With the exception of our first consultant, the one who sat on the fence, I would have to say from our GP to our specialist to the chap who came round from the council to demonstrate the gadgets to the woman who came demonstrating the various injections to the new physio that my wifes recently started with, I would have to say everybody has been absolutely fantastic. Very, very understanding, very patient, very knowledgeable, even with something like MS, which, as I say, has got so many different manifestations. I would say to them just keep doing it , keep doing what you’re doing now because the people that weve had contact with have been nothing short of superb and even though there is no miracle cure out there and theres next to no prospect of my wifes condition ever improving, having people like that to talk to, to explain things to, to help is great. Simple as that. I can’t put it any simpler than that.

Have you had any other contact with other health and social care professionals over the years in addition to the GP and the consultant?

Yes, only very recently actually, we had a chap round from the council to demonstrate various gadgets, a chair, a seat for the for the bath, he was talking to us about getting some handles put up, which were going to have done now. Going to have a handle outside the backdoor because theres quite a lip. It’s a modern PVC door, not like doors used to be, where, you know, there was nothing, no lip to lift your leg over and my wife has problems doing that now because when, you know, stepping out on to the patio.

So theres going to be a grab handle outside. Theres going to be another one in the in the shower. So she can grab hold of that if she feels her balance going, which has happened, and she has ended up on the bathroom floor on several occasions. And they’re also putting a handle up so we can get from where the back door is up onto our patio, which is a slightly higher level, only about four or five inches higher but my wife has trouble both lifting her left leg up onto that slightly higher level.

And also the fact that theres nothing around to hold onto while she does it. I mentioned before how she moves around the house, moving from one piece of furniture to the next or to the wall and she can’t do that outside. So to avoid ending up using the wheelie bin, as something to hold onto, which she really shouldn’t do because it has wheels, [laughs] it moves they’re going to put a railing up outside as well. And this chap from the council showed us, or made us aware of, a few other extra bits and he was very good as well because the way he presented things was, I’m only showing you this now. At least there, you’re aware of it. It’s in the back of your mind should you ever need it in future. Because he ended up only leaving a couple of bits, the rest, my wife decided that she didn’t really need, at least not at this stage. So he was good.

When she first started to walk with a stick she put that off for a while because of the stigma. She felt, you know, that’s what old people use to walk around. You know, if she needed to walk with a stick, that was terrible to her. Now, three years down the line, theres no way on earth she could manage without one and, more often than not, when we go out she has to link arms with me on one side and walk with a stick on the other side. But at the time, it was a major, major thing for her.

And has the sense of stigma gone or has that stayed?

It’s reduced a little bit. Shes gone about it in her own way in that she was issued with a NHS standard metal walking stick. That lasted about ten minutes. She now has a whole range of sticks in different colours to go with whatever outfit shes wearing at the time. It’s her way of handling it and stamping her individuality on it I suppose but the stigma is definitely still there.

The stage were on now is that because she can’t walk very far I’ve been pointing out to her that mobility trolleys, scooters are available at some places and shes says, Oh no, no, I’m not going to use one of those. I don’t want to be seen on one of those, sort of thing, you know, and had a bit of breakthrough a few weeks ago because I managed to get her to try one out and it was a hoot. It was really funny because she went from, Oh, really not sure about this. No, I don’t want to do this. To when she was actually in it she was away and she was saying, Come on. You’ve got to keep with me now.

But I know she wouldn’t have got in that if we weren’t somewhere quiet, which we were, and I’ve only managed to get her in it again once since and I’m not sure if she would ever take to using one on a regular basis until unless it was absolutely necessary. I can’t see her, for example, going to the shops on one. I can’t see that, you know. She would drive or I would drive her. She has problems using the clutch on the car now but at least she can still drive so, you know, the next car might have to be an automatic but, hey, she can still drive. That’s the main thing. That’s her life blood, getting around. Provided she can park close to where she needs to be at the other end, which is why the disabled spaces come in vital because if she has to park halfway, away from, half way down the car park by the time shes walked to where she needs to be, you know, shes tired. So provided she can drive around and park close to where she wants to be, then for the moment, things are okay. But no, certainly there was a stigma for her with the use of a stick and there is now with the use of a mobility scooter.

