Jooly's Joint: people with MS supporting each other

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by Marlies

Maybe it was all too good to be true. Maybe I had secretly thought I didn't deserve all my good fortune. Perhaps that's why the events of September 1974 didn't really come as a shock to me.

Let's begin at the beginning of my 'new' life. My marriage to the sweet man who still is my husband, after all these years. We were young and inexperienced and we met by chance at my mother's birthday party. He lived opposite our house, but was a student in another city. He didn't talk much, but being with him felt good. We had no idea what to expect from life, but we were willing to give it a go.

So, we got married in July 1974. Henk now had a job as a teacher and I had the opportunity to do what I had longed for since I had done my GCSE, namely to start another course. I wasn't quite sure about the subject, but in the end I decided on my hobby: music. I was thrilled that I made it through the entrance examination of the Academy of Music!

I couldn't believe my luck! Getting married, a flat with everything we needed, even a piano, and being able to start studying music. I'd never been so happy! I wasn't able to look much further ahead and I didn't think that was necessary either. We were going to have a beautiful life…

Three months after our wedding I began to have trouble with my balance, my sensation and my eyesight. My head had been in the clouds. But it now felt as though I was walking on them.

Without suspecting any trouble I went to see my doctor. He did some basic tests and he thought it a good idea for me to go and see a neurologist that same day. I did as I was told without asking too many questions.

The neurologist, after another set of tests, immediately wanted to admit me for observation. At that point I began to have a weird feeling and I really wanted my husband at my side. However, he was at work. My mother wasn't at home either, but my mother-in-law was. She promised to let Henk know what had happened.

Later I often thought how strange the situation must have been for him: just married and finding your wife in hospital already.

I was admitted to the neurology ward and I had a lot of tests. At first I didn't understand what was happening but it gradually dawned on me that they were looking for a neurological illness. I could remember so much from my jobs as a student nurse and a practice nurse. The number of scary diseases one could catch wasn't unknown to me, but it was something I had always put far from me. I wanted to be happy with my husband and I wanted to have my own family, with children, if possible. We hadn't talked about this yet, we thought we had our whole lives ahead of us.

That first period in hospital lasted six weeks. I wasn't allowed to leave my bed (and I wasn't able to, either). They didn't tell me what could be the matter. I put two and two together, and when I came for my first check-up after some weeks I straightforwardly asked my neurologist whether I had MS. He thought so… I couldn't even cry and felt quite desperate. I had no idea how my life was going to look from now on. Neither did Henk. We were told that it would be better not to have children. That put a dampner on our happiness.

My health improved and in good spirits I continued housekeeping and studying, in both still a novice, but I was enjoying myself.

About 6 months later I was once more admitted to hospital. This time I had to stay for four weeks. The seriousness of the matter was getting through to me somewhat better now because of the remarks my visitors made, among other things.

Every one of them seemed to know someone else who had MS and knew to tell me the most gruesome details and predictions. Their remarks didn't do my peace of mind any good and I didn't know what to do with all the good advice either.

All this hadn't done my studies much good and my not being a natural talent(!) didn't help much. However, my fellow students were a great help and I made solo singing my main subject. I knew I wasn't talented enough to become 'famous'. I had never had that ambition. I was simply happy to make music.

After studying this subject for a few years I had the opportunity to start on a second favourite subject: English (after all, you can't sing all day!). I felt that I'd better not wait too long before realising my 'castles in the air', because MS could surface again any moment.

And sure enough it did. During the summer holidays before my final exams, and after a busy time with four English guests who had stayed a fortnight, I had a serious relapse that put me in hospital for five weeks. I could see my studies vanishing into thin air. Fortunately, my music exam was postponed for one year and my English was going alright anyway.

I recovered again without keeping too many symptoms. The uncertainty about the course of the illness remained, but we still managed to pretend pretty well that everything was fine.

I passed my music exam and one year later my first English exam. I got a part-time job as an English teacher and I continued my language studies. This combination wasn't easy and my health was getting worse. I had to give up teaching but I did continue to study until that became to much for me in the year before my finals. It was hard to admit that this was yet another thing that I couldn't do any longer.

All this meant I wasn't feeling too great mentally either. I became a client at the Regional Institute for Mental Welfare where I was in therapy for two years. At first I worked so hard at clearing up matters in my life that I lost 25 kilos in no time; in the end I was only 43 kilos.

My therapist was a great help. She helped me to put things in perspective and to accept my life.

During this time I was 80-100% incapacitated and I ended up receiving disablement benefit. It was clear to me that I wouldn't have a paid job any more. I tried to teach some private pupils in music and English.

When my therapist went on holiday for a month, I discovered an alternative therapy centre, called 'Temenos', which means 'safe place', and a safe place it proved to be. I lived there for one month. Conversations with the therapists and the other guests helped me on my way again. I subsequently did voluntary work there for four more years, in their office, every morning, until I didn't have the energy any more.

In 2000 I had a very severe relapse.

In retrospect there were plenty of signals to announce the events that were going to happen, but if your neurologist keeps telling you that your MS is keeping relatively quiet then you reconcile to the situation.

When I read through my notes of the time preceeding 14 April 2000 (a week before Easter) it becomes clear that my health was going downhill and that I had had a number of small relapses.

When I woke up that Friday morning I realised that something was terribly wrong. Fortunately, Henk hadn't gone to work yet and he was able to call my doctor as well as my two good friends 'G' and 'J'. My friends soon arrived as did my GP after morning surgery. He could see that something wasn't right. I had an extremely high blood pressure (220/110). I wasn't able to walk and several other things were wrong as well (talking and writing were difficult, and I was extremely nauseous).

My neurologist wanted to see me at once so an ambulance was called and I was taken to hospital. After several tests in casualty they thought I'd had a stroke and admitted me right away. My MRI scan one week later confirmed that my MS was playing up again. I knew it wasn't a stroke. I could only lie quietly, wondering what had happened. I was too sick to eat and was put on a solumedrol drip.

Six weeks later I was still in hospital. I had innumerable tests, some physiotherapy and several different neighbours.

Then my right eye started acting funny, as if slowly a membrane was growing across it. It become bigger. The special brain test (VEP) showed it was retrobulbar neuritis, an infection of the optic nerve. I got another drip and had to stay in hospital longer than planned.

My transfer to the rehab clinic was postponed. Fortunately they could keep my place there for me. Unfortunately the infection did permanent damage to my right eye.

In the hospital several social and other workers visited me: a psychologist, who soon found out that his services weren't needed (yet), a speech therapist, and someone who would arrange my home care.

Lots of arrangements were made, although nobody knew how long this situation would last.

At first they told me that I would be allowed to go on holiday to my beloved Dartington for the music course, but I could feel that it wasn't going to happen.

The visits from my husband, my relatives and friends kept me going in hospital and continued to do so in the rehab clinic where I stayed for three months.

Today I am wheelchair-bound and our house needs to be adapted. I am injecting myself with interferon. I am a lot more dependent on my husband than before. We continue to get used to this situation.

A big step forward has been my change to a different hospital with a complete MS team with several specialists, therapists and a nurse and social worker all working together.

Of course they can't make me better but they are giving me the best treatment they can.

I have had to stop doing lots of activities, but I continue to discover new things to do. I'm feeling, like they say, 'cautiously optimistic'.

Marlies, March 2005

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