About Me

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Surrey, BC, Canada
DX in '01 with MS; in Jan 02, Told it was PPMS "the good kind" whatever that means.... The progression of my MS has been a long and arduous journey, the last 5 years specifically. I went from complete independance (I drove, went to the mall, movies etc) to the point I am at now. I haven't been to a grocery store in about 3 years (I love grocery shopping), Ikea it has been about 5 years, Costco, at least 5 years - SUCKS!! My DL expired last birthday, and I didn't renew right away for two reasons - I didn't want to drive because of my MS (being responsible) and 2, I couldn't afford the renewal fee (cut my wage by $4 per hour due to the economy, which led to apathy on my part) Married since 1994 to my AMAZING husband, Dan; no kids but we have the freedom to travel - and travel we do!

Tuesday, September 14, 2010

How to describe MS to people who don't have MS

A new way of explaining fatigue and things with MS by Andrea Pittman Casti/Deana Grenier  August 14, 2010

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 and exterminator and he gets rid of the mice and then you have the electrician rewire you 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 you brain to the various parts of your body and the mouse is your immune system.There are drugs that can help stop the immune system form attaching 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.

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