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Brief rant; apologies if you've already read on PP board

To the whole effing world; My MS does NOT, I REPEAT NOT!!! “come and go”.

Relocated recently and am, weekly, getting comments from half-wits who “know about someone with ms” whose symptoms just, grrrr alert again!!!, “come and go” (can’t find roll eyes ffs giph, as would be adding about ten of them now…)

Seriously though; can’t we just take the MS out of PPMS? Just call it PPND (neurological disease) or something. Might stop the half-wits saying things like; ‘oooo, I’ve heard about that, stay positive and you might find you’re OK to go running soon’…

My head needs to find a brick wall to knock down.

(Apologies for rant: hope you’re all OK. Haven’t been here for a while due to serious life-changing move).

Take care, CP

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No problem. Even when I was RR, I’d get completed f’d off with people saying, ‘oh do you have good days and bad days?’ ‘No, I bloody don’t, I get shifty months and months followed by some OKish days’. And now I’m SP, I still get asked the same question, I virtually live in a wheelchair, can’t do an f’ing thing properly on my own, have an SPC and a stoma and I get totally fed up with it.

And you’re right, PP shouldn’t have the same name as RR, no matter that we share some of the same symptoms. If you start out progressive, you shouldn’t also have to answer thick questions about ‘good days’ and when you’ll feel better.

Sue

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All sounds so familure even the even my f***ing gp sounds like this when he tells me it will improve with a little more pain killers .

Then he sends me a letter telling me I will be getting cheaper pregabalin with my next prescription but it will do the same job

So I am not worth the good stuff now

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I just tell people, including my mother, no good days just bad days and worse days.

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Ditto to all the above. Although I do have the occasional good day. But it’s all in my head innit?

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My GP told me (I’m PPMS) that I’ll have good days and bad days when I was first diagnosed - so if even GPs don’t know the difference, what hope have the general public!

I agree about the name, though, wasn’t the old name for PPMS the far more appropriate “creeping paralysis”. (Who knows what a sclerosis is when you don’t have to???)

Which sums mine up.

Btw, good to see you back, CP.

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Abso chuffing lutely!! My ex GP (although I was hoping that the numpty would by now be six feet under, I saw the swine last week in the shop) seemed genuinely surprised to see me ‘at the doctors’ as he always maintained that people with MS are “lucky” because of the associated euphoria that SOME people with MS have. I really think that his ‘skills’ are better used in his stamp collecting. Grrtrrrrrrrrrrrrrrrrrrrrrrr.

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Lets call either of the progressives PND.

Progressive Neurological Disease

3-Letter acronyms are easier to remember than 4, and the public are used to them.

Geoff

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hiya

i find that whispering ‘ms is only contagious if you are within 6ft of me’ usually shuts them up!

ellie

ps i am well aware how annoying stupid/ignorant people are!

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they say ‘I know exactly what you mean when you say you’re fatigued’ aaaaaaargh - no you don’t, you haven’t a f’n clue!

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How are MSers represented in the media?

The BBC always shows MSers who have RRMS running the London Marathon, or seeking ‘Access to Work’,

or people who can drive - able to work - but having their mobility cars taken away.

There is an argument for mentioning those of us with Advanced MS, who are no longer on DMD,

who are invisible, because we are mostly housebound and dependent, so unable to be useful as

poster boys and girls for government ‘back to work’ propaganda.

That’s where their erroneous views come from - the BBC.

Fay

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Bravo Fay!

ellie

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CP rant away, there are so many halfwits who need a verbal slap. My favourite at the moment is a neighbour who asks “are things getting better?” despite being told I have a chronic progressive condition. The line between "well meaning and “blinkin’ annoying” is pretty thin. As for people understanding my fatigue, I would say that I hope you never experience it for yourselves. There have been times when I have wished others to know what it feels like (just for 10 minutes) before opening their gobs. Thanks , I needed a bit of a rant myself. Mick

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hiya cp

nobody ‘gets’ u! on here we are more understanding hopefully than joe public but i have been loitering around here for over 10 years (with no intent!) and i have witnessed some ‘great’ discussions/debates/arguments! i believe thats cos this is a safe place to vent any frustrations. that also allows ‘regulars’ to be protective of somebody saying something that maybe we dont want to admit!

if we all sat in a room talking it would be much different-facial expressions and sense of humour would be apparent. but we are not and cant so we can only make the best of what we have got eh? i have met in person some cracking folk through this site and i treasure those times, especially those who are no longer here to share their experiences.

enjoy your day all-however u spend it!

ellie

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Yes Fay, the BBC spread the views, but the MS Soc start some of them. I am fed up with the inspirational articles about the wonder woman with MS. You know the sort of thing …

Takes the kids to school, nips off and climbs Everest,comes home and bakes a cake, swims the Channel, picks the kids up, gets a three course meal ready, etc.
I was doing well in competitive photography, until I could not stand without support, and the intention tremor in one hand made it hard to change lenses.
Like a lot of people here, I cope on a day-to-day basis - but only just.
I cannot carry a cup of coffee from the kitchen to my desk without using a four wheeled trolley - that means going back to get the Zimmer frame.

No-one will feature me on a front cover, yet there are a lot of us here coping with far worse problems than mine.
SPMS? Whats that?

Geoff

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spot-on Geoff. My 2 particular gripes are – the folk who despite having m.s. have a ‘wonderful sense of humour’ and those folk who raise money for us by doing things we can’t. Hang-gliding anyone?

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The 40,000 Unmentionables

Yes Geoff - no poster campaigns for the unmentionables - unmodified by DMD.

Fay

PS. Just bought a cup holder for my powerchair.

No time for abseiling down The Shard for me today.

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I suspect people with other disabilities find media portrayals of para-athletes, ‘plucky fighters’, marathon runners and other inspirational examples of how they manage to overcome the dreadful symptoms they endure and still manage to raise the kids, work full time, volunteer for charities, keep fit, and still have time for a marvellous social life.

And the media does include specialist publications aimed at people with such disabilities, MS Matters can’t be alone in promoting the marvellous ways some people manage their disability.

Gits.

Sue

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I can see Sue’s getting angry, and so are we all.

It’s the double standards that make me angry - if there are pictures in the press

of slim, gorgeous young women - a PC campaign will soon start complaining about the

media’s “unrealistic expectations” - no such PC campaign exist for the sick and disabled

though.

Why not??

There should be a campaign against unrealistic expectations of Advanced MSers

called: NO I CAN’T!

Fay

The articles about people doing amazing things despite MS make me feel so inadequate that I’ve stopped reading them. I know the articles are meant to be inspirational, and to show that MS won’t bring life to a grinding halt. They don’t inspire me because I wasn’t able to do some of those things even before I had MS. Some of the simple things I used to enjoy, like long walks, aren’t an option any more. I’d love to do the Race for Life in memory of my in-laws who both died of cancer. I visited the website. It says that “5km (just over 3 miles) is an achievable distance for all ages and abilities.” Sure it is, if “achievable” includes taking hours to do the distance with frequent stops along the way.

I used to have a next-door neighbour who did understand about rough times and fatigue, bless her. I miss her and wish there were more like her.

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