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Original poster

To think I am completely fucked if PIP changes happen?

1000 replies

PIPsqueakybum · 31/03/2025 23:40

I get standard rate PIP due to having CFS. I’ve had CFS for 10 years and at the moment I’m going through one of my ‘better’ phases, during the bad phases, which can last weeks or months, I am virtually bed bound, and although I manage my condition as much as possible through pacing, stress is a big factor in making it worse so one majorly stressful event and I’ll be back to square one. I am self employed and manage at the moment maybe 10 hours of work a week, which is better than no hours which is where I was for many years. This is in part due to finally winning my battle for PIP and being able to afford therapies which have helped me have at least some kind of a life.

To give you an idea of an average day (bearing in mind this is as good as my health gets), here’s what I did today:

7.30am woke up as usual feeling completely unrested, aching and like I’d been hit by a truck.

8.30am drove teenage DD to school. Already felt completely exhausted and had to stop at a garage on the way home for a rest and to buy a can of coke to try and wake myself up enough to drive home.

9.30am got home and got back into bed to rest, as I had a meeting at 1.30pm and I felt too tired to manage a conversation. Fell asleep for a couple of hours.

12.30pm got up, had a pot noodle for breakfast/lunch, as I didn’t have the energy to make anything else.

1.30pm met up with potential client, which went well and I have some work as a result of it, but was left completely wiped out by having to be ‘on’ for an hour.

2.30pm got back home, tried to do some jobs around the house but was too tired and went back to bed to rest and then slept for another hour.

6pm got up and put a pizza in the oven for tea.

7pm - now, rested in bed, aching all over and watched TV/zoned out for the evening.

This is a typical day, and I repeat this is as good as things get for me. The fact that I was able to get DD to school and go to a meeting is a HUGE improvement on where I was for years, but CFS is a fluctuating condition and I could very easily be back to being completely useless.

If the proposed PIP changes happen, I will lose my PIP, and ergo also lose the LCWRA element of UC. It was a long battle to get PIP and I don’t have any more than 2 points in any descriptor. I will then be on the basic rate of UC, and my self employment will not be seen as gainful so I will be expected to job search for 40 hours per week, and will be sanctioned and lose further money when I can’t do this. I honestly can’t do any more than I’m doing, and even what I am doing now is a struggle. I’m doomed aren’t I?

OP posts:
verysmellyjelly · 01/04/2025 15:12

User46576 · 01/04/2025 15:12

I think you’re projecting here.

Show quote history

How could I possibly be projecting? That doesn’t make any sense in this context.

HÆLTHEPAIN · 01/04/2025 15:14

The only thing I like about these threads is when they get close to the end. Sadly, another of its ilk usually pops up soon after.

User46576 · 01/04/2025 15:15

HÆLTHEPAIN · 01/04/2025 15:14

The only thing I like about these threads is when they get close to the end. Sadly, another of its ilk usually pops up soon after.

You can hide threads that you don’t like.

FlyingUnicornWings · 01/04/2025 15:16

Hoggyhoghog · 01/04/2025 15:10

I understand it I just don’t believe that PIP should cover disabilities that allow you to schedule in your PEM episodes around 2 hours a day of scheduled driving activities. Surely you can also commit to work in these circumstances if you can successfully predict when you will be able to drive and have a PEM.

This is my point OP’s disability conveniently fits around her commitments. Surely, disability by its definition does not follow a set schedule?

Show quote history

I agree with you that disability doesn’t follow a set schedule. Not in my experience anyway.

But she has to take her daughter to school and fight through her symptoms. She has no other choice. It’s not like an “oh I’m off down the pub for lunch every day” jolly. It’s unavoidable. It then causes PEM meaning she is too symptomatic for other activities. What else can she do if she doesn’t have any other way of getting her daughter to school?

Does that really mean she’s not entitled to PIP?

kitteninabasket · 01/04/2025 15:17

HÆLTHEPAIN · 01/04/2025 15:14

The only thing I like about these threads is when they get close to the end. Sadly, another of its ilk usually pops up soon after.

