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How do you 'explain' 'Multiple Sclerosis' to anyone who asks you?

I've had Multiple Sclerosis for over '13 years' and even 'I'm not sure?' - because it keeps on changing - even my wife and my eight year old daughter and 'people that know me' think that 'I'm making things up - but I'm not! People seem satisfied 'to first of all be polite and ask - then make up their own minds!'

I'm lost (and ultimately) - 'don't really give a damn!'

Marcus. (what's really annoying is that my 'bloody initials' are M.S. !) 

Why on earth would your wife or daughter think you're making things up? I can understand a stranger who doesn't know you, or doesn't know anything about MS, finding it hard to understand how conditions can fluctuate.

But surely, this must be old ground. now, at home, if you've had MS for 13 years? For your daughter, in particular, who's never known anything different, I'm sure she must accept it as normal.  In childhood, we tend to accept as normal any characteristics our parents have, because it IS normal - for us!  So I'm not sure why you think your daughter, at just eight, would be cynical enough to think you're making it all up.  Is this something your wife is telling her?  Because I don't know where else she would be getting it from.

From what you've said before, your wife is an educated woman.  I can't understand why she, either, would think you're "making it up".  I'm sure you must have pointed her to literature about the strange and unpredictable symptoms of MS - or that she's more than capable of looking them up herself!  So if she knows these things can and do happen, why would she suspect them of being "made up", in your case?  She doesn't sound like someone who would struggle to understand the concept.

Obviously, it's never going to be possible for a "normy" to completely understand symptoms they've never had.  But not fully understanding, because it doesn't happen to them, isn't quite the same as "not believing".

Tina

I don't explain it. People might ask how you are but out of politeness, they don't want chapter and verse. And how boring for them to get a complicated explanation of a neurological condition, I can feel their eyes glazing over.....

No, I tell them as little as possible. I'd rather talk about something interesting.

 

Val

 

I am with Val on this one.

I have learned to 'judge' if the enquiry is genuine and they really want to know or if they are nosey/just passing time.

I tend not to go into any great detail at all. In fact,on one occassion I said it was contagious and best if they sat the other side of the room. I know,that was bad of me but it gave me a peaceful eveing!!!

No-one that knows me would ever suggest that I was making it up! I am speechless at that comment Marcus!

Ellie x

Hi Marcus.

I have given up trying to explain (MS), because anyone that doesn’t have it, will never be able to understand, even if they really want to.

I get a strange sensation in my left leg, its not a pain as such, but it is uncomfortable, and I have never been able to find the correct words to describe it, so only another person with (MS), would know what I was trying to explain, and then not necessarily, because as we know, we are all different. So anyone that is not in our exclusive club, will never be able understand, this bl***y thing called (MS).  confused

 

So we must excuse them.

Take care.

Chris R.

I. El. (Eng). (Rtd).

I know its going to be a bad day when I get out of bed and miss the floor.

WOW!!!!!!!!!!!!!!!!!!!!!!!!!

Chris-so we must excuse them?!

Brilliant! I agree! We must excuse their ignorance-afterall EVERY human cant/will never understand/encounter EVERY illness/problem.

So save ourselves getting frustrated/unhappy/angry that they dont understand us and just excuse them.

Ellie x

PS In fact, I will go as far as to say thats the best comment I have read on here in a while thumbsup

Thanks very much for your replies. I hope to respond to each and every one - later. My daughter comes home now (from school) and I have to look after her. I will respond.

Thanks (I'm impressed!)

Marcus.

Very difficult to describe - told someone my legs feel as though they are on an escalator - constantly buzzing - or ants crawling up my legs to m

my waist.  Someone on this site said their legs felt like they were sunburnt - I think that sums mine up too.

Good luck.

 

Jen x

Hi, well I reckon I have 2 versions of the answer available, depending on if I think the enquirer has the time and the patience to listen.

1. I tell them about spastin invading my tubules and hence my railways don`t work. (This is how a research doctor described HSP)

2. Me wiring`s all to pot!

Similar sort of answers re MS.

