To think I am completely fucked if PIP changes happen?

[PIPsqueakybum]

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?

@luna25 would it not be possible to get an online grocery delivery of items like a cooked whole chicken, plain Greek yoghurt, bananas, prepared grains etc?

OP does your daughter have a healthy diet?

I am in a similar position to the op only I am too scared to try to claim anything. Simply ordering an online food shop not only is uber stress-inducing when on a tight budget, and verytiring when trying towade through what are now very expensive options for healthy eating, but also rarely possible for me when the minimumorders are so large compared to my meagre budget, not to mention it being so difficult to be sure I would actually be awake when said order arrived. When the tiredness strikes its often with little warning and once asleep heavy metal at full blask wont wake me!

If you can order set foods for your dd then you could order similar healthy foods for yourself, it has never been easier with on line shopping now, you can add as you think of each item, no need to keep the slot until the cart is ready. Then it will all be saved in the “my usuals” section. You can literally order the exact same shop once a week in about 4-5 clicks.

Of course healthy food isn't going to magically fix the OPs condition, but her diet is appalling and that isn't going to help.

Then disabled people should be able to afford the extra it costs to have healthy food available to them for every meal.

It's obvious a poor diet doesn't help and yet many supporting these cuts would be happy to send OP through the indignity of going to a food bank to get cheap crap for every meal.

Totally with you OP. Think anyone that truly listens to what you're saying would be too. As a non disabled person I am so fed up with Labour for making worse cuts than George Osbourne. It's a joke, what kind of society do they want us to live in. People need money for the extra costs of being disabled. Why should it cost more?

Thanks for your post, think more people need to read this. Ignore all those healthy eating comments 🙄 maybe if PIP was higher you could buy instant healthy food. Not that healthy eating would have a big impact on your condition anyway.

Hi OP,
Could you add in some fresh fruit (apples bananas berries etc) and veg (ready washed baby carrots etc) to eat on the side with the pizza and pot noddles and some cheese and nuts for example?
They do not need cooking.
Good luck with your situation I am sorry to hear you have CFS

I really wish you had not sought to bring the Tories into it - it was unnecessary, and has rather blown your cover.

I was reading your posts with some sympathy up to that point.

PIP and LCWRA are not linked for existing claimants.

Even if the changes go through, if you're already in receipt of LCWRA, you'll continue to receive it. LCWRA isn't dependent on receiving PIP and any changes are only being applied to new claimants. Even if you are re-assessed and no longer qualify for PIP, you won't lose LCWRA as it's different criteria for existing claimants.

So hopefully that means things won't be as bad as you fear.

Secondly, you really do need to get a handle on your eating.

I am autistic/ADHD and am fucking terrible with getting things done. I live with three disabled people, and someone else who's on long-term sick as they collapsed with a neurological condition which isn't improving. Believe me when I say I understand the challenges of disability and the impact it has on your life.

You need to change your patterns of thinking. You stopped at a garage to buy a can of coke - you could have picked up something there for lunch at the same time that's healthier than a pot noodle. There are plenty of semi-decent options at garages. Also, coke isn't going to help you. You'd have been better off picking up fruit juice - that has natural sugars to give you energy without all the shite, and it would contain some nutrients.

You say your DD's food is sorted every week without any issues. You need to figure out what changes you can make to keep some healthy food indoors for you too. Completely understand that you don't want food that's going to go off if not used, but a PP gave you some brilliant examples of grazing food that would be better and would last - nuts, healthy snack bars, quick oats for porridge, frozen fruit etc. If you can make a pot noodle or chuck a pizza in the oven, you can manage all of these and your body would be better off.

When you struggle, you need to do what you can. Take the little wins. Manage the little things. It doesn't sound as if you're doing that. You're probably exhausted from managing your condition but it's a vicious circle. The worse you treat your body, the worse you will feel. Eating better won't magically heal you but it will help you cope. Everyone feels lethargic and achy on a diet full of shit. When you have a condition like CFS, this will be amplified a million times over. If you have a sugary/high caffeine drink like coke, when the inevitable blood sugar crash happens, anyone would feel like they could do with a nap, but more so you.

I'm not unsympathetic at all. I'm absolutely furious with Labour and feel so very let down. I'm terrified about what the future will hold for my disabled DC.

And worst of all, no one really cares. The country is in such a state that everyone just wants things to be better, and they believe the hype around lazy claimants and made-up disabilities.

