What MS did to me

One day in 2003, fear took over my life. I took a shower and found that the whole of the left hand side of my body was numb, like when you go to the dentist. The next day I went swimming and it was the same. Then I started to trip over steps and kerbs and falling.

Suddenly I found I could only walk a short distance before my legs stopped working. Then my left hand became weak and I couldn’t hold a fork properly. Clearly something was very wrong.

My doctor was completely baffled but as I was in Menopause at the time (I was 48) tended to put it down to that. I believed him simply because you cousin had gone through a similar thing.

By my 50th birthday, I was walking with a stick. I had seen a neurologist who thought I might have had a stroke. Looking back, I realise how ridiculous that was.

For the next 18 months I was in hospital three times, and had every test known to man. I even went to Queens Neurology Hospital in London, where some woman bashed me over the head several time with what looked like a tennis racket, then pronounced that there was no activity in the left side of my body! I could have told her that!

After all this, still no diagnosis! My Neurologist described me as a ’puzzle’ and ‘unique’. At this point I could no longer do the stairs in our home so we made the decision to sell up and go down to our French house and live there. My daughter was already living nearby so that helped.

So, into the French health system. Given that France is a very bureacrating country, there was much paperwork, but I saw a neurologist fairly quickly. She did two comprehensive MRI scans. She then told me that I had Primary Progressive MS, an acute, late-onset version of the condition for which there was no treatment.

I was now in a wheelchair and could no longer walk. It was 2010. Finally after 7 years I had a diagnosis. She told me that it showed clearly on the lumbar puncture result which had been done during my first hospital stay 5 years before!

I had had peritonitis in January of that year, had been in bed for 3 weeks after an operation. In November I had a Urostomy to resolve my bladder problems, and constant infections from an in-dwelling catheter.

After a life-threatening bout of Sepsis in 2014, we decided to come back to the UK and be close to our children, my daughter having returned 4 years earlier. This is where we have been since 2016. I have good carers, community nurses, and an MS nurse.

So, before all this, I was living an active life. My children were all grown up. I was studying for a PhD in Citizenship, I looked after my grandchildren, my husband had retired, we were happily married (and still are), we travelled etc etc. Having brought up 5 children, run my own business, we both had worked hard and were enjoying ‘us’ time.

I should perhaps say that when I married at the age of 21, I married a package which included his 3 children from his first marriage! So we were having the time together that we hadn’t had at the beginning!

When the MS struck it took my whole life, our whole life, away. I have to have a medical bed in a separate room so the intimate side of our marriage was abruptly terminated. Neither of us understood what was happending to me we fought, we cried, we shouted a lot, I suffered panic attacks, my husband became depressed. We struggled.

We got through, with the support of wonderful people in and outside the family. Now we are settled. We have accepted things as they are and that they will never change. You never come to terms with something like MS and what it takes away, but you learn to live with it, and be the best you can be.

That is my New Years resolution, to live my best life, to concentrate on my writing which helps me so much, and to make sure I make the most of my new Power chair, long awaited!

Happy New Year!