Life with MS

My Life with MS – by  Barry Thomas

I was diagnosed with relapse remitting multiple sclerosis in March 2000 at the age of 25.  Prior to my diagnosis I was a fit man with a successful career as a chef, and a very keen long distance runner, having competed at most distances.

My story really begins one morning, waking up with a numb right thigh.  Thinking nothing more of it I continued my day as usual.  Only after a week of having no feeling and further deterioration in my leg did I consult my GP.  He quickly had his suspicions and sent me to my local hospital to be seen by a specialist.  I was admitted and a barrage of tests were carried out including an MRI (magnetic resonance imaging) scan and a lumber puncture which involved a needle being inserted into a space around my spine to drain off cerebrospinal fluid for testing.  I was scared and confused about what was happening to me – I was never ill.  The numbness continued to get worse over the next week and moved into different parts of my body.  I was given a course of intravenous steroids and was released from hospital.

The following week I returned to see my neurologist, to be diagnosed with this unknown (to me) condition.  The first thing I did on returning home was to research my condition.  Over the next few weeks I read anything I could get my hands on to learn about MS.  I attended physiotherapy as much as I could during the first few weeks of my diagnosis, and started the fight back.

Through a lot of hard work and a lot of encouragement and the support of my family and friends I was able to begin to regain my confidence and my career.  I was lucky to have very good employers at the time who understood the difficulties of life with MS as they had a family member with the same condition.  I also found out who my real friends were as many were scared off by the condition and gradually had less to do with me before finally vanishing from my life.

My condition changed a lot during the first couple of years and I experienced new and varied symptoms and medication during that time.  I was active when I was able to be and did as much when I could.  I was prescribed Rebif (beta interferon 1a) which is a disease modifying drug used to reduce the rate of relapses and this worked for a couple of years.  I am currently prescribed Copaxone (glatiramer acetate) as well as a cocktail of tablets that I take daily.

Daily life with MS is varied.  I have constant problems that are there all the time but new issues appear every now and then.  I get on and deal with each new problem as they arise.  I don’t get down and miserable as that is just another issue.  I get on with life with a positive outlook and look for the best not the worst life has to throw at me.

As the years have gone by my MS has altered the way I live my life, but has also opened new doors and allowed me to experience new things and meet people I would not have met in my old life.  Although “retired” from my old job I am too young to go into retirement and am studying for a new career.  I have been a college governor as well as a secretary for a local MS Society branch, and am now involved with the MS Support Centre as a trustee.  I have three children to keep me active and a supportive partner who I could not be without, providing me with practical and emotional help.

I have MS, but it doesn’t have me.

A Carer’s View - by Barbara Wheeldon

Some days you wake up and it’s very easy to feel down and despondent about life in general.  The vast majority of people who are Carers for someone with MS put on a brave face and just get on with it – we convince ourselves that we are determined not to let it get the better of us.

Of course, sometimes it does and this is when a visit to the MS Support Centre somehow seems to lift your spirits and give you that extra little push to fight on!  The old saying that a problem shared is a problem halved is, in my humble opinion, very true.

On arrival at the Centre you are always greeted by friendly faces and a warm welcome, and somehow you just know that if you take the time to sit and chat and air your views on a current problem, somebody else will either have experienced a similar hurdle or possibly have a solution.  Even if the support workers and staff are unable to help with a specific issue they invariably have the contacts who can point you in the right direction, bringing you one step nearer to solving the problem, whatever it may be.

If you are very lucky you may be sitting in the right place at the right time to hear the latest joke, and if you do, you then realize that laughter is the best medicine!

Within the Centre there lies a wealth of experience, friendship, advice and information – all you have to do is take the time to stay a while and gather it in.