It can really get you down, really down. And that applies to both of us. I don’t feel I can show it as much to my wife as I would. We have a very close relationship and we share all thoughts, everything and it’s possibly the one thing that I don’t feel I can ever tell her the full extent of how down it makes me feel because I keep having to tell myself, it’s not me that’s got it.

And you’ve heard, sometimes I’ve heard a phrase, you know, it’s as difficult for the carer as it is for the person who’s got it. I don’t believe that. I cannot believe that. I’m lucky. I am still physically, well, no problem at all. So how can it be as hard for the carer as it is for the person that’s got it? But it can certainly be difficult, very, very difficult and at times, it has got me very, very down, especially when it starts affecting my wife at work. I know how much that means to her and the idea that sooner or later she might have to give up work and all the implications that would bring really does get me down. And I don’t feel like I can really talk properly to her about that, not to the full extent because I feel I have to protect her from worrying about me. Shes got enough on her plate, you know.

But the idea that things will never be the same or well never be able to do again the things that we most enjoyed, we used to do a lot of walking. That’s, clearly, the opposite of what shes capable of doing now and what does get me is seeing other couples our age, you know, to indulge in their interests without limits, without restrictions and theres so much that we like to do and get out and about and see that either isn’t possible or is only possible in a very restricted way and certainly the amount that we can do to fit into a day. I am somebody that I have trouble sitting still, my brain flies off into all sorts of weird and wonderful thoughts all the time and I’m always out and about doing things, moving around.

And my wife is at the other end of the scale in that she can’t and what I find really difficult sometimes is doing everything at the pace that she has to, through necessity, stick to and I know I’m patient but theres still impatience in me that really frustrates the hell out of me. And I think what frustrates the hell out of me about it is that I can’t speak to her about it. I don’t feel I can. Weve got such a fantastic relationship and always have but and we always, like I say, talk about everything but I don’t feel that I can tell her the true extent of my frustration because shes the one with the condition, not me.

So do you just have to sit on that and bottle that up inside yourself or do you find some way to let it out in other ways?

I tend to bottle it up. I haven’t really found a way of letting it out. I can distract myself pretty well. That’s as far as it goes really. Yeah, frustration with everything, just not being able to do anything about it, seeing her go downhill.

I wonder if you could say a bit about the impact on your family as a whole?

So often we have to plan what we do and how we do it around what my wife can manage. The kids are very good. They are aware that that mum isn’t capable of doing things. They see it every day, obviously, but, at the same time, they give emotional support. They’re very, very good at that, through necessity really because for all her wish to get on as normal and appear normal to everybody else as much as she can, within our family unit of course, you see somebody when they’re at their worst. You see them when they can barely get from the bedroom to the bathroom and… they’ve seen my wife when shes had a bad fall. And they know what to do. They know to help they should ring me as well if I’m not there.

But… I think, if suddenly my wife didn’t have MS tomorrow, I think it’d be a shock to us how much we now have to plan round… what we do and where we go and how we do it and how much time things are going to take as well. So, if my wife was cured tomorrow we would suddenly realise, I think, how much we do without even thinking about it. Little things like bringing full plates of, dinner plates in from the kitchen to the table for us to eat and helping my wife move around.

Shared housework, my daughter particularly is fantastic at both finding things that she needs to do and from vacuuming to cooking to anything like that. I guess with them being young, as well, they just adapt to it. It’s only when they compare their mum to other mums and realise that their mum can’t do the same things that they probably notice it more but you just manage. You just get on with it. I think that’s the main thing. As a family you, I mean were blessed because we have got a close family unit. I wouldn’t like to think what it’s like for somebody who hasn’t but right from the very basic level of just looking out for her, making sure that things aren’t in the way for her to trip over because she can’t lift her left leg very high to making sure that the toilet seat is down [laughs].

