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MS - my journey so far

Alison J Dunsmore

Open Door - October 2004 pages 4-5

You might consider that working as a healthcare professional would entitle you to some kind of immunity from disease. You may also think that if a healthcare professional did contract a health condition, that he/she would cope with it better than someone else. One day in December 1996 I discovered that this is not necessarily the case.

Diagnosis

My diagnosis of MS followed an episode of optic neuritis. Again, you would think that regularly coming into contact with MS patients in the course of my work would have given me an idea about what why I had lost the vision in my right eye but I had no idea. I was sure that I had a brain tumour at the very least - to be told it was MS was somewhat of a relief, at the time anyway.

I am ashamed to say that I now realise that in all my time working as a neuroradiographer in a Neuroscience Centre, I had probably never taken time out to think about what a diagnosis of a chronic neurological condition would mean to the people that I was scanning, day in, day out. The process of acceptance of this type of diagnosis was new to me.

My optic neuritis was my first real encounter with MS although looking back I was always a 'tired' person and had suffered from glandular fever as a teenager. Who knows?

Following hospital treatment for this relapse, I got on with my life while experiencing only a few minor symptoms - blurred vision, tingling and slight numbness. I made some effort to gain information but didn't really take on board that this was the condition that I would have to learn to respect.

In late 1999/early 2000 my balance was affected and I had a general feeling of dizziness and unsteadiness. Some sort of bug, which made them dizzy, was affecting my work colleagues, but when their symptoms went away mine didn't.

I struggled on, determined that this was not going to affect my life and that I would manage, despite the fact that some mornings I could hardly force myself out of bed because of the fatigue and I couldn't see a thing for the tears blinding me through anxiety and frustration. When I eventually went to see the neurologist he confirmed that it was indeed an MS relapse.

Acceptance

In 2002 I really started to take stock of the fact that I had MS and that some things would have to change.

Up until then I had spent years in denial of the fact that I had MS and that I was in fact a disabled person. After all, I was still me.

With some gentle 'encouragement' from my partner I began to accept the fact that I had MS and that unless I was prepared to alter certain elements of my lifestyle I was fast heading for that slippery slope.

Pat has been like a rock to me. Despite the fact that I told him I had MS on the first night I met him, he didn't turn and run! It is very easy to become totally self absorbed and to forget how MS can affect those closest to you. I thank him very much for all his support and apologise for all the times that I am like a bear with a (very) sore head! Unfortunately, I think I put on a brave face to all those around me and it is only when behind closed doors that all the frustration pours out.

It was with Pat's support that I contacted the MS specialist nurse. Talking to her lifted a huge burden from my mind - here was someone that understood and wanted to help me.

What must it have been like for my parents to accept my diagnosis? At least now through contact with the MS nurse they have a greater understanding of MS and what it means for me.

Communication has played a vital part in maintaining my relationship with my family and friends. In order for people to help me they have to be able to understand what I am feeling. I am quite open about telling people that I have MS although I appreciate this may not be the case for everybody and is sometimes not easy to do. I think I am flattered when people look at me in disbelief and say 'you've got MS?' So many of my symptoms are unseen but the invisibility of the condition is, however, more often a hindrance rather than a help.

Listening to the problems I was having at work, my MS nurse suggested I contact Momentum, Scotland, a charity that supports disabled people wanting to continue in mainstream employment or find a new job. Their input has been invaluable to me. I now have a Vocational Case Manager whom I can turn to if there are issues that I am finding difficult to address in the workplace. He has facilitated changes to my working pattern and communication with my employer. Because of this assistance I no longer participate in the on-call rota and now work fewer hours per week.

Through Momentum I have also attended self-esteem and self-confidence training. I never had much self-esteem but any that I did have was taken away when I was diagnosed with MS. Those around me would maybe say that I am a confident person. All I can say to that is that appearances can be deceptive! The training I have received has enabled me to speak up at work and to no longer feel like a burden to others - well, almost! I am now aware that even as a disabled person, my rights are equal to those of others around me.

Having come to accept that I have MS, although I am not sure that I will ever fully come to terms with the fact that my body cannot always do what I want, I have been lucky enough to be able to adjust my lifestyle to a level where I can maintain a work and social life.

I am no longer able to attend the aerobics classes that I used to but I try and swim when I can and even have a programme in the gym for when I feel up to it. This is best not attempted after work but on my day off or at the weekend. I still feel better after some exercise and have also tried pilates and tai chi but have had to put off thoughts about climbing any mountains!

Looking back I realise I was in total denial about my condition for the first few years following diagnosis and working in healthcare did not change that. However I feel that I have now reached a level of adjustment to my MS where I can acknowledge how fatigue is affecting me. Sometimes I feel like my right leg has a mind of its own! In saying that, I still have days when I struggle on just because I don't want to let others down and won't accept that my body is telling me to slow down. I still wake up with a new symptom and think what does this mean? When will it go away? Should I ask someone about it or am I just making a fuss?

The future

Looking forward, I hope that I will be able to continue my acceptance of my MS and to help others on this journey through fear and denial towards acceptance and the ability to move forward. I have made many new friends through MS and that can only be a good thing.

I think MS teaches you to appreciate what you have and makes you realise that life really is too short.

I'd like to thank all those around me for helping me get to this stage. I promise you all that I will try to stay positive though you will appreciate that on some days that is harder than on others!

Links

Momentum, Scotland
tel: 0141 221 2333
email headoffice@momentumscotland.org
web www.momentumscotland.org

Jobcentre Plus
web www.jobcentreplus.gov.uk
or contact your local Jobcentre

Employment Opportunities
(now part of the Shaw Trust)
tel: 020 7448 5420
email contact details
web www.shaw-trust.org.uk

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