Last reply 3 years ago
Accused of playing on my M.S…….

So I was recently told that ‘I sometimes play on my M.S’! Like I use it as an excuse for things I can’t do that well!

It was about when I struggle with cognition issues especially when I am stressed and have to figure something out on the spot, which I find pretty tricky! Is it just me or is it the MS?! So confused!

Has this ever happened to you?

Thanks,

k*s xx

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stumbler
3 years ago

@k*s , I would say that the person who suggested this to you has very little knowledge about MS.

We know there is no cure for MS and we have to manage the symptoms. Unlike ignorance, which is self-inflicted!

Are you able to offer this person one of the MS Trust publications to help them address their condition?

http://www.mstrust.org.uk/shop/product.jsp?prodid=144


ks-2
3 years ago

Thanks @stumbler

Yeah I think you are right, it wasn’t said in a malicious way but ya just uneducated and it is an invisible symptom it’s ‘not there’!!

Thanks again, I will do! 😀 xx


makkymee
3 years ago

Hi @k*s

If only it was an excuse hey but sadly not, this is MS!

Sometimes I feel like I can conquer the world and an hour later I struggle to remember a word or process information.

I know when I’m put on the spot I get stressed and my brain decides to do an emergency stop and so I’ve learnt the art of ‘Looking into something’ or asking for help. Being put on the spot is not a nice feeling when you have invisible cognitive fights.

Maybe ask the person to tie their shoe laces whilst their arms are folded across their chest. This may help them to realise they know they can do something but it’s not always so easy.

Hope this helps and I hope things get better for you

Makky
x


amymellor
3 years ago

i just thought it was me over reacting to very thing but you asked a question i wanted to ask.


brokendancer
3 years ago

I can forget what I’m saying mid-sentence sometimes and other days I’m completely switched on….. and that’s usually when I fall! I actually forget, try to just carry on as normal and don’t realise til mid-fall that my right foot just didn’t budge 😉
There isn’t really anyone who understands what MS is like, unless they have it and even then, we all have our own version. Just ignore that kind of negativity 🙂
Sonia x


tracyd
3 years ago

Sometimes people just need help understanding. I often tell people that the fog makes sometimes very simple appear very complex, and that if they’re lucky they’ll get to see my inadvertent Yoda moment where the words come out in the wrong order or I squish them into hybrid words.
I drove to Solihull on Thursday night to see my brother on his 40th as a surprise, he sat there gobsmacked I’d driven 130 miles after work just to hug him in person …. He came over and I smiled at him and wished him a bappy hirfday 🙂 and once the laughing and happy tears had stopped he just whispered ‘you’ve always been a bit ‘special’ sis – at least now you have a good excuse and it is amusing’ 🙂


graham100
3 years ago

It will happen over and over to all of us, I will say it again. You don’t get it till you’ve got it. People can be insensitive, but not many mean to be horrible. If you really think back, and your really honest, you’ve probably said or thought something like that about someone else,, and didn’t even realise. I know I probably did before I became ill. Now I make everyone feel bad. Lol. Joke. Honest. Lol


northernlass
3 years ago

I had something similar when I told my sister I had started to develop cognitive thought process problems and she dismissed it by saying it was just because of my age…!!!! (I’m only 47) 🙁


loriwho
3 years ago

Hi

I sometimes wish I had an illness that was more visible to others then perhaps they would be more caring and not so careless with some of the comments we receive… Sometimes I want to carry around leaflets to give to people to educate them…. Just because we haven’t got our heads down a toilet or are covered in spots does not mean we are not feeling one hundred percent on some days … Even my hubby and family need to be reminded sometimes … This is probably my fault sometimes as I have a positive attitude to MS and try and do way too much and won’t always admit that I am practically on my knees lol xxxx


graham100
3 years ago

Hi @loriwho. I know what you mean if yours is still invisible that’s good. Mine is obvious with the walker or wheelchair. That I have to use. Think I would rather it was still invisible and listen to the insensitive people??


ks-2
3 years ago

Thank you for all your replies, makes me feel normal! ;-P
Now lets get out there and educate 😀 xxx


cameron
3 years ago

I’ve found that although the majority of people are ignorant about MS, it doesn’t stop them claiming to know a) what it is and b) telling you what you should be doing. I have found this so very upsetting, especially from so-called friends, that I only rarely disclose the fact I have MS. If asked, I’ll say that unfortunately I have a long-term problem with my leg (or words to that effect) and I don’t offer any information. The people who persist in asking are generally busybodies and once I have their measure they get the cold shoulder. Anyone with an ounce of sensitivity will pass no comment and wait for me to initiate a discussion. Remember the Royal Family’s attitude: ‘Never apologise, never explain’. We don’t have to justify ourselves to anyone. xx


hockeyrat
3 years ago

That happens to me a lot , lately. I even forget for the moment what something is called , like ” cup” recently
Sometimes I can’t remember my phone number or zip code when asked or filling out paperwork
Sometimes I have to write it down on paper, so when I want to write it, I can remember .
I was so afraid of getting dementia or something. My memory is getting worst.
English was my best subject in school too.
On occasions people think I’m “drunk”, speech slurring slightly, forgetting in mid sentence what I want to say , legs gettin very tingly or heavy, when I can’t feel the floor and have trouble walking
I’m always get ” faking it because I don’t look sick,even though I have a slight permanent limb


