Are you saying SBZ and I are angels?
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Husband of MS sufferer told 'quit work' for benefits
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Posted 4 months ago #
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There's some really insensitive crap on this thread - presumably written by people who are lucky enough to have no experience of this type of situation . . .
Posted 4 months ago # -
Right here goes (as I see the usual suspects have not even drawn breath since my post)
My wife has secondary progressive MS this has been the case since 1988, in that time she has gradually deteriorated in her ability to lead a "normal" life to the point now where she has 4 visits a day from a care agency while I'm at work.
Just before Christmas she had a super pubic catheter fitted as toilet visits were the main cause her falling/not being able to get up from the toilet.
Our house has become cluttered with mobility aids, to list a few.
Stair lift
Glideabout chairs x 2
mini electric wheelchair
Etac turner x 2
Transfer board
Manger CamelAll of these things help but don't help much when your wife is collapsed on the floor in pain with leg spasms and a terrible voluntary tremor in her left arm that causes her to smash her hand against the radiator she's trying to use to pull herself up with.
But if you were to walk into the lounge while she was sitting on the sofa you would say she looks well.SBZ as someone from the world hot spot of MS I'm quite sad you don't see the nasty nature of your posts.
I could post loads more about the degrading nature of her illness for both of us but I will spare you that.
Despite this we have both agreed that I must continue working as the person giving up work often ends up resenting every facet of their life & at this point I am still paying twice as much tax as my wife receives in disability related benefits
Posted 4 months ago # -
She said: "I haven't got any money to pay a bit of the council tax. If we pay a bit of the council tax then we just don't eat.
Well that comment is singularly sensationalist bollocks isn't it? I don't accept that their circumstances mean she cannot eat any food if she pays 'a bit' of her council tax.Posted 4 months ago # -
mrovershoot, best thoughts to you and mrs overshoot.
My best mate has a disease called cmt, which is an evil degenerative disease. Despite this he works and remains a source of massive positive energy.
For folk who get the genuine short straw of genetic or disabling illness I thing our society can never do enough to help.
mf: the woman in the article is clearly making her case in the most vivid, media headline friendly way possible. Cant say I blame her if its the only way to get heard. If she could exagerate even more maybe we could make her an honourary stw member?Posted 4 months ago # -
SBZ as someone from the world hot spot of MS I'm quite sad you don't see the nasty nature of your posts.
Try interpreting them in an inquisitive way rather than a nasty way then. Leave your pre-conceptions out of it.
Posted 4 months ago # -
Sorry that's just dug you even deeper into your trench!
SBZ I would understand your posts if that was just a picture of a woman from the shoulders up with no other qualifying stuff.
Although I'm sure she's pretty media savvy and is a bit more vocal than people like my wife, it sometimes takes people like her to raise awareness of others plight.
On the flip side this woman has done very well for someone with Primary progressive MS if she was diagnosed with it in 1995!!
In that I mean she still has the energy to do stuff as by now my wife is exhausted from the simple effort of brushing her teeth (this includes water and toothpaste everywhere and a change of tops)IIRC Sheldon Brown had PPMS and only lived 3 or so years from diagnosis, I did have an email conversation with him for a few months about his MS but once it got really bad I told him to concentrate on his family.
Posted 4 months ago # -
Surrounded By Zulus
Leave your pre-conceptions out of it.
That's a very strange thing to say to someone after claiming that the woman in question : "Doesnt look to ill in that photo"
Or are just trolling/having a laugh ?
Posted 4 months ago # -
If she could exagerate even more maybe we could make her an honourary stw member?
Posted 4 months ago # -
Leave your pre-conceptions out of it.
SBZ sometimes you say stuff that provoke debate and it is good and sometimes you make piers morgan look like a nice guy.
This was not the thread for you to do your usual trolling and it was a pretty distasteful comment.
It really is a shame there is no comment you wont make for attention - as for trying to play the victim card or acting like you are being picked on or misconstrued after that comment FFS like anyone will buy thatPosted 4 months ago # -
It's easy to play the troll card isnt it. How about you put some thought into it for a change rather than simply follow the pack mentality.
