PIP, and the shrinking of motability/HRM.

SandraScarlett

Why oh why must some people adopt such an attitude of "look how brave I am compared to you"!! No two people have identical levels of pain, and whereas one person may consider it a "fight" to walk 50 yards, another may consider it a "battle" to turn over in bed.

And it isn't about pain thresh-hold either. You can tell if your temperature is higher than somebody elses by using a thermometer, but nobody knows the extent of pain that another suffers in comparison.

My Dh had a replacement knee op, that wasn't successful, and has spina bifida, but was still able to attend the gym, once a week, and do some seated exercises to improve his upper body strength. Then Alzheimers struck, together with Multiple System Atrophy, and 5 years later, it's all he can do to get up from a mechanical armchair that I bought for him, even though the chair "pushes" him up.

He is in constant pain, has lost his sense of balance, and is so frail. He asks me the same question dozens of times, can't retain facts for even a minute, and is forever losing things or forgetting how to do everyday things, like filling the kettle. Then someone will say "Oh I know what that's like, my memory's like a sieve"!!

I could scream! :mad: It is nothing like it at all! I do not know if some people post of their achievements, in the face of adversity, to make themselves feel better, or make other people feel worse, but it isn't helping.

Thank you to the posters who do post such helpful advice.

xx

sunnyone

Anubis wrote: »

Then you shouldn't be driving, you are a danger on the roads and I find it disgusting you are allowed to. No wonder you didn't feel toothache.

Being opiate tolerant means I get no side affects, I am an excellent driver who would never, ever drive if unfit to do so since I became disabled in a car accident (which is why i rarely drive anymore.)

Yes, I know the medication you refer to is Fentanyl patches, been on them myself, very high dose - they did nothing after 8 months so I came off them by request.


While tecnically they are stronger than morphine, they aren't realistically. 100 mg patch (high dose) is equivalent to 10 mg morphine.... I have been on both Morphine and fentanyl in high doses, yes you are right, doctors can tell severe pain.

Wrong I am on the lollypops (+patches) which are infact rarely prescribed for chronic pain patients, I am also on a full raft of other pain meds.

Please do not underestimate the pain people suffer by suggesting they could walk, and please do not get your jibes in by stating you would be in bed 100 percent of the time, not 90 like me, it is like you are attempting to say your disability is more deserving than anyone else's.

I am bedbound most of the time but dont mind the facts, I remember now why you left lastime, you are a proven liar who probably couldnt even lie in bed straight.

If you wear a belly bag, you do not need help during the night so we will have to agree to disagree. Infact anyone with urine continence issues does not need help during the night.

I am going to try a belly bag, I dont currently use one, maybe you should read what I post instead of using your imagination.

I get high rate care because I have both day and night needs, I will get the enhanced rates of PIP when they come in as well.

Try having bowel incontinence - the fact is you can drive, get out, etc, people like me cannot because the strongest pain killer does NOTHING for the pain. As I said I have been on morphine equivalent to 5 largest doses of Fentanyl. (5x100mg patches per day)

You know nothing of my bowel issues, bowel incontinance isnt so bad, it can get a lot worse.

I will pu it another way since you claim people like me don't need a wheelchair/motability... If you walked in shoes 4 sizes to small continually for 48 hours. Then take them off, and try to walk, you might have some idea how difficult it is to walk in severe discomfort.

Again you know nothing about me, I dragged my useless legs around for over a decade before I became a fulltime wheelchair user and I mean dragged because I didnt have enough use of them to walk with crutches in a normal fashion.

According to you, only people with Paralysed legs or no legs should be allowed, because everyone else, regardles of condition comes under severe discomfort umbrella so that's an awful lot of people you are claiming have no disability and are undeserving.

There are plenty of people who should get HRM but not because they get discomfort or even severe discomfort as this isnt a disability, and you are showing even more ignorance, I am not a para, i wish I a lot of the time.

It's not just pain either... There is weakness and severe breathlessness to consider. So if you think you are more worthy then so be it, I know you are not. Disability is NOT always something that can be seen (as in no legs) many people endure disability in many different ways, it doesn't make them any less disabled than you or I.

More ignorance, I posted just over the past week about my sister who died of her brittle ashma at 34, she couldnt walk anymore than i could.

sunnyone

zaksmum wrote: »

I'm referring to SEVERE discomfort - not just discomfort. And the DWP accept it as a qualifier for DLA so how can you say there's no such thing?

