Describing MS

Hi all,

I read this, and being newly diagnosed with MS thought it described the way it feels perfectly. Great way to describe it to people who don’t have it too! :slight_smile:

If you owned a home and one day you noticed the kitchen light didn’t come on as quickly as normal, or would periodically flicker but, then one day it came on and was fine. Then two days later you noticed the living room light didn’t come on when you flipped the switch the first time, but after several attempts it seemed fine. Then the kitchen light didn’t work again, and the door bell didn’t always work. Over a period of time you notice that all the electrical outlets seemed “hinky” and not quite right. After several months or years you realize that all things electrical in your home just weren’t working the way they were when you first moved in or had the house built.

So finally you call an electrician and he discovers that mice have gotten in you your walls and chewed at all the wiring; little bites here and there. Some wires were completely bitten through leading to this or that outlet to be completely useless. Other wires just had little bites leading to intermittent usage, sometimes they work and sometimes they don’t. And other wires were not affected at all.

So you call an exterminator and he gets rid of the mice and then you have the electrician rewire your home and everything is good and working again.

With MS the house is your body and the electrical wires are the nerves that go from your brain to the various parts of your body and the mice are your immune system.

There are drugs that can help stop the immune system from attacking the nerves and causing MORE damage, but whatever damage is done, you have to learn to live with. There is no way to rewire the system.

We have to have patience for people living with MS, because they are never quite sure when the outlets (arms, legs, eyes, ears etc) are going to work properly and when they are not. Imagine for a moment living in a house and never knowing for sure which electrical outlets worked and which did not. Imagine having the television quit or get messed up in the middle of your favorite show, or all the lights flicker or go out for no apparent reason. Imagine the frustration of knowing there is no cure, no rewiring, and no way of knowing when things will work properly and when they will not. Imagine the house looks fine, perfectly normal. Every individual outlet functions perfectly on its own and if there were a way to rewire them they would be perfectly normal. But there is no way to rewire them and they are stuck living in this home, their bodies, with all the broken wires, hoping and praying that no further damage will be done

a good explanation!!

my son was travelling when i got diagnosed, he was away for 2 years

when he came home he asked me what exactly was ms.

i showed him a booklet from the ms society showing the damaged myelin

as an electrician he knew exactly what it meant for me.

its good to have a picture to show people to explain it.

if i have to explain it in my own words i really struggle to use clean language!!!

carole x

pat!

am sat laughing at the screen! i am going to try that today!!!

ellie x

Excellent Pat.Did the pencil have a rubber on the end?

Hi, it`s a good explanation, but I would sell that house and find a new one, which worked properly. cant do that with our bodies, sadly, eh?

luv Pollx

I am newly diagnosed to ms too…thought i was coping ok (well, struggling on anyway)…read your description and it made me cry!!! faulty and defective is exactly how i feel right now. think the cry might have done me good though xxx

Aah Vicky I’m sure you will develop the slightly warped sense of humour that should be handed out with the diagnosis, it really is one of the best weapons ito have at hand!

Warped sense of humour is right when you get diagnosed. I think it comes with the territory. It’s the best way to cope with something like ms, and as you say Bouncy, it is the best weapon you can have.

it’s only been 5 days so i guess there is time for “warpage” to seep in :slight_smile: just need a little more sleep! xxx

5 days isn’t so long really. I guess the best way to look at it is that with or without a name to it, you still have to deal with the symptoms that life throws at you. You can either let it grind you down or fight as best you can. Personally, I would rather fight on. I am not going to let some illness dictate my life to me, when there is very little I can do to stop it. Yes I have days when I feel absolutely lousy. Some days when I can’t walk, or my muscles feel so heavy that it is as much as I can do to lift them up, but if I give in to it, then it’s won and that is one things I won’t let happen.

I remember when I went to see about the Optic Neuritis. The doctor was very nice, and went through everything with me, then said, at the time, they didn’t know if my sight would improve or if I would be left with impaired vision in my one eye. At first I thought “oh great, that’s all I need” but as I said at the time, “ok, if I lose the vision in my one eye, at least I have another one to fall back on!”

Like everything I guess it takes time to come to terms with a diagnosis. To some it feels like you have hit a brick wall, and can’t see how to get over it; but there will come a point when you stop and think and the fighter in you comes out. With some it comes sooner rather than later. Others it just takes a little time.

To all of us out there that have MS to deal with, at least there is one thing we can be absolutely certain of, and that is that we are not alone. There are plenty of us out there who we can talk to and have a good old rant about how life is going. That’s why sites and forums like this are so great.

Ok, getting off my soapbox now.

lts 30yrs now since l first ‘succumbed’ to ms - And l can remember the first time l looked at my left leg and realised that l could not move it at all. lt was like looking at someone else’s leg. l could not move my right arm up and down to clean my teeth - and when l tried to put some cream on my face l ended up slapping my face with it as l had no control of it. l could not feel my feet touch the floor - and my speech sounded’slurred’ as if l was drunk. lt was frightening - as l was 3months pregnant at the time.

l still have no use in left leg - bladder and bowel problems - but a lot of the other symptoms did improve - and that was after l had my amalgum fillings removed. My speech has been fine since and control of arms/hands. My ms has been SPMS from the start - so no remissions.

We are all so different in how our ms has developed - which is why it is so difficult to ‘describe’ to anyone what it is like.

F.

Hi Madhatter,

If you google MS and the spoon thiery, it can help others understand it.

I dont let any of my carers near me till they have read it.

But if you see there eyes cloud over,it has been a waste of time.

Hope you find a way to overcome it.

Take Care.

Chris.

Thanks, I’ll look at that Chris.

What got me the other day was when we had someone come round just for a visit. We were talking and they asked me what MS was like, what the symptoms were like. When I told her she looked at me with a blank face and said, yes but we all get things like that from time to time. She just didn’t grasp the concept of what it was like to live with something like this on a daily basis. Needless to say I gave up trying to make her understand.

There are just some people in this world who would not understand MS no matter how hard you explain it. Still, no point in letting those sort of people drag you down. Easier just to brush yourself off and get on with it.

Thanks again

How true … When I did my first Cake Break at work I printed off a list of symptoms and pinned it on the notice board for all of MS Awareness Week. By the end of the week, my immediate (and unsympathetic) colleagues had still not shown any interest in the list so I took it down and circulated it round the team with a note on it that said that I had experienced all those symptoms except 3 to some degree. The last one to read it handed it back without a word. I had hoped it might prompt some discussion about how MS affected me emotionally and physically but they were not interested. All they cared about was that whenever I was off ill, or had to leave early, they had to cover for me and I had outbursts of frustration and anger when they didn’t empathise with my pain and fatigue. They thought I was being moody for no reason but when I tried to show them the reason they still weren’t interested. I now work in an office on my own which is absolute bliss

Tracey