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PPMS Rant! Folks should know better!!!

Someone close said something & my blood boiled. They said. “My friend with MS for 20 years, just got a job & now contributing to society. Maybe you should get a job.” said the person with no job, who inherited 3 houses + cash.

They’ve had MS for 40 years & it hasn’t changed their life. Yet you (me) wont try medication. They never had a job in their life & had a relapse 40 years ago, then got married, travelled the world & had 3 kids.

Use cannabis & your MS will be cured. And they conveniently grow it in their greenhouse.

How can you drive & they’ve had MS for 40 years & never had a driving lesson.

I usually pay no attention, but the digs are getting so frequent & obvious.

It seems the more I push myself & do things. The more eyebrows raise.

Time for a steak dinner. Common sense needs treats.

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Aww Terry , I hurt for you …what a silly thing for them to say and so disappointing that they should have known better especially being close to you . Dont let them get to you , it’s easier said than done but the people who know including us on here are full of admiration for your perseverance and strength of character. I’ve had things said to me and have had to bite my tongue especially if it’s from people close to me. Take care and keep on inspiring us . I’m always wanting to copy the fun things you do. Michelle and Frazer xx

Dont let them get to you.Over the years i have had all sorts of stupid thoughtless comments that’s made my blood boil.Even some from my old friend who’s mother had it bad.She said to me only last week one of her colleagues at work looks after herself properly and exercises so her MS isnt too bad,implying that if i exercised mine wouldn’t be lol.

I have an ex friend who had MS that never hardly affected her and she walked miles every week and she just could not understand why i couldn’t walk a few steps!!! she thought i didn’t try enough lol.No one has a clue what we go through,do they think we like being disabled and fake it,im sure they do.Rise above it as hard as it is.

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Thanks for the sensible comments.

I’ve got to a point where the people who wind me up, I give it back ten fold.

It seems the current global problem, is causing pointless reactions, that effect normal life.

Off to the park on my trick scooter, for some fresh air & contemplation. Autumn is setting in & a good photo opportunity.

Terry the nature trecker.

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Terry I feel for you. I think we all have or know someone who makes remarks they don’t think about but really hurt us. They’re all just ignorant when it comes to ms and how it affects us all differently. Even people close who we think we’ve explained it to can be hurtful but sometimes we have to make tactful decisions to stop the discussion and relax. Music heals much for me. I have playlists that can calm me.

Rant away Terry, invisible illnesses are the hardest to cope with.

Cath

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Hi Terry, oh yes…of course we live like this cos we have fun in our snazzy wheelchairs, love being pushed over the toilet while we fart at carers, love having our pads changed like babies, love the benefits that allow us to cruise the Caribbean, eat at posh restaurants every week and generally live the life of Riley!

Those ignorant people who say stupid things to us, have no idea how great it is to have a chronic illness like MS.

Now…back to reality and taking the tablets!

Boudsx

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Say nothing and walk away.

That will annoy them more rather than giving a reaction.

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People can be so insensitive Terry, if you can rise above and ignore their ignorance, easier said than done I know.

Pam x

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Hi

If the person is close can you not let them know how this has made you feel. May help put your relationship back on track.Maybe there are things they don’t understand

Hope of help

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Welcome back Jackie Vanilla.

Good to see you.

Boudsx (now 68!)

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My brother thinks I am lucky as I have the "mild form " of PPMS

Terry

The self-opinionated non-entities of the world deserve no time.

We are the real deal.

Snore

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I understand Steve. Some days our skin isn’t thick enough.

We have our own problems & get dumped with everyone elses too.

When having a polite conversation, my guard has been down, once we start joking banter. That doesn’t last long.

10 weeks to Christmas.

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Hi, I was reading through the topics and just want to agree that some people really do get on your nerves. I’m not the one with MS but care for my husband who has PPMS. I get the usual “you know he’s only going to get worse”, someone asked him once “what’s wrong with you then, can’t you walk” when he was on his scooter. People should think before opening their gobs! Another one is “he looks ok doesn’t he”. It’s so frustrating because people don’t see the struggle he has. He can’t walk very far, balance issues, double vision, his short term memory is very poor, struggling to process information. He was diagnosed in 2017 and hasn’t worked since and had his driving licence revoked, he has gone through a lot and lost so much from going to work every day to being stuck in the house, but he never complains. Our life has changed so much from going on holidays etc. to not having much of a life. Sorry for the rant I feel better now!

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Well we know what we call this person my sister is the same she said to me you looked after yourself for years and look at you now