I hope the OP @PIPsqueakybum isn't still reading, or if she is, that she's ok.

Twatalert · 01/04/2025 15:18

HÆLTHEPAIN · 01/04/2025 15:07

I have never said it shouldn’t be tried. Of course it should, where possible. It’s the fact that people assume that symptoms will magicially disappear or that people will get better that I was trying to address. As it always is on these threads, you get the ‘well this worked for me or someone I know, so it must be a cure all for everyone’ posters and it’s not helpful.

And that’s before we take into consideration that it isn’t always possible for some people to access nutritionally dense food regularly for many reasons.

I suffer with nausea and at one point could only stomach toasted white bread or buns. And sometimes I didn’t even have the energy to toast it. I’m going through a period of being able to tolerate more nutritious stuff on a regular basis but that’s because my husband does a lot for me too.

Show quote history

Ah, I didn't think people here assumed it would work for everyone or to the same degree. I thought people were just challenging those saying they can't possibly consume anything but coke, pizza or pot noodles. I don't think anyone here thought it's possible to just eat better all the time. It's hardly feasible for a normally functioning person.

But someone might be able to start somewhere. Stay on pizza or pot noodles, but replace the biscuit with a handful of nuts. In a few weeks or months, another change might be possible.

I have not experienced my physical health compromised like this, but I spent a decade healing my mind one tiny step at a time to a degree at which my life finally became worth living. I don't think anyone could just do it, it is hard and some will not have the ability to endure it and it also never ends, but I see posters here that are completely opposed to the idea of making a tiny change and prefer to tell anyone who says otherwise 'you have no idea, you are ableist and unempathetic'. It's like how I used to think because frankly... it was the easier way out for me.

InspiritingNotion · 01/04/2025 15:18

CockSpadget · 01/04/2025 15:11

I obviously don’t know the OPs individual situation, so can only speak from mine and my daughters, we have autoimmune conditions that cause the CFS. These illnesses come in flares, the symptoms I describe on my previous post are the worst days, I also mention not leaving the house for weeks, as in not at all, so obviously not driving, nada. We also have better days, which to a usually well person, would still feel like they had been hit with a tonne of bricks, but for us we are so used to being much worse, the good days are when we can have a semblance of a “normal” life. We don’t always have sludge for brains, we can feel awake sometimes, but on those days the problem is we try and do more than we should, and make up for the days and weeks of being bed bound, then what happens is we get post exertion malaise, and end up in a bad flare again, it really is a vicious cycle. The urge to “do everything” on a good day is so strong though, especially if prior to becoming ill, like me, you were a very active person, in a professional job, with a very ambitious attitude.
i absolutely agree that no one should drive if they are feeling very unwell/fatigued, including op. I also wouldn’t choose to eat pot noodles and drink coke, but I’m not going to judge that, because there is also probably some clinical depression going on, which goes hand in hand with cfs, and people who are depressed (even without cfs) often don’t look after their wellbeing, my daughter is unfortunately one of these people, dealing with chronic illness in your early 20s, when you should be in the prime of your life, is very fucking hard mentally and physically. I am lucky in the fact I was in my 40s before my autoimmune conditions kicked off, and I had lived life so far to the full, my daughter was sadly just 15 (they are genetic in our case btw). The food situation can also be made hard, due to the fact that a lot of the medications we have to take can cause nausea, so eating at all goes out of the window quite often, and we always say it’s better to have something than nothing.
Do you also know what makes having cfs harder (not for me, because I don’t give a fuck anymore) but it bothers my daughter immensely, is the judgy disbelieving attitudes shown by many people when discussing these conditions (as proven by this thread), she feels like a worthless piece of shit most of the time (her words) because she is unfortunate to have an illness that people don’t (or don’t want to) understand.
Just be aware, these conditions can, and do happen to anyone, at anytime.

Show quote history

I was the same as you. Very driven, very active. The urge to try and carry on as usual can be overwhelming, but when you end up wiping yourself out for days or weeks afterwards, you quickly learn that you need to live your life at a different pace. You increase your productivity not by pushing through at any cost, but by resting.

