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Living with MS

Open Door - February 2005 pages 6-7

Steve and Beth McGowan

Steve’s story

On the 20 March 2002 at 3.30pm I was informed that I had MS. My appointment was at the Southern General Hospital in Glasgow. I had been admitted one month before for an MRI scan, lumbar puncture and a visual evoked potentials test. I was given the diagnosis and a large envelope and told I would be contacted by an MS nurse and admitted in about a month’s time for steroid treatment. Then we were out of the room - myself and my wife - clutching this envelope, to make our journey home. On the way I realised that the last ten years and seven different diagnoses had some type of explanation. I was not insane . . .

In the weeks that followed, I was desperate for information – anything, just for someone to tell me what was going to happen to my body. I now realise that no one has these answers.

My life had already changed. I was no longer working in the building trade, which can be a very physical job. My relationship with my wife had changed. The physical side of our marriage was affected, which was a problem that deeply hurt me. I felt I was a person with no role. My thoughts went to my wife and three children. I didn’t want to waste their lives looking after me with my illness. I wondered if they would be better off leaving and getting a new life.

I had a meeting with my MS nurse before being admitted to hospital. She also made appointments with the multidisciplinary rehabilitation team, with a urology nurse at the Royal Infirmary and I was given physio and saw an occupational therapist. John, the urology nurse, arranged for me to be given Viagra. Because of government regulations this could only be one a week. I think this rule was thought up by a woman or someone with a sick sense of humour! Find a cure, then don’t let people use it.

Looking for other ways of employment I attended a computer course but I have serious problems with my memory, fatigue and vision, which can be a pain when staring at a computer screen.

Overall my MS appears to have given me a little bit of everything - problems with balance, walking, eyes, hands, memory, bladder and fatigue. I find it difficult to accept help. I don’t use a walking stick as I find it awkward. I tend to stay away from company as I find conversations with a lot of people hard to take in and understand. I can take one conversation and add it to another one. I have been told I could cause a fight in an empty house.

This is a part of MS you are not told about; everyone has the idea of someone in a wheelchair but these parts are very hard to cope with.

My extended family have stayed out of it. I can understand this. They have their own families and commitments. MS is not a short-term illness and they do not understand it. My friends were mostly workmates or people I socialised with in my local pub but I no longer drink as my balance is bad enough, so I don’t see them.

I go to the Haven in Blantyre* for alternative therapies, which I enjoy. It is run brilliantly and has a fantastic team of volunteers. As the people who go to The Haven are not just people with MS, it can sometimes make you see how fortunate you are.

We try to be as normal a family as possible. My daughter is 16 years old and a normal teenager. She understands I have MS but as long as it does not affect her life too much then that’s ok. I don’t want to make her sound callous, I just prefer it that way. I don’t want her to be different.

My son is 10 years old. He can be stroppy about my illness. He remembers when I played football with him, went on funfair rides and wrestled or chased him. I know when something is bugging him when he comes in and calls me Nigel Naepals.

My second son is 6 years old. I have been ill most of his life. He is spoiled because it was easier to say yes. When asked he says Dad has a bad back. He deals well with me being ill.

When talking about my MS I can’t just say what happened to me. I am part of a family unit with wife and children and they have to cope with the effect of my illness as much as I do. I try to take things one day at a time. I used to worry what the future would bring but then no one knows the answer to that.

Beth’s story

It didn’t come as a shock to me when my husband was diagnosed with MS. I knew something was wrong. I had lived with him and watched as he became ill only to wait so long for an appointment to see someone that he was a lot better by then.

Stevie talked about what happened to him after the diagnosis. What happened to me was nothing. I was left to get on with it.

I don’t have any problem being Steve’s carer. As his wife, I probably did a lot of the things when he was ok. But I try not to look on myself as a carer as this could cause problems in a marriage. You could become his nurse and no longer a wife. This is not a situation we want to happen.

I have found the services very fragmented. It would make life easier if there were a centralised point for treatment of MS, with neurologists, MS nurses, occupational therapists, physios, urological clinics and sexual dysfunction clinics staffed by people who understand MS. But I suppose this would come down to funding. After all MS is not a very glamorous illness; you can’t buy a few machines that go “ping” and make everything wonderful.

I also attend The Haven* for alternative therapies for stress and as a carer you are made to feel very welcome, which doesn’t always happen within the NHS. Steve’s MS nurse is also very helpful, but she has so many patients to deal with for the one person.

We do try to get on with it and be as normal as possible but the illness does affect many parts of life. We still manage to have normal husband-wife fights and if this changed I would think we had a problem.

My outlook for the future is the same as Steve’s - one day at a time. We will deal with things as they happen.

* The Haven is a centre offering information, support and therapies for people in Lanarkshire with long-term conditions. Telephone 01698 727884 or visit their website at www.thehavencentre.com

Similar services are offered at MS Therapy Centres around the country. For information on your nearest centre, email info@ms-selfhelp.org or visit www.ms-selfhelp.org/html/therapy_centres.html. Alternatively, contact the MS Trust Information Team.

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