MS Awareness Week 2013: My primer on MS

by Sasha Wilkins on April 28, 2013 · 14 comments

MS Awareness Week 2013

Monday marks the start of MS Awareness Week 2013. I first ran this post in 2008, when the blog was little more than a year old, and then again last year, so I hope those of you who have been reading for a while will forgive the repetition of a subject which is so close to my heart.

Not only has my sister been diagnosed with Multiple Sclerosis for almost fifteen years now, but my dear cousin, an old school friend, & several friends’ relatives have MS too. Through this I have come to realise that awareness & education can be as important as raising money for research and support.

Before you get into the meat of this post, I wanted to add a quote from a guest blog I ran in 2011 from an anonymous reader after I took part in The Hardest Hit March upon Parliament:

“I just wanted to say please keep shouting, keep campaigning and although I’m sure it is very painful to talk so publically about your sister’s health and the challenges she faces (and I admire her for letting you!) please keep tweeting and blogging about them too.

It’s only when abstract and hypothetical situations are brought to life like this that politicians and policy makers can begin to appreciate the reality of so many people’s lives – and maybe realise that it might be nothing more than luck that keeps us healthy and independent that than in desperate need of the support that some are so keen to take away.”

Today I am using my blog to do a little education so, in return for reading my blog each day, I’d be grateful if you’d bear with me for a couple of paragraphs whilst I inform &, I hope, engage you.

Multiple Sclerosis means multiple scarring and refers to the process where the body’s nerve response conductor to the brain, the myelin sheath around the nerve endings, becomes irredeemably scarred and damaged by the body’s auto-immune response system.

This in turn means that the body’s signals to the brain are slowed down, or rerouted, causing no end of problems & responses, which can be different in every single MS patient, hence the reason why no one person experiences MS in the same way or severity. Symptoms can come & go (relapsing remitting MS), or get worse over time, (progressive MS).

MS is the most common disease of the central nervous system affecting young adults. Over 100,000 people in the UK have MS. 57 people every week are diagnosed. MS is a complex, unpredictable condition: no two people have precisely the same symptoms. There is no cure but symptoms can be treated – for example, by MS specialist nurses.

Problems can include neuropathic pain (like awful sunburn and/or tingling permanent pins & needles, bladder infections & loss of bladder control, optic neuritis (pain, loss of or fuzzy vision), loss of sensation (which can mean you can’t walk as you can’t feel your feet), lack of co-ordination, balance & spatial awareness, over-whelming fatigue, cognitive slow down & dissonance (where you can recognise things but not recall their names) and pain. Patients may experience one, some, all or none of these symptoms. (Here is my dispatch from hospital with my sister during a relapse.)

But, just because MS patients often have no visible symptoms, it doesn’t mean they are feeling well. Of course, not every person with MS will experience fatigue, but the majority do and for many it is their single most disabling symptom, battling it on a daily basis

We always use the following analogy to explain the unique nature of MS fatigue, (which is why many people with MS can’t just go down the pub at a moment’s notice, or why they often feel comprehensively exhausted all the time.)

Imagine that any activity has an energy point value. You and I, as healthy people, start each day with an unlimited number of energy points, so we can do whatever we like, when we like.

On a not great day, an MS patient may only have twenty energy points. It takes two points just to get out of bed, one to go to the loo, another one to feed the dog, another to brush your teeth, a couple to make & eat a bowl of cereal and a couple more to get dressed.

That’s nearly half your day’s energy allocation gone and you haven’t actually started your working day yet. If you want to see your friends, go shopping, eat a meal out, you need to conserve your points during the week, so you have enough saved up to get you through the journey & socialising. Even having someone over for a couple of hour’s conversation, let alone staying with you, takes up precious points. That’s why work can be impossible, spontaneity can be a bad idea, and many MS patients give up going out.

Comments like, “Oh I would just work through it”, “Well, I get tired too”, or “I’m ill & tired too: I have a thyroid problem”, show a basic incomprehension of what MS fatigue actually is.

MS fatigue isn’t caused by tiredness, it’s caused by the body fighting to reroute the nervous system, & the best thing a patient can do is to stop and let the body concentrate on fighting through. An MS patient snoozing in bed in the middle of the day isn’t being a lazy so and so, or just giving up: they are helping their body by concentrating their physical & mental resources.

If you’d like more information on how MS affects patients, carers, health professionals and relations, then the utterly brilliant MS Trust website is a great resource. And here is my sister giving up her anonymity to guest-blog on LLG about living with MS. 

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{ 11 comments… read them below or add one }

Tania Kindersley April 28, 2013 at 22:52

This is written with such clarity and grace, and thank you for educating me. I’d missed the dispatch from hospital, and caught up with it through the link. Had not quite realised the extremes through which you and your dear sister have to go. You are both very brave. Sending love and hope, and hurrah for the MS Trust and for you for supporting it.

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Michelle April 28, 2013 at 23:01

A very interesting insight. Thank you for sharing. I am not sure I know anyone who has MS but good to know more about it. Good luck with your run and strength to your sister, family and friends.

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Christina April 29, 2013 at 02:30

I like your point way of explaining the tirednes for some one that isnt very famil (me) with MS

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Nishita April 29, 2013 at 09:14

Thank you for the wonderful insight. I have two friends with MS, and I totally relate about the fatigue issue. You have explained it all so really well. Another point that needs to be added is the depression that comes with it.

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Jo April 29, 2013 at 13:30

Thank you for writing such an eloquent and easy-to-read description of *what* MS is! So many people (most?) don’t understand – even the closest of family & friends. It’s exasperating – understandable, but exasperating! And uses up more energy points trying to either explain – or just hide symptoms. The thing is, people can’t understand unless they’ve experienced it, meaning this is even more important to get out there. This is the best article I’ve read! From my partner (who has MS and is on Tysabri currently) and me – THANK YOU! Wishing your sister all the best. Jo x

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Franglaise Mummy April 29, 2013 at 14:34

I’ve been reading your blog for over a year now but this is the first time I’ve felt compelled to comment. Wow! What an amazingly insightful post. Thank you for sharing this and hats off to you for being such a caring sister. Don’t hesitate to keep sharing and educating your readers.

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Natalie April 29, 2013 at 15:23

Thank you LLG for lending your voice to MS sufferers and raising awareness so eloquently. I think statistically everyone in Britain knows at least one person with MS. It is such a cruel condition.

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happi mess April 29, 2013 at 21:28

I think everyone knows someone who suffers with ms. Its horrible to watch people lose control of their life, so important to raise awareness.

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Phyllida April 30, 2013 at 02:07

Thank you for this thought provoking post. A family friend has MS and it’s distressing to see how tired simple things can make her, but I still feel very ignorant of what exactly MS is and this post helps a lot in clarifying it. I cant believe some people would be so crass as to compare MS to ‘feeling a bit tired’. Hopefully your efforts to communicate the severity of the illness will help allay such misunderstandings-the points system analogy re energy you make is really great. All good wishes to you, your sister and family and keep up the excellent work in ALL that this blog encompasses. xx

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V&R April 30, 2013 at 10:14

Hi Sasha

Thank you for writing this. I have recently learned that a close friend of mine has MS. She is in her mid twenties and is on weekly medication to deal with the symptoms. I found this piece to be really informative and helpful.

Keep up the good work

x

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