My MS Journey
I was recently in Astley Ainslie rehabilitation hospital awaiting a package of care, and due to the Covid-19 situation, I was transferred to Leuchie House in order to free up their hospital bed. While at Leuchie, I spoke with the staff about my experience with MS and being in hospital during this outbreak and they asked if I would write a blog to share with others, so here goes…
Back in 1989, I was working with lasers at my place of employment and one day I discovered I was having difficulty seeing properly from one eye. Initially we suspected it was laser damage and I was seen by various specialists who were provided by the company. After an MRI and a lumbar puncture, which showed a change in protein levels, as well as my vision blurring due to exertion or a hot bath, I was told I had Uhthoff’s Phenomenon, a temporary worsening of MS symptoms. Not having Google at that time, I left it at that.
Everything other than bladder problems continued as normal until 1999 when I began to suffer from foot drop and heavy legs in general, especially when walking in long grass. I also experienced an unusual feeling in my lower spine. My pain became more severe, and I was eventually referred to a doctor at the Department of Clinical Neurology at the Edinburgh Western General Hospital in Edinburgh. I received quite a detailed examination and a few days later received a letter of only four lines telling me I had a MS of which there was no “surgically remedial lesion”. I was shocked to be told this, especially in the form of a letter and in a manner which was very medical and insensitive. I sent a letter off to his boss asking why I was told in this way and with such medical jargon. I got a reply of two A4 pages and the bottom line asking, how did I want to be told?
I had my first attack in 2004 brought on by a UTI of which I recovered, but I never worked again. From then on, as many do no doubt, I tried many cures. Some of which were the Chinese Tea Diet, the Best Bet Diet, acupuncture, kinesiology, hypnotherapy and hyperbaric chamber. I even spent a month in an Indian clinic following Ayurvedic principles. A turning point was when I saw a brilliant MS specialist, Paula Cowan, from the Department of Clinical Neurosciences (DCN) who helped me physically and mentally to accept things. I no longer look for cures and I live life to my fullest. I've gone through the stages of walking with a stick and then walking with crutches and now I use a wheelchair from which I transfer to a scooter when I am out and about. I have always been heavily involved in motorcycle racing and every day I'm in my workshop building my racing bikes as a purpose to get out of bed. I'm also heavily involved in the organisation of racing in Scotland.
On 26th of November last year, I was admitted to the Edinburgh Royal Infirmary with a temperature of 39 degrees due to a UTI. Unfortunately, my infection worsened and I ended up in hospital for a few weeks which resulted in me losing my package of care at home. I was transferred to the Astley Ainslie rehabilitation hospital. Here, the physio consisted of only 30 minutes or less, five days a week (the session on the calendar said one hour, but as it’s an old cottage style hospital with the wards being in separate buildings - the porter pushed you across, you received treatment and were then placed on a passive exercise bike to finish off the hour). Don’t read this wrong, the physio staff were very good but they had huge time constraints due to the volume of patients. The Occupational Therapists spent a lot of time with me setting up a work station that enabled me to strengthen my hands which had little grip. The ward staff where I was in the East Pavilion B were brilliant and brought me into their lives by sharing the life they had outside. After about four and a half months, I was informed that I was being transferred to Leuchie House where I had visited for a couple of evening courses in the past. Now I only wish that I had been transferred there sooner! I saw my bedroom with a double aspect, enjoyed home-made meals, home baking and a laundry service with a turnaround of one day. The staff were very welcoming and so helpful as I struggled to put on my own TV at times. I was asked if I'd ever come down for respite to which I explained that where I live in the country, which offers me views in all directions, I didn’t think I would at the moment. I can see a real need for it and it's a lifeline to many people who are not as fortunate as I am. As I live alone, I could do with the company at times not to mention the cooking and home baking. I didn't say no though!
I would also like to add to this blog that when people start to sympathise with me, I always say, “I may have MS, but it doesn’t have me!”