I was hoping to write a post about MS Awareness Week 2012, however, the MS Trust tweeted about this truly excellent post from Liberty London Girl whose sister has MS. Liberty London Girl writes very well on what having MS means, I don’t think I could put it better so please read what she has to say whether you have MS, know someone who has MS or just would like to understand. The energy points analogy is really good – I find it helps me if people understand what I’m going through. When I have the energy and bravery to write about MS I will try to explain it better.
Here’s how the energy points analogy section reads:
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.
Thank you Liberty London Girl: MS Awareness Week