northernlass
3 years ago

I am so going to use some of those top tips @cameron .. I haven’t told many friends why I have a limp and a walking stick .. but when so many people point to the stick and say “OMG what’s that for..?? (with genuine-ish concern) I just say BAD BACK .. which is true and a lot easier than saying because I have MS (They might say “What’s MS..??” ..long story.. and tears.. from me 🙁 ) and without it I might fall over in the street … wet myself… be unable to get back up.. and look like I am just a day-time drunkard fresh out of the pub.. 🙁 but from now on I may just say “I have a long term problem with my leg..” and then if questioned more take a leaf out of the royals book and never apologise for not owning up in the first place and never explain to people who will not be doing anything to benefit me by knowing… I told family but no one helps me as they all live away so I’ve already learnt a lesson there.. and @k‘s if you are having a difficult time for whatever reason then those who accuse you of playing on it can just go and DO ONE !!!…. 😀 Best wishes


cherish
3 years ago

Hi All
Do any of you (that use elbow crutches) get ppl saying to you ‘oh did you have an accident’ or ‘did you break something’, then you say you have ms and they end up with serious egg on their chin?. I get this every other day.
So if you have ms, how dare you use crutches as ppl Should only use them for broken bones!!! You have to laugh at some Ppls ignorance really. Or there’s the really really annoying side when even a neurologist or ms nurse says ‘wow, you look great’, and all you want to say is ‘if I turn myself inside out, believe me I’d look bloody s**t’.
Hope you are all having a nice weekend 🙂 🙂 🙂


graham100
3 years ago

Hi @cherish. I know where your coming from I used to think that when the nurse said I was doing well, then I realised she spends 8hrs a day with people a lot worse? So I let them off now. Lol.


cameron
3 years ago

Reading these posts makes me realise even more how important it is to manage one’s relationships because (it seems to me) that this has a direct impact on the MS. This is both scary and empowering. When we’re upset, the MS kicks off. To break this cycle we need to protect ourselves against the kind of thoughtless comments that have been described here. I don’t know what the best way to do this is but my solution is to walk away from all potentially negative people/comments. If I don’t hear what they’re saying, they can’t harm me. And I don’t see it as my remit to do any educating. My efforts go into trying to minimise the effects of MS through exercise, physio etc.. When I’m not doing that, I try to put MS right out of my head and live as fully as circumstances and finance permit.


cherish
3 years ago

Graham100, you are so correct.
I think we often get lost in our own problems/disabilities that we often forget there are ppl so much worse off 🙁
There’s a group started here in Aberdeen called 5’rs. It’s funded by the big lotto. It’s all about ‘re-energise, relax, etc. It’s every Tuesday for 10 weeks and it’s full of reflexology, reiki, Bowen, shiatsu etc and it’s so great. We are on week 4 now. Anyway, back to my point… There’s 10 of us on each 10wk block and out of 10 there are 4 that have such terrible ms, really terrible and it fills my heart with sadness to realise these ppl can’t eat, speak, move, etc.
So I genuinally understand what you mean. It’s just sometimes difficult to actually realise (when trapped in your own world) that your own Neuro or ms nurse say you look great- but that will be bcoz you actually do look great compared to the patient b4/after you!!

Sunny Sunday in blistering hot sunshine here up north today!
That has to be my joke of the day bcoz it’s more grey and wet than my head is!
Have a nice day all 🙂 🙂 🙂


graham100
3 years ago

Hi @cherish. Pleased you got my point and didn’t think I was being funny. Funny is the sun is shinning down south. Lol. X


cherish
3 years ago

Never! Post us some Sun and salsa… That would be like an infusion of vitamin d with super entertainment!
Speaking of Sun, am I right in thinking if you are in a hot part of the world (clearly don’t mean the UK) it is better for the ms? I thought it’d be very tiring for ms sufferers?


graham100
3 years ago

@cherish, again it affects us all different. I love getting away to the sun, and when I lay in it I do feel totally drained. But so does my wife, and she hasn’t got ms,, I just don’t lay as long as I used to. Cool down then get some more. (Loverly jubbly). Lol.


cherish
3 years ago

Lack of spondoolaz deprives me of hot hols but I can prey for some hot days here….. The next hot day is probs due in around 2023!! Lol 🙂 🙂 x


graham100
3 years ago

@cherish. Six of us going to the Maldives June. For our friends 50th. We had some savings so thought could be the last chance sod it. My wife has promised other people she will video them getting me on the sea plane. So they can all have a good laugh. Lol


ks-2
3 years ago

I thought I was fine in the sunshine @cherish. So I went to marrakech last year, at their hottest time of year and I was lapping it up. …until I went for a hammam massage, big mistake, I was lying on a marble slab in a marble sauna for over 30 mins and it ruined me for the rest of the holiday!
So sunshine is good but sudden insane rise in temperature for a long period not so good! 😜


cherish
3 years ago

Aww bless you, that sounds like your holiday went from great to pants within 30 mins 🙁
There’s a possibility of us going to Goa in 2017 with family but I really do worry about the heat as other than ms I’m very fair headed, don’t go brown but I do a cracking beef tomato colour, lol. Then within a week I turn into spaghetti Bolognese!
This is just my opinion but 2yrs ago we had a belching summer up here and I took great pleasure on the first 3 days of it to sit out in garden (not for a really silly long time) but after I did it 3 days in a row I ended in bed for 8 days, I was just wabbit, nothing functioned well at all so that’s why I worry about hot hols.
And Graham100, be sure to send us a tit bit of your video??!!
Not to laugh at you but to laugh with you! Gotta laugh! 🙂 🙂 🙂


graham100
3 years ago

HAhaha. Laugh at laugh with, I really don’t mind, if I make someone laugh it makes me happy. I will try to remember. Make note. Send vid clip of you falling out of sea plain into water with sharks to make cherish laugh. Ps sorry K*s seem to have changed the subject.


cherish
3 years ago

Il put on my flippers and dive in and rescue you, only if I dive to the left il fall to the right, lol. Il call Nemo to see if hel save you, or jaws to see if he fancies a bite to eat! 😂

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