World MS Day

I just dropped in on Facebook and saw World MS Day and the post asked me how I was spreading awareness. I stopped and thought for a moment; what would be the best way of making someone understand what it's like to have multiple sclerosis? Today this is especially pertinent because I have just picked up my brand new Motability car. To the outside observer I guess I look like a lucky woman; I have a lovely house (half packed up for moving, but still), I don't have to get up every morning for work, I seem to have disposable income and now I have a brand new car!! Couldn't be better?
When you 'get' a disability, everyone assumes you get everything for free. People assume you are given items like wheelchairs, or houses even. I have had people refer to me as lucky because I can have a new car when they can't afford one. I have often replied 'you have the disability and you can have the car', that soon stops them in their tracks. Let me tell you how I got my disability.
One day I was driving to my job at the Scunthorpe Evening Telegraph where I worked full time as an advertising representative. I was 22, fit and active and had only had the odd period of illness over the years. I was just coming over the brow of a hill when I had to pull up in an emergency stop. A car had run into the back of the car turning right just ahead and I had just avoided joining the shunt. I felt my neck snap back and forth. I drove round the crash, making sure the police were called, and carried on to work. Yet, as the day went on my neck started to stiffen and ache, it was swelling at the base of my neck and I started to struggle to move my head. I drove home and took some painkillers and assumed I had whiplash.
The weekend progressed and I started to feel 'odd'. I couldn't feel the outside of my left arm or my little finger on my left hand. I had a strange buzzing sensation down my leg. As Monday came I thought I'd better get checked out by my GP and I rang for an emergency appointment. By this time I couldn't feel the left side of my face properly and I seemed to be dragging my left leg. I was taken from the surgery immediately to hospital. I think he suspected a stroke, but also had experience in neurology and I now appreciate his urgency in getting me there. They immediately started MRI scans, CT scans and nerve conduction tests. Then followed a horrific lumbar puncture, which went wrong and left me unable to even lift my head without being sick. This lasted two weeks and I was given steroids several times over those months, drifting into work when I could and staying at home when I couldn't.
It was later, at a routine GP appointment, that the truth finally dawned. He looked at me and said 'you do know what they think you have?' I shook my head, because no one had said. It hadn't been pointed out to me and at one point I think a doctor thought about telling me, even taking me and my family into his office for a serious chat and then not revealing anything. The GP told me they suspected MS. I was so shocked it didn't sink in. I imagined the MS society posters of a spine ripped out of the page and I wondered if that would happen to me? I had no idea how the disease even worked. I was relieved it wasn't a brain tumour because at least that meant I would live, but how would life be with this new disease. A couple of weeks later the specialist conformed relapsing - remitting MS. I would probably not deteriorate, but would be ill from time to time. I remember some of the cliché's used like 'live a relatively normal life' and 'live an ordinary lifespan', but it was almost as if nothing was sinking into my brain. I was numb.
I remember sitting in the corridor afterwards, watching people pass back and forth and wondering if this was real? It was almost as surreal as Alice in Wonderland falling down the rabbit hole and finding a whole other world where she is sometimes too big and sometimes too small, never quite fits and is always under threat from something just out of sight. I was now in the new world of the 'disabled' and I didn't know how to fit in my world or with my friends any more. People treat you differently when you're ill. They might stop seeing you altogether because they don't know what to say, or treat you with kid gloves because they think you might break, or not mix you with their other friends because now you are 'other' and you don't belong with them. Maybe this was something I felt rather than something deliberate, but it was there all the same.
It took an MS Therapy Centre to educate me about my results and what MS was. I had a lesion on my brain causing inflammation. The myelin sheath protecting my nerves had become damaged and my nerve messages were scrambled. I found this in all sorts of different ways - some days I couldn't walk at all and crawled around the house, sometimes I could walk but stumbled or fell into furniture because my legs wouldn't do what my brain was saying, I would go to pick up a teapot and sometimes my hand simply wouldn't lift it whereas other times my hand would shudder with an intention tremor where I would go to pick it up several times and knock it all over the place.
I started to feel better with steroids and get the help I needed with occupational therapy, physiotherapy, and rehabilitation services.
I manage my MS well now and I have maybe two relapses a year. That may seem mild, but if I tell you that my most recent relapse made me unable to open my eyelids and that should give you some idea of the severity of symptoms. I always have steroids and improve, but in between I still have left sided weakness, right sided wear and tear in my joints because they are struggling to compensate for the left, and I have crippling pain and fatigue every day of my life. I take up to 12 tablets a day to manage my MS and my pain syndrome and there are some days where I am on top of the world and others when I can't move from my bed. Yes, it is mild when compared to my husband Jez who died from breathing difficulties and pneumonia because of his MS 6 years ago, but it is severe compared to the active and fit 21 year old I was. On an emotional level there is a huge toll - I have lost relationships, work and study opportunities, any idea of having children (I have Hughes Syndrome too) and my security. I literally have no idea what tomorrow might bring.
When I picked up my beautiful new car this afternoon I started to drive it away and immediately tears welled up and I became emotional. The voice in my head was saying 'you don't deserve this' and I realised how bad the last few years have been. The Motability scheme I have decided to use means I pay my benefits to the scheme so I can lease a new car, with insurance, tax and RAC cover. It means I have security, but I pay for it, and have just signed over £1800 as a deposit, of my own money. This was not freely given. I have just been in a relationship though where my disability was used against me. Where the person who loved me most told me that it wasn't real, that my difficulties were my own fault, and why did I deserve a brand new car? What made me so special?
What I want to say on this day of awareness is that it is hard to live with MS. Anything we seem to be given is hard won, worked for, and often given begrudgingly. We are disbelieved, disliked because we are seen as a drain on resources and often ignored by the medical community because we can't be cured. Living with MS is hard because it takes away the life you thought you would have and replaces it with something uncertain, shaky and frightening. The best way to understand what it is like to have MS is to listen, yes there is a 'test book' case and medical books you can read, but the best way is to simply try to understand the person in front of you and believing what they tell you. Meanwhile, I am going to try and enjoy my new car!