The Sun reached out and touched my hand this morning
The rich gold rays stretched out across the land, kissing
And caressing the peaks.
The misty hollows waited
My eyes sought each glimpse with desperation
Fuelled by the fear of the unknown
My hand glowed with the warmth and security of sight.
Later the trees looked like a soaring bird
It’s feathers stretched out with piercing shafts of light exploding through
Drunken eyes hold these precious moments safe
For who knows what life will bring
(19th Nov 2008)
I wrote this poem one evening as my sight started to fail and diminish. I remember the fear and worry of that day, so concerned for my girls and what was happening- no one to comfort or support.
My world as I knew it crumbled before me... family and friends trying to help. It was all such an unknown, not understanding the world I had entered.
I was an art teacher but couldn't teach without my sight. It started with a blurred patch in one eye. At first I thought it was because I was tired, so so so tired. Each day the patch got bigger. It was rather like looking at a pixelated screen. In a matter of weeks I was unable to drive and felt unsafe in the classroom. It was optical neuritis, a common vision problem and starting point for MS diagnosis.
As a single parent of two beautiful girls I had taken steps to protect us, never expecting to need that safety net. We managed the adjustments together, my eldest being strong and brave. My youngest, only 10, fiercely protective and very scared.
My sight returned, not 100% but I learnt to adapt. As an artist I am very aware of colour and know that some of the finer tonal changes have been permanently damaged. My hand eye coordination is impaired. I am shaky but drawing regularly helps to rebuild the control. I also started to stitch into my work. The machine was easier to control than my shaky hands. I find thin delicate lines are very difficult to achieve. I need good light to see and often use magnifying tools.
Learning to live with MS
One strategy I use is to think of having a certain amount of energy each day, like the egg timer has only so many grains of sand. I line things up on the stairs so I reduce the times I go up and down. The family will take things up as they pass. If I go out I put things in order and create a loop so I am not doubling back. I organise my time in a traffic light system. If it’s a difficult day, (red) I must have a green day next. Amber days must be spread out. A good day can easily go pear shaped, but a red day can also improve. It’s all about listening to your body. Set small, measured, achievable and realistic targets.
It was seven and a half years later that a dear friend of mine, who also has MS, asked if I’d like to go to a MS conference with her at The Merlin MS Centre. I discovered that the Merlin Centre is a centre of excellence for the delivery of treatments, support and fellowship.
United by our symptoms, we hoped to hear something different. Prof J Hobart stood and explained a lifestyle choice named ‘Overcoming Multiple Sclerosis’.
A lady in the audience stood up and said: “A year ago I couldn't walk... and now I can with crutches” and showed us her copy of the Overcoming MS book. It was well thumbed, full of sticky bookmarks, and clearly well read. I went to speak with her during a break; her name was Anne- an OMS convert.
Another delegate brought in to speak was Dr Colin Bannon. He was there to speak about sugar and explained that he too was on the diet.
There were several people there who followed the OMS Program and told me of their monthly meet ups where they offered each other support.
I ordered the book from Amazon and looked up the website. Having done a little research, I started following the diet. It was a struggle to begin with as it doubled the shopping time and I found myself getting things wrong, but I persevered.
I went to my first group meeting to see what it was all about and if it would help me. The friendliness, positivity and warmth, was uplifting. We swapped top tips and where the best place was to acquire things.
We shared our stories and I felt empowered that there was something that made sense. The support material from the OMS website helped and it was great to be in a place where people understood how I felt.
The difference between this new OMS group and previous ones I had experienced was the positivity, the laughter and the smiles. I am sorry to say that other support groups recommended by occupational health had left me drained and exhausted. Everything I had attended before had sucked me dry of enthusiasm and I felt drained trying to be the upbeat one. They failed to understand that just because I look healthy doesn’t mean I am happy and not in pain or constantly tired. I began to feel part of a family who cared. A year and a half later I had more energy and was beginning to feel stronger.
Becoming an Ambassador
Now into my third year of the 7-step program, I am the South Devon OMS Ambassador. I like being able to make a difference to people's lives, faster and quicker than my own experience and I am enjoying a sense of purpose and support.
I have met another Ambassador not too far from me (Cornwall) and together we try to put activities on that the group may like to do. They don’t always work, we don’t get everyone coming all the time, but I hope they feel supported.
In the South Devon OMS Circle we mostly chat and enjoy having time together. Two of our members have been on a retreat this year so we hope to share that experience with others.