But that's exactly why we need to be doing the best we can. I understand some things just aren't going to be possible for you, but there are small changes you could make that would make an infinite difference. Figure out what changes you could make and determine to make one small change each week. For example, this week get registered with Lloyds online pharmacy - it takes five minutes and you don't even need to ring your GP to re-order your prescription. Maybe next week, add five items to a list of favourites at an online shop. Over the next few weeks, add five more items each week until you have a basic shop saved. Then whenever you need to shop but don't have the energy to put together a full online order, you only have to make about four clicks online and a delivery will be on its way. No distraction, no reason not to have healthy food at home for you.

Take it as slow as you need to but make a plan for yourself. It's easy to feel hopeless when there's no end in sight. But no one is going to look after you, so you need to look after yourself.

My mum has cerebral palsy so I was a young carer. She now lives with me as an adult. Living with a disability is exhausting, unfair, and just shit all round. It's really easy to stop making the small changes that are possible because it all seems like too much.

Do you have antidepressants? If not, do you need them? If you do take antidepressants, does the dose need to be increased? Conditions like CFS can take a real toll on your mental health. Taking antidepressants doesn't mean it's all in your mind - CFS is real but the ongoing exhaustion often leads to co-existing anxiety/depression etc which can make everything feel even more of an uphill battle.

The written word doesn't always translate terribly well, so please take this with the kindness it's intended. Nothing is going to make you feel magically all better, but giving your body the best chance to keep on slogging through really is important.

When you filled out your form for claiming PIP and it asked you questions about daily activity did you base your answers on a good/average day or a bad day?
Only asking because when DHs cousin applied for PIP she was turned down. After talking to someone, not sure if it was CAB or DWP they told her you are supposed to base your answers on a bad day.
She reapplied and was awarded PIP. Sorry if you've already done this and regardless the system is so shit. If these changes come in I suspect they won't last. Too many people will be in a similar situation to you. I know that doesn't help in the short term though.

Where is your daughter's dad in all of this? Why isn't he involved in getting her to school or helping with her diet or helping you do an online shop for both people?

I think he should be. Whenever I read about a woman struggling on here, there's always a man who is not looking after his children.

I have two female friends both in their sixties, single and a few years off retirement. Neither have a private pension. both are reallly really stressed about losing their basic PIP awards.
Friend A is currently off sick , she has a low paid physical job. Her arthitis has progressed and she will not be able to return to this job. She absolutely wants to work. She is terrified about getting into debt but realistically as a worn out older woman with a poor sickness record an employer will pass her over in favour of a younger healthier person.
Friend B has a serious psychiatric condition caused by a brain injury . She does not score more than 2 points in each category. Her paranoia has been increased by the stress. I cannot see an employer taking her on and her work colleagues will definitely not be happy.

No doubt some posters will come back with suggestions on how to work from home etc etc etc but the reality of their situations will not enable this.
Yes the welfare bill has to be tackled somehow but the fall out on individual’s lives will have many unforeseen and very serious consequences. I feel that the policy makers in Govt. do not have the life experiences and understanding of the lives of ordinary people . They may be good at crunching the numbers but their position in life and their backgrounds means that they have lost touch.

if it isn’t the proposed green paper changes that come into effect there’ll still be reform one way or another so you do need to plan for change.

Spending so much time in bed/ inactive and surviving on Coke, a pot noodle and snacks is only going to make CFS symptoms worse. What health professionals are involved in your care and supporting you to manage your condition?

This
coke, pot noodle and pizza will offer zero to little nutrition. I would look at batch cooking some meals. To put in the oven on days where you can’t cook.
Fuelling your body right can make such a difference.

Blown what cover ? She’s absolutely right. Labour are a bunch of hypocrites - wolves in sheep’s clothing. The Tories wanted rid of disability benefits but at least they were upfront about it. Labour kept quiet until they were elected and then launched an all out attack.

This one ‘fix’ to PIP is going to throw thousands of genuinely disabled people off the benefit and save millions from the welfare budget. It will also end any associated claim for carers allowance for those who lose PIP. I bet the Tories are kicking themselves that they never thought of it. Nothing about this is about better supporting genuinely disabled people, it’s purely about the money.

Unfortunately what they’re not telling us is that the knock on effects in the care system will significantly eat into any savings they make. Unpaid carers take much of the strain off local authority care services. As people lose PIP and associated carers allowance support, unless they can claim attendance allowance, ongoing care will be pushed back onto LA’s, who, in many cases will have to foot the entire cost.

OP, I’m in the same position and it’s awful. I constantly feel trapped and want to scream because the personality I had before I got sick is so at odds with CFS. I am
not this person, but being this person is the only choice that I have.

