Living with Multiple Sclerosis - Julie and Matt

It took several years, I would say, from the first symptoms to an actual definite diagnosis.

I was diagnosed in August of 2014 after having felt rotten for months. Initially, I thought I had food poisoning, ] and I was sent by my doctor, who I had gone to see many times, to hospital. I was blue-lighted there because it was kind of like I had a complete shut down of everything. And so they got me to the hospital, did not realize what I had and so I was admitted to the generic emergency ward. And then, after about five days, they suggested it might be MS. And so, I had all the necessary tests and it turned out that it was.

I felt numbness in my toes on one leg and that went all the way up to my waist. And then the other leg was just sort of dragging a bit, but that came on really gradually and went away completely gradually. And that happened to me about once a year for quite a long time, really.

When I was diagnosed with MS, I remember my wife and myself sitting on a hospital bed and the house doctor was... He would come along and he said, "We think you might have Multiple Sclerosis." And because of my knowledge and my wife's knowledge was just what we had heard in the media, we did not know anything about it. We did not know if it affected just one's longevity, how it affected the quality of life, so it was very much a leap into the dark.

It was quite a shock, the diagnosis, but in my case, I have to say I knew quite a lot about MS because my mum actually had it. And so I knew quite a bit about it. Obviously, it was a shock to me, but I think because it did not affect me that badly I just got on with my life, really.

You may experience a variety of different symptoms including nausea, including some incontinence, including some fatigue, etcetera. And one of the ones, one of the symptoms which seems to be quite prevalent, is one that is known anecdotally that you tend to sound as if you were drunk. And in fact the MS Society, you have got a t-shirt which says on it, "I am not drunk, I have MS." So I am kind of tempted to buy one of them, but I do not want to draw attention to myself. It would certainly answer a lot of questions though.

Now MS affects me 34 years later, it affects me an awful lot more than it did in the first place because I have got what is now called Secondary Progressive MS. So obviously the MS is deteriorating slowly, but it is deteriorating all the time and it affects me on my left side, with my walking, my vision. It affects me quite a lot with fatigue now, which I never used to have to start with. This sort of overwhelming, crushing tiredness where you really have just got to sit down and do nothing for a while before you feel able to carry on.

My wife is... Well, she is my rock. She has... In so many different ways she tries to gauge how I am feeling. If we are out in public she will say, "Right? Okay? Do you need to go and have a rest?" For example, we have three children and so there are times that she will say, "Right. Well, I will take the kids out so you can go upstairs and lie down for a little while."

When my children were small I did a really silly thing, which I would advise anybody never to do, because I was well, really, and I did not actually show too many symptoms. I did not tell them for quite a long time and that was really stupid because they actually said to me, "Mom, we have known for ages." And I would advise just to say it because children, whatever their age is, can deal with it far better than you think they can. And people, generally, that you know, tell them, I would say.

Friends have been superb, if anything, perhaps, too caring at times. The minute... Within the month of being diagnosed, we were talking about plans to go to the zoo with some friends in Cheshire and this friend was curious as to whether I should need a wheelchair to go around the zoo. And of course I had only been just diagnosed, I was not at that stage yet. But that was... The bottom line, it was caring that she was trying to do.

But I would advise anybody to join their local group. And that is a daunting thing because you do not know what you are going to see when you get there. You might see somebody in a wheelchair and you think, "Oh, is that going to be me in six months? Or next year?" or whatever. But I think you need to see that and not be frightened of it and go along and see just because that person sat in a wheelchair, they are still a person.

It is vitally important to engage in conversation with others who are experiencing MS as well, because you see the range of ways it affects people and you realize, of course, that it is not unique to yourself. When I was first diagnosed, I went on to an email forum, or an internet forum for it and somebody used the term "My MS", which I thought was rather peculiar. But realizing it and thinking about it, well, actually that is true, it is your MS because yours is unique to you. Your set of symptoms that you are experiencing in any one day or any part of the day is unique to you. You can not preempt what may happen, you can not preempt how you may be feeling.

When I decided it was time for me to give up... I really ought to give up work, I decided that I would join the local MS Society and be on the committee and be really involved, which I am. And that was really helpful because my job was a primary school teacher and I just wanted to be involved and do things.