Living with Multiple Sclerosis
Maggie brought the car to a halt. The driver behind us honked his horn – idiot should not have been so close behind. Maggie was clearly not happy.
“There’s something wrong, Pete. My leg keeps jerking.”
“Well, let’s wait a bit and see if it goes off,” I replied.
After a few minutes, she started the car up and we made our way towards home. Five minutes later, however, as we were travelling along the Capel bypass stretch of the A24, she had to pull over again.
“It’s no good, Pete. I just can’t carry on.”
So, we changed over and I drove the remaining ten miles or so back home. It was not the best end to what had been a lovely evening spent in the company of two good friends at an Italian restaurant at Mickleham, a village between Leatherhead and Dorking, in Surrey. Good food, good wine, of which I had quaffed a few glasses and as a result was in the passenger seat when we had set off home.
Maggie had experienced this problem on a number of occasions but was not inclined to make a special visit to a GP for what seemed a trivial matter. When, a few weeks later, she was experiencing numbness in her leg, she did not immediately connect it with the spasmodic jerking. However, she decided she had to make an appointment to see Dr Moult, who was then our GP. Dr Moult expressed some concern and arranged for Maggie to see a neurology specialist at the Crawley Hospital. Following several months wait for an appointment, Maggie saw the specialist, who arranged for an MRI scan. It was another wait of several months before the scan, after which we had to wait on her diagnosis.
We then went up to Norfolk, where we stayed with my dear Aunt Joan for a few days before going on up to Skegness, where our ex-brother-in-law was living. During all this time I was living with the knowledge that my Dad was suffering badly from cancer and so I was expecting a phone call at any time about him. Indeed, when we got back to Horsham, I visited Dad at the Royal Surrey Hospital in Guildford, where he was undergoing chemotherapy, and I spoke with one of the staff there who told me that he would be lucky to see another three months. This was in the June of 2000.
On 4 September we returned to Crawley Hospital, where Maggie received confirmation that she had multiple sclerosis (MS). By this time, Dad was nearing the end and I had my mind more on that, on being there for Mum, and so the seriousness of what Maggie had been told did not register immediately.
Dad died two days later. I remember us all visiting him the day before he died and the reality of what was happening finally hitting home. I broke down completely then and also in bed that night as I realised that he would no longer be a physical presence in my life. We had booked a holiday in the Italian Dolomites and were due to fly out four days later. Obviously, that holiday had to be cancelled, and the costs repaid to us – not without having to refer the matter to Dr Moult for him to confirm that at the time of booking there had been nothing regarding Dad’s situation that should have precluded us from booking a holiday.
So, there was the funeral to arrange. Philip, my brother, flew over from Riyadh, where he and his family lived, to help with the arrangements. And so it was that, on 17 September 2000, we said goodbye to a marvellous husband and father. Even now, more than ten years on, I miss him enormously.
Maggie went to see Dr Moult, as she was not happy with the specialist at Crawley Hospital. Therefore, he referred her to the St Richard’s Hospital down at Chichester, where she was to meet Margaret Rice-Oxley, a lovely lady and an expert in MS. Maggie was very happy in that she was able to discuss things quite openly and be listened to sympathetically by someone who in turn was open and honest with her.
We then booked a replacement holiday, a week in Crete, towards the end of October. I had never been there before, but Maggie had had two painting holidays there in the early 1990s, and had thoroughly enjoyed them. However, weather-wise, it was not great, with a seemingly permanent wind. However, there was a decent restaurant close by where we stayed and I got a good taste of Greek food, something that I still enjoy now – or would do if there were still a Greek restaurant in town.
It was during that week that the enormity of what MS meant really made itself known. I had bought a newspaper that included an article about a former England rugby player, who was also a very good cricketer for Gloucestershire. Alastair Hignell had contracted the condition, and the article explained in some detail how it was affecting him and how determined he was to try and continue living a normal life. But it also went on to describe just how badly MS can affect a person, and that it affects different people in different ways. It was then that I broke down, crying for a long time, as I realised that life was never going to be the same again. I think I broke down again during that week as I struggled to take in the enormity of it.
