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A partner with MS

Open Door - Winter 2001 pages 6-7

By Frank Norman

I met Lorraine four years ago at a party at the house I was renting. Our eyes met across a wine stain she had created on my carpet. A couple of days later I called her up and arranged for us to go for a drink together.

This moved onto more drinks, more conversation and more fun. I made the decision that this was a person I would like to get to know a lot more. The chase wasn't particularly easy, as I found that I was often being disappointed by her cancelling the arranged meeting a few hours beforehand. She told me she was tired. A statement with which I was to become more and more familiar.

At that time however, it seemed to be an excuse and just like when being told that a woman was 'washing her hair'! I guessed that there was probably something more to it. The strange thing is that she seemed genuinely upset to have let me down.

One evening, she told me that she had something important to tell me about herself. We were only a few weeks into the relationship, and I told myself that whatever she could tell me, I would not show any significant reaction. I would act cool whatever bombshell she could drop on me.

She told me that she had MS. I replied something very stupid along the lines of "What, you have some Marks & Spencer vouchers to spend?" (Not very cool now that I think about it!).

I had heard of MS before, yet had no real idea as to what this actually meant. Visions of wheelchairs filled my mind, yet somehow I forced myself not to let this worry me too much and to find out a little more. Besides I liked her and refused to allow two little letters to interfere.

Over time, we grew closer. I learned more about the illness and, through this, learned a lot more about Lorraine. I was determined not to let MS rule my images of how our future could be. As such I think I tried to convince myself that there was nothing wrong with Lorraine, and that she was as strong as an ox.

Of course, that couldn't last. Her tiredness was sometimes overwhelming and stopped her - us - from doing the things that I believed we should be doing. I feel guilty for admitting this now, but I see myself as a perfectionist in most things that I do, and started seeing Lorraine as less than perfect. Each time MS reared its horrible little head, I retaliated and arguments ensued. I was starting to blame Lorraine for holding us back.

Don't get me wrong, Lorraine can be stubborn too, but without me really understanding it, her tiredness was the root cause of those arguments.

"I was tired too," I would tell her, but she would reply that her 'tiredness' was a different sort.

Lorraine sat me down and started to explain about the effect on her body, mind and senses when the fatigue sets in. She explained that she had once lost her eyesight, lost control of her legs too. This also had a marked effect on her speech. She has never slurred, but more often than not, she would choose the wrong word in a sentence or the sentence would take ages to complete. She then told me how it actually feels in her body...

... her nerves were like electric wire but with all the plastic insulation stripped away. "Just imagine," I remember her saying, "having thousands of red hot ants crawling through all your veins". I imagined. I didn't like it at all.

Months passed, years too. I was slowly coming to terms with Lorraine and MS (or so I thought). One thing was beginning to annoy me however, and that was the fact that whenever we went out, all our friends crowded round her. It was Lorraine they were interested in, despite the fact that they had last seen me the same day as they last saw Lorraine. I was becoming the chauffeur, 'Lorraine's boyfriend', a blank face.

I'm not a jealous man at all, but I found myself wanting someone to ask me how I was feeling. They never did. Well, that was to be expected wasn't it? I was the well one, wasn't I? Lorraine had the MS not me. I should stop feeling like this!

But I didn't. I got more and more bitter, more resentful towards Lorraine. I had become the financial, mental and physical support. I bought the house. I paid the bills. I had the stressful 8am - 7.30pm job. I picked her up when she was down (literally!). But no one understood what I was going through, and I didn't help matters as I never really told anyone.

Lorraine and I have some fantastic friends and we have always vowed to be there for one another, yet I always preferred to give rather than be given. I found myself staying in with Lorraine when she wasn't feeling well enough to go out. I could have gone out myself but felt uncomfortable on my own amongst the many couples who comprised my friends.

I got embarrassed each time I called them up to give another excuse for not coming out. I didn't want to blame it on the MS each time, but at the same time, did not want to lie to our friends.

Four years on from the party, Lorraine and I are still together and very committed to each other. Yet my problem has not disappeared and neither have all the arguments. I am still frustrated, confused, scared even, that my life, our lives, are not completely under control, and I wish I knew someone who understands what I have been going through, so that I can have a chat, or even a little moan over a pint.

'Partners', as far as I'm concerned, are a strange group. We are not carers. Nor do we fit into the nice little category of 'friends and family'. We are the lovers, the husbands, the wives, etc. I have a silly little idea that what is needed is a UK group called POMS (partners of MS), and if anyone decides to carry out this idea, then let me know which pub we are meeting in, as I'll buy the first round!

I hope this story goes some way to showing the 'partners' that they are not alone, and that they are very much an integral part of MS rather than separated from it.

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