Hello girls
Didnt realise my error would kick off so many posts! But its good to talk…
Its only my own errors that annoy me-other folks dont make me feel anything. Errors could be made for so many reasons-poor eyesight, poor co-ordination etc and when I am reading posts its not essential that everything is correct. When texting I frequently make errors cos of hands not being able to press small buttons-keyboard eaiser for me.
Having young kids I love when they write phonetically!
Ellie x
Hi
I am definitely in the camp of refusing to label myself as an MS “sufferer”. Of course it causes suffering but I don’t want to introduce myself that way to people. It makes me feel like a victim and I much prefer to be a battler in life rather than a passive victim.
If anyone asks I just say that “I have MS”. It isn’t my identity, it is an illness I live with.
And yes, I am another spelling and grammar pedant and I really miss the little red wiggly lines alerting me to a typo. My spelling is great, my typing is terrible!
Cheers,
Belinda
Hi Sarah,
Having read the other posts, I have to admit I would never refer to myself as an “MS sufferer”. But I think it’s just not an expression I tend to use anyway - it’s not because I take strong exception to it.
I don’t wallow in it (I hope!), but if someone else describes me as a “sufferer”, I think it’s probably a fair assessment.
I don’t see that as being negative - just being honest.
I am a believer in mind-over-matter, to an extent. But not to the point I believe refuting words like “suffering” will mean they aren’t still true. Oh, if only it were that easy!
But anyway, I think we have enough things to get stressed about, without feeling insulted every time someone uses the term “MS sufferer”. It’s not meant as a put-down, so why take it as one?
I am glad you try to take something positive from your experience of suffering. I am not sure yet what (if anything) the positive side may be, but it does focus the mind a bit more on things others take for granted. This is going to sound naff, but I think I listen to birds more, and smell flowers - try to take more pleasure in simple experiences.
T.
x
I don’t like MS sufferer or suffers from MS, and MS victim is another one I can’t stand either.
I have MS,yes I suffer,I’ve spent the last year feeling like I’m dying at times and my quality of life has been zero.But I will never say I suffer from MS, I shouldn’t have to,it should be obvious.
It’s something that I have and although it has actually ruined the life I had and wanted,I will not allow it to define me.Adding sufferer is insulting and patronising on my opinion,but it’s up to each one of us to decide what is a suitable terminology,so I’m not saying it’s wrong for another person with MS to say I am an MS sufferer,but don’t use it to describe me. I see it often in the press where I suppose it makes for a stand-out headline and that is guaranteed to get me all worked up and fire off an email telling them off.
Can’t stand ’ I have MS but MS doesn’t have me ’ either,that’s makes me want to swear.
I stopped trying to describe it to people years ago,I know the bemused look very well,it doesn’t help,so I’ve stopped bothering. Probably not the best solution,but it works for me,xxjo
[quote=“Jan”]
Hi, I do really believe that it is only MS sufferers that really understand the painful nature of MS. If I say to you my leg is cold will you tell me to give it a rub? 'course you won’t. Having MS you know it don’t work. I don’t think you are pessimistic just saying it how it is.
By the way I’m not keen on this site it use to be so easy to use. Must be me I’m getting old.
jan
[/quote] i only tell my close family about my fatige and i only describe it as a heavy weight on the whole of my body . i like you feel that people dont understand, but you know what i knew someone with ms before i found out thats what was happening to me and i didnt understand then either xx
sami xx
im not keen on this site i dont think i know how to use it properly, and dont seem to get replys.
dealing with the bits I can … this one’s a pussycat compared to some … my balance is rubbish … but I’m still on two feet
rrms … its not too bad mustnt moan.
I really don’t like the word fatigue!
I don’t know what it means to people who don’t understand, but it brings up images of ‘delicate you ladies’ gently putting their hand up to their forehead and saying ‘I’m so fatigued’. Maybe it’s the things I read and watched as a child.
But it makes me think people see me as week-willed and feble. Not someone who is actually ill and completely overcome with extreme exhausion. So tired is another term I don’t use.
So
“I have MS, which means I suddenly get completely overwhelmed by exhaustion. Sometimes out of the blue, sometimes after I do even a tiny bit of walking. Which sounds like a good excuse for an afternoon nap, but I’m usually doing something I can’t abandon. Like enjoying myself, driving or doing exciting things like housework!”
My plan is to not be seen as a victim, give a bit of education and show the world I have a sense of humour and still like a laugh. I am definitely don’t like “I suffer from MS”. I don’t say I suffer from diabetes, high blood pressure or anything else either.
Thanks for your replies, I am normally a very balanced sort to person, so I have enjoyed reading your comments.
