worst thing

I was musing this morning and said to my hubby,

What do you think is the worst part about me being disabled?

He replied, You.....not being right, I mean why you?

I said to me it wasnt being a wheelchair, I dont really mind that. It`s the having to ask for so much help this really pisses me off.

What gets your goat more than anything else?

I`m not usually one for putting negative posts on, but ignore me if you like, no probs. Just feeling a bit nhelsyszcx…is all!



Hi Poll

I am not going to ignore you, we are all in the same boat paddling about…sometimes round and round in circles!

I am with you, I don’t mind using a chair at all, I see it totally as a means to an end, but I so hate asking for help, not being able to jump in a car and have a nosey round the shops, or going swimming, or anywhere really. My hubby. Always says you only have to ask, but he hates those sort of things, and I feel like a nuisance.

Oh for being spontaneous and not having to plan like everything is a military operation…but we are still here, things could be worse, even though it’s not how we all planned.

Chin up girl, take care.

Pam x

Ta Pam, think I`m having a bit of pfaff day!


You’ve got this Sunday’s nhelsyszcx eh? I wondered who’s turn it was.

I’m with you Poll. I hate being dependent on my wife. I try to be as independent as possible, but some things are impossible.

On the other hand I can help her wash her hair, like this morning. And I dry the back of her head, as I can do this sitting. So that makes up for all the other times when I have to ask her to put my socks on.

(Part of my interminable sock problem. New readers, please refer to Brain Fog thread for details.)

hi poll

i will not ignore you either!

i have always said that its harder for those that love us watching us struggle. whether that be other half or parents or siblings.

in some ways i think its easier not to have another adult around trying to help me! kids are helpful without being too bossy!

an example! i fell this morning-kids were still zzz so i lay there for 1/2 an hr. i wasnt hurt but giggling took over! i had been trying to do something that i knew i shouldnt have attempted! its that fine line between independence and stupidity which i have crossed several times! will i ever learn?!

as we know there are no right and wrong ways to cope with any long term disabilty-only your own way.

thanks for sharing poll-thats how we all decide on our own options!

ellie x

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me again

i forgot to say what gets my goat!

i was waiting on a bus when a car parked half in stop and rear out. i said-excuse me-i am waiting to board the bus which is here very soon. the reply-f you, i have a blue badge and can park where i like!

i didnt say anything-i was gobsmacked! i guess being ignorant doesnt change if u have a disability!

ellie x

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Thanks for post poll,Pams answer i could have written myself only to add when my husband and i have words i want to say go to hell and go for a drive but then i remember i cant drive anymore and he will have to put my shoes and socks on first.You’ve got to laugh and we usually do.Thankfully we don’nt have words very often, hes a good man and i am lucky to have him.Take care all of you and try and keep smiling. Jo xx

Hi Boudica,

You know, it’s funny that you ask that question, because that’s been playing on my mind just lately. Yes, I’m stuck in a wheelchair and to be honest that’s not too bad, but like you it always having to ask someone to give you a hand. Because my hands are not very good I am always dropping something and because I live alone I have to wait for the carers to come in and pick things up, I think the remote control is the worst thing to drop! At the moment I’m seeing if I can arrange for specs savers to come and give me a home visit to get my eyes checked because I haven’t really got somebody to get me to spec savers and to be honest that really cheeses me off.

So, yes, the worst thing for me about being disabled is constantly asking someone to give me a hand and what makes it worse is that I live on my own.

I don’t like to be miserable and negative but I do have to say that for the past few days that’s exactly how I have been feeling.

But, hey, Wimbledon has been great :slight_smile:


Sometimes Polls it’s okay to have an “off” day.

Farr13, you’ve got it in one for me. I’m very lucky to have a husband of 30 great years and he is pretty damn wonderful but…

Sharing our lives in close proximity 24/7 can cause a little cabin fever sometimes. We can and do get peed off with one another. That’s when I miss my driving the most. I used to jump in the car and go shopping alone, browsing for hours to my heart’s content, in all the shops he wouldn’t bother with. Or meet a friend for coffee under my own steam. Now I have to ask to be driven to the doctors, dentist, beautician etc. We had one too many stressful grocery shopping expeditions last week that broke the camel’s back. Online for that now. My how my world has shrunk.

The other worst thing is having to get help to put my socks on. 12 months later I still find tears rolling along my nose as I lean forward while he puts them on.

