Forum

Do you 'Suffer from MS'?

Hello all.

I've always tried to avoid using terms like 'Suffer from MS' or 'MS Sufferer' and the like.  I cringe when I hear or read it, as well as being mindful of those poor souls who really do suffer from truly awful illnesses and situations. Instead I don't mind saying something like 'I have MS and I am strugling with....' .

Recently I've been struggling rather more with my own MS symptoms, you folks will know what I mean by that.  Which has meant trying to describe those symtoms. I know it's been said before but, 'Fatigue' in particular is a word that does not adequately decribe it's pernicious nature.  So, I tend to say 'Cronic Fatigue' or 'Exhaustion' in the hope that this is more meaningful.  

Have you ever been asked to describe something only to be met with a bemused expression or a look of disbelief?  I have an ongoing problem with visual disturbance, over the years I've mentioned it so many times to so many doctors, consutants etc, that I now feel like a bit of a nuisance. 

Appologies for being so pessimistic but I just had to get that off my chest, and I think this is a good place to do it.

Bill.

 

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

Hi Bill, i  hate the phrase 'ms sufferer' it makes me cringe too,and it really  annoys me, when people say it,when i was in the maternity hospital after just givimg birth to my daughter,a nures described me to another nurse coming on duty as an 'ms sufferer' grrrrrrrrrr.lol.

 

jaki  xx

Hi BillI try not to use those words either as I know it's not the MS Society tend to advocate and as a volunteer I follow their lead.

I do however suffer from time to time with all sorts of things, most of which are dismissed by others as 'normal'. In fact I was told so many times that there was nothing wrong with me that I believed it myself.

I had no idea how a person with MS felt until it hit me bad, so why should I expect others to have understanding. I do correct people when they say that bladder issues are common in women my age, I tell them that I self catherterise these days and that usually shuts them up.

As for fatigue, unless someone has spent any time around someone with MS or other disease; say for a number of months, they have no idea what we go through. Sorry I don't know how to explain it without sounding moany so only talk about it with people who know what I'm talking about these days.

 

Wendy

x

Hi Bill

Like yourself I avoid the terms you mention.

I have been described as one of those annoyingly positive folk! I have MS-it doesnt have me etc etc etc! (I dont say them either cos they are just words!) You can say whatever you want-I reckon its your own thoughts and attitudes that see you through.

Before I am asked if I know what I am talking about (?!) I have been in the position of having carers in x4 daily to see to my every need, S/S were involved as I couldnt look after myself, let alone my 4 kids. I have been unable to drive, unable to see blah blah blah. I could lie about and feel sorry for myself or accept the help available to me and continue to live (as opposed to exist) as full a life as possible for myself and my kids. They didnt miss out on clubs etc-I asked for help. Sometimes we are our own worst enemy-dont want to feel useless etc etc. I fully understand that-of course I do-but only once did I ever 'reject' the offer of help from one of my kids-the image of their wee startled face still lingers with me. Sometimes we need to stop being so focussed on ourselves and let others help-simply because they want to and they care.

Sorry-blabbed on too much as usual!

So to answer your question-NO-I dont suffer MS-I learn new ways of coping with any challenge thats given to me/appears for me. I do have days when I think I have no tears left-but I let them go then remind myself of all the wonderful folk that I do have in my life.

Keep strong Bill-write on here-let it out-then let it go..................

Ellie x

I have no objection to the phrase at all.

There's no doubt there's quite a lot of suffering involved, so why try to sanitise it by boycotting the word?

I don't want to exaggerate my woes, but equally, I don't want to give people the impression MS is "quite OK, really" by censoring language like "pain" or "suffering".

Yes, I do damn well suffer with/from it.  What is chronic pain and fatigue, if not suffering?  Let alone all the psychological aspects of not knowing if you're going to wake up tomorrow, or next week, with something else not working.

I don't want a pity party, but I am NOT going to pretend it's a bed of roses, or a bowl of cherries, or whatever the right saying is.  If anyone thinks "suffering" is an applicable word, I'm not going to argue with them, 'cos basically, they're right.  If I insisted I didn't "suffer", I'd be lying.

Tina

Tina and Ellie; brilliant posts. Your views seem polar opposites but I agree with and can empathise with both!

I am interested with what you say about social services Ellie, because when I was unable to walk my kids to school any more and rang them for help, I was told no such help was available. I had to rely on the very grudging efforts of my family. 

Personally, I wouldn't really tell someone 'I suffer from MS' as that seems a bit sympathy-seeking and I would hate people to see me as that; I am more likely to say 'I have MS' when it is relevant to mention it, and then I'd go in to more detail if they asked. I would hate to be described as an 'MS sufferer' as I would like to think I am more than that - I am not just a label! 