For those being judgemental about food choices, you just will not understand unless it happens to you. I have been ill for 5 years now and have tried everything to improve my situation, including long periods of eating very healthily. It made absolutely no difference to my symptoms. The only dietary change that helps me is keto, which I manage for about 2-3 months at a time. It’s a bit more manageable because there’s lots of food I can eat without having to cook it with this way of eating (and cooking a meal feels almost impossible apart from one or two days per week). Keto helps but requires iron self control. If a flare happens while I’m eating that way, it is impossible to keep eating like that, so I end up lapsing after a couple of months because it’s impossible to avoid a flare for longer. At that point I end up eating whatever is easiest because I feel like I’m crawling through life and things like making a salad feel impossible. It’s not just tiredness that you can “push through” - being alive at all and doing the most basic things such as having a shower is our “pushing through”.

Anyway, yes, if I lose the small
amount of PIP that I get then I won’t be able to afford the supplements, therapies and foods that manage my condition. Without those I will not be able to work as much. I will lose so much more than just the small amount of PIP because my income from work will drop drastically as a result.

Sign up to an online pharmacy - they send a reminder each month for your next prescription & it's delivered to your house.

Sorry to hear about your condition & all the stress. I am also going to say diet will not cure this, but it really could help so isn’t it worth a try? Even someone with no health issues would feel rubbish eating coke/ pot noodle /pizza in a day.

Could you commit to one easy healthy meal per day to start off? Breakfast is an easy one- Greek yogurt with granola, or porridge with fruit etc
Then once that’s an easy habit, move onto lunch as well. It really doesn’t have to be time consuming- humous on toast (ideally seeded / whole meal etc), scrambled or boiled egg if you could manage that?

The first time you do a food shop online it’s a bit of a pain but could your daughter help? Then make sure you click on the items as your favourites- then it will take seconds to re-order the same healthy stuff next week. Could you get a regular slot so you don’t even have to think about it too much? Or at least at the same time each week eg - Monday after lunch- is when you place your order each week.

Sorry, but that’s wrong. The proposed changes are being applied to existing claimants as well as new ones. Liz Kendal made that clear when she outlined the proposals. At the moment LCWRA and PIP are not linked but when the work capability assessment is scrapped as part of the proposals, eligibility for LCWRA will be linked to PIP. As PIP claims come up for review, claimants will be reassessed under the new rules and those who are claiming LCWRA on UC will lose it if their PIP claim is ended.

There is every reason for honest advice to live more healthily. CFS is a ‘chrionic’ condition, clue is in the name. I know many people personally with CFS and there seems to be a repeat theme of each of them eating a very poor diets, using sugary snacks to overcome the fatigue. Having sugar crashes is an awful cycle to get into and will not help your condition. I also have little sympathy for people who do not take care of themselves and then expect a crumbling health service to prop them up along side benefit payments.
I have a relative with CFS, he’s been doing a very active job for the past 4 years and said he has seen a vast improvement in his symptoms. Who’d of thought?

To add, there is no other country in Europe who mirrors our sickness benefit levels - it just doesn't make sense.

It may never happen, OP. Both Labour MPs local to me also happen to be local people who understand the dynamic. Both have posted to social media saying they won't support anything that makes their constituents poorer.

Please write to your MP and explain the impact. It is important they understand.

I'm also in a panic! Fortunately, I have a charity helping me with everything benefit related. I had my bi-weekly call yesterday and she told me that IF the proposed changes go ahead, it won't be until September 2026.

There does seem to be conflicting information about this, reading through the various websites again.

Some disability charities are saying that if an LCWRA entitlement is established prior to April 2026 then it will continue, even at re-assessment, providing the individual continues to have a condition that qualifies.

Even the Disability Rights UK page is a bit ambiguous on this. It seems to be suggesting that for current UC claimants, it will continue, albeit frozen.

The Benefits and Work website is saying that existing claimants will begin to be migrated onto the new system from 2029.

If the latter is true, and I suspect this might be the most accurate as it's the most specific, then existing claimants don't have to worry until 2029 - at the earliest. Four years is a long time with a condition like the OP's CFS; plenty of people manage to eventually recover from it, given enough time and a gentle approach.

This will affect us directly as DP doesn't get PIP but does get LCWRA. There's not a single job he could do, which is bloody annoying but unfortunately true. He doesn't currently qualify for PIP, and won't qualify under the stricter rules, for sure. So I'm really interested in this element and was quite relieved to hear that we wouldn't be affected - but now it's looking more like we will, but not until 2029.

In about a year then so not long

There are healthy food options that don’t involve cooking. There are also apps you can use to help you remember to do things.

I have a fatigue-based condition. I get it, I do. But threads like these don’t do any of us any favours as there are things you could do to help yourself that you’re not doing.