Hi poll this morning I have my ocupational therapist coming she is bringing the rep from a stairlift company to measure and price for a star lift

I feel so queen inside so it’s come to this what’s next?.I am glad I’m getting it my wife will use it to she is disabled to

OK folks have a good day george

Morning all :slight_smile:

ive just thought of another worst thing. After being dressed this morning by my carers, I’m now sat in my wheelchair for the day with a wedgy!!! :smiley:

Jane10 X


I could be more spontaneous but experience warns me otherwise.

The wheelchair has been liberating even though I’m at bottom level. The toilet is manageable as long as I’m in control but what really gets my goat is the assumption that I can’t do anything. I can vacuum with the dyson, I can cook for England and I keep a tidy house. There have been people around me who’ve passed me by when needing advice and they certainly should know better. Then there are people who have been too caring as if it gives them brownie points. Then there’s getting on a bus to a full audience. You get my drift? Yes, it’s people; not all of them. I have brilliant friends.

I’ll stop now as I’m getting a bit red.


What get’s my goat, is the folks who pretend they have a health problem for sympathy.

It’s usually to claim PiP & whatever else their excuses are.

Then they have the nerve to spread rumours, I am faking my condition, when they get no joy. It’s the lazy folks who think MS is a walk in the park. When that’s something those with severe MS yearn to do.

I also detest when folks visit & put price tags on everything they see. It says jealous scrounger to me.

They’ll take you for a week away, so long as you pay for all their costs & rub your nose in how healthy they are, doing all the things you want to do & hate when you can do everything they can’t. That tends to be a lot.

It’s actually an endless list.

Trying to ignore the soul thieves is quite tough, in a world of dim wits. They infect others too, with their fork tongues & bull crap.

They know what you do, because they stalk you, for answers to their insecurity & when they’ve stolen all you think, you never see them again. Until you show signs of knowing other things.

Get a life of your own.

Eee, I didnt expect so many replies! And I did feel a bit guilty for putting a moany post on and nearly deleted it.

Glad I didnt. Cos it proves how even those of us who usually try to keep everyone upbeat, needs a whiny day now and then.

I`d just like to comment on a few posts…so bear with me…

AD…were you ever a Saturday girl in a hairdresser`s? Take better care of your sox!

Ellie…sometimes our fellow disabled folk can be the worst offenders and get us lovely people a bad name!

Jane…I dunno how you manage living alone, but you do and that`s a credit to you chuck.

Scudge…re the diagnosis lucky dip…I`m still no wiser about why I cant walk, wee and poo myself either…not saying you poo yourself…but do you? lol!

Popps…I recently got myself a car…I cant drive it, but my carer does and those little outings without having to get hubby to take and fetch me are heaven sent

Terry, I know lad, you`ve been through a lot…but keep soldiering on yeh!


cheers everyone for answering…back to that stiff upper lip now…if I dont fall over it!!!



But, I bet he did.

Yeh, I bet too!

That was a really quick reaction…but if a car did come in the road as well, the lad would`ve been toast!


Love this thread thanks Polls.

I spend time asking why me why MS but most of the time accept this has decided to share my life with me.

I hate the loss of independence the most, my sight has been so badly affected I now can’t see to drive so have to be taken everywhere. Also my hubby is very good but just occasionally we have words and I miss being able to storm out and slam the front door!

anyway thanks again for this thread it has made me smile and realise I am not alone in fact there are lots who feel the same virtual understanding!

Kat x

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Hiya, like you, Polls, the worst is the asking, for the littlest everyday things that before, I took for granted, the noose I’ve become around her neck, the restrictions on her, also the loss of not being able to play with the grandson, it is harder to bear these than all the worries of today put together, Brian

Hi Poll,

I hate most that it steals from me on a daily basis, it snagged my right leg bit by bit, not just the ability to move it at will but the temperature control etc. and the good one is on the way now too. It’s been stealing my vision too, I wear an eye patch just to try to concentrate and abandoned books as my focus just won’t come back. Then there’s the whole cognitive arena - unable to remember words, where I am, what time it is, what I was supposed to be doing - i’m forever getting told off for not tellng him stuff that’s important but tell him crap at least 3 times over - I want m brain back!!!

Sorry to rant Poll but yes, the bad days are rubbish.

Take good care hun

Sonia x

Aww Poll ’ i just read your message, its definitely not being able to drive and having to rely on people to drive my car…i hate it so much , im getting my new motability car on monday next week , but i wish i could have my old battered white van back i loved my freedom, we sold it about 3 years ago…well i wasnt going to drive it again …its so sad i had such a good time …oh well Ben my son tells me that a car is only a giant wheelchair.

Michelle and Frazer xx