Maggie was just incredible; although clearly it was devastating to hear that she was suffering from this accursed illness, she seemed to come to terms with, and accepted, it quite quickly. For me, though, it was nowhere near so easy – if that is the right word. For a long time I raged at the moon as I tried to come to terms with it. Why us? Why us? Why us? The question rebounded round my head time and time again. Really, it was a form of grief, and I had to go through the usual processes that you associate with grief. The fact that the news of the MS and Dad’s passing were separated by just a couple of days had been difficult to cope with. That the person who was my line manager – although I use the term manager extremely loosely here, for he was just about the most incompetent person I had ever had the grave misfortune to encounter – seemed intent on making everyone’s life hell, not just mine, simply added to the problems that were building up. Eventually, at the beginning of April 2001, I broke down at the office and was away on sick leave for four months with depression, eventually agreeing to return to work only if I were moved to another department. To be blunt, however, I never liked working at the Veterinary Medicines Directorate and if it had not been for the MS I would have found a way out.
I think that time away from work did me a world of good. It was during that time that the initial feelings of anger, of sadness, and all the other negative emotions receded. I had come to terms more with our situation and realised that I had a responsibility to be positive about what effectively was our new life. I had come to accept that things would be different, for example we would not be able to continue taking foreign holidays – at least together – although we did go to Italy in 2001 and 2002.
The one problem about that period was that Maggie had given up her driving license and so was reliant on a taxi to get her to and from the office. Once I was up and running again, I became the chauffeur. During the course of her taxi trips, Maggie had been taken by various routes up to Addlestone, one of which was a lovely country route that took us up through the Surrey countryside, through one of the county’s oldest villages, Shere, and up round the great natural escarpment in the North Downs known as Newlands Corner. Although I drove past there hundreds of times the views there never failed to astound and amaze me.
At the time Maggie was given the diagnosis we were living in a semi-detached house on the south-eastern side of Horsham, having moved there in 1983. As 2000 became 2001 and the MS, slowly but surely, began to tighten its grip, so Maggie started to experience difficulties in walking and balancing. We had our holiday in the Dolomites in the September of 2001, and we had a nice holiday, even if the area had its earliest snowfall for many years. When we did not go out together I did my own thing and Maggie was able to do some painting. This was the only holiday in Italy in which we used a hire car, and it was just as well, otherwise we would not have been able to move very far. Indeed it is most probable that we could not have had the holiday at all.
2001 became 2002, and Maggie was using one stick to help her. However, she was experiencing real problems with the stairs, which was not helped at all by our cats often deciding to go downstairs with her and then stop two or three steps below her, leaving her tottering precariously with just the one handrail to hold on to. We decided, therefore, that we had to move, preferably to a bungalow. So, after almost nineteen years we relocated to the western side of town, to a bungalow that had a fair sized back garden. The bungalow is located in a quiet road and is one of just two that were built in the road. It really did not take us long to settle in and after just a short while it seemed as if we had been there quite a long time.
Shortly after moving we had what proved to be our last holiday together in Italy, staying at Pallanza on the beautiful Lake Maggiore. However, as soon as we got there we knew things were not right. The hotel was away from the town centre and was up a hill. As a result Maggie really could not move very far. I was distraught and could hardly sleep because of how I felt, and then Maggie went down with a virus. Consequently, we had to cut short the holiday and get back home.
Since then we have had our holidays – no more than a week – in the UK. For the first three years we used my cousin Marion’s apartment on Shanklin Esplanade. That was nice, with a view of the English Channel. However, by the third year it was apparent that Maggie was experiencing greater difficulties, so she looked for somewhere else. She found a farm near Cowes, still on the Isle of Wight, where the accommodation was geared for the disabled, and so we had three holidays there. By the end of that time we had just about exhausted the Island, and so in 2009 and 2010 we went up to Norfolk, to the Norfolk Disabled Friendly Cottages, in Bircham Newton, a place so small it did not even merit a name sign! It was marvellous there, with views across to Bircham Windmill and the Norfolk countryside.