I do understand that it's hard for people to accept that it could be them next. But the very definition of being disabled is no longer being able to do things that should be easy. So repeatedly telling us how easy they ought to be is useless at best, offensive at worst.

ruethewhirl · 01/04/2025 15:20

Hoggyhoghog · 01/04/2025 14:57

I can’t avoid work unfortunately even though it makes me tired.

You are not grasping what I am saying. You can’t pick and choose when your disability will stop you being able to function if you can safely commit to driving two hours a day in a set timeframe you can commit to other things.

That is not what disability benefits are for we would all qualify if we followed your reasoning.

I also manage an autoimmune chronic condition.

Edited
Show quote history

Ah, now it’s all becoming clear. You ‘manage’ your condition so you don’t see why others can’t ‘manage’ theirs, right?

Hoggyhoghog · 01/04/2025 15:27

@ruethewhirl no I don’t see it like that. I am actually in favor of a universal benefit for all. I just can’t see how someone with a disability like CFS can predict they will be okay driving in rush hour traffic 2 hours a day the same time on those days.

I am in bed today because my condition has wiped me out. I would not drive like this. I could not. Not safely anyway.

FlyingUnicornWings · 01/04/2025 15:28

Hoggyhoghog · 01/04/2025 15:27

@ruethewhirl no I don’t see it like that. I am actually in favor of a universal benefit for all. I just can’t see how someone with a disability like CFS can predict they will be okay driving in rush hour traffic 2 hours a day the same time on those days.

I am in bed today because my condition has wiped me out. I would not drive like this. I could not. Not safely anyway.

Edited

But the point is, she’s not ok. As demonstrated by her OP. The point is she HAS to. She has no other choice. That then steals from the energy she has to do other tasks.

CockSpadget · 01/04/2025 15:29

InspiritingNotion · 01/04/2025 15:18

I was the same as you. Very driven, very active. The urge to try and carry on as usual can be overwhelming, but when you end up wiping yourself out for days or weeks afterwards, you quickly learn that you need to live your life at a different pace. You increase your productivity not by pushing through at any cost, but by resting.

I do understand that it's hard for people to accept that it could be them next. But the very definition of being disabled is no longer being able to do things that should be easy. So repeatedly telling us how easy they ought to be is useless at best, offensive at worst.

Show quote history

Absolutely, we have to manage our “spoons” very wisely. These sunny days we have had have been a killer, I have so wanted to get in my garden and get stuck in, getting things ready for “pretty season” but I know it would put me on the sofa for days, and I have a 13 year old on school hols that I want to be awake for.

Pistachioitaliano · 01/04/2025 15:31

ruethewhirl · 01/04/2025 15:20

Ah, now it’s all becoming clear. You ‘manage’ your condition so you don’t see why others can’t ‘manage’ theirs, right?

Show quote history

When the cuts happen you will have to 'manage ' your condition or rely on others help. As far as I see there is no other alternative.

Hoggyhoghog · 01/04/2025 15:32

FlyingUnicornWings · 01/04/2025 15:28

But the point is, she’s not ok. As demonstrated by her OP. The point is she HAS to. She has no other choice. That then steals from the energy she has to do other tasks.

Show quote history

The point is a disability does not discriminate when a disabled person ‘has’ to do something we all have to do things but if you are claiming disability benefits it is because you can’t do these things consistently. OP can do these things consistently. How much clearer does it have to be for you??

OP’s disability does not affect her enough for her not to be able to commit consistently do a task she deems she has to do. Work is something many have to do.

HÆLTHEPAIN · 01/04/2025 15:36

CockSpadget · 01/04/2025 15:29

Absolutely, we have to manage our “spoons” very wisely. These sunny days we have had have been a killer, I have so wanted to get in my garden and get stuck in, getting things ready for “pretty season” but I know it would put me on the sofa for days, and I have a 13 year old on school hols that I want to be awake for.

