Diary of a benefit claimant.

Yes, you could start a little growing project, perhaps?
A mini garden; I'm sure you'd excel at that kind of thing.

The plant name, not you, stardreamer

It also has an old plant which has popped back up in the reused soil.
Elephant ears!

https://www.gransnet.com/uploads/talk/202208/medium-48091-16604283114894165733724302574335.jpg https://www.gransnet.com/uploads/talk/202208/medium-766584-16604283371187401194467264630269.jpg

This was grown from the top of a pineapple.
It's got too big to manage in the kitchen anymore.

A bit of a monster.

I suppose one could set it out at doll's house scale (one inch to the foot) and use small kitchen wall tiles as paving.

And a sundial.

You can have mini garden of kitchen plants, which you pluck, and they will regrow.
I used to love my tiny bits of gardening, but even that is proving quite difficult (especially without a watering can, now!)

There are things I never thought about.

Like if one wants to grow some houseplants and even the small bags of seed compost are too heavy to lift now. Years ago I picked up the large bags with ease. But now is not years ago.

They just don't seem to sell 2 kilogramme packs of seed compost. If they did I could buy several and get them in one at a time.

I wonder if such a product would sell well,

I can imagine the idea being dismissed as "niche" but I just wonder if there could be a huge market for it.

So I bought a growing mint plant from Tesco, and it was delivered with great care. It is in a plastic pot in some seed compost. Tesco sells them with the idea of people picking the leaves off and using them in cooking. But I bought it to be a houseplant so I have not done that at all. It is thriving.

wellbeck it's due to a mutant gene which effects the brain receptors. There are 4 sorts mine is caused by SLC6A5 mutation. Both my parents had to be carriers for me to have it. It was first noticed in 1958 the year I was born. A Dutch family where the first to be written about in 1962 the whole family had it. It's complex and causes jerking limbs, seizures chronic pain,memory problems , difficulty speaking at times and what they call brain fog where your mind just goes blank for a few seconds. Balance problems and I fall a lot. Clonazepam stops the jerk limbs and seizures. Seeing videos of babies with it made me cry also they can stop breathing for a few seconds. Depends on gene mutation. The site is a closed site and world wide . It can only be detected by genetic blood testing. That's why all the MRIs ,Telemetry etc never showed anything.

It's only because I moved to the north west and have a wonderful neurologist he didn't know what was wrong with me but thought the Clonazepam would help . After 32 years it was like a light switched off. No jerks or seizures for 2 years. He always does genetic tests on patients he doesn't know what is wrong.

All my limbs and muscles are damaged due to falling all my life. But it doesn't stop me living a full life. Just have to do things my way. There are some things I can't do but I get around it by hiring people or my daughter helps me. Or I don't bother with it.

good on you, Whiff.
when i looked up your condition and found it was also known as startle disease, i imagined a patient being told the full name and exclaiming, i've got what ! ?

Nobody now's what will happen to them at any age. I have problems by with my limbs all my life . But believed doctors who said it was growing pains and I was clumsy. My parents believed me . My husband I met when I was 16 he knew about my limbs but it didn't bother him . He wanted me. As the years when by he joked I was damaged goods. But my darling husband was always there by my side. I went to bed aged 29 mother to a 4 year old and 6 months old. And woke in agony and unable to stop my arms and legs moving. Ended up in hospital for 3 weeks.

When I came out my darling man just said we alter our life to suit what you can do so we can be a normal family. Our children never suffered because I couldn't do some things. In fact they grew up understanding people have problems and limitations so did their friends.

I have never called myself disabled but doctors say I am. Over the last 34 years I have met people worse off than me. But I know I am disabled. It doesn't make me angry as it doesn't define who I am. Because I can do things just have to do them my way.

The greatest sadness in my life is my healthy fit husband got cancer and died aged 47. But I promised him a lot of things as my darling was very wise and knew what I needed to live without him. The main one was live the best life you can. And I do.

Having my diagnosis in April has helped me understand why I am like I am . And found a group of people with the same thing . Also I understand what my parents when though with me as a baby and young children. Because of them and my husband's love I can face anything. That's why I not going to stop fighting to get PIP.

We certainly don't want any of those type of judgements, you're right.

I know you haven't, but please resist any temptation to use the word "fighting" in the title of a new thread.

We don't want some stroppy official deeming anyone aggressive by seizeing on the word 'fighting' and forcing it out of context, do we?

Oh, oh, oh, the claimant became aggressive.

Exactly that, stardreamer
Even "fighting for" and being awarded some extra money doesnt take away all of the problems.

Yes, I think that is right, no matter how kind-hearted a fit and healthy younger person is, until one actually has a job sometimes getting off one's bed, until one looks at the post on the hall floor and "prepares" to try to pick it up, until one knows one cannot just have X delivered to one's doorstep now because although one moved such things with ease years ago, now is not years ago and one cannot move it now, until then, can anyone truly appreciate what it can be like getting old for some of us?

