Negativity winning

I don’t know about you but I do feel a bit better after getting some of this off my chest !
Mick

:wheelchair: loos!!!

They drive me nuts. How does anyone expect a person unable to walk to use a loo with just one bar to help them stand?

And why put the flush lever/button/whatever out of reach?

Then there’s the handwashing problem - soap or paper towels out of reach. When they exist.

Plus baby changing tables, bins, highchair storage, etc. I’m sure were I the parent of a baby I’d be aggrieved at the ‘baby changing room’ being crowded out with equipment for the disabled. But since I’m not, bloody baby changing ‘stuff’.

I hate using public loos. That’s even when they are suitably equipped. I always feel like if I use a catheter in one I’ll be sure to get a UTI.

Sue

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Sue you do make me laugh in a good way, to know that it’s not just me… Don’t assume that I am a moany old woman please however I have found like minded Msers & it is so much better to voice trivia to real people who understand completely.
you and Mick both are great for this forum… Bloody MS gets you down sometimes it is unique and complex are two words uttered frequently in our world

I am a moany old woman and proud of it!!

If we didn’t moan people would think we liked being decrepit old (before our time) disabled MSers!

Sue

(I quite like Mick too, just don’t tell him, he’ll become unbearably smug!)

Dear Cruella,
Thank you for sharing this. I have my own version of this feeling ‘stuck’ and ‘what’s the point’ and as I’m new here I’ve just put up with it but next time it comes round (as surely it will) I’ll just try posting a description on the Forum to see if that helps.

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Hi & thankyou George
so yourMS story so far? If you feel like sharing,
Unburdening or even putting your own ms stuff down on a screen it helps & you do not need to press send unless you choose…

Hmmmm - I do not have the emotional literacy to be smug! My entire range is from Grumpy old git to Silly schoolboy, but I did smile at your comment. Moaning, like grumpiness and sillyness (provided not taken to extreme) can be useful. I feel reassured when I whinge here and then someone else pipes up and says “I know what you mean” It might not be tangible but it feels very supportive for me.
All the best to one and all from a blushy mick :flushed:

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Welcome to the forum George. Feel free to add your own particular kind of ‘normal’ whenever you have the need.

Sue

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How on earth can silliness be ‘taken to extreme’? Surely it’s the necessary counterpoint to whining and whinging?

Sue (making Mick blush :blush: is my main goal in life!)

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If you saw my WhatsApp exchanges with my schoolboy mates, you would understand extreme sillyness, not for public consumption.

Definitely blushing now.
Mick

Oh … :face_with_hand_over_mouth:

Dear Cruella,
Thanks for asking, I must have run (and edited) my MS story through my head many times and it contains a whole gamut of emotions. In 2013 I went to my GP to explain that my writing was slowing me down at work and he referred me to Neurology where I was very lucky to meet a Consultant from Greece with impeccable English and a friendly enthusiasm. By a process of elimination over the next year the diagnosis was confirmed (the well-trodden route of MRI, CAT, some eye thing designed by Mary Quant and the Lumber Puncture which nailed. I asked the Consultant where the needle for the LP went, she spun her screen round "Here, take a look at this image of your spine and I’ll explain.). “Blimey!” “Don’t worry, it’s routine”. Of to my local General Hospital (where I had spent 8 weeks on place during my RMN training). The hospital was built in the 1930’s from which I benefitted as there was a skylight in the ceiling above my bed the size of a double bed sheet so I could watch the sky while I was lying on my back and recovering. After signing any Consent Form I imagine there is a sense of the gravity of the situation. Anyway, my MS joined me life - work had continued throughout and I was 'shouting it from the roof tops in the office but nobody seemed to give a damn apart from a lady who
used crutches, she gave me an MS Society card.
A few weeks later our team of 6 were told that we would soon be a team of 4 so we were to be interviewed for our own job. Driving to work the day before the interview I stopped at a supermarket to ‘make myself comfortable’ and got back into the car when the number plate (or plates) of the car in the opposite bay had become 2, one of them on the bonnet and my feet had turned to concrete. The ambulance took me to A&E and I was in for 2 nights and then resigned from work (DOB 1/8/59) the next day . . there are more chapters and thankfully the Kent MS Therapy Centre is a 20-minute taxi ride away. Part of the summary is that MS got me out of a job that I hated and enabled me to access my NHS Pension [40/80’s of final salary] which is roughly my MS journey. I would love to hear yours and I expect there may be some overlap. Anyway, huge thanks for asking.

