M.S.and Me

Here are some examples of how some of our members have learned to live with their condition and how it has affected themselves and their families.

When your wife is finally diagnosed after months of tests and years of symptoms, as having MS, it is hard not to think of the worst scenario, and when you have three small boys and a mortgage to consider it can get very frightening, my wife has the illness but we all have to live with it. And so 28 years later we are here, happy and content that we gave the boys "as normal life as possible" How did we cope? I don't know to be honest, but you do. Disability in whatever form focuses you and taxes you to find solutions, you manage your disability. Humour is essential, how can people with a serious illness laugh? They have to, what else is there? Misery; anger; and regret; we would rather have a laugh, That's why in helping to form this charity we try to be positive, yes there are bad days in fact really bad days, but that is not the whole of your life, if you are feeling down we will lift you, if you are concerned about anything we will try and help you, and if we can't we usually know someone who can. I cared for my wife long before she had MS, so I don't see it any different now. So when you think about the person affected by MS think about the people behind them they are all affected by it . My wife has a saying "she lives with MS, she doesn't live it"

 

 

I was diagnosed 7 years ago after going to the Doctor's with a bad cold and upper tract infection, which went into vertigo, then had aches in my knees and chest. At this time I was in a very stressful job with a 9 month old baby and a 9 year old daughter. I woke up one morning with a tightening in my chest which kept getting tighter, which made me very frightened, went to casualty were I waited for 9 hours until they admitted me. This first week they gave me an optical test and M.R.I scan and a lumber puncture. At this stage I couldn't walk and I definitely couldn't stand without falling over. They then diagnosed me with M.S. which was exactly a week later. They then put me on a 5 day course of intravenous steroids and physiotherapy plus exercises, which had to be done 3 times a day. One week later the consultant came to see me and couldn't believe the dramatic change in me, I could walk (without falling over) and my balance was 10 times better How did I feel once diagnosed? - relief was my initial thought after asking 'is it hereditary' and 'will I die of this', the answers to this was no. I new then that there was a name for this illness that I was starting to think was all in my mind. I handed in my notice at work and then was put on the sick, I then got a car which I never had before and I went to college and retrained. All I can say about this illness is that there has been a lot more positives then negatives, ok I can't walk and stand for long, but I can manage stairs, I use a wheelchair for distance (shopping and holidays etc) I've met so many new people while having this illness, I'm a trustee of this charity and my life is very full of good things. Yes I do have low days and if only days but anybody could say this, there's a lot more people worse off then I am not only with M.S. but other very major illnesses.  The most important thing to have in life is a sense of humour; a positive attitude is vital to survive life.

My diagnosis was a little different as at 18 years of age I began to have unusual symptoms which, as is the norm, were dismissed as just in your mind. Then they (my mother and the doctors) decided that I may have a dislocated fracture of the neck and after several months lived with a neck brace on they decided that it was something else but "not to worry dear" just get on with life. My sister told me later that Mum suspected that I had MS but not to say anything, as she should not have told me the doctors also said nothing persuaded by my Mum as she thought that I might go to pieces. Instead of telling me and giving me support I was left with the "pull yourself together girl" and get on with life. A friend in school told me about her mum who also had MS. I had met her a few times and who seemed perfectly well so I dismissed what was said by my Mum as a nurse doing as what most nurses do, think of the worst scenario and then work backwards and got on with my life. So here I am, 32 years later happily married with 3 boys just using a wheelchair occasionally (I have a tendency to fall over even without a drink!) but otherwise walking slowly and unsteadily but nevertheless on my legs with the help of a stick. I am on Betainterferon and have been for the last 6 years and thank God it has helped to keep relapses at bay. In fact it is John and the boys who help to keep my feet on the ground, if I am looking for sympathy OK but don't push it! In fact when I asked them if my being in a wheelchair embarrassed them (I had not thought about it and it seemed only natural to me) their reply was "No but your choice of socks (very bright and colourful), your jokes (I can't tell ajoke) and your attempts at whistling (I can't whistle either) are the biggest cause of embarrassment." How's that for humour and compliments! Fortunately the speech therapist has suggested that whistling will help to exercise some of the muscles in my mouth, oh what fun we have! 

 After a heavy goods vehicle accident in 1991, I was diagnosed as having epilepsy. I have found having the treatments of Aromatherapy, Reflexology and Yoga have enabled me to relax and manage my stress factor, which in turn means my epilepsy attacks have decreased.

Hello, I'm Bernie, I say, I've had M.S.for about 10 years, but looking back it's probably more like 15 years. I used to get strange tingling down my back when I put my head forwards and both my pupils would often be different sizes. These were dismissed as a trapped nerve and something with a long name [which I can't remember]. I've experienced double vision and a short time of total blindness in both eyes! I,ll be forever grateful to my husband for his support in this time. Having had lots of tests done, I was told that I had a virus.(Sound Familiar) 10 years ago, my feet and legs would go numb, eventually I was diagnosed with M.S.Daft though it sounds, I thought "what a relief!" because I just thought "Well, if it isn't M.S., what is it?".One of my main problems is fatigue. I have tried different medications, but I haven't managed to find anything that helps yet. I have learned to manage my symptoms as best I can over the years. My son is my rock, he always has been, we sort of look after each other, I'll never forget the times that he has sorted things out when I've been too tired, tucking me in bed or covering me up if I'm sleepy on the couch and he would just sit quietly and watch a video and make me a drink from a very early age. He's been brilliant. He always used to be worried that if I did'nt go to that place (the old centre) and go into that room (the therapy room) that I would die. Once I realized his anxiety, I let him go inside and see that I was only having Reflexology or Aromatherapy. Once he had some sessions himself and he began to understand, he instantly became more relaxed he's older now 12, he still worries and tries to help, but he seems to have a better understanding. He's able to talk openly about M.S. now. Where he used to get very anxious and upset. I don't know what I'd do without him sometimes. Although he often drives me mad, (I do believe that the feeling is mutual) he can't half make me laugh. 

 

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