Smoothing out the ride
Open Door - May 2012 pages 12-13
To say that the 'Newly Diagnosed MS' evenings saved my sanity is a gross understatement. From the moment that I was whisked into hospital with a suspected stroke I felt myself drowning in a whirlpool of information. Some of it was terrifying, some confusing and some plain disturbing. Out of this turmoil I was rescued through the calm, reasoned and informative sessions provided by the excellent MS nurses at the Western General in Edinburgh.
My name is Lindsey Barley. I am a 50-year-old wife and mother of three, who works as a primary school teacher. Way back in the mists of time, in 1993, I woke up one morning with no sensation in the lower half of my body. There was no pain and everything else was normal. Three weeks later, friends insisted I visit the doctor as they were fed up with me checking to see if my clothing was still in place. Within 24 hours of seeing my GP I was lying in an MRI scanning tube - I knew this was serious. Next day, I met with the neurologist. He explained what MS was, informed me of the two separate incidents 'rule' and encouraged me that I may never have another episode. I went off happily and got on with life. Feeling gradually returned to my lower half and my only symptom was an occasional dragging sensation in my spinal cord. I had three babies with normal deliveries, was exhausted by them, went on holidays abroad, endured the stress of several house moves and generally survived the rough and tumble of life experienced by working mums everywhere. Any thoughts of MS faded from my life.
Last summer we spent a day on a barge. The following day I felt I was suffering from sunstroke. I was thick headed and the ground felt unsteady. I was unhappy driving. The next day I was very sick and by day three we called the doctor, who diagnosed labyrinthitis and gave me an antisickness injection and pills. My own GP then upgraded me to acute vestibular neuritis and upped the anti-sickness medication. I lay quietly in bed and tried to eat and drink something every day.
On day five my face fell. That wasn't attractive. It felt tight and itchy and I looked hideous in the mirror. I still wasn't concerned and only towards the end of the day did we call NHS 24 for advice. Of course, that set everything in motion! I was whisked off in an ambulance and scanned for signs of a stroke. Next day I was transferred to the Western and their excellent Neurology Department. Now I still didn't think this was serious. I thought they were just making sure and then I would be sent home to rest until the 'virus' passed.
That naivety didn't last long. After a day of tests the registrar came for a chat. His opening words were that I must know this was serious. I gulped and then came the news it was possibly a brain tumour or some sort of MS attack in my brain stem. That was the first time I made any connection. I nearly cried with relief as I told him of my episode nearly 20 years ago. Notes were retrieved, steroids administered and I was sent home to see what was going to happen next.
For the first time things suddenly became unpleasant and frightening. I had never researched MS before as I wasn't sure I had it. Others in my family suffer with it, but the details were vague. Friends and family gathered round offering love and support, but always full of questions. Work colleagues called and asked when I'd be returning to work, the children wanted to know when we would be back to normal. Terrifyingly I didn't have any answers, but even worse, nor did anyone else. Of course the web was a double-edged sword. Excellent sites provided some information and guidance, but there seemed even more horrifying pieces out there. I felt there was no certainty, nothing to hold onto and at my feet a gaping hole of horror was opening, threatening to engulf me and my family. It sounds very melodramatic, but in the wee small hours my mind would whirl with questions and scenarios that threatened to overwhelm me.
The power of good information
It was such a relief to attend that first meeting for those newly diagnosed with MS. It was the first of a series of six hour and a half sessions on consecutive Wednesday nights. The wonderful MS nurses, Mathew and Nicola, provided tea and coffee and biscuits. Everyone else in attendance was just like me; confused, shocked, overwhelmed but most importantly, keen to get back to normal life. At first there was an embarrassed politeness in the room, but very quickly we were chatting and comparing experiences. Now secretly I had dreaded this bit the most as I am not fond of medical details. I needn't have worried. Everyone had such a different tale to tell and was full of positive tips about what had helped them. Nicola had to work hard to stop the chat and gain everyone's attention.
We then had a talk from one of the hospital's neurologists. Not a lecture, but a useful, factual discussion. We asked questions, were shown recent research and pointed to websites for further information. I am not sure that I learned a great deal of new information, however all that I already knew came together and was put firmly in context. The terrifying hole snapped shut, and my fears disappeared to be replaced by manageable concerns. It wasn't magic, just the power of good clear information, calmly delivered.
And that is how the sessions progressed. We met an occupational therapist, a nutritionist, members of an MS charity and a further neurologist. At all times Mathew and Nicola were there dispensing wisdom, humour and refreshments. We discussed issues regarding work, pregnancy, medication, research, diet, exercise and coping strategies. In fact there were few definitive answers, but the advice and experience of the professionals and those who sat beside me were invaluable.
My husband attended the sessions with me. This meant he could ask his own questions and I didn't have to explain to him facts I couldn't yet fully grasp.
It has been quite a year. I would fully agree with those who compare life after MS diagnosis to a rollercoaster ride. Nothing, it seems, will stop the forward motion with its highs and lows, but the sessions I attended at the Western have given me a firm handle to grasp onto and that has helped me to smooth out the ride.
MS: what does it mean for me?
a practical and positive introduction to MS
a book for anyone who wants to understand the mechanisms of MS and what causes symptoms to occur.
See Open Door news for more on our research into the information needs of people recently diagnosed