Today marks the start of MS Awareness 2012. I first ran this post back in 2008, when the blog was little more than a year old. So I hope you’ll forgive the re-run four years later, as I suspect this will be the first time of reading for many of you.

Not only has my sister been diagnosed with Multiple Sclerosis for almost fifteen years now, but my 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.*

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).

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 last year.)

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 guest-blogging on LLG about living with MS

*So I always try to support MS in a creative way that provokes interest: one year I made chocolate cakes & sold them by the slice in the Vogue House boardroom to Condé Nast girls in aid of the MS Cake Bake (doubly joyful: feeding cake to Voguettes & raising money/awareness), and I helped the MyShoes for MS campaign celebrity shoe auction by leveraging my address book to solicit shoes from celebs (Andrea Corr gave us her YSL heels which made £2800!) & from the best shoe designers in the world. Divine Mr. Louboutin even signed his pair. (Altho I haven’t ever forgiven the Gina PR for not even bothering to reply to a single email. A no would have been fine; dismissive-ness was not. What goes around comes around, I always say.)

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15 comments

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Thank you for such an admirably educational post. I now know about MS. Really, I “get” it .

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I just wanted to say that I think your explanation of MS is really good and hits the nail on the head. I was diagnosed at the age of 27, almost 4 years ago now. I’m one of the lucky ones with relapsing remitting MS and apart from a big attack when I was diagnosed (double vision, pins and needles and right leg weakness-I was in a wheelchair for a couple of weeks) I’m generally pretty healthy but fatigue is the main problem for me.
For the fourth year running I am holding a cake break at work (I work for a small stockbroker on Hanover Street) and it is always a great success, raising a good amount of money for the MS Society. Most people at work don’t have a clue I have MS and when some of them do find out there is often a shocked look on their face and I can tell some of them are thinking ‘but she’s not in a wheelchair’. To me that is one of the main points of MS awareness week-to educate people that not everyone with MS does end up in a wheelchair. We are all very different.

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I always am so impressed by the dedication you have to getting more information out about this. The fatigue part really is so important. I suffer from arthritis and for years was on strong immuno suppressant drugs, and fatigue was a major side affect. Since changing medication things are a bit better but I know my limits. Explaining fatigue is so difficult because people just do not understand it. They think you are somehow not being strong enough or a being a bit pathetic and that makes it a thousand times harder to have to set yourself limits- you then have to justify them to people who are failing to comprehend. So thank you for giving hints of what that is like, not only for MS sufferers but many more.
xxx

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I just read this: very inspiring and interesting. Take a look!
http://www.bbc.co.uk/news/health-17786085

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Excellent post!
From somebody that knows.(yes I have MS)
Alison.

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I agree with Laura’s comment about your dedication to raising awareness of and educating people about MS. No matter the disease or the cause, awareness and education are extremely important. Funding for research (toward finding a cure) is also vital and important, but as you’ve mentioned here, there are many misconceptions that education/awareness can work toward debunking.

All the promoting you do of MS to raise awareness is extremely admirable. I have seen some of the comments people have made on past (unrelated) blog posts, about how all you do is blog about your life and your travels and yourself. I don’t mean to bring these comments up to remind you of them (most of these opinions were expressed in a rather rude way). But whenever I see such a comment, I want to point out how tirelessly you advocate for something that affects many, many, many people. You’re not doing it to earn yourself points with anybody, and I’ve never read it as anything but completely selfless.

I don’t know much about MS, but I have certainly benefited from your posts on the subject and do consider myself more educated now. I’m also inspired by your creativity, proof that there are many ways to inform people of something important.

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(For what it’s worth, I know there’s more to research than finding a cure! I didn’t realize I left that out until after I’d submitted my comment.)

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Thank you for such an insightful post. I’m going to a charity drinks tomorrow in aid of MS, to support a few loved ones. I also have an old friend who was diagnosed several years and it does astound me how little MS is actually discussed. My friend was so scared when he was diagnosed but he is now married with two beautiful children. He is living his life to the full and he has a loving and supportive family around him. I do feel that a lot more needs to be done to raise awareness, so that we can understand it more. xox

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Well said.
I know MS can be like so many diseases, in that it affects everyone differently. We as a society need to remember compassion, and spend less time thinking “Well, that’s not how it happened to me, so you’re just weak.”
Also, you sound like a good sister 🙂

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I like your points scheme…Although one may look wonderful on the outside the sheer exhaustion is a battle. MS and C patients have to constantly pull themselves in and accept that they unable to do a few things that seemed so easy before! I hate not being able to change lightbulbs etc. After changing a duvet cover I need to sleep for 24 hours! My head tells me to go out and dance…but my body says “girl you are havin a laugh!”

Reply

Hi
Thank you for sharing this information. You explained it clearly and to the point.

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