I could scream

Primary progressive MS
1

Hi everyone

Hope today is being kind to you all, and sorry I so need to vent to people who truly understand.

To cut a long story short, things have been difficult for a while, and the MS nurse told me I have clinical depression and has put me under a psychologist, who I might add both have been lovely.

My hubby had 11 days in hospital in December, and this really highlighted just how MS has disabled me in lots of ways. One being when I go out the door, although I have a ramp, I cannot reach it to lock it, unless I go sideways on the ramp, and 2 wheels of my wheelchair are not on the ground, really scary, as you can imagO e.

Ot said a disabled facility grant might help, so he came today to have a look, and wants me to have a new much larger ramp complete with handrails, all of which would block the driveway, meaning my hubby would no longer be able to put his car in the garage.

I tried to explain that my hubby had been my full time carer for lover 20 years, and during that time had sacrificed lots, so I was not happy with his idea, as Phil enjoys tinkering on his and others cars in his garage.

To add insult to injury, he then proceeded to tell me he knows what I feel like, cos his second cousins wife has MS, and she gets upset easily as well. People like him just makes me want to scream, and I do appreciate I seem more teary at the moment, but I am fed up of people saying they understand, when they clearly haven’t got the foggiest.

If you have managed to stick with this rant this far, thanks, and I am sorry its so long winded, just needed to get this off my chest.

Pam x

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Sorry to read of your troubles Pam. I sort of get the drift. It’s like folk from a working mans club knowing everything after a few pints & getting info from the local window cleaner with a PC. To many experts.

Since getting told I have MS, my brain has been on overload. I have learned from others with MS, what problems to be aware of. We still can’t escape the wisdom of some. They turn into a mob, if you try to explain. The fact we are all different goes out the window.

Take it easy out there & don’t stress. I’m constantly told, there are people, animals & plants far worse off. It distracts & makes me think. We are all learning.

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There is nothing worse than being patronised which is how I would have felt had that been said to me. Of course you don’t want to block the driveway, my garage is nothing but a store room but I wouldn’t want it blocking either. I’m sure there must be something else that could be done to make access and exit easier for you hopefully someone here will be able to suggest something.

Well done you for agreeing to see the physiologist hopefully that’s the first step towards coping with you depression. It’s the little things sometimes that tip us over the edge and the OT’s suggestion and thoughtlessness will not have helped.

Sending virtual support, all here will be in your corner fighting with you.

Jan x

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Patronising git!!! No wonder your upset. Stick to your guns, there must be a compromise somewhere.

Why is everything a hassle nowadays?

Sending ((( hugs )))

Mags xx

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No wonder you’re pis&ed off! Honestly!!!

I would think it’s really important for your husband to still have his space to work on cars!!

They just don’t get it do they!!!

Stick to your guns. You need a way to lock the door with ease and at same time NOT compromise the garage!!!

Don’t let the bas&ards grind you down.

Pat xx

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Psychologist is what I meant.

Jan x

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I’m not surprised you feel like screaming! I know I’m terrified how I could cope at all without my husband, I have severe wobbles just trying to make it out of the driveway on my own. It does make you vulnerable when you rely on someone else so much. I used to be so independent.

I can totally understand why you’d need to rant. It feels like insult to injury sometimes

hugs

Sonia xx

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Hello Pam,

That is terrible! How patronising, Why do people feel that they can treat us that way? Lee works in additional needs for Guide dogs. He was appalled by a similar situation, one gentleman that he was working with, had ms and was having adaptations done and the Disabled Grants people were trying to insist that he had a sink in his lounge, just because it was easier for them.

Don’t let them do anything that you don’t want , they are supposed to make our lives easier not harder.

Michelle x

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How awful Pam, I’m not surprised you’re so fed up! Its SO frustrating when people think they know all that we go through and they clearly don’t have a clue!

As the others have said…stick to your guns and don’t let the bu66ers get you down.

I’m so pleased the psychologist was nice …it makes a huge difference if you feel they understand.

Thinking of you and sending hugs,

Nina xx

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Oh thank you so much for your kind words my lovely friends, they have given me so much comfort and boosted my spirits no end, and also made me realise I was not being over sensitive.

I have had a very purposeful morning, I rang the OT and asked them if they had any contact numbers I could ring for fitting a remote locking system, to see if we could afford one. She very kindly said she would make enquiries and get back to me. I also let the Environmental Officer know that I was adamant I would not be doing this idea of blocking the drive so the garage could not be used.

So I now wait for round two, your comments helped to give me strength, so thank you all.

Lovely sunny day here, not too hot though, hope you all have a good day.

Pam x

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thats good pam,pleased you had a purposeful morning,why do people think they can treat us as if we are stupid !!!

Its been nice and sunny here today,not too warm, just nice.

J x

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Well done Pam! I know how hard these calls can are…be very proud of yourself!

Good luck with round two!

Nina xx

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