The world was never the same place after two American Airlines jets were crashed into one of the most globally powerful enterprises, the New York World Trade Centre.
On September 11 2001 my own world was completely rocked for a different reason. I was given a confirmed diagnosis of Multiple Sclerosis.
Life as I knew it was sent into a spin, nothing would be the same again. In some ways it was a relief as it helped explain so much. The reason my legs would buckle with pain when I tried to rush home from Uni to pick up my daughters from primary school. Why I would be so exhausted that a ten minute power nap was critical before going to collect them. Why so many unexplained symptoms had occurred like a suddenly weakened wrist that came on out of the blue and I couldn’t pick up two litre milk cartons out of the fridge, only to vanish as a symptom a few weeks later.
In other ways I felt like a human ticking time bomb. To be told that you could have an attack (exacerbation) at any time without warning that could affect any part of your body was at first terrifying. I used to go to bed each night wondering whether I would wake up unable to move an arm or a leg, and would it be permanent?
MS is the body attacking its own immune system, not unlike other auto immune conditions. Only in the case of MS it attacks the brain and spinal cord. Specifically MS attacks the myelin, which is the protective outer layer of neurons. The result is that scars form at the site of the damage and so the nerve never works as effectively again. To off an analogy, imagine the nerve or neuron is an electric cable, and the myelin is the outer rubber coating that insulates the electricity. If the rubber coating gets damaged the electricity conduction is damaged, making the device faulty. If the damage is severe enough the device no longer works.
The Pathways of Conduction
So too with MS the damaged myelin causes faulty conduction of nerve impulses that mean the conduction is slower or erratic. When the damage is so deep the nerve may be severed resulting in all loss of connection. This is how some MS sufferers may end up unable to walk.
I’ve been extremely fortunate, and after 13 years I can still walk and talk, I still have my full mental acuity and ability to use my hands and so on. Most of my deficits and difficulties are hidden and include intermittent bouts of depression and anxiety, a tremor in my left hand that makes it difficult to use my camera hand held, extreme fatigue on a daily basis, difficulty concentrating, dyslexic writing and typing, shocking short term memory (I’m always losing my keys, phone, glasses, bag and forgetting doctor’s appointments and so on.) I have difficulty regulating some internal functions such as body temperature, heart rate, and hunger and thirst.
One of the hardest issues for me personally is the inability to handle my emotions which can lead to uncontrollable angry outbursts when I’ve been hurt or upset by someone. Its very embarrassing and sometimes scary when I feel so overwhelmed by the strength of the emotions. I sometimes feel like my brain will implode with the intensity of these feelings.
Learning to Adapt
Adapting to Changes
What I have learnt from having MS for many years is to be extremely adaptable. As circumstances can change with new symptoms and I can have good and bad days, I have learnt to expect the unexpected and have devised contingent strategies for the bad times. I had to accept that working full time or on a regular basis outside of home was simply not an option so I found alternatives such as freelancing.
Appreciate the Small Things I’ve learnt to really appreciate the small things in life that make me feel content. Time spent with a close friend, just laughing and being silly, time with my family, wonderful hugs, a walk in the brisk cold air, smelling all the marvellous scents in a garden.
Creative Therapy I have found the best therapy is spending time doing the things I love like writing and photography and art. Creative pursuits are really therapeutic as they create a feeling of relaxation. When you are totally focused on doing something you love you get in the flow and feel an incredible sense of wellbeing.
Creative Intrepetation of the Ravages of MS
Spending a few hours working on something creative and thinking about what it is you are creating allows your mind to wander and work through issues that may be bothering you. It helps bring a sense of calm that really makes a difference to my anxiety, depression and sometimes out of control emotions.
Importance of Friends and Family I’ve learnt that my trusted friends and my family are the most important things in the world. I have faced ostracism, and fear and misunderstanding from many others when they found out about my illness. This made disclosure really difficult and even as I write this I am terrified of doing so. But these bad experiences simply made me so much more appreciative of those that always support me, and completely understand me.
Silver Linings The most important lesson I have learnt is to look for the silver linings. There have been so many positive outcomes in my life that are a direct result of my developing MS. I never would have studied photography and found such a passion in me as I would have continued to study Psychology instead. My children learnt to be so much more independent and compassionate of others as a result of my illness. I could go on and on listing so many other positives.
Never Stop Trying The other truly valuable lesson I have learnt through living with MS is that the people who give up on life through a diagnosis of a chronic illness, are the ones who go downhill really fast. I have never let MS get in the way of setting goals and having dreams. I’ve never given up trying to achieve new things and set myself new challenges. As a result I still astound all the doctors and neurologists when I tell them I have been diagnosed for 13 years and am on no MS treatments since my body could not tolerate them. I am living proof that the mind is our most powerful tool and we can use it to overcome so many things.
Just wanted to say that I found your article on MS very good. Thanks for sharing a piece of yourself like that and you are an inspiration to MS sufferers. I have worked with MS patients and yes I can relate to your article on all levels. Great stuff