Jump to content
The MS PEOPLE UK Forum
Support, help, advice and information for Multiple Sclerosis. Ask questions and share experiences with people affected by MS.
Larisa

Describing MS to people who dont have MS

10 posts in this topic Last Reply

Recommended Posts

Larisa

I read this recently and thought it describes MS in a really good way. 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 :xmasstocking:

  • Like 11

Share this post


Link to post
Procrastinating
Stumbler

A good analogy.

 

So, can anyone recommend a good electrician for me? :lol:

 

:moonieman:

  • Like 1

John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

Share this post


Link to post
lee P

Saw this on Facebook and thought it was excellent.

Share this post


Link to post
Lurking
PaulX

I could do with a plumber as well. lol

  • Like 1

We're just two lost souls swimming in a fish bowl, year after year,

Running over the same old ground.

What have we found?

The same old fears.

Share this post


Link to post
Sluggish
Marina

I'll move this to our "Survivor's Guide to MS" as it's worthy of it and fits in well :flowerface:

  • Like 1

Marina

(belated DX in June '05, SPMS)

Share this post


Link to post
Crafty Cow

My sister in law to be is polish, and having never even heard of MS and having a slight language barrier this analogy would have been great. Having taken ages to try and explain what happens with MS I felt like hanging myself, especially with the reply I got...".ooooh you will get better its probably just a virus or something"...to which I replied under duress...yeahhhh probably. ;-)


Follow me, you can follow me....and I, I will not desert you..............

Share this post


Link to post
Nick

There is always an Answer, see here: http://oscos2.bmc-ics.com/mss2/images/productpreviews/What%20is%20MS%20Polish%201208%20-%20web.pdf

 

this is an MS Society booklet 'What is MS' in Polish.

 

If you go here: http://oscos2.bmc-ics.com/mss2/public/public_stock.php?searchid=dmlld2FsbA==

you can download many other booklets in different languages about MS

 

Nick


Edited by Nick
  • Like 1

Just another Warrior...........

Share this post


Link to post
Crafty Cow

Perfect, thanks Nick, that's great! :-)


Follow me, you can follow me....and I, I will not desert you..............

Share this post


Link to post
Vagrant

This description is outstanding.

 

Thanks

Share this post


Link to post
Tabbycat

I like this very much - especially how good the house looks from the outside!

Share this post


Link to post

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Similar Topics

    • Volunteering Opportunities for people with MS

      Hi there My name is Mark Cruise and I'm the volunteer manager with the MS Trust. 
      I wanted to let you know about a few MS specific volunteer roles that we have available at the moment. We need to hear from people who have a lived experience with MS and want to share their knowledge to help us improve our services
        Voice Volunteer - use your voice to help us develop future services: https://mstrust.org.uk/get-involved/volunteering/voice-volunteer
      Read & Review Volunteer - We need people to read and comment on our information resources and suggest improvements. You might also suggest new topics or ideas for our content team to develop: https://mstrust.org.uk/get-involved/volunteering/read-review-volunteer

      If you are interested in either role, or want to know more about volunteering with us - please do get in touch: volunteer@mstrust.org.uk 

      Mark

      in General Discussion about MS

    • PPMS, 10,000 people in the UK have it and I'm one

      Hi people,    I was diagnosed with Primary Progressive Multiple Sclerosis on the 22nd Feb 2019. My neurologist believes I may have had it from birth. Can you guys with MS and in particular PPMS give me advice please and 'Problems me and my wife are going to experience with our journey with PPMS'

      in General Discussion about MS

    • How do people manage?

      I am newly diagnosed with ms was diagnosed in November. When diagnosed the only symptoms I had were feelings ( numbness, burning, itching, spiders crawling onme ) But now I have tremors :-/ I am really not happy about these at all. They make me rock like one of those mentally ill people from girl interrupted and my hands shake dreadfully. Some days worse than others but it nearly always happens and the more I try to stop it the worse it gets.   How do people manage when their symptoms become more visual? I'm extremely vain and can't stand the thought of people noticing there is something clearly wrong. :-( I literally do nothing to draw attention to myself ever and can't stand people noticing me at the best of times. I'm not shy I'm very confident just extremely vain. Don't get me wrong I don't for a second think I'm anything special and certainly don't have my head up my own arse it's just I like to look normal and am really struggling with the thought that I would appear anything other than that. People notice I'm dropping things and my hands shake dreadfully, especially lighting a cigarette or trying to text someone.   The whole thing that bothers me is having the disabled ticket. I don't want people to know I don't work properly and in this short space of time it's becoming a not so much invisible ilness for me and it's literally making me turn grey by the second!   What do you's do? How do you cope with the not so invisible parts of this?   Sorry for ranting and appearing to be completely stuck up and like one of those barbie dolls that flick their hair every 2seconds, i swear I'm not I just don't know how else to explain it :-/

      in General Discussion about MS

    • Young people with ms

      Hi I'm new to the forum. I'm wondering if there is anyone of the younger generation out there that has ms. I'm 17 and have had ms for 3 years now and I've never come across with anyone my age and I'd love to be able to talk to someone that can relate

      in General Discussion about MS

    • New to MS People UK

      I have just found this forum. It seems great. I have MS and was diagnosed in 2005. At the moment it's really starting to get me down. By the way where is the spell checker. Confidence is something I lost long ago.

      in General Discussion about MS

About Us

Founded in 2004, MS People UK is a community website and discussion forum by and for people with Multiple Sclerosis as well as for friends, families, supporters and those interested in this disabling condition.

If you’re newly diagnosed or want to ask about possible first symptoms, or if you’ve had Relapse Remit, Secondary or Primary Progressive MS for some time, a welcoming group of fellow MS sufferers is here to chat with you about MS symptoms, diagnosis and treatments.

The atmosphere is friendly whilst being compassionate, supportive and caring. Members also post about a variety of subjects not related to MS, as well as share jokes, talk about their hobbies, have fun, and more.


The MS People Forum is not responsible for advice or information supplied by members. We suggest you seek medical advice before trying anything.
×