Show quote history

I know of a lot of people with ME and almost all, without exception have also been very driven and active. And then illness stopped them in their tracks.

Locutus2000 · 01/04/2025 15:37

Arraminta · 01/04/2025 11:37

We cannot support having 9 million people out of work/claiming record highs of benefits any longer. It has to stop. My DB works in Private Wealth Management in the City and 1% of taxpayers fund over 30% of all tax revenue. This is insane and cannot continue. In fact, it won't continue because droves of his wealthiest clients are leaving/moving their money abroad.

1% of taxpayers fund over 30% of all tax revenue.

Surely this is because they have a disproportional share of the wealth? Income inequality has skyrocketed along with everything else.

HÆLTHEPAIN · 01/04/2025 15:40

Hoggyhoghog · 01/04/2025 15:32

The point is a disability does not discriminate when a disabled person ‘has’ to do something we all have to do things but if you are claiming disability benefits it is because you can’t do these things consistently. OP can do these things consistently. How much clearer does it have to be for you??

OP’s disability does not affect her enough for her not to be able to commit consistently do a task she deems she has to do. Work is something many have to do.

Edited
Show quote history

OP also works. Maybe she’d be able to work more if there was adequate transport for her daughter. PIP is not an of work benefit.

iwentjasonwaterfalls · 01/04/2025 15:41

AzurePanda · 01/04/2025 12:53

What I find depressing about this thread is the idea that those living with a serious illness should somehow just accept that their situation will never get better and not look at ways to improve their lives.

I just couldn’t live with an absence of hope and I speak as someone who has recovered from a brain tumour and in my 50’s, feel fitter and healthier than ever thanks to exercise, a healthy diet and lots of time outdoors.

How did you heal your brain tumour with exercise, healthy diet and time outdoors?

Breezybetty · 01/04/2025 15:41

Locutus2000 · 01/04/2025 15:37

1% of taxpayers fund over 30% of all tax revenue.

Surely this is because they have a disproportional share of the wealth? Income inequality has skyrocketed along with everything else.

Show quote history

Indeed. Do you have any ideas to address this without making the wealthy scarper, taking 30% of the tax take with them?

Livelovebehappy · 01/04/2025 15:44

ruethewhirl · 01/04/2025 15:20

Ah, now it’s all becoming clear. You ‘manage’ your condition so you don’t see why others can’t ‘manage’ theirs, right?

Show quote history

Maybe the poster manages their condition because they access therapy and services to allow them to manage it. And maybe others don’t manage it because they ignore advice on how to manage it, or don’t use their PIP for what it’s intended for, ie for therapy and at least getting the proper food for a diet that helps you manage the illness better - something OP doesn’t seem to be doing.

bestcatlife · 01/04/2025 15:47

I hope the OP is ok. I hope once it's all calmed down a bit we can start to have supportive conversations about how people manage going forward with these cuts. Instead these threads end up in a bun fight every time. To the ableist posters - like you say, these cuts are going ahead, so you've got what you wanted. What pile on the OP? Why rub salt in the wound? You've got what you wanted.. I don't understand the need to kick someone while they're down when it doesn't even affect you.

ruethewhirl · 01/04/2025 15:52

Pistachioitaliano · 01/04/2025 15:31

When the cuts happen you will have to 'manage ' your condition or rely on others help. As far as I see there is no other alternative.

Show quote history

That’s not why I asked pp the question I did. Not sure why you felt the need to butt in there.

