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.