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That is such a friendly thing to say.

Stephen.

Hi George and thanks for sharing your ms journey wow!
& mine has unfolded like this
After GP thought I was just anxious me and self diagnosis with Dr Google help I thought I was classic ms at the time I was unfortunately proved right. After many years of tragedy involving other family members and I having been considered clumsy. ( lots of accidents involving falling) GP did a reflex test on legs which were “brisk” referring me to a neurologist. Skip through all tests incl LP officially diagnosed August 2016 with ppms aged 48
fell off cliff metaphorically not literally
To now 5 year’s forward, I was
Walking unaided to being a fulltime wheelchair user. Coupled with the dependance & bladder issues and all the un joy of being here. I am still hankering after the old me & life as it used to be. MS has taken away so much
driving walking etc and mostly my independence a biggie for me
Fortunately I have a wonderful man who has stayed and he supports me emotionally as we are both on this extraordinary journey together… Blah blah blah
Unused to not being in control and I really strongly dislike this. So positivity can be in short supply… You did ask :rofl:

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Life is a bitch, you have been handed a raw ****ing deal! This is for life not just for Christmas. Is this helpful probably not but you will cope, wally in the misery of it all.
We are here and surviving better than that we are here and know your frustration. Take care be safe, M x

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Thanks I think all of us in the MS club together have a **itty deal but then I see other stuff and feel I have no right to moan but do anyway
… Thanks again for reply forum.ms is helpful X

Yes I did, expecting a story of rapid adjustment as your is, something about writing mine down seemed to help. My tremor has got worse over the last 5 years. I found a diary yesterday, the writing was stylistic but clear, now I use a Dictaphone for quick ‘memos to self’ but thankfully people seem accommodating enough and use texts or emails. I arrange taxis by text likewise meetings or arrangements. I have become restricted to the house much of the time but strangely felt that the rest of the world has ‘joined in’ when lockdown began. Also have been super-cautious about going out although with this easing I’m branching out a little. The KMSTC has a pool - accessible to everyone - and I’ve booked for next week. The water is a notch above warm, it’s only waist deep but I love it taking my weight and supporting me.
Thankfully my ears are working as well as ever and although I’ve no appetite for music when I’m glum when I move beyond/out of that my favourite songs sound just as good, with Bluetooth connecting everything together George Harrisons’
‘I’d Have You Anytime’ sounds as good as it ever did in my Pre-MS life. There must be stuff backed up in here waiting for me to say it, I didn’t realise how close to the surface it all is. I’m hoping this is all OK to share. Stephen.

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Good on you! Adapt & change is something all Msers need to do because of our bodies
What I find so difficult to cope with is so much more pain than I expected… I’m practically a junkie now
Pregabalin Amitryptaline vit D over 50 multi vit & a happy pill + HRT patch what about you or anyone else and I am considering private stand you up wheelchair- Genie v2 but at 15k it is more expensive than my wav so I am thinking thinking thinking
But brilliant piece of engineering I loved standing up!

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My name is Sssue and I am a certified junkie….

Baclofen, Amitriptyline, Cloneazepam, Trospium (anticholinergic - bladder spasms - especially for the elderly!!), Alendronic Acid (again for the elderly with osteopenia, bone protection!), Codeine, Oxycodone (trying to wean off this as truly habit forming), Zopiclone (sleeping pills), Nitrofurantoin (anti UTI), and Omeprazole (for oesophagitis).

I am now used to getting letters from the ‘Consultant in Elderly Medicine’, due to having Osteopenia. And am on an anti bladder spasm drug also suitable for the elderly because I can’t take most of the drugs to help with bladder spasms!

MS is truly a disease that keeps on giving!!! After 24 years (it was my 30th birthday gift from an evil Fairy Godmother) I have lots of experience and lots of drugs.

Sue

PS George, anything you want to share is OK. It’s part of what this forum is for.

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Blimey Sue

A veritable smorgasbord of meds, hope they are doing a good job for you.
M

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