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What have you done to yourself?

I’ve just been diagnosed with primary progressive (a month ago). After a year or so of walking close to walls for support/ hanging on to my husband when available and hanging on to shopping trolleys for dear life, I have just started to use a walking stick. What I am struggling with is people I come into contact with seeing the stick and asking what I’ve done to myself. “Oh, long story” doesn’t seem to satisfy it and whilst I have told close family, friends and colleagues I really don’t want to have to “out” myself to everyone and then have to deal with their bad feeling etc etc, I am sure you know how it goes. I’m not comfortable saying “none of your business” to professional contacts, so my question is, does anyone have suggestions for how to manage this situation?

When I was at your stage anyone who asked I told them the some would say o it’ll just be a virus although close neighbours think I have a drink problem because I fall now and then haven’t had a drink in the last 20 years. You will find your own way to ďeal with people .

Morning Max’s mum, my poor walking, stick, now scooter use was progressive and unavoidable. It was all about me realising it was never going to get better, and I just had to be honest with people. Often people don’t ask, but if they did I was honest, and most people are quite understanding. Dealing with people is all in your head, I don’t mean it’s made up, I think you have to do right by you, but if it’s not going away I felt that honesty was the best policy, for my own sanity. Kids are often more direct then kids…why do you use that scooter? Because my legs don’t work properly. Ok. Take care

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Kids, kids mean grown ups…

slug do you find that after replying on the brain fog thread, you carry the insanity with you (question). lucky it was only a typo! carole x ps my question mark key doesn’t work

As supporters we need to take care of ourselves! What did you do to ensure your own happiness today?

depending how you are actually feeling on the day when someone asks what`s wrong, you could say any of the following;

oh, its MS.......most folk will have heard of it and just say oh` and make a quick getaway…or

oh its MS....then youll get the oh my second cousins father in laws great uncle had it...but looked so well and didnt see to suffer..

oh its MS......oh no, how long have you got?` ffs!!!

Just saying, oh its nothing` will get a lot of folk off your back!

pollsx

I told everybody as quick as possible once I decided to do it, damage limitation really, I wanted the questions and sad faces to only last a short while. Now a year or more on, I get smiles as I know where I live people have got used to me with the stick and getting stuck in doorways. My line was ‘Oh, I’ve got M.S., oh well you have to have something’. Or for the nosier ones ‘Are you ok Pam’, reply ‘Well I’m still here’.

I think it is a bit like a bereavement, they have to get used to seeing you a bit differently, get over it, not really sure what to say, then acceptance and hopefully a bit more help if they see you shopping or out and about.

For the ones who persisted and not for long with those pathetic looks and ‘Are you ok’ moans, I would reply ‘As long as they’re not sticking a pipe up my bum, I’m fine’. They don’t ask me anymore ha ha.

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hiya

depends who is asking and why you think they want to know!

i find ‘its contagious if you are within 6ft of me’ usually brings questions to an abrupt end!

ellie

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I think people at work are getting used to seeing me carrying my stick… I just shrug it off with some comment like “You know I’ve got MS, don’t you? Well, occasionally my legs decide they’re on strike and aren’t going to play any more…”

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Bless you

I was diagnosed in March amd I’ve not told everyone that I know, just closer friends and family. Though my balance is bad, I do a good job of hiding it at the minute. You need to feel that you want people to know if you’re going to have a good explanation that you’re confident with. I know when my day of a stick comes, I’ll be the same as you. Amd I’ll probably say I have a condition that effects my balance. If they care enough, they’ll show concern and ask more about it. If they don’t- then it’s none of their business!

I do hope that you find something that you’re comfortable with repeating over and over. Then once people know- they won’t have to ask again x

I’ve started using a walking stick much more often recently and when I get the ‘oh dear, what have you done to yourself’ question, I find that a quick ‘I have MS’ or 'I have multiple sclerosis) - as there are still many people who get MS mixed up with ME - does the trick. I don’t care who knows! x

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I told everyone when I first had my sticks, even now it feels weird but when people asked I went for a damage-limitation exercise and told everyone straight out, ‘Oh M.S. and some other stuff, most days I can’t even get my socks on’ in a cheery manner! Yes they looked sad, yes some people/friends I never saw again, but hey ho, I had about three weeks of telling everyone in shops, library, doctors, neighbours, binmen, the chaps down the tip. It got it out of the way and made it very easy after that when I got stuck in doors in shops or dropped things, everyone everywhere new I was ‘a bit of a liability’ carrying things so many helped and opened doors before I got there that sort of thing.