Severe discomfort isnt a disability, severe discomfort is soemthing everyone goes through everyday.

It might be accepted now but hopefully PIP will stay the same as the draft and it will get ignored as it should be.

GlasweJen

A quick look at my posting history should explain why I get DLA. I get middle care and high mobility and I don't go to the gym but I could if I wanted to and it would make me any less disabled than I am now.

ramsas

Anubis wrote: »

Then you shouldn't be driving, you are a danger on the roads and I find it disgusting you are allowed to. No wonder you didn't feel toothache.
KNOW THE FACTS FIRST BEFORE COMING OUT WITH SUCH IGNORANT UNFOUNDED COMMENTS.!!!!
Driving ability in cancer patients receiving long-term morphine analgesia.....The authors conclude that long-term analgesic medication with stable doses of morphine does not have psychomotor effects of a kind that would be clearly hazardous in traffic.

Morphine and driving

Reassuring results have come from a Finnish study of driving ability in cancer patients taking long-term morphine [2]. Although morphine given as a single dose to a healthy volunteer impairs reaction time, co-ordination, attention and memory, this is not true for patients on long-term stable doses.

The authors used a battery of tests designed for professional drivers (Austrian Road Safety Board - as used for Helsinki bus drivers) to compare the performance of 24 patients on continuous morphine (mean 210 mg oral morphine daily) with that of 25 pain-free patients who took no regular analgesics. The morphine patients had been on a stable dose (twice daily sustained release formulation) for at least two weeks.

There was no significant difference between the morphine patients and the controls on the driving simulator tests. The conclusion was that patients on long-term stable dosing with morphine should be at no greater risk to themselves or to other road-users.

LadyMorticia

Anubis wrote: »

I know, I didn't want to use your name If you ever need to talk I am here.

I don't mind people knowing. I used to, but there are quite a few people on here who don't think M.E is a real disability and I think, in some ways, posting about how it affects me and how severe it can be, helps raise awareness for the condition.

Thank you. I might take you up on that offer.

Anubis_2

I am bedbound most of the time but dont mind the facts, I remember now why you left lastime, you are a proven liar who probably couldnt even lie in bed straight.

Oh so suddenly you are bedbound - strange.

Pardon? IIRC you tried to say I was lying and I proved you wrong, as I linked to an old post of mine where you claimed I said things I didn't. You have accused many of lying.

RAMSAS: (husband or relative) as she states she takes a plethora of other pain meds...... NOT just morphine, then she is a danger driving, I don't care what you state. In her own words "I am also on a FULL RAFT" of other pain meds.

Now Sunnyone, please PROVE I am a liar...the last time you tried and stated I had said things, I proved you wrong. And for your information I didn't leave at all, I have been in and out of hospital for a few months, not that it is any of your business.

Waiting for proof. Please do not do what you did last time, say I said this, that and the other, without LINKING to any proof thanks. You won't be able to because I don't lie unlike some.

Oh and this isn't about who is braver, this is about Sunnyone claiming that anyone in pain who struggles to walk does not deserved motability, obviously thinking everyone else is undeserving because the "walking with SEVERE pain" covers a whole lot of people.

Anubis_2

LadyMorticia wrote: »

I don't mind people knowing. I used to, but there are quite a few people on here who don't think M.E is a real disability and I think, in some ways, posting about how it affects me and how severe it can be, helps raise awareness for the condition.

Thank you. I might take you up on that offer.

Yes, please do I run a private group for people with ME/Lupus/FMS and similar.

LadyMorticia

Anubis wrote: »

Yes, please do I run a private group for people with ME/Lupus/FMS and similar.

That's so lovely. I try to raise awareness whenever I can, but only so much you can do when you're mostly bedbound/housebound. I'm thinking of selling some of my photos as prints and greeting cards to raise money for M.E research.

Anubis_2

LadyMorticia wrote: »

That's so lovely. I try to raise awareness whenever I can, but only so much you can do when you're mostly bedbound/housebound. I'm thinking of selling some of my photos as prints and greeting cards to raise money for M.E research.

Brilliant Idea! Research for such things is dire in the UK but they are finding out more lately. I am in touch with a few good professional photographers as I used to do it myself (semi pro). I miss it so much. I had to end up selling the Canon D SLR as it became unmanageable for me and since then I haven't done any. I kept the lenses though just incase, we live in hope