Greetings to those trapped by PPMS

Been thinking about why we’re in this situation & how we can get out of this ground hog day.

It’s mainly been down to others telling us, what we can & can’t do.

Told we can’t work by some & then facing the envy of those who have to work, giving us grief.

The catch 22.

I’ve tried cutting myself off from everyone I know. It just doesn’t work. They are like stalking trolls. Waiting for a chance to give their version of the situation. There’s so many of them, it makes us dizzy. They hide in every nook & cranny. Changing their views, like the weather, when their common sense kicks in.

They say, “if it was me, I’d do this”. They are not you!

Those of us, with this ailment, know our limits & my advice is. Ignore the do gooders & do it your way.

Get off the Hamster wheel & do what feels right for you.

We know now, what is physically possible in our reality. We have a situation, where their version, doesn’t work for us. So it’s time to put on that thick skin & just get on with it. And when you are feeling rough. Take that break & don’t worry what the prodders & pointers say. They live on a distant planet. An invasive species, that hitched a ride on a cargo ship & want to take over the foreign land. With absolutely no regard for the native.

Blind yourselves from their view & do what you can do.

After a cup of tea & a biscuit.


1 Like

Wise words Terry.

It’s funny. When I talk about “me” as an entity, the looks of suspicion boil into the eyes of the naysayers.

Why should I lie?

People stand in their own shoes thinking that they can see.

“What you want is…”

How on earth do you know what I want? I like my toast slightly well done but if someone gives me a pale piece I don’t spit it out or accuse it being carcinogenic. “Where’s your hat?” A common accusatory question on a sunny day. My response results in a tutting and shaking of the head. “My hair is my hat,” I say. It’s thick enough. “What about your sun-cream?” “For a fifteen-minute trip?” I went past the communal room yesterday and heard people talking about me. It wasn’t complimentary. Already I’m aloof and unfriendly. Just because I won’t play bloody bingo on a Friday afternoon?

STOP STEPHEN! I’ve had to turn the fan up.

Keep rocking Tez.

You seem to know where I’m coming from Steve.

I’ve been caught in a trap of trolls. The folks who blame everything wrong in the world on others, without taking one look at themselves. An existence purely based on their view of worth. The car polishers.

Whilst I’m singing away to Kate Bush, they’ll be going mental to something & asking. Why isn’t he on my wave length?

The question is. How long is the wave length?

Terry is tinkling a triangle wave. With a soft square wave, waiting to consume the room. IT’S SICK DUDE!!!

Hi puddle how you doing

Sorry puddle but my experience is much differant to yours but I might be a little older than you and now I am properly retired

My findings off the medical profession is that they are very quick to stab each other in the back never had two who could agree diagnosis, as for the rest family friends I have left they are fine , no trolls

Keep at it puddle you will become a legend

HB is keeping it real, in a world of chaos.

I don’t think the age or retirement status is the issue. Maybe I’m wrong.

Primary Progressive Multiple Sclerosis can affect all age groups & situations. We don’t want this condition. Nobody with any sanity, would choose to become weak & vulnerable. Especially in a world, where there’s no go zones for healthy people. And so much childish bickering, in governments that control peoples futures.

We should all be staying cool & taking chill pills. The none prescription type.

Enjoying this life & finding out how to change the outcome.

I’ve chosen to improve my health, because MRI scans say there’s something going wrong.

We can do no exercise & keep eating junk foods.

The common sense, should tell us to try other methods. No matter how alien it feels.

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Terry, being independent and autonomous (big word for a Wednesday) is the way ahead.

Sometimes I do need help; it’s often unavoidable and occasionally helpful. But we must be discerning and assertive.

Now I’ve moved, I’m back on the adult social care radar. This is a good thing. These people who go into homes and assess needs and provisions know what they’re doing. It’s good practical help based on knowledge and experience; not the random notion of a clueless neurologist in their shiny new office.

I resisted all help until I really needed it.

Think of it this way; if I want to continue being independent, I need support from the foot soldiers. Ramps at stations, lifts onto aircraft and discounted travel.

It’s all my choice. At the moment, I am a big fan of fans. Cool me you deities of spinning white plastic.


2 Likes Steve. I’m a BIG fan of fans myself. It has no comparison to the hose jet wash. In a different league all together.

I occasionally ask for help. Very, very rarely! It seems to escalate & be used as a way to blackmail. I never hear the last of it.

After helping out a drunk, walking the streets bare foot, the other day. I’m learning the hard way.

He thought he was moving in to a hotel.

Hearing folks who can’t handle their drink & whine about their issues, is never happening again.

He snored like a freight train & was 3x my size. The smell is still here.

Look after yourselves & keep cool.