Tuesday 1 May 2012

I am not sure why anyone would want to read about my life.  This doesn't bother me too much, as I am pretty sure that this blog will not be read by that many people, so in this spirit of low expectation, I am going to have a go anyway.

I am a 39 year old woman with a husband, three kids, two cats, a dog, three chickens and a law degree.  I also happen to suffer from Multiple Sclerosis (MS). 

The MS part of my life started in 1998 on my 25th Birthday.  I woke up with a really sore lower back and my legs felt really heavy.  I remember feeling guilty when I called work as I could tell my boss was thinking I was pulling a "birthday sickie".  Over the next couple of days my legs got worse, I could barely walk across the room, my legs were weak and totally numb.  The pain in my back was excruciating.  My friend who is a GP later told me that she thought I might have had a tumour on my spine (I'm glad she decided not to "share" this thought with me at the time). I deteriorated over the coming days and was eventually admitted to Preston Hospital Neurology unit.  They did the standard tests - MRI, lumbar puncture and diagnosed Transverse Myelitis.  I was given high dose IV steroids and lots of physio.  Thankfully I made a good recovery and 3 weeks later I went home - shell-shocked but resolved to be proactive about getting full function back.  Nobody specifically mentioned MS but I had my suspicions.  My Mum has MS and I knew the signs.  I think my parents were terrified. I got my legs back and walked down the aisle 3 months later.

In October 1998 I was in London at a Trade Show and had met a friend for a few drinks. When I woke up the next morning I thought I was experiencing the worst hangover in history. The room span and I started vomiting. I had to make my excuses from the Trade Show (cue lots of knowing looks from my colleagues about drinking too much) and got on a train back home to Cumbria.  The following morning I opened my eyes and the room was literally upside down - my vision was severely affected and I had an extreme case of vertigo.  The vomiting didn't stop for 3 weeks.  I had another MRI and sure enough I was diagnosed with relapse remitting MS (RRMS).

This all sounds a bit depressing and of course, when I was in the thick of it, I felt desolate and to put it bluntly I was shitting myself that my life, as I knew it, was over. But...and this is the strange thing about RRMS - when I eventually recovered from each of these attacks I was on such a high that I felt well again, that the spectre of the illness seemed to disappear with the symptoms.

In the fourteen years since I was diagnosed, I have had three children.  I felt brilliant throughout all of my pregnancies and I genuinely believe my babies helped keep my MS in check.  Apart from an episode of weakness in my legs in 2003 for which I had IV steroids and two minor bouts of blurred vision I have had very few symptoms.  I had almost reached a point where I thought, "The Doctors have got it wrong, I don't have MS".  To be honest I mostly forgot about it.  

Then I had the most stressful 12 months of my life. My funny, vibrant and generally fabulous sister-in-law died very suddenly from a brain aneurysm, leaving a huge emotional black hole in all of our lives. My Mum almost died from pancreatitis and spent seven months in hospital recovering.  Needless to say, my stress levels went through the roof.  Finally last summer my body decided to rebel and I had two whopping attacks where I lost all power in my legs.  I managed to stay out of hospital (my husband was carrying me to the toilet at one point) and I had two courses of high dose oral steroids.  My neurologist was talking about disease modifying drugs.  In the space of two months I had gone from, "I don't really have MS" to, "Will I be able to walk to the toilet on my own again?" 

I recovered but this time I decided that burying my head in the sand was no longer an option.  It had stood me in good stead for 14 years but I finally needed a plan of action. My gut feeling was that I didn't want to start on the disease modifying drugs unless absolutely necessary, so I trawled the internet and came across the work of the Swank Foundation http://www.swankmsdiet.org/ and http://www.overcomingmultiplesclerosis.org/

Although their approaches differ slightly, they are both advocates of a healthy diet low in saturated fat.  The Overcoming Multiple Sclerosis programme also recommends supplementing with high doses of fish oil and Vitamin D.  I am not a scientist or an expert in MS but I think this is worth a shot. Their recommendations make good sense and have a large body of research behind them to back them up.  But let's face it - even if it has no effect on the progression of my disease, then at the very least I will be healthy.  I will be giving my body the best chance of healing itself after an attack.  There is nothing weird or wonderful about the diet - it is just how we should all be eating in an ideal world.  

That's the theory anyway....now where did I put that Cadbury's Creme Egg?

Sorry that this has been a long opening post - I wanted to give you the back-story to my story.  What I am hoping to do with this blog is to share my journey - to be totally honest about my successes and failures, to show how this illness impacts on my family and maybe even share some recipes! 




4 comments:

  1. STRONG! Looking forward to following! x x x

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  2. Great first blog post Mel, looking forward to reading more. Following you now :) xx

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  3. Beautifully written, Mel. What a difficult journey you've been on so far. Thanks for sharing your story - let's hope it can give others courage and support for dealing with this horrible disease x

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  4. Honest , frank and humerous too ! Support for Mum's with different conditions coping with day to day life too?

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