My MS Story

Hi my name is Sharon, at the point of writing this I am 44, I have been married for 22 years, I have a daughter who is 11 and I have had MS for approximately 2 years.

I was born into a very athletic family, my mother was an Olympic athlete and my father was a middle distance runner, I was raised on a track. Both parents were absolutely obsessed with athletics and have remained athletic coaches well into their retirement. 

We lived, ate, and breathed athletics, fitness and a healthy diet. 

When I was 14 I managed to extract myself from their obsession, it was not my dream to be the fastest runner on the track, or how many miles I could run in a week at “x” minutes per mile. Nor was I interested in watching it on the TV. 

Actually it really annoys my parents to this day that I do not own either a tracksuit or a pair of trainers … well I was always a little rebellious! 

I continued to be fairly active but doing all the things I wanted to do – aerobics, dancing, horse-riding and I even tried rock-climbing in Wales (once).

I met my wonderful husband when I was 16 (and we have had a very happy marriage). It was in my late teens that I began to have problems with my lower back and knees, I was diagnosed with mild hip-displacier … I now had a very good reason to never run again. 

Unfortunately it meant even low-impact aerobics was out of the question. So sport and I parted friends, I wasn’t that disappointed!

My daughter came along when I was 33 and despite the long nights of sleep deprivation, severe back ache from constantly picking up a small child I showed no signs of MS, I had a normal labour/delivery without any painkillers or intervention.

The MS started a couple of years ago when I was about 41 or 42, my first sign of it was constipation, poor memory and I just felt odd. 

I had a horrible feeling of foreboding, like the bubble was about to burst on my world, I couldn’t understand why and I couldn’t shake that feeling. 

About 6-12 months later we were on holiday in Disney, Florida and my back started hurting (hardly surprising given the dodgy hips and all the walking around the Disney parks). Then my right foot started fuzzing (a bit like pins and needles), I also started to feel a little shaky and vulnerable but thought nothing of it (other than, what an unfit and lazy person I had become). 

It became so bad that my husband ended up pushing me around in a wheelchair, well I was absolutely mortified, but my back was excruciating and I was having trouble picking my feet up. At this stage I thought that I had just trapped a nerve or something.

I visited my GP and I think he was suspicious but there were so many other more simple things this could be, I had physio and x-rays etc, things started to improve.

One year later, and I have to point out I was very stressed. We had the builders in and my daughter was just about to sit the 11+, there was a lot of upheaval at the time and decisions needing to be made. 

I got up from the sofa and thought my leg felt funny, went to use the toilet and literally nearly scolded myself on the toilet seat (my right side felt hot and my left side felt cold when I sat down), very strange. 

That foreboding feeling hadn’t gone. 

Over the next few days I became semi numb down the right side, a tight band of intense numbness around my waist, my right foot was tingling, and both legs felt like they were running on 10% power, I had slurred speech and the worst fatigue I had ever felt.

After the usual tests of MRI, lumber puncture etc I had a confirmed diagnosis of relapse and remitting MS. I was literally devastated, this sort of thing happened to other people. 

I was raised to be fit and healthy, I have always eaten loads of fresh fruit and veg, I don’t smoke, I like my wine but I don’t drink excessively, I’m not overweight, I have never taken drugs and I don’t do “ill”. This should really happen to someone who abuses their body surely!! 

Apparently not!

Well it’s been a year since my diagnosis and life has calmed down now, I am not bursting into tears every time I think about having a “chronic illness”. 

I am living a relatively normal life. I have learned to manage my energy – on bad days when I have fatigue I rest, on good days I go out for a 2.5 mile walk (I would to more but the dodgy hips won’t allow it), I do the housework, feed the family, go food shopping, throw dinner parties, see friends. I had to have a hysterectomy 9 months ago and I didn’t suffer a major relapse (brilliant!) I just got a bit fatigued, who doesn’t after a major op.

I have got some permanent damage from the major relapse last year: a fuzzy right foot, 5% numbness from the armpit down on the right side, constipation, cognitive thinking and memory issues - but you learn to put up with it. It’s not all negative, it has given me a wonderful gift of living in the “now”, not taking life for granted, appreciating what you have. 

I have been truly blessed to have such wonderful family and friends who support and help me when I’m down. But I have made a promise to myself, my daughter will never ever be my carer, she will have her own life to lead no matter how bad it may get for me.

The way I look at it is … MS is like an unwelcome visitor, when it’s here you treat it with the utmost respect but hope that it will soon be gone, and when it’s gone you breathe a huge sigh of relief, pour yourself a nice glass of wine, and carry on as normal. 

In fact a friend once said to me that now I have MS my days of wearing high heels are over, oh no not me, I went straight out and purchased a very bright red pair of high-heels and a pair of leopard-print stilettos. I may only wear them going out for dinner, but I still wear them. 

I told you I was rebellious!

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