Hi All
Hope you’re all ok, just getting back to my normal self. Anyhow my top don’t you hate it when someone says about your MS is;
“You look really well”. (Wrong; I’m just a bit skinny because I’ve lost my appetite, and smiling because I like it when people smile back. In actual fact I don’t feel in the slightest bit ‘well’,haven’t done for years!)
Mine is ‘Oh I get that too’. I sometimes feel like saying ‘Gosh maybe you’ve got MS!!!’ just to shock them.
Also tempted to say, ‘it’s funny how we have so many of the same symptoms, and yet you can walk down the street, go to work, go out in the evenings, get on buses and trains, do your own housework, get in and out of a bath tub etc etc etc etc… and oh yes… get through the day without needing drugs’!!!
But of course I don’t say those things. I just smile and say ‘oh really’.
Pat xx
Yeah, I know what you mean …Iv’e had this… ooh you look so well, comment a few times, i think sometimes the people saying it don’t know what else to say…some genuinely mean it…its amazing what you can do with make up,… i do try because if i’m feeling sad, make up and a big smile is a huge cover up. but one friend just randomly told me she loved my wheelchair …it was at the beginning when i was still very self conscious long before i got Frazer my assistance dog… so i really wasn’t sure what she meant…and i think now she was probably embarrassed and didn’t know what to say, it was the first time she’d seen me in a chair. but i smiled sweetly and thanked her. but actually maybe she did like it, back in the beginning i had teddies and bats and all kinds of beany toys hung on it just to make me feel better.
Michelle x
Mine, like Pats is " oh I get that too!
Makes my blood boil but now thanks to Pat I have a couple more ideas as to what to reply!!
Nina X
It’s when people say and it’s usually folk that are close to you “it’s only a cold” urgh!!!
Mags xx
“Oh, you don’t seem to be ill very often.”
(No, I’m ill all the time!)
“It’s your age.”
(No, I’m disabled!)
“Maybe if you got out more.”
(No, it takes meticulous planning, actually getting to the front door without falling over, making sure I haven’t overdosed on tea, the burning pain when I move my lower limbs and a lifetime of getting out before I was badly affected might just entitle me to going out when I feel like it!)
Best wishes, Steve.
I’ve got a few -
but you look well
they can do so much for you nowadays
they can stop it in its tracks
get well soon (I wish!)
how long have they given you
the good thing is you’ll never be depressed (yes, really!)
is it going to take a long time to get better
you should get new knees, my husband has new knees and he’s fine now (I didn’t realise MS and arthritis were one and the same!)
i think most of these were well meant, but why shouldn’t I look well for goodness sake?
They are ALL so annoying… and Steve reminded me of the worst… ‘You should get out more’!!!
I am seriously tempted to kill the next person to say that!
Pat xx
I am sure that she did think that your teddy-decked wheelchair was cool. Just because something is a “disability aid” doesn’t mean that it has to be boring and institutional! I see a few people round here with seriously “pimped up” scooters which always make me laugh/smile - everything from flags and rude bumper stickers to 1 old mod who has his scooter chromed with lots of Lamretta mirrors like the 1960s face that he obviously was! (Still wears his Parka too).
I use crutches for the majority of the time (use a scooter as well) but I decided that if I had to use them all the time I was not going to have boring grey NHS crutches. I have a selection of crutches now in various colours and designs so I can colour cordinate them with my outfits. I have lost count of the number of people who have come up to me and told me how cool they look and asking where I got them.
As I always tell them “Well, you’ve got to have a bit of style haven’t you?!”
“Oh my goodness what have you done to yourself!”
“Gosh are you still limping - you really need t see someone about that as it will effect your hips if you continue walking like that!”
Moyna x
PS Have not seen you around for a while Clucker - how have you been ?
Haha Moyna that reminds me when I went to see practise nurse for blood test. I came in and sat down and she said ‘What’s the matter with your legs?’
Hmmm… maybe check my notes which are right in front of you on the screen! (I didn’t say that… too much of a coward).
Pat xx
At least it isn’t painful…
(so I don’t need my painkillers then)
You’re looking tired, I know just how you feel
(I don’t think you do!)
“You need to walk more”
really? Thanks for that handy tip…
“you should roll when you know you’re going to fall”
aye cos actionman’s my middle name don’t you know and I always get plenty notice I’m due a fall…
“You shouldn’t sleep as much it’s not good for you”
Bugger ye off…!!!
My pet hates are…
“I wish I could retire early” I wish I hadn’t needed to.
" You look well" my replies are varied and range from a simple “thank you” to “it’s ironic because I feel rubbish”
“You can’t be that bad because you’re never in” that’ll be the two neuro exercise classes, the aquafit and the weekly MS group.
“I wish I could afford the holidays you go on” on the face of it it doesn’t seem to have anything to do with my MS but what they actually mean is “where do you get the money from” at which point I usually tell them “if you didn’t spend a small fortune in the pub or clubs every week you too would be able to afford a holiday”
I always try not to justify anything I do but it’s hard not to sometimes.
Have a good day everyone.
Jan x
I hate it when someone asks “how are you keeping” and my repertoire of responses is limited, depending on the asker and the circumstances to:
Fine thanks
As good as can be expected
A bit crap because …
If you really want to know, I will tell you…
My thoughts when someone says how well I am looking, are usually, “You have no idea” and most of me would never want them to know how it feels, although there are times when I wish they could experience a fraction of the symptoms for a short period, just to make them more creative with their kind comments.
Does this mean that I am wicked?
I think a lot of the time people just don’t know what to say. Or they just don’t mean it…
“Pleased to meet you” Really ? You don’t know me. If you did you’d probably think I’m a twat.
I always start off with ‘How are yer?’. It’s my way of saying hello ! Don’t need total medical history…Though sometimes I get it !!!
So next time you’re asking how are yer Carraboy, I’ll mind & keep the medical history to a minimum then eh?
“There’s a new wonder drug for MS, …it was in all the papers.”
I’ve been told that several times.
By the woman next door have you seen a docter same person are your legs still sore
There, s a lot of it going round
Have they given you antibiotics
By a gp we can’t find anything wrong with you
Hope your all as good as g
Ha ha !!! Sometimes I do care. 
sometimes I don’t. And sometimes it’s as if I haven’t even spoken at all… ssshhhhhh…