Almost every post recently contains the expressions ‘dealing with m.s.’ and ‘coming to terms with it.’
What are you talking about? –
Yes, I have m.s. but I’ve never 'dealt with it 'nor have I ‘come to terms with it’ –
I neither want to ‘deal with it’ nor do I want to ‘come to terms with it!’
hiya
i dunno what to make of ur post-sorry! either u r in denial or ms doesnt affect you on a daily basis. either way good for you-just now.
for me i have no option cos its changed my life drastically requiring carers to assist me with basic tasks.
i have read a few of ur replies recently and wondered how u live on daily basis. i dont want an answer-am not being nosey! but your responses have given me something to think about-thats all. i love the differences on this site-some i think some are ott some just funny BUT we are all living in our own way and thats all everybody can do/does-ms or not.
thanks for posting
ellie
Hello Zetland Please don’t think I being flippant because I’m not!! I’m just concerned. What have you done with your MS? You seem very angry…I hope your ok? Take care 
Hmmm. One of my pet hates is: “I have MS, but it doesn’t have me!”
I find that a particularly useless and irritating phrase, because yes, it does have me. To me, to insist otherwise seems like an attempt to deny reality. However, other people seem to find it a helpful slogan, for whatever reason. To me, it’s just that - an empty slogan. But I don’t think it’s bad manners to use it. It’s just that I’m left - like you, Zetland - thinking: “OK, and what does that actually mean, exactly?” I guess it must be some comfort to those who use it, otherwise they wouldn’t do so. It’s just not something I relate to myself.
I suppose, in a sense, anyone who hasn’t committed suicide (and I’m not making light of that, because people do) must be “dealing with MS”, or “coming to terms with it” in their own way. Perhaps “coming to terms” just means you’re no longer hoping for a miracle, or that there was a mistake with your diagnosis? I don’t think it means you’re happy with it, or embracing it. Don’t we all have to come to terms in some way - or go mad?
Tina
Whatever language you use to describe it you have to do something in your head about MS. You can ignore it, pretend you don’t have it and try to carry on as before but for most people that is a road to failure. I suppose a small % will get a dx and be so slightly affected that there is no change. I rather suspect that those people never get a dx though because they have no reason to chase GPs and neuros to explain what is not wrong with them.
For many people an MS dx results from symptoms, which have life changing consequences. Loss of fitness and possibly loss of income make big changes not just for the MSer but for their families too. I think it is unrealistic to expect those people not to strive to find a way to carry on with life –“coming to terms with” and “dealing with” MS are just another way of saying coping.
Let me give an example – a hitherto fit and attractive fashionista has to find a way to accept the fact that the latest platform, high heals may need to give way to flat Mary Janes and a walking stick. She may refuse to of course but a lot of conversations with the pavement will ensue. Changing the way we do things is dealing with MS but I am extremely glad that you do not find the need to do so.
hiya
very wise words from tina as always!
it is a phrase i use but to me it means…
its got me physically-well and truly cos i am well goosed in that respect! i am beaten…
its even got my brain (lots of damage done affecting speech and thinking-thats the worst bit) i am beaten…
but mind is different-thats the one thing i have control over. i am not beaten…
but i can also understand why folk dislike cos we all interpret it differently. and so we should! so when i use it i am referring to my mind…
ellie
l think this is the nature of the beast. We are ALL effected differently. Many people with MS - have only mild ‘disruptions’ to their bodies/lives. Whilst many more are not so fortunate - and are having great difficulties in coping with everyday life.
Either with mobility or -also- bladder/bowel loss of control.
We all deal with it in different ways. Some are ‘stoic’ - and just get on with it. Others battle with depression caused by the disease. Sadly, many of us live in an area where we do not get any help from MS Nurses/Therapy Centres or even a neuro who knows much about the disease. lt is a postcode lottery. Which is why this site is invaluable - all the time we learn from others.
But we all, on this site, unfortunately, have MS - or are awaiting a final diagnosis.
Thankfully, many of us have not lost our sense of humour - which is a big help - to them - and to all around them.
There is help - especially for depression. And different ways of managing the B/B problems.
l do try to stay positive [or is this the LDN speaking] even after 31yrs of SPMS.
Not all is lost.
Mmmm Zetland. I`ve read all your replies and feel I go along with what they say.
I dont have MS (anymore!) as i was wrongly diagnosed with PPMS for several years.
I do however have a very similar, incurable and barely treatable condition.