I think it’s just that I sometimes feel frustrated that I am not being understood sufficiently, and I also worry about being judged as exagerating what I am struggling with (see, I still can’t bring myself to say it) but then again why should I expect to be understood, when I was fit and healthy, I wouldn’t have understood either. It’s only you good folks who can understand really.
It’s interesting that there are a few self confessed pedants around, I gave up worrying about spelling and grammar a long time ago, but I can’t help saying something when I see the Union flag being flown upside down, which seems to be quite often, that brings out the pedants in me. I wonder if the flag will have to change if Scotland gains independance?
Bill.
think the word suffering does come into it depending on what is happen , I have PPMS and i have good and bad days today is a bad day, I think Bill is right is the invisable stuff that is a pain, i have been stressed yesterday and I am still suffering, what annoys me is if I was fully fit , the stress would not impact me to this degree and no one can understand why it hits me so bad , rigt have had me moan
trish
i prefer to say i put up with ms. IT makes me suffer in many ways but i will be damned if its gunna have the last laugh. youve just got to get on with it and stick a couple of fingers up in the air at it every once in a while. x
Wonder what’s wrong with me?
Hi I’m Ann, and having been diagnosed with RRMS almost thirteen years ago, I’m sat here today having only just taken the time to admit I can’t do everything. I’m now a single parent of a 14 year old daughter, on my own for almost 12 years, and can’t understand whats gone wrong… Don’t get me wrong I’m ok with life but just can’t seem to get my brain to think. It dosn’t tell me to wash up, change the beds, wipe the work tops or wash clothes etc. I’m sat in my bedroom not able to see the carpet for clutter… I just don’t understand why I feel like i’m drowning.! Why can’t I be that organised business person I used to be? Is my MS to blame? I feel guilty and lazy although I know I can’t doggypaddle fast enough to reach the shore. Still sat on the bed but smiling again now. Thanks for listening.
Ann x
I recognise a lot in your comment Ann, I used to be a bookeeper (talking about efficiëncy… is one ‘k’ isn’t it?) but these days I cannot even keep up with my own paperwork or take a long time to do the simplest of DIY jobs…
I hate it, as this means that I seem to loose ‘control’ over my life (as the foundations are already constantly under attack due to the MS and my daughter’s condition of health).
Perhaps I should start to visit this (and the Dutch) website a bit less as my wife quite wisely suggested…
[quote=broushka]
I don’t like MS sufferer or suffers from MS, and MS victim is another one I can’t stand either.
I have MS,yes I suffer,I’ve spent the last year feeling like I’m dying at times and my quality of life has been zero.But I will never say I suffer from MS, I shouldn’t have to,it should be obvious.
It’s something that I have and although it has actually ruined the life I had and wanted,I will not allow it to define me.Adding sufferer is insulting and patronising on my opinion,but it’s up to each one of us to decide what is a suitable terminology,so I’m not saying it’s wrong for another person with MS to say I am an MS sufferer,but don’t use it to describe me. I see it often in the press where I suppose it makes for a stand-out headline and that is guaranteed to get me all worked up and fire off an email telling them off.
Can’t stand ’ I have MS but MS doesn’t have me ’ either,that’s makes me want to swear.
I stopped trying to describe it to people years ago,I know the bemused look very well,it doesn’t help,so I’ve stopped bothering. Probably not the best solution,but it works for me,xxjo
[/quote
Thats just how i feel Jo,i hate the saying ‘i have MS but MS doesnt have me’ it makes me cringe, i dont discuss my MS with anyone apart from people on here and when i go see the neuro or ms nurse, no one cares anyway,i just get on with it best way i can.
jaki xx
Spose I have to cope with the [very Germanic and very filtered word], but have every intention of being a burden whilst I can still enjoy it
Wb
Thats just how i feel Jo,i hate the saying ‘i have MS but MS doesnt have me’ it makes me cringe, i dont discuss my MS with anyone apart from people on here and when i go see the neuro or ms nurse, no one cares anyway,i just get on with it best way i can.
jaki xx
[/quote]
Hi Jaki hope you’re doing ok. ’ just get on with it ’ , that’s what we should say instead of using the s word, I’ve got MS and I just get on with it ! ,xxjo
I’ve just replied to another post where I used the word suffer in relation to others with MS. I too do suffer from the effects of MS and I could do without it and so do others. The word STOIC comes to mind and my gut reaction to stoicisim is that its no good. I hope that my using of the word ‘suffer’ in relation to MS wasn’t too trivial.
Take care
Jonny
Hi Bill
I suffer from peoples attitudes towards MS
;-o Mary
What an excellent quote Mary and so very true.
You’ve hit the nail on the head there.
I like it. Thanks
Bill