Thursday, 13 September 2012

MS and the Other 'M' Word



 

When people ask I say I am taking the Henry VIII approach to marriage – I stole it from Peep Show, but it seemed appropriate. The way of remembering Henry VIII’s wives and their fate is to look at it in the following order – divorced, beheaded, dead, divorced, beheaded, and outlived. I am on my third marriage and have managed divorced and dead so far – hubby No 3 is of course hoping to skip a beheading and move right on to outlived. Of course people have difficulties in marriage anyway, because a lifelong relationship with another person takes an awful lot of work, but MS has loomed large in my marriages and has its own unique effects on a relationship.

In my first marriage I was young, naïve and had only been diagnosed a few months before we met. At this point in my life I felt like MS was the end of the world. It had lost me my job, my relationship and most of my confidence. I couldn’t see that I was any use to anybody and was totally confused about where I was going in life. In fact I had pretty much accepted I was going nowhere. I had my benefits sorted, I was living at home and I thought I’d accepted the changes that had happened in the last year. I thought ‘okay – so now I’m disabled and this is the life disabled people lead’. I was involved with the MS Therapy Centre and resolutely dropped out of the world of the ‘normals’. I met my first husband at a friend’s 21st birthday party. She was at an agricultural college and her boyfriend was on the rugby team. I had been to watch the rugby team play and she introduced me to one of the team members who she thought might be my type. In retrospect I was grateful for any sort of attention. He knew about the MS and it didn’t seem to bother him. I thought he was fine with it, but really he hadn’t understood the enormous effect it could have on a relationship. I couldn’t expect him to understand it, because neither had I. We went from dating to living together and then two years after we met we got married. Just two weeks before the wedding I had a miscarriage and I went through the wedding day in shell-shock. At the same time my brother and his girlfriend had their little boy and my granddad died. It was a rollercoaster of a month for all the family. The miscarriage was horrible and although I’d never thought that carefully about having children I now wanted one. I knew it would be hard, but knew other women with MS who had children. I thought it was probably best to have them as soon as possible in case my illness got worse so we moved into a new home and carried on trying. I miscarried again 6 months later, twelve weeks with twins. No one talks about miscarriage. It had probably happened to some of the women around me, but the only ones who seemed to talk about it were those who could say that since then they’d had children. I had a D and C operation, caught an infection and couldn’t get out of bed. I was in agony and I realised my husband was just not up for this level of difficulty so soon. He would come in from work to a desperately sad woman in pain, in and out of hospital and unable to do anything round the home. He started to come in from work and sit in his chair for an hour, staring at the TV and not cooking the tea. After a repeat operation to sort out the infection I came home from hospital to a mess in the flat and a husband who didn’t want to engage with me at all. I needed to be looked after for a few days but I felt he couldn’t cope. I asked if I should go home to my parents and before I’d even gone to the phone he was packing my bag. In retrospect I think we were both depressed.

The situation only worsened when I fell down the stairs and broke my collar bone. I was already routinely walking on crutches and now I could only use one to lean on. We had to apply to our local council for rehousing and were offered a house with a stair lift on a run-down estate in town. We took the house because we were desperate and in debt. We both spent money to cope with our situation and cheer ourselves up and one income was not supporting us both. The house needed so much work doing to it, we had a decorating grant that covered one room but we had no carpets, most of the rooms had no curtains and several were not decorated – the stair well still had graffiti on the walls. The next door neighbour played loud music, sometimes all night, leaving me exhausted and sleeping during the day on a day bed in the living room. I hated it. Eventually we found a ground floor flat under our old one with a small garden and I became much happier. I started to work part-time for the mental health team and took counselling qualifications, but my husband was struggling badly. He had been fired from two jobs in succession within his probationary period and had started a job in caravan sales that was dependent upon commission. When I relapsed he simply did not cope and my parents were doing more and more for me, creating resentment.

He meant no harm and there was no malice in him. He simply did not know how to do things. If I was taken into hospital he wouldn’t know what to put in the bag so I would find an assortment of mismatched and sometimes totally inappropriate pyjamas, hairspray and face cream but no toothbrush or deodorant. He wouldn’t always come to visiting because he was concerned that he had only just got in from work and needed to eat. When left with the cooking at home he could only cook what I called ‘brown food’ – breaded chicken pieces and hash browns that could go straight into the oven. He wouldn’t touch cheese because he didn’t like the feel of it and he wouldn’t eat tomatoes, yet he would eat a pizza that had both on. It seemed that whatever happened his needs had to be accommodated first. I took this to be selfishness but only much later in the marriage I realised he had his own disability. He had dyspraxia, not often heard of then and usually misunderstood. I thought it was something like dyslexia, but then realised that it affected all co-ordination and learning. I read a book on adult dyspraxia and realised that this explained everything; the rumpled clothes and shirts that always seemed to be working loose from his trousers, tripping over steps and into furniture, the inability to plan ahead and only remembering half of a shopping list. I was expecting him to do something he simply could not do. Once I had been so frustrated that I’d thrown a full tin of cat food straight at his head! Now I knew he would never manage – he was not being selfish; he genuinely only had the capacity to look after himself. Asking him to look after me was like expecting me to climb Snowdon on two crutches. It was never going to happen.

 I knew now that the situation could not continue and eventually I plucked up the courage and asked him to move out. I understood that I was to blame for not taking into account how he would cope with the illness. I did not want to make the rest of his life so hard and I couldn’t stand the feeling of being so alone in a relationship. We were both upset, but agreed after a few weeks of separation that a divorce was probably for the best. He had felt so much better since returning to his mother’s and was looking for work. I felt a huge relief that we weren’t together anymore, but sadness and a feeling of failure stayed with me.

After the divorce I knew that I did not have the usual luxury of falling in love and expecting love to carry a marriage through the tough times. Anyone who was going to be with me needed to understand MS and all of the pressure that such an illness could put on the relationship. Put simply, love would not be enough; I needed a man to see past my disability, but also to understand exactly what our future might be with MS as the third wheel. I needed someone clear-sighted enough to be realistic and strong enough to love me anyway. It was a tall order. I learned that romance is not enough. I had to consider someone’s character, our compatibility and whether the partnership would work beyond the first infatuation. I told my friends that I didn’t think I’d ever live with anyone again. It was too much to ask of another individual and living with me and the MS would ruin any relationship. I gave up on romance and then met the biggest romantic of them all.

 

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