Being Diagnosed with Multiple Sclerosis – Part 1: Oh, the fun.

Neurons Steve BoseleyIf you are following this blog you will probably know this.  If you aren’t, please follow along; everything you need to know is here.  Between writing horror fiction, I have also found time to write about parts of my life with Multiple Sclerosis.  Writing is a big part of my life but, like it or not, so is MS.  Writing this now is cathartic, in a way.  It feels good to say it out loud.  It’s terrifying to post it on this blog for many reasons: people may not be interested and may be turned off from coming along on this writing journey (and I would HATE that), people may assume that’s what I’m about (but it isn’t – I love a severed head as much as the next man), or you may just think you haven’t got time to read about my problems (It’s a problem I enjoy solving, and writing plays a huge part).

I hope you’re none of those people and allow me this small indulgence.  Normal service will be resumed.  I humbly offer to you Part 1 of my Diagnosis story.  I call it ‘Oh, the fun.’

This is a true story.  Some of it may sound like a work of fiction, but it is, nevertheless, a true story.  It is my account of my life with MS, and includes some of the difficulties I face as a wheelchair user.

My name is Steve, and my story starts fourteen back in 2001.  At the age of 31, I was diagnosed with Multiple Sclerosis (MS).

If you’re unaware of this condition, let me offer you a brief description:

  • It is a neurological condition affecting the brain and the spinal cord.
  • It’s a lifelong condition that is usually diagnosed between the ages of 20 and 40.
  • There are an estimated 100,000 people diagnosed with MS in the UK

Typical symptoms include:

  • Fatigue – not regular ‘I’ve had a busy day at work’ tired. But more ‘I’ve just run 3 marathons and climbed 200 flights of stairs, and now it’s time for breakfast’ tired.
  • Difficulty walking.
  • Bladder / bowel problems.
  • Difficulty swallowing.
  • Numbness in parts of the body.
  • Muscle stiffness.
  • Problems thinking, planning and learning.

 

Now, although it is not particularly pleasant, there are worse things in life, but at the time, but at the point of my diagnosis, it did not feel that way. It felt like my life was finished. A death sentence.

Of course, the world didn’t end, and I am obviously still alive.  But what did end, was my old life, a life full of physical activity, working out in the gym, going running, and generally being a very fit and active person.

When I was 13, I started playing American football.  I stipulate ‘American’ and not just football, because I am English, and in England, ‘football’ is what I am watching on the TV at the moment – FA Cup highlights, Plymouth vs Liverpool. Proper football, you know?

 

By the time I was almost 18, I was playing for the Great Britain youth team and had pretty much devoted my life to the game.  By the time I reached 19, I had given up alcohol, as it didn’t go with being healthy.  I have never smoked or used any kind of drugs.  While I still went out as every 18 year old does, it wasn’t quite the same, as my friends got progressively drunker, while I stayed stone cold sober.

In my early twenties, I played for a national division side (the game enjoyed its peak during the 80’s), the Nottingham Hoods.  The team was good, and the talent level was such that it was very difficult for me to get into the starting lineup.  So I worked hard, went to the gym three times a week, trained with the club another three days, ran every day after work and during the season, spent the seventh day travelling around the UK playing in the league.

I did that pretty much until I hit my early 30’s, so it came as a shock to me when I received my diagnosis of multiple sclerosis.  Almost overnight, the American football stopped.  My running after work stopped.  My gym usage reduced, to the point that I am at now, which is that it has stopped altogether.

Before the diagnosis, my doctor had signed me off work with stress related symptoms.  I had no idea what was happening to my body and I couldn’t understand why the simple things, like speaking, had suddenly become so hard. Hardly surprising that I was stressed!

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15 thoughts on “Being Diagnosed with Multiple Sclerosis – Part 1: Oh, the fun.

  1. What a story. In the late 70’s I was good friends with the National MS Society Director. I learned a lot about the disease and did some speaking tours related to fundraising. (I was in demand as a speaker then) I have known some sufferers and they seem to share one common trait. That is an incredible amount of dedication to fighting the symptoms. You sound like the rest and I wish you well. Writing will play a big part in that fight. Thanks for sharing.

    Liked by 1 person

    • Thanks Cathy! It always helps to talk to others. I’m 16 years in, but it still catches me off guard sometimes! I also work mostly full time and my wheelchair is just something that makes living my life possible. Thanks for your comment!

      Like

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