Cheers folks!

luv Pollx

Hi,

My mother had MS, but it wasn't until I experienced it myself that I understood what she was going through - her MS was a lot different from mine, so I don't suppose that any of us fully understand what another is experiencing. Now, that is coming from somebody who has seen MS from both sides - how does anyone expect to be able to explain it to somebody who doesn't have a clue?  If asked (I use a walking stick, so it's obvious that there's something wrong), I just say I have multiple sclerosis (never MS, they always mishear that one) - if pressed, I say that basically my immune system is attacking my nervous system and it affects me in different ways.  Usually that's enough to stop them asking - I will go into further detail if they're interested though.

Marcus, I'm sure that your wife and daughter know you better than to think that you would be making things up.  I think I know where you're coming from, sometimes things are very difficult to put into words, and the explanations that you come up with sound ludicrous when voiced - they were fine in your head!

Luisa x

I adapted this and printed it, feel free to do the same:

 

Living with MS

Having MS means many things change and a lot of them are invisible. Unlike cancer or being hurt in an accident there is usually nothing to see, no outward sign to prove it is there. But it certainly is.

MS is a degenerative disorder of the central nervous system. It isn’t in the head nor is it contagious.

Multiple Sclerosis will not kill me. Nobody ever died directly from MS.

Having MS doesn’t make me a different person to who I was before. I still want to do the best I can in my life: for me, my children, my family, my friends, my work. I still care and worry about work and home life as much as anyone else does. Most importantly I still want fun. I still want to do the things I loved before I was diagnosed.

Unpredictability

Multiple Sclerosis is unpredictable. One day I may be able to do anything, while the next I may have trouble getting out of bed. I can’t control how it feels or how often I feel good or how often I feel terrible.

Some days I spend in extreme exhaustion. Some days I can sleep for fourteen hours and still be tired. Some days I will be bouncy and energetic.

Please understand that sometimes being able to stand for ten minutes doesn’t mean I can stand for twenty. Just because I managed to stand for thirty minutes yesterday doesn’t mean I will be able to do the same today.

If I am functioning normally I am having a good day. I can have good days, weeks or even months. But a good morning can suddenly turn into a bad afternoon. There may be no warning; I may just suddenly feel terrible.

I can’t warn you when this is going to happen because there isn’t any way for me to know. If I seem touchy or sensitive at times it’s probably because I am. It’s not how I try to be. As a matter of fact I try very hard to be normal.

Symptoms

MS is a condition with lots of different kinds of neurological symptoms, some of which I experience most of the time to varying degrees.

I am always tired but sometimes I will be extremely fatigued. MS fatigue is like a wall you cannot get over; you cannot fight it, you just have to sleep. Cognitively, I may not be able to remember things and I may not find the right words I want. Physically, I may stumble about without co-ordination. I may drop things. I might be dizzy. I may feel weak. I may feel as if I am wearing boots made of heavy cement. I may have pins and needles. I always have a strange icy/waxy feeling in my hands and head and numbness in parts of my body (for me my feet, hands and bladder are most affected by numbness). I may feel as if there are ants crawling on me. I may have burning patches of skin. I may feel pain anywhere in my body and in my head. My body buzzes as if there is a low electrical current running through it. My muscles are usually twitching and they may tighten and cramp. I may jerk and spasm. I may wet myself.

What’s going on? 

In Multiple Sclerosis, myelin, which is the covering that protects your nerves, deteriorates. Think about an electrical wire which has plastic covering on it. If the covering is removed the wire gets a short in it. This is the case with MS. Your nerves are a wire, myelin is the protective covering.

With Relapse Remitting MS the main damage occurs during short, intense periods of 4-6 weeks typically. This period is called a relapse and causes severe symptoms which may require steroid treatment and hospitalisation. The myelin can regenerate but during the time it has deteriorated and the nerve is exposed, damage is done to the nerve. This nerve damage is not reversible, thus causing the numbness, pain, tingling and other feelings which persist during the remittance stage. During each relapse the nerve damage increases adding to what has gone before and so, over time, symptoms will gradually get worse.

A ‘relapse’ will knock me for six and you may not see me for several weeks until I recover and resume the remittance stage. During each relapse further damage is done and recovery less complete.

Anything you can do?

