Winter fuel payment petition

Trialia

I was too tired to stay on this thread any longer last night, so...

No, GlasweJen, I don't, but my cousin who does and myself once did a comparison to an objective pain level chart on how bad it gets, and the result was more or less the same thing - and her endo is bad enough that she's required surgery for it. My lumbar damage makes the whole thing a lot nastier than it would be if it were just the heavy periods and cramps that I had to put up with.

Shel, what makes you think no disabled people have to pay council tax? That only applies if you have middle rate care or above, and the DWP are very determined about denying as many people MRC as they can, even when they're entitled to it. My best friend had to go to tribunal for hers, and I would (even the Pension Service man who helped me fill out my DLA forms last time said I ought to be on MRC with my problems) - but I don't have the energy or emotional stability to cope with the appeal. It wears me out enough filling out the 39-page form to begin with. So I have LRC, HRM, and no entitlement to the severe disability premium despite the fact I can only just about care for myself most of the time.

In other words, it's more difficult than you might think to get the right rate of care component for what you need, particularly for those of us who are younger. I was lucky with my last medical exam for benefit because the examining doctor could tell I was in a lot of pain, but most of them can't. I don't blame them for that, as I've grown pretty good at hiding everything I can of it, but I do blame them for trying to get as many people on LRC instead of MRC as they can.

Also, seven-day-weekend... I usually don't get any of those things you listed anyway, except the very occasional chocolate bar (once a month or so). I can't cook meat, because I can't concentrate properly enough to do it safely.

seven-day-weekend

pipkin71 wrote: »

Poor girl!

I suffer with restless legs, although not to the extent you described sdw. I also have awful cramps and although quinnine has been prescribed for the cramps, nothing for the rls. It is a horrible thing when you can't sleep, can't settle because of it.

I'm glad you have found something that helps

Thanks for your kind words.

I have had cramps on occasions, although not usually and I can get rid of them with leg stretches.

Quinine sometimes helps RLS too. It is one of the self-help things I have tried before I had the medication (although it did not help me at all). Other things that people try are hot baths, cold baths, exercise before bed, no exercise before bed, cutting out caffeine, nicotine and alcohol, massage, running on the spot very fast, leg stretching..there are others and you have to find out which (if any) suit you.

The only ones that worked with me at its worst the last five or six years are hot baths, walking around, light massage and no caffeine after 2 pm. I don't smoke and alcohol or lack of it appears to make no difference.

I stress that these things only work very temporarily - if I have managed to calm my legs down through massage for example, they will be kicking off again ten minutes after I have gone to bed. Hot baths and walking around require you to be out of bed and active (and I don't have a bath anyway at my Spanish house, only a shower).

So you can see how disruptive it can be to your sleep and why I call my ropinirole 0.25mg my Magic Tablets as they enable me to (usually) get five or six hour's sleep at a time. For me that is wonderful.

The only other medication that (sometimes) works is codeine, but I don't like taking that as it is very addictive and has nasty side effects, but before I had my Magic Tablets I would sometimes take one after three or four nights of pacing the floor just because I was so desperate to have some sleep. I'm glad I don't have to have them now.

The Magic Tablets are called Adartrel or Requip (both the same, just different brand names). Maybe your Dr might prescribe them for you if you asked?

http://www.patient.co.uk/medicine/Ropinirole.htm

[Deleted User]

[QUOTE=Trialia;28988387Shel, what makes you think no disabled people have to pay council tax??[/QUOTE]

I dont, I was replying to one person who is also a student, hence no council tax to pay.

Indie_Kid

_shel wrote: »

Why on earth do you believe that you should not have to pay for things you want or need?

Are you another person that thinks the world owes them something because you have a disability?

You are probably better off than most on here. Student Loan, Disabled Student Allowance, DLA, Housing Benefit, No Council Tax amongst the benefits you can get.

1. DSA isn't income. I have to pay for ink & paper (neither which are cheap) and then claim the money back.
2. I don't get housing benefit. Even if I did, I would still have to pay the remainder out of my own money.
3. Student loan isn't that much - especially after they want 23 weeks of rent up front.

Indie_Kid

Trialia wrote: »

Shel, what makes you think no disabled people have to pay council tax? That only applies if you have middle rate care or above, and the DWP are very determined about denying as many people MRC as they can, even when they're entitled to it. My best friend had to go to tribunal for hers, and I would (even the Pension Service man who helped me fill out my DLA forms last time said I ought to be on MRC with my problems) - but I don't have the energy or emotional stability to cope with the appeal. It wears me out enough filling out the 39-page form to begin with. So I have LRC, HRM, and no entitlement to the severe disability premium despite the fact I can only just about care for myself most of the time.

