All sorts of emotions that you actually associate with grieving because of course, what I was doing, was grieving for the life I was expecting I would live. I was 18, a keen sportsman, planning on going to university to read Medicine and become a surgeon, suddenly I had lost all of that and I was going to have to replan my life in a very different way. Those were the thoughts.
I can also still see the look on my mums face as we were sat in that doctors office, and it was guilt. Guilt over “what have I done” or “what haven’t I done”, “how haven’t I protected my child”. My Mum is now 96 years old and, if I catch her looking at me when she doesn’t know I am, I can still see that look in her eye. It’s not Stuart that’s got MS, the family’s got MS, we all live with it.
MS is something that impacts on everybody. Figures show that 130,000 people in the UK have MS, I would put that figure at closer to 1 million people that are directly affected by MS.
So, can you tell me how your condition has changed over time? What new symptoms have you had or which ones have worsened?
The big headline symptom for me is mobility, I have used an electric wheelchair since the age of around 33/34. I can actually tell you the moment I decided to use a wheelchair. Me and my wife were on holiday in Malta, and we had to go on a walking tour around the ancient village. It was going to take an hour in incredible heat and I thought ‘no way I can do that’. So I went to a bar, had a pint and read about it in a book. When my wife came back from the walk there were tears on both sides as we had both hated it as we were separated. That was the moment we said that as soon as we arrive back to the UK, we are going to buy a wheelchair.
After a month of having that chair, it was the best decision I had made because suddenly I had my life back. I could get around, share stuff with my wife and be a Dad to our kids..it was wonderful but making that decision was horrendous.
Did you find that decision was difficult because you found there was stigma associated to using a wheelchair?
Yes, lots of stigma and, as we touched upon earlier, that feeling of loss. This was another feeling of loss and that is what it is like living with a progressive illness, you are constantly facing that loss again as your symptoms change.
A friend of mine couldn’t approach me when I got an electric wheelchair, and he’s still a pal now and even 25 years on, he cannot get his head around it. So, as we said, it affects me, my family and also all my friends. So if my close friends can’t accept it, how do I expect others to? Really difficult, lots of stigma, lots of ‘you can’t come in here with that wheelchair’….I get rebuffed and pushed away all the time. What I have to be is resilient and persistent in saying ‘no, I’m going to do it’ because I need to live my life.
What other impacts has MS had on your day-to-day life? What fundamental changes have you had to make to adapt?
Lots and lots, and they are all things we don’t talk about and by don’t talk about I mean things below the belt! Incontinence, bowel problems, erectile dysfunction…all these things that us British public are not prepared to discuss. By the time I was 40, I was starting to have problems with incontinence, and erectile dysfunction at 45. You don’t expect at that age to be having these sorts of problems.
As much as my MS team are brilliant, it wasn’t something they wanted to talk about either and sometimes you find that healthcare professionals don’t have the skills needed to address things like that. So I spend a lot of my time talking to under graduate and post graduate doctors and nurses about their communication skills.
So at Nightingale, we are a home delivery and nursing service that specialises in continence care. I know that MS can cause bladder problems, and you’ve been dealing with this symptom yourself since you were about 40?
Yep, 40 when I started experiencing bladder problems. You go through the denial, the putting up with it, living a life revolving around knowing where the nearest toilet is, restricting your fluid intake etc. I used to spend a lot of time on trains, going back and forth to London, so I would dehydrate myself so I didn’t need to go to the loo. Life for those ten years or so was horrendous.
Then we got to the stage where we needed to have those difficult conversations in order to find the solutions and, for the last 5/6 years I have been intermittently self catheterising. Which is, rather than having an indwelling catheter that sits in my bladder constantly, I catheterise myself three times a day to drain urine. You think ‘that’s horrendous, I don’t want to do that, it’s the end of the world’ but it’s another one of those decisions that when you get your head around it, you’ve got your life back. I don’t have to worry about where the toilets are or about having an accident. Catheterisation has given me back control.
From experiencing the bladder problems you were having and finding the solution that is ISC, what kind of process did that take?
Because I’m a manager in the NHS I jumped the system. What I did was ring up a pal and told them I was having problems, and could I come and have a chat. So I circumvented the system. What you would normally do is start by going to your GP, expressing what issues you’ve got, and the GP would then refer you to the hospital based continence service.
You’ll be assessed by a continence nurse who will discuss with you what kind of problems you are having and the best solutions for you. One such solution being ISC.
Are there other experiences you can draw upon to help others having the same problems associated with MS?
I’ve been really lucky. I used to play badminton for England, cricket for Yorkshire, Rugby for Yorkshire, and I can’t do that anymore and that’s ok. But what I have been able to do, is make friends with JLS, spoken at the Houses of Parliament, been to Buckingham Palace to meet the Queen and get my MBE. There are lots of things that I have been able to do that I wouldn’t have had the opportunity to do had I not got MS. So there are plenty of opportunities that come up if you think ‘I’m going to have a go at that’. Look at what you can do, not what you can’t do.
How did you hear about the MS Society and when did you approach them?
Well, after the incident where I fell over at the age of 13 someone mentioned MS and said it might be something that was on the cards for us. With that, me and my mum decided to go to an MS Society meeting, when I was about 14 years old. We went to the Metropole Hotel in Leeds, where we were living, my Mum opened the door and do you know what I saw? I saw 200 white haired people in wheelchairs. I left. Needless to say, there weren’t 200 white haired people in wheelchairs but, as a 14 year old boy, that is what I saw.
I was 33 before I went back, because I was starting to have problems and my wife suggested that I might be able to help as I knew a bit about education and healthcare. So I got involved from there and it has been one of the most fulfilling things I have done. It is a real opportunity for anyone with MS, get yourself out there and make a difference! The MS Society has many different volunteer roles, get out and do what you can.
And finally, Stuart, what would be your words of wisdom to anyone out there listening that might have just been diagnosed with MS and will no doubt have lots of questions, fear and uncertainty about what the future may bring?
If you are newly diagnosed remember there has never been a better time to be diagnosed with MS than now. There are 15 treatment options out there for relapsing MS, make sure you talk to you MS team and they will be able to direct you to the best treatments and therapies. When I sat in that doctor’s office 40 odd years ago there was nothing, we are in a much better position now. I remember dreaming that I just wanted someone to turn around to be and say ‘take this tablet and your MS won’t affect your life’, now we aren’t quite there yet but we are getting there. With the MS appeal the “Stop MS” campaign to raise £100 million for MS research we hope to be able to stop MS and turn the progression off.
It’s Time to Talk – Multiple Sclerosis
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