We hear a lot about Multiple Sclerosis (MS), but the day-to-day reality of it remains something of a mystery to many of us. So with World MS Day today, one amazing Spabreaker, Zoe McCaffrey, shares her experience of the illness and offers a little advice to sufferers and friends …
I found out I had MS when … I was 21 years old with a two year old daughter. I then went against doctor’s wishes to have two more beautiful girls. My consultant was worried about the impact my MS would have on my pregnancies. He was correct, but that didn’t stop me, it just made me fight harder.
My symptoms were … I woke up one morning and was numb down my right side. This progressed over the period of a week to my left side. By the time I was sent to hospital I couldn’t grip a tea-spoon let alone keep myself clean. I left hospital two weeks later in a wheelchair but have worked very hard to get out of it and stay out of it. I have to use a cane for balance and only occasionally will I allow myself to be pushed around in the wheelchair on long journeys. My eyesight has been badly affected and I now have to wear tinted glasses permanently. The pain can be horrendous at times but you learn to find ways of coping. It will never disperse completely but with medication and a positive attitude you learn to get through each day.
The impact on my daily life is … I have to make sure I have someone with me to ensure my safety and that of everyone around me.
The biggest obstacles are … Not being able to cook a meal without spoiling it, not being able to run a bath without burning myself or freezing as my perception of hot and cold has been affected. I would love to be able to go shopping for the day without having to spend the next day or two in bed recovering.
The best thing I have learned through having MS is … To grab every opportunity that is given to me with both hands as I don’t know which part of my body my next relapse is going to attack and I may never get the opportunity again.
Other people can help if they … Stop assuming that just because one day I can walk a little more easily, peel a potato or two, or dance with my children, it means that everything is hunky-dory and I am making things up, because you don’t see what happens behind closed doors. There is still a massive stigma to having such a hidden disease that needs to be brought to the surface. More people need to take notice of what MS actually is and what it does to a person. I have hidden the truth from the majority of my family because it is so hard to comprehend that at 35 years old I can’t always cut up my own meat, that I can’t feel my fingers to be able to wash myself properly, or that I don’t have the strength to be able to do the normal housework that comes with a family of five.
The best advice anyone has given me is … To take each day as it comes, stop worrying about the small, insignificant things in life, and laugh as much as you can on a daily basis.
My advice to anyone who has just been diagnosed is … Cry if you need too and don’t be afraid, like I was, to ask for help. People will respect you more if you are truthful and will be more willing to step forward to help you when you need it. Keep a diary of what chores affect your MS as these things will help your consultant/doctor/MS specialist nurse to give you the correct treatment plan. MS affects everyone differently, what works for one person may not necessarily work for you but it’s worth a shot. Whatever happens please don’t be too hard on yourself, you have done nothing to deserve this dreadful disease but you need to fight it. Don’t let it take over your life as well as your body. YOU OWN YOUR MS, IT DOESN’T OWN YOU.
The thing that makes me feel on top of the world is … Seeing the joy on my children’s faces on the days when I am strong enough to do all the crafts and cookery bits they want to do with me. This goes the same for the Rainbow (5-7 yr old Girl Guides) and also the Brownie unit’s that I volunteer with. I want to show the next generation that you can overcome all the obstacles put in your way if you put your mind to it, but that you should never feel ashamed to be who you are. I may not have my health, I may not have money, but I have my sense of humour and my wide open heart, this means more to me than all the riches in the world. I fight each day living with MS for my children and that is all I can do.
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