Her self-confidence is certainly nothing like it used to be and that has implications for so many things. Shes finding it difficult at work particularly, at the moment. Shes had to stop doing what she normally does for a job and has ended up being put on admin roles, light roles, if you like, because she can’t manage her normal job anymore.

And that, on top of everything else, has done her self-confidence no end of harm and… It’s just so difficult for her and I have to, obviously, support her as much as I can and be there, physical support, mental support. I’ve got to bring her up when shes down. I’ve got to gee her up. I’ve got to take her mind off things. I’ve got to give her something else to think about.

If you don’t mind talking about this, if you do then don’t, but I wondered if you’d talk a bit about the more physically intimate side of your relationship and how that’s been affected by her condition over the years?

Fortunately, no problems at all, I’m happy to report.

At times when my wife has had a relapse then her feeling in her body does diminish but, thankfully, from that point of view, all her feeling returns and after a relapse and theres no problem at all with that. Because, obviously, in a loving relationship that’s a very big side and you can’t understate it really, I don’t think. So were lucky in that respect.

We have found the MS Society website useful, particularly when people talk about their experiences and the overriding thing that you find is everybody is different with it. You know, the old phrase, no two people are, you know, affected the same, boy, does that apply to MS. There is no two cases that are the same, although there are similarities, and it’s finding people who’ve got similar, where the condition has manifested itself in a similar way, and how it’s affected them and what they’ve found to help is useful.

I would have to say honestly, that my wife looks up on the internet more than I do but that’s not to say that I haven’t looked up myself and read quite a bit on the subject because were both big readers and we must have every book that’s ever been published on the subject in the house. And what will often be the case is that my wife will pick out some relevant point from a book and I will read that section and keep going.

There is another side to it whereby I don’t want to read too much about it because I think it’s natural to pick out the worst bits of everything that you read and realise that, you know, not all of this is going to apply to, to my wife. Yes, she, has her problems with it but, like I said before, theres a lot of people who, for whom MS has made their lives a hell of a lot worse and I find it, to be honest with you, quite difficult to read sometimes and certainly puts me on a downer. And that’s probably the reason why I haven’t read up on everything as much as my wife has.

My wife now sees an MS specialist, as well as our GP, and she enquired of my wife as to whether shed considered a course of regular medication as opposed to what she does at the moment, which is still the steroids, although she doesn’t have an intensive course in hospital any more. She takes them orally.

All the time or just when she has a flare up?

Just when she has a relapse she takes still a pretty high dose and then when shes finished the main course has some less powerful ones to bring her back down off it. And the MS specialist the MS doctor, she suggested that, you know, it might be an idea to start looking at these now. This was after the last episode about eighteen months ago and she suggested that it’d be an idea to look at it in more detail, see if it’s something that you wanted to go with and it certainly wasn’t the scary thing that, as she explained to my wife, it wasn’t the scary thing that my wife thought it was. And the other misconception that we both had was that once you’re on these drugs, that’s it. You can never come off them. That was purely our misconception. We hadn’t read up in any detail, at that stage, about regular courses of medication because it’s not something that, you know, a road that we wanted to go down. And a woman came to the house and she demonstrated the different syringes, needles, call them what you like.

Quite nifty pieces of kit, couple of them, and explained the pros and cons and the different ways that you can administer them. And also the understood effects of how much it would, what likelihood it would be of reducing another relapse. And I for one didn’t know that there were so many different, because all I’d heard about of was beta interferon That was it, you know, and theres more than one type of that plus other different regular medicine you can take. Having it demonstrated was a little bit not scary but made my wife a little bit apprehensive because it’s something that you have to do religiously and, at the end of the day, you’re sticking a needle in yourself and giving yourself an injection when the only way that’s ever been done before is when you’ve got a temporary illness of some kind and somebody medical does it for you rather than having to administer it yourself. But we considered it, ruled a couple out on the spot because they just weren’t for her, for one reason or another. But having thought about it, she decided that again, maybe it’s her stubborn streak, maybe it’s her desire to manage as much as normal as much as possible, she decided that it wasn’t for her, at least not now, but the demonstration was valuable in that at least we then had a proper awareness of what was available and what the pros and cons were and, although still not like something you really want to be doing every day or every three days or whatever, it wasn’t quite as scary as we thought it was going to be. At least now we know the options that are there should or when it becomes necessary to take them on a regular basis. So it was useful in that respect.