Yes, they're just words, but unfortunately (and sometimes fortunately) words can change the way people perceive us. I suppose 'person living with MS' is an ok phrase. 

People make me angry because i was in a house at Christmas time and a gentleman started to describe a lady he knew that was "really bad" with MS, whatever that means. Also its one of the worst diseases ever with no cure and only a wheelchair and premature death to look forward to - i wanted to say,"didn't know that you specialised in MS" then punch him.....angry

Good grief - was he aware you have MS?

When I told a friend about my diagnosis, she said ‘we have people with that in our home (she works in an old people’s home) and it’s really bad, they’re in a terrible state.’ Lovely thing to hear when you’re just coming to terms with the diagnosis.

Hi Perky

I have no family around to help me..................

The S/S budgets are split into a million (or more!) different ones! So walking the kids to school came from the kids S/S budget as opposed to me (adult needing help budget) I found that the help does exist but was such a nightmare to set up I told them to stuff it in the end. What happened was I rattled my window and asked a parent if my kids could walk to school with hers-sorted. Not perhaps ideal and thats where the miles between saying the help is available and it happening in reality becomes apparent.

I read Tina's post and understood 100% what she is saying. Shes a wise woman-if I see her name then I always read what she has written. Whether I agree or not is irrelevant-gives the old grey matter something else to ponder! And thats one of the things with MS-theres no right or wrong for ALL of us-only whats is right for each of us individually happy2

Back to my own post-I like to experiment with 'energy' and have read such things as The Secret and The Power of Now (some say hocus pocus nonsense!) but thats my choice and how I manage to live each day-others have a different but just as effective way. Disagreements start when a person thinks there way is the only way evilLaugh

Ellie x

Hi Bill,

             I also wince whenever I hear or read the expression "MS Sufferer", but I can't really think of another way of describing it. MS party goer? MS person? I suppose that until we can think of a different handle, we have to make do with this one.

Friends & family have no inkling of what it is like to have MS. I told a family member last week that I had a bout of fatigue. This was answered with:

"Ooh I know, I've just cleaned out the cupboards."

            Take heart that at least we understand. Take care,

                                Moira

Argh!

Glaring error in my last post!

Should say 'their' way-NOT there!

Ellie x

I like 'MS party goer' Moira. I am going to send out invites to my MS party. thumbsup

Aha! A fellow pedant I see!

This board is the stuff of my nightmares - a place where self-editing typos etc is impossible. Will no-one think of the children?

Moira, this did make me smile. It is so true that fatigue is one of the hardest MS troubles for civilians to understand because they think they know what we’re talking about, but they do not have a clue and that is SO infuriating.

Alison

x

Do I suffer from MS?  Well, it ain't no bed of roses; no pleasure cruise, as the man said.  But I would hate to be so described by someone else - I won't have someone else deciding for me!

Alison

x

You are a champion Alison :wink:

I feel the same - I don’t use the phrase “suffer from MS” and it would irritate me to hear somebody else using it to describe me. But it is a complete pain in the arse and I suppose the word “suffer” is as good as any other, just don’t let me catch you patronising or pitying me, you’ll regret it, sufferer or not!

Luisa x

I don't suffer fools, so why should I suffer MS?

I don't suffer MS. I have MS.

It sucks.

 

The symptom that I couldn't describe properly was summed up brilliantly by my MS nurse: "your eyes aren't keeping up with your head." Perfect!

Describing fatigue to someone who has never had it is impossible. I reckon the only thing to do is to demonstrate it. Then they get it, well, a wee bit better at least. Bit of an extreme method mind - I'd only want to do it for people who really needed to know!

 

Karen x

 

 

[quote=“perky”]

Aha! A fellow pedant I see!

This board is the stuff of my nightmares - a place where self-editing typos etc is impossible. Will no-one think of the children?

[/quote] I’m another pedant I’m afraid. Can’t stand the misspellings, they leap out at me. It’s my problem though I think, it doesn’t really matter, does it? Not when you consider our collective problems. Teresa xx

[quote=“Tree65”] [quote=perky]

Aha! A fellow pedant I see!

This board is the stuff of my nightmares - a place where self-editing typos etc is impossible. Will no-one think of the children?

[/quote] I’m another pedant I’m afraid. Can’t stand the misspellings, they leap out at me. It’s my problem though I think, it doesn’t really matter, does it? Not when you consider our collective problems. Teresa xx[/quote]

You’re not alone, I’m another spelling and grammar Nazi (teacher’s daughter, I’ve been like this since I learned to read) - I find it really difficult to read through mis-spellings and bad grammar, however, I do realise that in the general scheme of things, it’s not really that big a problem.

Luisa x