I`ve been urged by many to remain using this site, so here I am!
Anyway, back to you…I`m waiting to read your reply to all the replies.
pollx
here we go again - more vacuous statements and words trotted out — ‘in denial’ ‘angry’ ‘we still have our sense of humour.’
I have had m.s. a long time and it has made me change quite a few things, many things that I didn’t want to change. There are things I would like to do but can’t because I have m.s. It has had an effect on my working life and my personal relationships.That leaves me feeling very frustrated at times.
What I object to is that expressing feelings like those above in straighforward way has been hijacked by inappropriate vocabulary.
There is an easy way to look at coping strategies (right on, Wendels), if they work for you, they are right for you.
In general, I go with both Tina and Ellie; there are some things I can no longer do (due to MS) and there are some things that I can still do. What I cannot do is change the situation. Yes, I have been Dxed with MS, and that cannot be changed. Yes, I now score 6.5 on the EDSS - and have to acknowledge that the day may come when the score is 7+ and I become a wheelie.
To do otherwise would be totally pointless (for me), but for another it might mentally overload them - and denial becomes the coping strategy. Learning how to put on a pair of trousers with a dropped foot means a coping strategy - and that is no more and no less a coping strategy than the way you think anout your Dx of MS. Cognitive fog may mean that you make lots of notes and lists, if that is how you cope.
In the end, the choice is simple - cope or give up. The “how” does not matter, but it is your decision.
Geoff
hi again.
It`s for each person to work out in their own way, how to live with a chronic desease.
I think we should leave it here and not have this post dragged out.
Different strokes for different folks is all.
pollyx
Geoff - I totally disgree with a lot you say.
‘Denial’ can never be a ‘coping strategy’ beause if you’re in ‘denial’ you have nothing to ‘cope’ with.
This is quite different to say making lists or devising a method to put on trousers if you have drop foot.
The point I am making is that m.s. has acquired a totally bizarre, meaningless vocabulary and people are subscribing to this vocabulary.
Hello,
I couldn’t agree more. I can’t see how i will “come to terms” or be ok with something that has taken so much from me, and will take so much more.
But that doesn’t mean i won’t go down swinging, without giving ms an inch.
Darren
Quite right, Geoff. For some people, denial as a coping strategy is simply ridiculous for them as individuals - it isn’t in their nature. For others, some strategically deployed denial is the thing that stops them imploding, and so keeps the show on the road.
There is room for all flavours of how to deal with this stuff. The ways we do it are as various as we are as people - i.e. very!
Alison
There not terms I’ve used myself…at least I don’t think so but It doesn’t bother me if other people find comfort in using them. I can think of more important things to get irritated about…thats just my opinion
I’ve had to change a lot of things with my personal life/career…thats past and done with. Onward and upwards!!
Ooops!! Soreeeeeee
i wonder how many medical students reading this have withdrawn their application to be gp and espec neuro?! poor sods have 0 chance of pleasing us all-even we (those with ms) cant agree amongst ourselves. which is ok as we have all shown but being in a posistion trying to manage us lot… just another wee thought for those that hold the purse strings and are trying their best to benefit most/all…its impossible!
ellie
Hiya, whither you deal with it, or come to terms with it, you still have it, MS, or whatever, you deal with it, in whatever way you can, or you lie down to it and mope, what difference does it make in how or what you say, it is the way you act, afterwards, Brian
how about this way to look at it all, NOT meant flippantly, i really mean this… MS sucks. i’m glad to be able to come here to read about and communicate with people who know what this damned thing is like, it helps take my mind off it (oddly?!). when i read the title of this post i did think that it was about being angry (bad language), i’ve got to say that since my ms really kicked off in 2003. i’ve never sworn so much, although, apparently it’s well proven to help reduce pain, my biggest problem, currently.
wendy x
The problem for me is that people who don’t have m.s. often perceive us in totally the wrong way. That is we are defined by this ludicrous vocabulary that’s developed - probably by someone who doesn’t have m.s.
Pre-m.s. no one said anything about my sense of humour (or lack of!) yet now I am credited with having a ‘really good sense of humour’.
I am told I am ‘fighting m.s.’ - I’m doing nothing of the sort - I’m fighting to do the things I’ve always done - that’s different.
2 questions -
a) what does ‘come to terms with m.s.’ really mean?
b) how can ‘denial’ be a coping strategy - if you’re in denial of something how on earth can you cope with it?