I think there is theres always the tendency to clutch at straws of anything that you feel could help. Were open minded people. The end justifies the means with the way I would look at these things. I don’t really care as long as they work and then the realist side of you would kick in and say, Well, hold on. Either this thing isn’t proved yet or it’s some old wives tale or whatever.

We did have something a little like that in that theres a drug called naltrexone, which I seem to recall from by chance, it was found in some studies to have a positive effect on MS. Now, it was actually something that was suggested to us, would you believe, by our GP, who had had experience of another MS patient, who had tried this naltrexone and found it to be enormously beneficial and, although he was very guarded as medical people are, he says, I’m not saying that this will do anything at all. All I’m saying is it worked for this person. It’s up to you if you want to try it or not. Which we thought was good of him to be open minded enough to say that, you know, there is only a small amount of medical back-up for the idea of this working.

It’s like circumstantial evidence, if you like, but he mentioned it to us and my wife tried it for a while. Any benefit that she got was possibly the placebo effect. I don’t know. But it was worth a try and reading about it, again if you go on the internet you will find opinions as opposite as you could possibly imagine. Which do you believe? But our GP’s suggestion was, This is harmless because you take it in such low doses. In fact, it’s called LDN, is the treatment, low dose naltrexone and it worked for this other patient of his so he suggested to my wife, you know, You’ve got nothing to lose, you might as well try it because in such low doses it won’t it won’t do you any harm.

So she tried that for a while so I suppose that you could say that might come under miracle cure sort of suggestion. But apart from that, I’d have to say really that were realists and, you know, if there was a miracle cure then how come theres so many people with MS and getting worse with MS. I’m sure therell be a medical breakthrough at some point. You like to think so but, at the moment, I think were more realists than dreamers. You can have hope without grabbing onto everything that’s suggested, every weird and wonderful cure that has been mentioned for this. So generally speaking, no, we have our feet on the ground with it I think you could say.

Looking back, we should have applied for it before we did. I don’t think there was such a stigma about applying for it as there was for starting to use a walking stick, for example, because it is practically so useful but we held off, for some reason. I’m not sure why and we psyched ourselves up to ask our doctor about it and we had nothing to fear. I don’t know why we built it up to be such a thing. Maybe because we had heard stories that people had had to jump through hoops to get them and our doctor’s reaction was, Of course. I have people walking through that door asking me for a blue badge when they’re perfectly fit and able. Of course you can have one. So for us, it was it was straightforward.

And once shed got one, it did help. Work have been very good in that they’ve allowed her to park in a disabled space for quite some time before shed actually got a blue badge and then they tightened up the parking and she was told she could no longer use the disabled spaces and it was that that really, I think, told us that we really ought to apply for a blue badge. You know, theres no reason why she shouldn’t have one. So, but when it actually came to ask for one, the doctor was absolutely fine and he said, Yes, I’ll sign it off. No problem at all. And it’s been such a help. It really is. And also, the fact that the spaces are wider in that we have room to open the car doors fully because some car parks are terrible and the chances of my wife being able to extract herself and twist herself round to get out in a tight car parking space, sometimes it’s just not possible. So the fact that you can open the doors wider and have a good chance of getting in and out unrestricted, that helps an awful lot as well.

So, was the application process itself simple? Because I’ve heard people talk about having to do the whole DLA application to get a blue badge.

Right.

Did you have to do that or?

No.

Did you just apply separately?

We applied.

For the blue badge?

To the doctor for a blue badge and he granted it. That was that. There was a little form to fill in, not an awful lot. But no, it was absolutely fine. Like I say, we should have done it a lot earlier than we did but, you know, the doctor is very familiar with her case and said, Sure. No problem.