The existing garden in our new property was not at all inspiring, being virtually all grass, with copious amounts of dandelions, clover and other things that make a lawn look so awful. Marianne, Maggie’s sister, knew of a young man who was trying to establish himself as a designer. So, we had a number of meetings with young Ben, before agreeing on a new design that would incorporate a number of raised beds. Maggie’s passion has always been gardening and it was imperative that what we achieved would allow her to spend time in the garden herself. Once the new garden had been built – by some know-it-all guy who was one of the most arrogant men I have ever encountered – Maggie knew in her mind exactly what she wanted to achieve. The result has been simply brilliant, and we both love being in the garden during the summer. We have some seven different roses, of various colours, scents and ease of handling. There are also seven or eight clematis dotted around, plus many other plants that make for a glorious sight when the garden is at its best.
We also had to look at the kitchen. It was necessary to have something installed that would make it easier – or just plain easy – for Maggie to be able to work in it. She found a kitchen designer somewhere in the Midlands, Northampton I think. The result was a kitchen that included worktops of different heights, plus a pull-out one that enabled her to work with vegetables, etc, comfortably.
This obviously used up a fair bit of money, but there was one other thing that was absolutely essential, and that was a facility for Maggie to be able to shower. Originally, we used some of the space of our own bedroom, plus a little of the one we were using as a study-cum-computer room. In time, though, a fully-functional wet room was the only answer and so this was built by Marianne’s partner, Peter. It was a shame to see one of the bedrooms disappear, but needs must when the Devil drives, and we were later to use some of my retirement money to refurbish the other existing bedroom to include a fold-back bed and a complete computer workstation.
As time went by, so Maggie found she had to use two sticks. She really was finding walking very difficult. Getting in and out of the car was becoming more of a problem; indeed her mobility was getting very much impaired. It was not long, therefore, before she had to start using a wheelchair, and Peter built a ramp that was placed outside the patio doors. That made getting out the house so much easier, but there still remained the problem of getting in and out of the car. Because of this we looked into getting a Motability car. Motability is a charity that helps disabled people remain mobile, whether they be the driver or, as in our case, the passenger. So, in 2007, we took delivery of a Ford C-Max, via our local Ford dealer. This improved matters quite a lot but it was the provision of a banana board – so called for its shape – that made things even easier. However, we still have problems, particularly if Maggie’s legs misbehave and spasm at the wrong time.
In June 2010 Maggie arranged for a couple of companies that specialise in adapting vehicles for the disabled, what are known as Wheelchair accessible vehicles, or WAVS, to come along and give us a demonstration. We decided to go with a Kia Sedona.
“How long will it take?” we asked.
“Oh, three, no more than four months,” came the reply.
It is now February 2011 and still no sign of the vehicle, although we are expecting it to be delivered reasonably soon. I cannot say that I have been tremendously impressed with the level of customer service, seeing as how it has always been Maggie that has had to call the company to see what progress – if any – has been made. Leaving that aside though, we are looking forward to taking delivery of the Kia; we both believe it will be a great improvement on the current arrangements.
More recently Maggie has been going to an exercise class designed for people with MS. This takes place every Friday morning and is a very good thing, not just because of the exercising but also because it has meant that Maggie is able to spend time without having to rely on me being there, and also because she has made friends with people that otherwise she would not have done. And even more recently still, she has joined an art group in Southwater, one of the neighbouring villages. I am really pleased that she has taken up her art again. She is very good at it, although she would not agree, being her own harshest critic.
And now she is going to do a skydive in aid of MS. May 25, 2011 has been designated World MS Day, and although it is taking place the following day she and sixteen others will attempt a world record tandem skydive above Old Sarum, near the beautiful city of Salisbury, in Wiltshire. Hopefully several thousand pounds will be pledged for what is a marvellous cause. If anyone is interested the link is http://tinyurl.com/6bzt26a, or, if that does not work (and Tiny urls don’t always!), https://charity.ukskydiving.co.uk/FundraiserPage.aspx?eId=71
All things considered, while it has not been plain sailing living with this dreadful disease, we have adapted our lives very well. We enjoy what we have and live a simple life that suits us. And I often say it could have been worse; the MS could have been more intrusive, in that it could have attacked her inwardly, and in time it still may do so. But, and what would have been infinitely worse, it could have been MND, a far more vicious disease, and I would have been a widower years ago, so I do feel blessed that we still have a life that in our own way we enjoy.
Seeing so many of these wonderful flowers all in one place simply made the heart sing. It is truly a special place, one to which I would like to return one day.
Sussexshark's Illiterate Ramblings 