In so many ways I may depend on you. I may need you to check on me. I might need you to help me do things every now and then. It is very hard for me to accept help, so sometimes you may just have to make that decision yourself and don’t give me the option. Because I feel bad at times I am always pushing myself, and sometimes I push myself too hard. When I do this I pay the price. Emotionally and physically I pay the price for overdoing it but sometimes I have to. My limitations, like my symptoms are invisible, but they are there.

But please know I am not lazy, I promise you I am never ever lazy.

Be understanding: understand the difference between ‘happy’ and ‘healthy’. When you have the flu you probably feel miserable with it, but I have a condition that doesn’t leave. I can’t be miserable all the time. In fact I work hard at not being miserable. Just because I sound good doesn’t mean I feel good. I make myself be happy. That’s all. It doesn’t mean I’m not in pain or extremely tired. It doesn’t mean I am getting better or any of those things. I cannot get better. I can only get worse. That is nothing to be joyful about.

Don’t suggest ways I can help myself: I have doctors and an MS nurse to guide me on those things. There is no magical solution, if there was every MS sufferer would know about it.

Know: I have cried. I have cried my heart out. In the privacy of my home I have broken down many times. I am not used to this. It is totally new to me. I hate it.

There is no cure for Multiple Sclerosis and it won’t go away. It wreaks havoc on the body and mind. It is exhausting and I am doing my best to cope with this. I will live my life to the best of my ability. But it is a new life, an unknown and uncertain life, one I am still adjusting to. I grieve for the future I hoped for. You are my link to normalcy since I will never be normal again until a cure is found. I ask you to bear with me and accept me as I am.

(Contents adapted and personalised from an available piece of writing by DC)

 

 

Dear All,

Again, thanks for your responses. Unfortunately, at 10.15 p.m. I'm struggling with one of the symptoms - 'tiredness'. On 'quickly' reading the replies, I'm 'learning' things about MS and I've got it myself!!

I will reply to each and every one but I'm off to 'sleep' now - I'm tired.

Sleep well (I'm not guaranteed to, but I'm not working now - sounds like 'happy days' but it's got it's 'uncomfortable' side as well.)

Marcus.

This was not done by me but have a read

Description of MS if somebody asks

 

When we say we can't do something because we don't feel well, put yourself in our shoes by using the examples of our symptoms below...

- Painful Heavy Legs: Apply Tightly 20 LB ankle weights and 15 LB thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down - how ya' feeling now?

- Painful Feet: Put equal or unequal amounts of small pebbles in each shoe then take a walk, if we are mad at you we would prefer needles to pebbles.

- Loss of Feeling in Hands and/or Arms: Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful stab yourself in the arm.

- Loss of Feeling in Feet and/or Legs: Ask a doc for a shot of novocaine in both of your legs and then try and stand up and walk without looking like the town drunk. Hopefully you won't fall down.

- TN (Trigeminal Neuralgia): Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw preferably daily.

- Uncontrollable Itching: Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments wear them for an entire day.

- Tingling: Stick your finger in an electrical socket - preferably wet.

- Tight Banded Feeling: Put 12 inch wide belt around you and make is as tight as you can and leave it there for the entire day. How ya' breathing?

- Shots: Fill one of our spare needles with saline solution, saline won't hurt you, we would love something worse but don't want to end up in jail. Give yourself a shot everytime we do our shot.

- Side Effects From the Shot: Bang you head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage tightly then finally treat yourself to some spoiled food or drink.

- Trouble Lifting Arms: Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house.

- Spasticity: Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves then go dancing.

- Poor Hearing/Buzzing in Ears: Put a bee in each ear and then put a plug in each one...Bzzzzzzzzzzzz zzzzzz

- Balance and Walking Problems: Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now get up and see what happens.

- Urgently Needing to Pee: We put a .5 liter remote controlled water bag and drip tube in your pants, we point out 2 restrooms in a crowded mall, then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you.

- Bizarre and Inexplicable Sensations: Place tiny spiders on your legs or arms and allow them to periodically crawl around throughout the day, heck all day would be good too.

- Pins and Needles: Stab yourself repeatedly with needles all over your body or better yet....Get a very large tattoo in your most sensative area.

- Dizziness (Vertigo): Get on a gently rocking boat all day and all night and take several walks around the deck with your eyes closed.

