I had a friend ask me what it what like at the weekend, i actually found myself struggling to explain to him exactly what it was like, and the description i gave to be honest didnt really cover just how much it can afffect me. Anyone else struggle to describe it? I was dx 2 years ago, but still to this day cant describe what it is like haha
Are you aware of the spoon theory, if not i will send you the link
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
I like this one…, doesn’t explain symptoms but sort of shows the random nature of MS.
wow, Tay i found that a very powerful way to put it, thank you very much for that
and Trish no i havent heard of the spoon theory, would very much like to read about that.
wow, Tay i found that to be a very powerful way of putting it, thank you for that
And Trish no i havent heard of the spoon theory, i would very much like to read about that
What a lovely explanation, have tried using the wiring example myself when telling my daughter about it but this is so easy, logical and not quite as scary. Well done whoever wrote it.
What a good way to explain ms. i will use this the next time im asked.Put this together with the spoon theory also would help. i always find it hard to explain.
Thanks Tay, that’s a brill way of explaining it!!!
Can’t take credit for it… I read it somewhere and thought it a good way of explaining so copied it into a file.