Monday, 22 July 2013

So it finally happened after all...

They said when it all got confirmed that I might find it easier if I set up a blog.  They said it would give me a forum to share my story but importantly to help me remember what is going on!  I found the blogs that I have read very helpful in dealing with the rollercoster that is MS, so thank you all!

As I sit here now hiding from my old best friend, the sun, I can be quite grateful that I now have 6 weeks in which time I can recuperate after the hardest term I have ever taught and give my body a chance to put all the weight back on that I was trying to loose for that all important 'summer figure' or as I keep telling my friends, the 'mankinni body'!

It was as a teenager that I was first aware of the hereditary link with MS, probably not the best source, but well done Susan in 'Neighbours' for pointing that one out!  I now know that it is very unlikely to be passed on, but with my Auntie having had MS and my Mother having SPMS, I had my concerns. Watching the journey that my mum took from being invincible to wheelchair bound wasn't easy, but the one thing that I have learnt is that she is the strongest person I know and probably ever meet.

It was in 2007 during a hot build up to the summer and having drunk far too much the night before (pretending that I was still at uni!) that I woke up with the mandatory splitting head and wobbly legs, but this time it was different...I couldn't see properly out of one eye!  Now I know that I probably did get blind drunk that night, but not literally!  In a panic, I booked an opticians appointment, but he had no idea what was wrong and I felt that he almost didn't believe that there was a massive dark spot in my vision.  In seeing the doctor, he sent me to an ophthalmologist who confirmed after many odd tests (i'll come back to them another time -  I loved running around the hospital waiting room with electrodes stuck to my head!) that it was retrobulbar neuritis -  a classic precursor to MS :-(

So off I went and told the Mrs, which was difficult as she had seen my mum progress over the previous 5 years and then of course I told my mum and dad - that was hard.  In true parent fashion, they were positive that it would never develop and it is with regret that it eventually did.

The next 5 years was a frenzy of over analysing every odd feeling that I had outside of the ordinary and then trying to convince myself that it wasn't a symptom, it was normal, my memory wasn't getting worse, it was just age!  It was in October of 2012, however, that I eventually had to admit defeat and see a neurologist when I got the weirdest feeling that someone was pouring warm water on my leg when I looked down and that a colony of ants suddenly took residence all over my hand!  So I guess it turns out that all those odd feelings weren't normal, they were symptoms after all, boooo!  When I spoke to my parent's about it, my dad summed it up the best.."Oh sh*t", exactly what I was thinking!

So there it is, my journey to this point in brief.  Don't get me wrong, this really is a rollercoster.  For every down there has to be some massive ups, along with plenty of mini victories - one of which for me recently is the prescribing of Tysabri, something that I have been very lucky to be offered after some very ineffective alternatives.