- Fatigue: Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel. Please do not compare MS fatigue to you being tired from only a few hours of sleep - it's not the same at all.

- Cognitive Function (Brain Fog): Take a liberal dose of sleeping pills but stay awake. Try and function properly and think clearly. To make it even more real without killing yourself of course, take the sleeping pills with a small sip of wine.

- Bowel Problems: Take a 4 day dose of an anti-diarrhea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard uncushioned chair and stay there till tears appeared.

- Burning Feeling: Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead...optional of course.

- Intention Tremor: Hook your body to some type of vibrating machine try and move your legs and arms.....hmmm are you feeling a little shaky? You are not allowed to use anything fun for this lesson.

- Buzzing Feeling When Bending Our Heads to Our Chest (L'Hermitte' s): Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in.

- Vision Problems (Optic Neuritis): Smear vaseline on glasses and then wear them to read the newspaper.

- Memory Issues: Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn't get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things.

- Foot Drop: Wear one swim fin and take about a 1/2 mile walk, nothing else needs to be said for this one, you'll get it.

- Depression: Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one or more of the animals and when you come back the next day you come in while they are putting her/him asleep.

- Fear: Dream that you have lost complete feeling in your feet and when you wake up wiggle your feet, just so happens they don't move. Think about this every night wondering whether something on your body won't work the next day when you wake up.

- Swallowing: Try swallowing the hottest chili pepper you can find.

- Heat Intolerance or Feeling Hot When it's Really Not: You are on a nice vacation to Alaska. It's 35° outside and 65° inside. Light a fire for the fireplace and then get into it. Once you have reached about 110° tell me how you feel, even a person
without MS would feel bad, now add all of the above symptoms - welcome to our world.
 

Hi Marcus,

I don't even try as before I get the chance to speak they are already telling me about someone else they know who has it.

So I keep stumb!

Janet x

I don't tell everyone.  But I'm battling with the unpredictable nature of it.  I'm also battling with trying to make my kids understand that mummy is tired everyday.  From the minute I get out of bed to the minute I get into it. 

Everything in my body goes wrong at random momments of the month, except for the bits that are always wrong..... but my hearing is great thanks.

I got a cheeky mouth so I just say Google MS...

If I have to verbaly explain it to the ignorant I say I am NOT on illegal drugs nor alcholic.

I have what appears to be MS,I slur my speach,I live with pain and weakness in my whole body every single day and suffer sever Fatigue.

Oh and by the way that grey angry looking face of mine is an MS face,it may look angry but realy I am smiling.

For those that do not understand or listen I just walk away.Your not alone when it comes to people not beliving you.I had one guy who used to poke me in my arms and legs in my volunteer job even though he knew it caused me pain,he thought it was very funny to see me squirm.

'WOW!' - what a response, thanks, I intended to respond to every-one but 'I suffered' from one of the other complaints of MS - I forgot!

When 'discussing the vagiares' (good word) of MS with my wife, I 'may' believe that it 'could be' a cultural difference? My wife is from Northern Ireland and although she knows what MS is, (her brother, a teacher has MS as well) and she is an Optometrist (and has 'patients' with MS) - she is also a catholic. I was 'brought up' in the protestant faith (I'm not 'religious' now) - I'm also Scottish (and proud of it - I've voted SNP since 18 and I'm 55 now) - my wee daughter (8) is also catholic. Now try 'explaining MS' to them is 'practically impossible'. I have been educated at .fee paying school and university but this MS thing is 'still hard to explain'. She is proud to be 'Working class'. 'As if' it was not hard enough to explain my own experience of MS - I have 'cultural and religious' differences as well! - 'I'M GOING BACK TO BED NOW 'COS I DIDN'T SLEEP WELL LAST NIGHT! AND OUR DAUGHTER WOKE US AT ABOUT 4 O'CLOCK.

Marcus.

Dear Juliet,

I was just about to go and I 'read' your 'large note' and I agree with you, 100%. - Thanks! The only probem (with my wife) is that I am not catholic and she is. I'm (obviously) not 'female' as well - Trying to explain MS is not just difficult - it's impossible! - I'll show her (if I remember) when she comes home - you're female but are you catholic as well? I'm not wanting to bring 'the troubles' over here?

Marcus. x.