I can’t actually remember at what stage she had the MRI scan, whether it was in conjunction with the positive diagnosis that we eventually got. But if theres one thing I’ve learnt with MS, it’s a very inexact science and maybe that’s why the specialist was reluctant to label it. I don’t know but, like I said, it affects so many people in so many different ways that maybe it’s not something that’s easy to diagnose. I don’t know. Maybe I’m now making excuses for the original specialist we had. I don’t know. But we eventually got the diagnosis that we feared but at least it was a little easier to get our heads round it when somebody with letters after their name had said, Yes, it’s this.

So had you both yourselves thought it might be Multiple Sclerosis?

Yes.

Without anybody else saying that to you?

Yes. But maybe you tend to put those thoughts to the back of your head a little bit and, you know, it was if ever somebody enquired after my wifes health we never said, This is what we think it is. Because we didn’t know. You know, that was one inkling that, you know, little thought that probably wouldn’t go away. But we couldn’t say it was that because we hadn’t been told it was that and I suppose you could argue at that stage, it wasn’t that. You know, it was only when it started to get worse that it became something that you could put a label on. I dont’ know but…

And what were your inklings based on? What kind of knowledge or experience of MS was it that made you, made that appear in your minds?

Well, the one thing that I remember stands out in my mind was when my wife was having a course of steroids in hospital and one of the nurses came in and she was not a nurse I’d seen before and I think she slipped up because she said, Oh yes, you’re in for your course of steroids for your MS aren’t you. Or words to that effect. I forget the exact wording and my wife sat up and said, I haven’t got MS. And I said, you know, She hasn’t got MS. Oh right, well. This nurse sort of like quickly retracted the comment, looked at the notes, looked a little flustered and that was that. But shed obviously assumed. Shed obviously seen the symptoms before. Shed seen this course of treatment being give to somebody with MS before.

So she just put two and two together and looking back, that was the first time when I think it really started nagging at the back of my head, you know, This is what shes got. And it’s odd that, it should first, you know, come up in that way, when already for quite some time, you know, it was referred to as a neurological condition. That’s the only label that our specialist would put on it as I remember. I mean all this is a long time ago now but, you know, he was an expert at beating around the bush I think, looking back.

I remember once, she was asked by an acquaintance of ours, when he saw her walking, and he enquired why she was walking as if she was, walking on ice,’ was I think the phrase he used. And she used the line of, oh, it was an old war wound. But he pressed further and said, Have you hurt your leg or something or whatever? And only then did she say, Look. I’ve got MS. She didn’t like admitting to start off with at all. She took a while to get her head round the fact that she could even say to people that she had MS. She didn’t want to admit it to herself to start off with, but even when she had admitted it to herself she didn’t want to particularly admit it to other people and certainly not use it , at the other end of the spectrum, using it as an excuse in any way. And anything that advertised to other people that she wasn’t normal, [laughs] for want of a better phrase, that she wasn’t fully fit anything that sort of gave that away, she wasn’t keen on. So, so yeah, that’s a stigma isn’t it. Yeah, she just wanted to carry on as before I guess.

I have never fought shy of telling anybody of what my wife has because nine times out of ten that’s all the explanation they need. I would say that, you know, my wife now has no problem with telling people. It was just in the early days; either it wasn’t labelled for us yet or she hadn’t got her head around it yet to be able to say, so she now no longer has a problem with saying and once wed started to do that it was, we found it easier because rather than trying to explain the symptoms, which was what we had to do before, we can just say, She has MS.

Fortunately, my wife has the relapse and remit kind of MS, which means she does go up and down with it.

But each time shes had a relapse she hasn’t got quite up to the level of mobility that she was before, although she has recovered each time, and the relapses that have come since then, it was diagnosed about nine years ago and since then, the relapses have been very erratic. Sometimes shes had one a year. At one period she went four years without having one at all, which was great. But she hasn’t had one now for eighteen months but she had to start walking with a stick three years ago.

