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?

Utter strawman.

What part of suggesting microwaving steamed prepackaged veg and rice is the same as whipping up an elaborate meal from scratch?

If a child was also fed a coke for breakfast, pot noodle for lunch and a frozen pizza for dinner I would also think it was a shite diet. Are you suggesting it isn’t?

This. Its pretty obvious she can't function in the morning because she was on the Internet at 2am. I feel fucking horrendous if I go to bed later than 11pm and I'm a healthy functioning adult. I was expecting OP to be going to bed at for eg 9pm after saying she was exhausted all day. But I bet she doesn't because she's napped half the day so really her day and night have got switched. And then eating shit like pot noodles when there are things like simple ready meals you just microwave that would be far more nutritious.
This is the problem with the level of benefits we are paying out, it's not true for all but some are simply not helping themselves, when there are things they could do that would considerably reduce the impact of their illnesses.

It's only a little thing and I know it doesn't actually really solve the problem, but as for selling things and the parcels do you have the Royal mail pick up service in your area?

It is so hard to read your list of what someone can't do food wise when alternatives and solutions seem so very obvious.

It is well documented that diet and liftelsye plays a huge part in fatigue type illnesses, so again if the op stops at a garage to buy coke she should choose for example orange juice. She'll get a sugar boost but with actual health benefits too.

You post very articulately, have you thought about doing some online based work to boost your income?

I haven't stopped worrying since the green paper came out and I'm terrible for worrying and I'm in a right state. I feel awful for people. I work part time as it's all I can do, I've only ever worked part time. I don't claim anything at the moment, I manage on the little I have but I have claimed in the past. I've often had a long period of unemployment before going back to work. Don't want to go into details about my health.. but it does reassure me that the safety net is there if I need it. Knowing that it might not be means I probably don't have a future as I've always thought I'd end up on benefits at some stage - I don't think I'll make it to retirement age.
But then again anything could happen to any of us. It's disgusting what's happening.

I don’t disagree that UPFs are far from an ideal diet. Our household eats whole food plant based, and if we deviate into eating vegan UPF for a couple of meals, we definitely feel it! I’m not commenting from a pro UPF perspective at all. But it’s very complex when illness is involved. As I said in another comment, you would genuinely be amazed at some of the things I’ve been told to eat and drink to keep my weight up. And I mean by NHS dietetics staff! UPF central.

You have a husband, doesn't he pay the bills? In sickness and health vows. Must be more challenging to those who are alone.

Food is not ‘therapy’. Eating is something every one of us does to survive.

Also, try telling some of the people on this thread that food is not therapeutic 😂

@category12 you can’t be serious in that you expect taxpayers to pick up the bill for someone to have a pedicure as while they have a husband who is willing and able to help she knows he “doesn’t like it”.

Any of us with pets, children, elderly relatives etc have to perform unpleasant tasks on a daily basis, it’s called life.

They should pay their bills either by working or claiming benefits. The extra money they get for PIP is to be spent on the disability. If the non-PIP benefits are not enough to live off how are those without PIP getting by?

Nobody seems to appreciate the need to reduce benefit spending at all. The extent to which it is totally unaffordable.

I hate to say it but your diet is shocking and I am sure that does not help.
I know you have no energy and that must be awful, but there are some better foods you can eat, even some ready meals will be better than coke, pot noodle and pizza. Can you eat some fruits or prepared (cut) vegetables. Theres' so much you can buy frozen now - not just peas.
Instead of a coke, buy a smoothie or even a juice - still sugary but has some nutrition.
Instead of pot noodle, there must be other instant pot - itsu or similar - that are more nutritous.
Instead of pizza - a ready meal with vegetables included.

You seriously can't imagine disabilities where people need someone to brush and wash their hair for them because they are unable?

Actually yes, I really regularly try to look for online jobs. It’s tricky because my medical status is very up and down which makes deadlines / deliverables extremely hard. I’m not at all opposed to working - I’ve worked in the past (albeit very limited hours), and I would LOVE to work again. Even in the past few months I’ve done a little bit of freelance work in my field. My spouse’s income will hopefully increase in about two years and then we will be able to start contributing to my care costs again, too.

@Pistachioitaliano The other option is to move abroad to a country you feel would be more suited to you.
I'd love to but the government took away my right to freedom of movement

@Breezybetty I noticed you didn’t reply to my response to you. Still of the opinion I shouldn’t be getting PIP?

Yeah, and literally overnight!! I went to bed fine as normal and had two strokes in the night, they didn't wake me or anything. Nothing dramatic, no car or horse riding accident... life changed overnight..

Completely agree with this.
If you can buy a pot noodle, you can buy a ready made lasagne or fish pie instead.

If you can press the button on the kettle to boil water for a pot noodle and peel back the foil, you can press the auto start button on the microwave to heat a ready meal and peel back the film.

If you can use a fork to eat a pot noodle you can use a fork to eat a ready meal.
Im sorry there's no way a pot noodle is the only choice in that situation. Why would you even buy such utter rubbish if you have really poor health and need to fuel your body!!

Yes, that works when you have actual flu which is a virus and you know you’ll be over it in a matter of days. OP doesn’t have that.

This is me sometimes (bad days, thankfully not every day) and it stuns me that anyone would imply that it just doesn’t exist.

You obviously don’t realise that people with ME are often plagued by insomnia or irregular sleep patterns, regardless of any of the sleep hygiene tips we follow. I can sometimes sleep most of the day and still sleep all night. Or the reverse where I don’t sleep during the day and don’t sleep at night. And sleep for people with ME is hardly ever restorative, so even if OP did actually sleep at ‘normal’ times, it wouldn’t mean she felt any better.

I wish I could afford cans of coke for breakfast.

Thanks very much.

Podiatry isn't a cosmetic benefit.

If someone's disability means that they can't reach their feet - how do you suggest they carry out the necessary foot care?

Bearing in mind nails that aren't trimmed can be ripped off and lead to infection, or cause ingrowing toenails which might need surgery. Foot care is also an integral part of diabetes.

They're not nipping down to the salon to get the latest gel colour on their nails. It's essential personal care.

As for hair - lots of disabilities prevent people from being able to lift their arms. My DM has cerebral palsy and her condition has progressed - she can't currently lift her right arm past elbow level and can only slowly lift her left arm about three quarters of the way up. Her hair needs to be kept short so that it's manageable. She can't lift her arms to brush it, and she has thick, wiry hair. Left to grow, it gets into a huge knot at the back of her head that can't be untangled. It has to be kept short to prevent this happening. Her hair can start to knot and tangle badly within a few hours if it's left long and it gets into a hell of a state that Mum can't reach to brush.

I get that you have no life experience of disability, but before scoffing at why something might be essential, maybe just have a think?

I did think this, I'm too disabled to drive but I'd have to lie to get PIP.

I do, and he does but it doesn’t always cover the extra costs my illness brings. Of course it’s more challenging for those alone.