MS: Busting the Myths
I will start by changing one word in the wonderful song for the film ‘Love Story’ “Where do I begin, to tell the story of how great a love can be.”
I will change that to: “Where do I begin to tell the story of how great a life can be.”
Life does change when you have Multiple Sclerosis, you can still enjoy a great life, a joyous life, a life full of love, do not let Multiple Sclerosis define you or who you are.
I read that a person with Multiple Sclerosis uses 30% more energy at rest than a person without Multiple Sclerosis – think about that, you need to go easy on yourself.
I was diagnosed in 2006 at 48, overwhelmed, I could not cope. I was angry, confused, and suicidal, I could no longer ‘burn the candle at both ends’ I could not multitask like before, my brain could not cope, and my body could not keep up. By 11.30 in the morning, I was totally wiped out. I retired at 55 years old.
Cognitive Behavioural Therapy, 12-month duration, taught me that I can still do what I used to do to the same standard, things just took a darn sight longer. It was the mind reset that I needed.
Yes, I still overdo things in the garden and physical fatigue hits, or I write too much or do too much research and cognitive fatigue wipes me out. Multiple Sclerosis fatigue is not like just being overtired; it is as though someone has removed all but one of your Energiser bunny batteries. When either of those happens, I just rest. If I really overdo things, then the following day I rest, giving my mind and body the time, they deserve. I no longer feel guilty, why should I, my body and mind need recovery time – think 30% more energy at rest, what happens with activity?
There are times when I am cognitively too tired to even watch a movie, then I listen to music, close my eyes, and relax.
If I cannot do something one day, then fine I will do it when I can, no harm done. Life is to be enjoyed not endured. Things will still get done, just later. Give yourself a break, it does work.
Like most people with Multiple Sclerosis, I still have a lot of annoying symptoms for which there are drugs, creams, cooling towels, cooling jacket, cold shower, calf socks for calf cramps, gentle exercise, walking sticks, bladder, I always know where the nearest toilet is! Positive thinking and being gentle with yourself works wonders or a cuddle with our rabbits.
I started writing to keep my mind active after I had to stop work. I picked up and old manuscript, typewritten in the eighties. I read through it and refiled it, I had this idea about the damage we are doing to the environment and species and started writing and researching. The Charles Langham series was formed. My literary agent achieved a 10-year contract with a new publisher in October 2021, which was great news. They have already republished my Charles Langham environmental political trilogy, ‘The Pacific Affair’, ‘The Atlantic Affair’ and ‘The Caribbean Affair’. They have published my Paul Nichols murder mystery called, ‘Murder by Truth’ (a man explains to his wife how and why he died and who killed him) and soon will release my two children’s book based on our two Dutch rabbit siblings, ‘Bunnie the bunny’ and ‘Bunnie and Bugsy’.
My agent knows I have Multiple Sclerosis and I research a lot and write at my own pace, for my own enjoyment with no deadlines, that way it stays an enjoyable pastime. If I am too tired to write, then I don’t it is that easy. I am currently working on the second Paul Nichols novel, ‘Murder by retribution’. I have a fourth Charles Langham novel forming in my mind. In March I had a new website developed by Utopia which looks brilliant. Davina, my wife does a lot of proof reading and editing for me as I go and suggests ideas so we know that when we send the manuscripts to my Literary Agent, they are as close to perfect as we can get before the publisher’s editors start their work.
My agent has retained all the film rights for my books. Adapting a novel to a screenplay is challenging work even using specific software.
We do everything we can to make life that little bit easier.
We have a love of travel and before Covid alternated each year between a UK trip via Singapore which we love and going on cruises. We use wheelchair assistance through airports, which is less fatiguing.
We plan everything in advance down to the smallest detail, to ensure all will go smoothly and stress free. The journey is part of the holiday and should be enjoyable. We do everything to make it so.
We have two house therapy rabbits, 8y9m old siblings, they are a joy. We worry more about their health than ours! Both have arthritis and on many medications.
We love gardening and have made the garden as easy to look after as possible, and still grow our own vegetables, out of the rabbits reach of course, and rhubarb which we use to make wine and crumble.
We treat ourselves to Ardbeg Islay malt and Remy Martin and certain wines, like Malbec and enjoy a tipple before dinner. Why not, life is here to enjoy.
With Multiple Sclerosis, we still have a life of love, joy, and achievement.