The first idea we got that something was, was wrong was when my wife started to feel slightly numb at the end of her fingers and at the end of her toes but only on the left side of her body. So, slightly odd. We knew that wasn’t, obviously, normal but it was, it was a case it was just odd rather than causing a problem to her in any, in any way. Obviously, it was worrying because, after several months, it hadn’t gone away. It was still there and for quite a while it wasn’t really a problem. My wife used to go to the gym a lot and used to do jogging and aerobics and was very, very fit. We used to do a lot of walking. But since the kids had come along we hadn’t done so much of that sort of thing anyway but we still enjoyed it.

But it sort of crept up on us really in that it didn’t go away and used, it was getting steadily, very subtly worse and it was affecting my wifes balance and her sense of touch and it was like gnawing away at the back. We knew something was wrong but we didn’t really know what. It was difficult.

And then, after a while, we went to see the doctor about it and he referred us on to a specialist, who decided a course of steroids would be a good idea, and so my wife went into hospital. It was for a, a three day course of steroids, very intensive course of steroids and not particularly unpleasant but it did the trick and everything was fine.

But the feeling that my wife had down the left side of her body it improved after the steroids but it didn’t, it never got back to normal. It was, it was never the same and then something rather awful happened in that my wife caught food poisoning, campylobacter it was, and this made her very, very ill and, looking back now, after that the symptoms did get progressively, slowly worse. But after that bout of food poisoning it was never quite the same again. She took a bit of a, bit of a nosedive after that. That’s probably a too dramatic way of putting it because it was just after the food poisoning she was, there was clearly, you know, it had taken a step further on.

But still, we didn’t know what it was and the doctor and the hospital wouldn’t, they seemed to be very, very cagey about putting a label on it at all and we never really thought a lot, awful lot about that and we should have done, thinking about it now, but we just assumed it was something that my wife would have to live with and it didn’t appear to be getting really bad. It was, it was certainly there and slightly not debilitating, but slightly restrictive because my wife had been so, so fit and now didn’t feel like she should be doing the sort of things that she was. It didn’t feel right somehow because she didn’t have the balance and to a certain extent she didn’t have the strength either.

Well, after the first course of steroids, which helped, I don’t remember my wife ever saying that she was a hundred per cent back to normal again. She always used to describe it as ninety five per cent.

And we just got on with life and I think maybe theres a tendency to hope that everything is going to be okay and assume it might be a temporary thing and because the steroids had made such an improvement it was a case of, Well, whatever it is we can always go and have this again.

The, one of the milestones I mentioned earlier was the food poisoning because that meant that my wife was very, very ill and it was after that I started to notice that her mobility wasn’t what it was. She couldn’t walk as smoothly as she used to be able to. She complained about her balance a lot more and again, she had a course of steroids, so a whooping great big dose of steroids in hospital via an infusion drip. But it was puzzling because all the time they wouldn’t say what it was and even the phrase, singular sclerosis’, I seem to remember, was bandied around which, looking back, seems a ridiculous thing to suggest because, I seem to remember, that the way it was explained at the time was that it can’t be MS because that’s when you have multiple parts of your body affected and my wife didn’t.

But I think it was after, I think it was after the third episode that she had, of this, we thought we really ought to find out more about this now but our consultant still wouldn’t label it. He wouldn’t, you know, he said, We don’t know what it is. And this was about five years in, as I say, and so things, up to that point, had only deteriorated very, very slowly with the exception of the food poisoning episode when there was definitely something amiss after that.

But I guess after that period of time we just decided that, you know, tell us what this is. Tell us straight what the chances are of it being MS and then, at least then we know and we can start to get our heads around it and research it, look up about it and, from my wifes point of view, to start accepting that’s what she had, rather than having to try and explain away what she had because, if the truth be told, she didn’t know because they wouldn’t tell. They wouldn’t tell us anyway. I suspect that they always suspected that’s what it was. I don’t believe somebody who’s in a consultant position sees symptoms like this hasn’t seen them before but it was his total reluctance to put a label on it, to diagnose it properly that, in the end, we just said, No, forget it, you know, we want a second opinion on it. And the second specialist gave us that opinion. But this was, as I say, years down the line.