A different view of M.S.

Have you ever wondered what your life would be like if it was made into a film? Mine would be a mash up of an Action Movie, Comedy and a Game Show.

I am thinking along the lines of Mission Impossible - where the love interest of Daniel Craig (told you it was a mash up) was injected with an incurable virus that would cause increasing invisible symptoms. Daniel Cruise, my leading man, would need to provide an anti-dote within a set time frame in order to rekindle his romantic feelings! 

If you think about it long enough, there are quite a few similarities between this blockbuster and reality. I caught an unknown virus in my late 20’s, which as time has gone on has progressed with more and more surprising and difficult invisible symptoms. At the moment there is no cure for this disease, although more and more research is being carried out into it.

The comedic side of things is apparent when I experience the inability of walking in a straight line, the strange conversations I have with family and friends and when I drift off into a gameshow whilst trying to say or ask for something. I recall one such occasion when I asked my husband what colour the local DIY store closed and have on numerous times found myself trying to describe the words I am unable to locate in my mind, and having to act them out as if I was playing a round of charades!

At least I don’t feel that my M.S. falls into the realms of Disaster Movie or Horror genre. I grant you there have been times when I could argue that my life could have, or may well, slot into these categories, but when looked at calmly and in the bright light of day things are never so bad in the end. Don’t get me wrong, some treatments I have undergone or relapses I have experienced have come pretty close to feeling as though they belonged in these film classifications, thankfully I have always returned to my original choices.

There are also a few film genres I need to focus on and remember are readily available to me. Those of the uplifting feel good nature - the type where adversity is conquered with the help of good friends or professionals. You know there will be tears along the way but a happier conclusion is waiting for me; and Science Fiction, as the world is made aware of the development of more advanced treatments and aids available to help everyone with M.S.

Looking at life in this way can almost be seen as a type of reverse mindfulness - not focusing on the negatives of the here and now but the possibilities and fantasies of life in the movies, which all helps to take your mind off your current situation and symptoms. 

Next few questions though…..who will play me and where is the popcorn?????

My Story

My diagnosis and subsequent experience with MS has been tumultuous to say the least. It’s also opened my eyes to the important things in life.

I was diagnosed in January 2017 after optic neuritis effectively blinding me in November 2016. Ironically, I was on the way to the hospital from the train station for an unrelated reason, and I realised I couldn’t see to cross the road. I was admitted for steroids, missed the appointment I was there for and had a lumbar puncture which, upon meeting Del, I found was indicative of MS. I had wondered why I’d been referred to the MS nurse without being told I had MS!

All was calm-ish for a while. I was working; which at the time I felt was the most important thing. MS has drastically taught me otherwise.

It was when I couldn’t walk down the staircase at my sister’s wedding in December 2017, that I realised the significance of my quick decline. I was using the walls to keep myself upright from room to room on a daily basis.

I was imminently beginning Lemtrada, which had been pushed back from the summer of 2017 to February 2018 because I was, astonishingly, TB positive. This meant had to take a three month course of antibiotics to treat it, after the waiting time for a respiratory referral. I still look back on it, to this day, as I believe it was the difference between my subsequent paralysis and not.

I was having my paralysing relapse in the February of 2018 when I walked (barely) into the QE for Lemtrada, and left in a wheelchair a week later. It was that fast.

Lemtrada, however, did what it said on the tin. It took time- I was finally regaining function enough to return to work in the September, albeit in a wheelchair. This was only possible, because after treating the relapse with steroids failed, I was admitted to the QE for plasmapheresis. This was petrifying at the time, as I couldn’t find any patient experience of it. I had no one to talk to who’d been through it, to gain an idea of what to expect.

It was difficult and painful- but I’d go through it again in a heartbeat if I had to. It made all the difference.

Subsequently, I took voluntary redundancy when the office at work relocated in January 2018; which turned out to be the best thing I could’ve done. I wouldn’t now be doing my Master’s in Neuroscience, have the energy to partake in old hobbies or focus on life outside of work, otherwise. All my energy used to be focussed on work and then recovering from the day just so I could function for the next. It took MS to see that was no way to live and I’ll be forever grateful.

Always look for the silver linings; that’s what MS has taught me.