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Courtney Smith

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Multiple Sclerosis - Making People Happier and Healthier Since December 2011

Posted: 12/03/2012 15:36

Coming from Australia, making the move to the UK to embark on the travels of a lifetime is a very exciting experience - one that I undertook in 2006. I still find myself sitting in my share-house in West London six years later.

There are certain people that you meet, make friends, only to have them move on, and so the cycle continues when travelling. Although every now and then someone will come into your life and make a big impact.This happened to me about six months ago. Packing my mass of accumulated stuff into endless boxes ready to move house...again...such is the life of the antipodean, I moved into a flat with a mixed bag of Aussies and Irish (naturally). One girl, who can only be described as hyper-active, enthusiastic, brimming with life and slightly weird (in a good way), is someone that in the last six months has really been an inspiration.

This 30-year-old girl embarking on her overseas adventures, one day told me that she felt a little dizzy, and that her eyes a were a touch blurry. Being the wise friend, in no uncertain terms I said 'go to the doctor, and ease up on the partying'. Fast forward a month and there I was on a cold December evening sitting in Emergency, telling my friend to stay positive and look at the 'hot young doctors'. My friend, with the whole world in front of her, was just about to be diagnosed with Multiple Sclerosis.

Wow. How does one cope with being told they have a neurological condition that will progressively get worse as time passes, thus all of a sudden having to make the big decisions about when to have children and the future in general, what to and what not to eat, maintaining a strict healthy lifestyle all whilst battling this incurable disease. A sprightly successful architect is suddenly sitting in a backless gown (sexy as it sounds, it is not exactly Agent Provocateur) asking herself "how did this happen?" Who knows? There is no definitive cause of MS, but could it be stress? (We are all stressed these days) poor diet? (She has a strange relationship with food) too much work? (Although we all work, she is a particularly hard worker, but still) this is such a confusing, frustrating disease.

For those of you reading that are not familiar with MS, it is a chronic autoimmune disorder affecting movement, sensation, and bodily functions. It is caused by destruction of the myelin insulation covering nerve fibres (neurons) in the central nervous system (brain and spinal cord). Put simply, is causes the body to attack its own immune system, which is mightily annoying.

The treatment for MS here in London on the NHS has been nothing short of wonderful. As morbid as it is, my friend almost looks forward to her monthly 'stabbings' as she cringingly calls them. Once a month she is intravenously filled with a drug called Tysabri, and it has done wonders, relieving her symptoms and allowing her to live life as usual, with the added benefit being that she now appreciates how precious life is, and is completely grasping it with both hands. She has made friends with others that are tackling this condition head on, and has a large support network in London after only being here for a matter of months.

My pal has travelled. A lot. She has sent me emails entitled 'Amsterdamaged' with contents too colourful that I am not at liberty to divulge. She exercises like a woman possessed, has overhauled her diet as much as one can with temptation always in the way and her outlook is nothing short of glowing. Her loving parents made the long-haul journey over here to see her, with the aim of bringing her home to care for her as parents are inherently programmed to do as long as they live. But, as predicted, she stayed in London and is basically living the dream. Work has become a distant second in her life, with her travelling and vibrant escapades taking a fast track to number one priority. Determination to help find a cure for MS now trumps her architectural dreams as her main quest in life. And to have fun.

Having never faced this situation myself (and touch wood that I never do) I think I would take the 'woe is me' approach, 'what have I done to deserve this?' etc etc. But maybe I wouldn't - it is hard for me to say, sitting here with my nonexistent neurological ailments. The amazing thing is not once, not at all, has my friend ever said 'why me?' No, she has taken in all of this news with grace, has been quite stoic in her approach, and has handled this with the maximum amount of poise that an Australian is physically capable of, and is just getting on with it. It is almost textbook - person is faced with a potentially life changing situation, person puts things into perspective. We worry about the little things in life, and think that our problems are far worse than those of anyone else, and we take everything for granted - of course we are going to take things for granted until an event occurs that forces us to re-evaluate those around us. But really, more often than not, our problems are eased by a simple chat and cup of tea (or bottle of wine and a drunken tantrum - whatever). Working in PR, I need to formulate some key learnings. And I identify these as being: Collectively, as a society we need to take time to smell those metaphorical roses. We need to stop questioning everything, accept things that we can't change, improve things that we can, and get happy. Harden up. Simple (easier said sometimes, I know.)

Selfishly, this MS gig is working out OK for me, as my friend guilt trips me into going to the gym by playing the 'MS card' as we affectionately call it. Apparently I have no excuse not to go, as I am not suffering from a progressive neurological condition. I very fortunately do not have anything to trump her. Unless I was to grow a third leg or some such.

As a general rule, Australians are ingrained with a 'she'll be right' attitude. And never before has this been more true. She'll be right. She really will. So here I am, sticking my middle finger up to MS, and tipping my cap to all of those amazing people who are fighting it with much aplomb.

 

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09:45 on 15/03/2012
What a wonderful post. What a great friend you are.

MS is a nasty condition because it's often not visible to outsiders - the symptoms can incluide things like fatigue and not being able to think straight.

While no-one knows the cause there are a number of factors that can increase the risk including lack of sunshine (or vitamin D) in childhood, genetics, early viral infections, being female.
There is evidence that stress makes the symptoms substantially worse for some people. Many people are diagosed after they have had a stressful time.
There is a lot of quackery around too (as with any condition where the symtoms aren't consistent), please tell her to take lots of advice before going for any "miracle cure".

The good news includes:
There is a lot of promising research into a cure (but give it at least another decade before there is anything available on prescription);
With a tiny bit of luck you can deal with it - my current poster boy is Mark Lewis the solicitor in who is representing a lot of the News of the World defendants; my poster girl is Marlo Donata works in fashion and has blogged and written about her experiences too.
There are some great support networks around, the MS Society can be really useful

Wish your friend all the best

msboy - (slighly wierd British boy)
22:45 on 12/03/2012
As one of the London people fortunate enough to know this slightly weird Aussie girl, I have to say this is perfectly put. As someone also working in PR, Courtney, some metaphorical roses are certainly in order. Life is richer for her being in it and, selfishly, and her approach to MS has taught me a lesson or ten about life. I join in with the sticking a finger up to MS.
20:45 on 12/03/2012
A wonderful post and beautifully written.
19:01 on 12/03/2012
You say: "There is no definitive cause of MS, but could it be stress?"

Actually, known contributing factors to MS are:

* Infection with Epstein-Barr virus, especially if it is as an adult and not a child
* Being female
* More than 50 genetic variations, mostly related to the immune system
* Lack of sun exposure in childhood.

Stress is not on the list of known causes, and one study showed that even extreme stress in childhood (due to sexual or physical abuse) had no measurable effect.
18:56 on 12/03/2012
You say: "There is no definitive cause of MS, but could it be stress?"
Actually quite a lot is known about the major contributing factors to MS, even if the detailed mechanics are not understood:
* Being female (doubles your chances)
* Lack of exposure sun in childhood
* Genetics, from over 50 different genes, mostly those related to immune system
* Infection with Epstein-Barr virus (especially if contracted after childhood)

Also, one study on life-time stress showed no measurable effect, i.e. even being raped or repeatedly physically abused doesn't increase your chances of getting MS.