If people persisted in asking, those who I didn’t really want to talk to or didn’t qualify for a detailed answer I would say ‘Oh I’m on my arse most days, any help offered with chores is gratefully received’. That got rid of them. Or start talking about trees in the garden that you can’t get rid of or the tat that is upsetting you cause you can’t get down the tip anymore. I’ve dragged random strangers off the straight since then, ‘Hello, I know I don’t know you but could you just attach my hose to the tap please’ ha ha. One man saw me attempting to do something with a spade in the garden which was pathetic because I couldn’t life or co-ordinate, up he marched said hello and dug the thing up for me.

The strange thing that has helped me most is wearing a white finger/wrist support which sticks out like a sore thumb. Every man and his dog asks what I’ve done to my wrist even if I’ve never seen them before. Then I say, ‘Oh I have M.S.and some other stuff’. Usually getting nice replies. I think it is the visual of the wrist, it is easy for lots of people of all ages to see and be concerned about.

I have other replies for people I know which I couldn’t type on here, depending also on what I have on i.e. sticks, back strap, wrist support, ankle support, bobble hat (I get a really cold head), I tell you it is not romantic! Smelling of healing oils, wrapped up like a mummy, pilled up oh dear. Oh well, I always giggle at Ozzy Osbourne’s comment when things all went wrong, ‘Oh well, could be worse, could be Sting’. (Not that I’ve got anything about Sting). I try to think something like that when people ask, or I smile professionaly and think bad things grrrrrr. I say, get it out of the way. For me now my walking is worse it has been good as even though a lot of days I look well, I still need that stick and still have the ability to fall over fresh air at any time.

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Hebe,

If I tried your, “… could you just attach my hose …” line to random strangers, round here I probable wouldn’t have the freedom I enjoy today.

Great writing though. Thank you.

Anthony

Hi Everyone

I was diagnosed in April and at first felt like I had a dirty secret, then realised this was daft and started trying to tell friends and colleagues. I must admit it went badly at first - got a very odd reaction from two people I thought were sensible. Bit once I regrouped and had another go its been fine, just a bit awkward sometimes. I use a stick sometimes and if anyone asks I do just say ’ oh its MS - my legs don’t want to work sometimes’ and that seems to do it. Mainly I think people are trying to be nice and I guess you can’t really ignore a stick!

Hope you find the best way for you…

Julie

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My MS came on very slowly. I only told a small number of close friends and close family members. I had not long given up playing football, so when people asked about me limping, my reply was “an old football injury has flared up”. After a while and with the onset of other symptoms, I then told people, when quizzed, that I had MS. Most people didn’t know what to say next other than “oh, that’s not good” or words to that effect .

derek

Whats the point of fibbing? who you hiding from, yourself? Nah, depending on who and what they ask - I have MS or My legs don’t work.

Comes a point when need for a seat outweighs politeness. I became shouty woman on train: “Excuse me, I have MS, does your laptop need a seat??” (when you know they only paid for one seat anyhoo). Now i travel with wheelchair, so the added advantage that at least I HAVE a seat!!!

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I tried to keep it quiet at first by just saying I had a bad back but living in a village somehow it got about. I do draw the line though and don’t need people to remind me of what I’ve got. I nipped it in the bud early when people said ‘Oh you’re walking badly today’ my answer to that was I know when I’m walking badly because it normally results in me head butting something. So people just treat me as normal but every now and again there is a surreptitiously raised elbow for me to slip my arm in. I do use a little scooter when the weather permits, it looks like a Harley and is talked about much more than my legs are now, he’s called Derek (sorry Derek on the above post no offence meant). Much easier to get it over and done with but everyone is different.

I always wonder what to say to random people who ask. Only told my friends and colleagues about 10 years after diagnosis and symptoms were visible - walking got worse.

Do you tell people , then as someone said, there is an awkward silence?

Not sure I could make a joke about it either. I sometimes just say I have problems with my legs.

My chair is called Stan, because I can’t stand! Need a name for my scooter too. Rolly , because it does?

Jen

I hope you’re scooter moves quicker and a lot more smoothly than I do!

derek