And I never said I was on PIP either. I’m thankfully able to work (just), so you pretty much wasted keystrokes with that little bit of bile, didn’t you? But hey, if I can brighten someone’s day… 🙄

Emanresuunknown · 01/04/2025 15:53

CockSpadget · 01/04/2025 15:11

I obviously don’t know the OPs individual situation, so can only speak from mine and my daughters, we have autoimmune conditions that cause the CFS. These illnesses come in flares, the symptoms I describe on my previous post are the worst days, I also mention not leaving the house for weeks, as in not at all, so obviously not driving, nada. We also have better days, which to a usually well person, would still feel like they had been hit with a tonne of bricks, but for us we are so used to being much worse, the good days are when we can have a semblance of a “normal” life. We don’t always have sludge for brains, we can feel awake sometimes, but on those days the problem is we try and do more than we should, and make up for the days and weeks of being bed bound, then what happens is we get post exertion malaise, and end up in a bad flare again, it really is a vicious cycle. The urge to “do everything” on a good day is so strong though, especially if prior to becoming ill, like me, you were a very active person, in a professional job, with a very ambitious attitude.
i absolutely agree that no one should drive if they are feeling very unwell/fatigued, including op. I also wouldn’t choose to eat pot noodles and drink coke, but I’m not going to judge that, because there is also probably some clinical depression going on, which goes hand in hand with cfs, and people who are depressed (even without cfs) often don’t look after their wellbeing, my daughter is unfortunately one of these people, dealing with chronic illness in your early 20s, when you should be in the prime of your life, is very fucking hard mentally and physically. I am lucky in the fact I was in my 40s before my autoimmune conditions kicked off, and I had lived life so far to the full, my daughter was sadly just 15 (they are genetic in our case btw). The food situation can also be made hard, due to the fact that a lot of the medications we have to take can cause nausea, so eating at all goes out of the window quite often, and we always say it’s better to have something than nothing.
Do you also know what makes having cfs harder (not for me, because I don’t give a fuck anymore) but it bothers my daughter immensely, is the judgy disbelieving attitudes shown by many people when discussing these conditions (as proven by this thread), she feels like a worthless piece of shit most of the time (her words) because she is unfortunate to have an illness that people don’t (or don’t want to) understand.
Just be aware, these conditions can, and do happen to anyone, at anytime.

Show quote history

It's really handy that OP has a period of sufficient alertness each day to drive her child to school! On the regular, Monday to Friday at the same time!

And before anyone jumps on to suggest the OP probably doesn't do it every day, her kid might get the bus some days... Her kid should be getting the bus every day if that's a possibility, so that mum isn't wasting what little energy she has on a unnecessary task leaving her barely able to feed herself.

LadyKenya · 01/04/2025 15:56

bestcatlife · 01/04/2025 15:47

I hope the OP is ok. I hope once it's all calmed down a bit we can start to have supportive conversations about how people manage going forward with these cuts. Instead these threads end up in a bun fight every time. To the ableist posters - like you say, these cuts are going ahead, so you've got what you wanted. What pile on the OP? Why rub salt in the wound? You've got what you wanted.. I don't understand the need to kick someone while they're down when it doesn't even affect you.

Nothing is set in stone yet. The Government is facing a lot of opposition to these proposed changes. We do not know what they will look like, until they are finalised, and put into action.

ruethewhirl · 01/04/2025 15:56

Hoggyhoghog · 01/04/2025 15:27

@ruethewhirl no I don’t see it like that. I am actually in favor of a universal benefit for all. I just can’t see how someone with a disability like CFS can predict they will be okay driving in rush hour traffic 2 hours a day the same time on those days.

I am in bed today because my condition has wiped me out. I would not drive like this. I could not. Not safely anyway.

Edited

Sorry to hear you’re struggling too.

CockSpadget · 01/04/2025 15:56

Livelovebehappy · 01/04/2025 15:44

Maybe the poster manages their condition because they access therapy and services to allow them to manage it. And maybe others don’t manage it because they ignore advice on how to manage it, or don’t use their PIP for what it’s intended for, ie for therapy and at least getting the proper food for a diet that helps you manage the illness better - something OP doesn’t seem to be doing.

Show quote history

And maybe due the failing NHS, immense waiting lists and postcode lottery on access to a lot of these therapies and services the op (and others) may not be able to manage their condition better. Maybe the OP is depressed (which a lot of people with CFS are), depressed people struggle to care for themselves properly, even if they are physically well. Humans are individuals, their conditions and how they affect them present individually, I would have thought that wouldn’t need explaining.

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