Those on MRC still pay council tax; but I think they can get a reduction. A friend does because he needs wider doorways to get his wheelchair through. (and therefore, needs a bigger house)

In other words, it's more difficult than you might think to get the right rate of care component for what you need, particularly for those of us who are younger. I was lucky with my last medical exam for benefit because the examining doctor could tell I was in a lot of pain, but most of them can't. I don't blame them for that, as I've grown pretty good at hiding everything I can of it, but I do blame them for trying to get as many people on LRC instead of MRC as they can.

I agree. DWP (at least with me) do seem to be of the opinion "you've had it since birth; so you should've adapted by now". Except I haven't had it since birth - I was 4 when I was diagnosed and I am still developing problems. I was lucky this morning I could get my socks on with no problem. (which is rare) It's only been recently that I've become so light sensitive that I can't go toilet at night.

krisskross

seven-day-weekend wrote: »

Krisskross, what DOES your husband clasify as disabled then, if he's not???

his idea of 'disabled' is complete loss of a bodily function. Totally unable to walk because of missing limbs etc. He is very very deaf but would not class this as a disabled because with powerful hearing aids and various adaptations (special telephone, flashing doorbell, vibrating smoke alarm under his pillow etc) he can cope.

His eyesight will be cured with surgery, in the not too distant future. at the moment he is prevented from doing things like reading which he loves but this is temporary.

Nothing can be done about diabetes except manage it. It is an illness NOT a disability. If it isn't managed it could cause disablement through loss of limbs or unmendable eye damage.

Nothing much can be done about rheumatoid arthritis. However it isn't life threatening. Yes it limits his mobility dreadfully and the pain has him crying, which is so unusual as he is so stoical. The deformities make manual dexterity very limited but he still can use his hands, he would have to lose the use of them completely to consider himself 'disabled'.

I do think some illnesses are 'bigged up' and exaggerated to claim disability benefits which is why so many people are being refused. People do need to be able to distinguish between something which is a nuisance and inconveniences them and something truly disabling.

Unfortunately describing oneself as 'disabled' for all sorts of fairly minor things has trivialised the word itself and it is fast losing the meaning it once had. I know people who call themselves disabled because they can't walk due to obesity. Call themselves disabled with depression because they have down days. Frankly the word is totally overused.

BTW SDW does your husband see himself as disabled or does he see himself as having a non curable condition that you manage between you as best you can and just get on and live with it?

Indie_Kid

krisskross wrote: »

His eyesight will be cured with surgery, in the not too distant future. at the moment he is prevented from doing things like reading which he loves but this is temporary.

Does the operation actually cure it (and give him full sight back) or does it just remove the cataracts and help him see better?

There is an operation I can have which would help me. However, it's only a temporary fix.

TOBRUK

Trialia wrote: »

... and the DWP are very determined about denying as many people MRC as they can, even when they're entitled to it. My best friend had to go to tribunal for hers, and I would (even the Pension Service man who helped me fill out my DLA forms last time said I ought to be on MRC with my problems) - but I don't have the energy or emotional stability to cope with the appeal. It wears me out enough filling out the 39-page form to begin with. So I have LRC, HRM, and no entitlement to the severe disability premium despite the fact I can only just about care for myself most of the time.

In other words, it's more difficult than you might think to get the right rate of care component for what you need, particularly for those of us who are younger.

I agree, filling in the form takes forever and it stresses you out and then the waiting for a decision! Once you have the decision and as myself, having been awarded HRM and LCR indefinitely, where before I was getting MCR you are afraid of challenging the decision because they could turn round and lower the awarded HRM and LCR or even take them away altogether, which some people have experienced! So because of this and the stress and exhaustion of fighting it, I for one just let it be.

krisskross

picassopete wrote: »

krisskross wrote: »

You can't have the WFP because you don't meet the criteria. I can't have DLA because I don't meet the criteria.

sandy71

Trialia wrote: »

krisskross, I too have met those people whose attitudes you're describing. I'm not one of them, but I do object to having older people glare at me because I'm in a disabled-and-elderly seat when they get on the bus, even when I have my mobility aid (particularly since I can't actually stand up for more than 10 minutes at a time without needing to move around more than a bus allows, grr). I'm as entitled to that as they are, and hell, in the case of the ones who do the glaring, they usually appear to be quite a bit healthier than I. I'd never ask an elderly or otherwise disabled person to let me have their seat unless I was in a lot more pain than usual; I'm not, though you seem to think otherwise, like that.

I have totally lost what is going on in this thread but did notice this point. There are so many people with hidden disabilities but I do find that people (especially older people) think unless you are over 70 or in a wheelchair then you can't be disabled. I don't usually use the disabled seats on the bus but recently I had a hospital appointment the morning after a seizure. This makes me exhausted, in pain and I have terrible balance so I did use one of these seats. As with you Trialia I was glared at and tutted at by an elderly lady who spent the whole journey staring at me. There were 3 other disabled seats free I would never ask anyone to move from one just because they don't look disabled.

*Gets off soapbox and sidles out of thread:o*