Thank you, wellbeck.
I have been "triaged" for a care assessment and put at the bottom of the list in terms of need, apparently.
I'm sure there must be people at absolute breaking point though, so that is fair enough, I think.
Hence the fire alarm, I think.

At least i won't burn my flat down while I'm waiting.

Ah, yes, fair points, well made, stardreamer.

Disability chat does sound dreary, I suppose.
I wouldn't click on it!

I'm glad it has helped people, but I'm afraid my reason for starting it was less altruistic, originally.

It's a big bonus, though, that it has helped me, whiff, and others.

It is nice to be able to say things which are taken on board by others as genuine issues, and not just "poor me" moans, and it does show that beneath all the layers of red tape, there are still human beings, with challenges that others don't realise (me included in the don't realise group, and that is despite working with disabled people for years!)

dear MissA, not sure if you have already said, but have you had a care needs assessment.
it seems obvious that you need some help with safely washing, dressing etc, maybe meal prep too.
as you used to work in care, you will know the system.
but it takes a while to swap places, so to speak.
good luck.

MissA just so you and all on this thread you have all helped me more than you will ever know. Point is we say how we are feeling and if we need help and advice it's freely given here.

I can say things I know I can't voice in person. But here I am understood.

I will follow you on whatever thread to you start. ???

I am glad it has helped you.

However, it has helped others too.

And the ones we know about are only the people who have posted. There may be many more people who have similar problems and this thread may have been very helpful to them too.

If I may say so "Disability chat" seems a bit like let's all sit round and have a moan.

Yet this thread is about finding out about things - benefits, equipment, workarounds, as in not being able to do things like years ago, so how can I do it, or get it done, now.

For example, if someone has a walking frame, and needs a taxi to go somewhere, how are taxi drivers about facilitating getting the walking frame there as well as getting you there?

Does one need a special narrow walking frame to enable it to go in the boot of a car?

Will a taxi driver see you back to your home or do they want to leave you at kerb side?

What happens if you need a taxi to the doctor or hospital, will a taxi driver see you in safely, or not?

Will taxis do there, wait and return or do they take an attitude of each trip is one way and "Ring for another taxi when you want to go back!" Which is easy for someone fit, healthy and in his thirties to say, but awful if one is in a vastly different situation.

Please do not underestimate the value to others of your thread.

Oh I don't know.
I havent thought about it really, but perhaps let this one lock?

Maybe it will have all run its course, and there will be no need for anything new?
For me, it just encourages my bad behaviour (going on about myself and my ailments, when it's become clear others have their own issues they are gracefully and quietly managing)

MissAdventure

I suggest Miss A is a boring old fart.

No, I think just "disability chat" or something like that?
You could do a link to the beginning of this thread, for those who find themselves needing financial information, and the new thread could be more generic, because it is just as useful to be able to have a sounding board for bouncing ideas with others.

Fanny, I knew I had seen a picture of a bath chair, somewhere, that someone here had.
Thank you, that is it.

Yes, I will gladly add a link for you.

Are you going to wait until this thread gets to a 1000 posts and locks up or are you going to start the new thread before then, such as now, to get things rolling?

I suggest Miss A is a boring old fart.

No, I think just "disability chat" or something like that?
You could do a link to the beginning of this thread, for those who find themselves needing financial information, and the new thread could be more generic, because it is just as useful to be able to have a sounding board for bouncing ideas with others.

Fanny, I knew I had seen a picture of a bath chair, somewhere, that someone here had.
Thank you, that is it.

MissAdventure

Good points.
Just in case seems like something I would do.
We have a pretty good charity shop here that sometimes gets mobility aids in.
Or I could look on Ebay.

So, can you contact them soon please and say that if they get any mobility aids in, you are very interested?

If they know you are interested that may be to your advantage if they get one in.

I'm not saying you would, but I suggest not asking for "first refusal".

Since I gave up driving I had, pre-pandemic, several people turn up and ask if I want to sell my car.

I always say "No thank you".

Some accept that, some are even apologetic for having asked and I say that's fine, but some then say "I'll give you a good price" so I have to politely decline again and say I don't want to sell. Some accept that.

However, a couple of them say "If you change your mind about selling, can I have first refusal"?.

They have been known to get somewhat angry when I politely decline.

But what puzzles me about it is the phrase "first refusal". It sounds so downbeat as if they just want the chance to say no they don't want it.

So be positive, "if you get any mobility aids in, could you possibly let me know please?"

MissAdventure

I'm going to have to start a new thread called "The many ailments and challenges faced by miss A at this rate!
I can bore everyone to death keeping them up to date.

Well, as this thread has 951 posts before me posting this, you may need to start a new thread soon.

However, you don't need to call it

> The many ailments and challenges faced by miss A

Oh, no!

So how about we all pitch in with suggestions for the title of the new thread?

Here are a few to get going.

Miss A moves forward, Yay!

Miss A demonstrates her optimism

Miss A an example of courage against adversity

MissAdventure

I can't afford it.
It's that simple.
Cheaper to buy some sort of aid (a winch, perhaps?) to lower me into the bath.

Rather than risk an accident, can you lie on your bed and bed bath yourself?