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family wedding

went to my cousin’s wedding yesterday, since some of my cousins havent seen me for a while they where curious about my MS. I started telling them things basic stuff not to go into great detail, but looking at their faces could see that if I did tell them the total truth they would not be able to cope. Tried to change the subject but it showed me that we are stronger than we think. Irronically as the night progressed an old uncle also asked how I was doing,fine says I , his answer thought you would be in a wheelchair my now, it just shows you how people dont know about MS , saying that I am totally knackered and haved to go back to bed twice today already husband away golfing and i am so jealous

Well, Im glad you managed to enjoy the wedding......you probably expected to need today in bed, eh? Thats the norm for us lot, eh?

But yeh, the general public have way wrong perceptions and ideas about MS.

I have had things said to me like;

Oh a friend of mine has MS and she isnt anything as bad as you (in the days when it was thought I had MS)

or

A work colleague has it. if he feels funny, he takes a pill and is fine.

or

MS is terminal, isn`t it, you poor thing!

or

all MS sufferers have breaks from it now and then eh

or

it can go away completely, can`t it?

Ah the general public, bless `em!

luv Pollx

Or to add to poll’s comments I’ve had - Oh it’ll be alright when you start your medication then you’ll be fine Or - so the medication will cure it Or - how long do you have until you end up in a wheelchair Or - you don’t look sick Or - the most recent one was- oh so you’re going to end up like that guy from 24hours in a&e People’s understanding of ms is completely out there and I really think that ms is only portrayed in the extreme cases and not the every day life for someone. It sucks that now you’re knackered (such is life with the MonSter) but at least the wedding was good :slight_smile:

Karina, We have to enjoy the good times as much as poss…then rest up to recover.

Re your comment about that bloke with ms on a&e…his relative said it was caused by a bang on the head. Twaddle!

My sis who knows me well commented on it, as if she believed it. I said it was balderdash.

Now I hope someone more knowledgable doesn`t go and tell me it can be caused by a wallop…

pollxx

Too right poll I enjoy my good days and then my bad days don’t seem as bad if that makes sense! I used to work for Bupa for many years and so dealt with doctors, neurologists etc (this was before I had any signs of ms) and one of the neurologists did have a case of a woman who was hit in the head and developed ms and they put it down to that. Apparently it was something to do with the head injury causing rupturing to the myelin surrounding tissue and the myelin sheath became damaged as a result. I think that she had a bleed to part of the brain that caused it all. This was the only one cause that I heard about and then when I watched 24hours in a&e and they said that it had been caused by a bang to the head I was more inclined to think that maybe it can happen although I think statistically it must be incredibly rare!

I do love the - You don’t look sick!! - comment!

I need a badge that says - I not drunk, I have MS cause, mky legs are a bit dodgy at the minute and the other day I had to pop into Asda first thing in the morning to get a bottle of wine as a going away present. Unfortunately I slept in and had to rush out, so there I was, weaving about in the aisles in Asda at 9:15 am with a large bottle of wine in my hand. It did not look good, thats all I’m saying!!

I’m glad you enjoyed your wedding and don’t be jealous about the hubby. You should get yourself comfy with a cup of tea and some biscuits and a good trashy romance novel and have a selfish afternoon. (the calories don’t count in biscuits when you read a trashy romance novel!!)

JBK xxx

Oh, please don’t get me started on the remarks! I’ve had most of those Poll’s had, and several from a supposedly “best” friend (now relegated to Christmas-card-only type of friend).

Yes, all the usual classics like: “Oh, but you don’t look ill!” The tales of the neighbour, who just takes her injections, and now she’s: “absolutely fine” (She must be, as she was spotted putting her children in the car for school - couldn’t possibly be ill AND still do that, could she?) Also: “Isn’t it lucky you’re unaffected?”, which I suppose means: “can still walk” - never mind the constant fatigue and pain, the umpteen pills just to leave the house, the ever-lurking fear that something might not work tomorrow that was fine today… I ask you, how could even the mildest case be “unaffected”, just by the psychological burden, let alone the other stuff?

And finally I’ve had (from a neighbour): “Oh well, you’ve gotta die of something!” (Because it’s always terminal, isn’t it? NOT!!!)

Tina

x

Tina,

I would like to die in bed from exhaustion brough on by the 19 yr old toy boy beside me and his demands for me to have multiple orgasms. If I have the choice!

JellyBellyKelly xx

To the original poster - I’m glad you enjoyed the wedding even if you did have to put up with ignorant comments. Hope you are still pampering yourself today. I always plan big days out in advance with a day of wallowing and treats for at least the next day so I can recover.

My worst comment has to be from an ex-neighbour (no, I didn’t kill her, although I was tempted - I moved house instead) - “It’s all in here, isn’t it?” whilst tapping the side of her head! My reply: “I’m not mentally ill!”.

Then, at my mum’s funeral, an elderly uncle thought it a good idea to tell me all about a lady he knew who had MS, she was in a mobility scooter for a while but was now so bad she couldn’t do anything for herself and was even tube fed. Then he asked if he was upsetting me. “Ermm no, I was already upset as I’ve just been to my mum’s funeral but you’re certainly not helping!!”

Why can’t people just keep quiet if they have no words of comfort or support?!

Tracey x

Hear hear Tracey!! Thing that get’s me more than anything is when they say “oh but you look so well” If only they knew :frowning: Sue x

thanks for the comments , you do have to laugh, Saying that I told my aunt about the uncle comment and she looked shocked and shock her head as if not another stupid comment, also sis phoned later on in the day asked how was i bearing up told her, she said yes she had spoken to her friend and said that i had done well but she will pay for it, but then she does works in the care industry and understands

Worst so far…and I’m sure Im sure I’ve got many greatens to come is 'dont worry I will wheel you down the aisle on your wedding day in a wheelchair when u do end up in one -I only diagonised a few weeks… this went down a storm…idiot!

do hope I can laugh at the stupid comments made to us by the clueless public some days…u guys are amazing and seem to take it in an lovely light hearted manner… do hope I can someday cause right now I would want to smack them(that prob not not help with the ‘it’s all in your head’ comment…

Xxx

Worst so far…and I’m sure Im sure I’ve got many greatens to come is 'dont worry I will wheel you down the aisle on your wedding day in a wheelchair when u do end up in one -I only diagonised a few weeks… this went down a storm…idiot!

do hope I can laugh at the stupid comments made to us by the clueless public some days…u guys are amazing and seem to take it in an lovely light hearted manner… do hope I can someday cause right now I would want to smack them(that prob not not help with the ‘it’s all in your head’ comment…

Xxx