Posted 4 months ago # -
Oh sorry my mistake your are not a troll ...but that means you meant it, in which case you are a ****
Sorry I said troll when , with thought, I meant ****TBH i really dont understand why you troll then get all uppity when someone cries troll - there is nothing you wont do for attention is there
Pathetic - literally pathetic.
Let me remove the limelight from you which you crave so much
No idea why you do this...do you know?
Posted 4 months ago # -
Sadly he's not alone... The poor have become the new jewry.
Posted 4 months ago # -
Posted 4 months ago #
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Surrounded By Zulus - Member
How about you put some thought into it for a change
You should have put some thought into how that comment comes across. To me it's cleary insinuating that she's faking/embellishing.
Posted 4 months ago # -
TBH Junkyard I didn't take any offence from the remark, after some of the looks we've had going into places with her wheelchair you very quickly loose any sense of being put out.
I know SBZ likes to provoke a reaction and sometimes you get the feeling whatever you post up their reply will be typed without reading anyone elses posts, which is why I didn't say I was upset only sad he needed to use a cheap shot.
Posted 4 months ago # -
FFS - get the chips off your shoulders. It makes me wonder if many of you have ever seen someone who is severely debilitated through MS, as is unable to walk, or talk, or control their muscles in any meaningful way. If you have then you'd realise that in the picture in the article she doesn't "look" "ill". That is not saying that she isnt ill. Look at other articles about her and you'll see pictures where she does look ill, but not as ill as some people who have had the same condition for a far shorter period of time.
I work with MS patients who are in far worse condition than she appears to be.
Posted 4 months ago # -
Surrounded By Zulus - Member
FFS - get the chips off your shoulders
Really?
It makes me wonder if many of you have ever seen someone who is severely debilitated through MS, as is unable to walk, or talk, or control their muscles in any meaningful way
Did you not read what I said? Surely you are aware that RRMS is the most common type?
http://www.mssociety.org.uk/what-is-ms/types-of-ms/relapsing-remitting-rrms
Posted 4 months ago # -
Eh?
Posted 4 months ago # -
Posted 4 months ago # -
If you have then you'd realise that in the picture in the article she doesn't "look" "ill". That is not saying that she isnt ill.
So why the **** say it then ?
She has MS, that's all you need to know. Whether this photo does her justice is irrelevant.
I work with MS patients who are in far worse condition than she appears to be.
The article isn't about her entering a competition to see who's got the worse MS you know.
So I don't know why you think that comment is necessary.Posted 4 months ago # -
MS goes through the whole spectrum of outcomes, impairment levels and routes. For some MS gives them very little bother, some are pretty much gubbed instantly. Saying that she has MS is hardly a pinpoint indicator of her quality of life.
Is it too much to wonder about how her MS effects her before making a judgement on a brief story in the media?
Think about your response.
Posted 4 months ago # -
Surrounded By Zulus - Member
I work with MS patients who are in far worse condition than she appears to be.I'm married to someone with MS who sometimes appears to be in a far worse condition than the lady in the picture, but that means nothing as if she has Primary progressive then she could get much worse very quickly.
I'm still not sure what your trying to prove with your line of posts
EDIT
I started my post before you replied but got sidetracked by work!
You have sort of said the same as me about the huge range of MS suffering, As I have said before for someone with PPMS she's doing well if she was diagnosed in 1995 & appears not to have suffered much cognative decline.
Posted 4 months ago # -
she could get much worse very quickly.?
Merely pointing out that where MS is concerned there are no definite timescales to anything.
Posted 4 months ago # -
You have sort of said the same as me about the huge range of MS suffering, As I have said before for someone with PPMS she's doing well if she was diagnosed in 1995 & appears not to have suffered much cognative decline.
Seems to be doing very well, which is nice to see. It's a horrible illness for both those who suffer it and those who care for them.
Posted 4 months ago #
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