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?

Better than a pot noodle..

If Pip is cancelled appeal it with lots of medical evidence and a local MP.

Yes you need a certain amount of dexterity to pull a ring off a Coke can

Yes, it's definitely not been an astute political move, has it?! Our local depressed ex mining towns are full of people on mobility scooters, walking with sticks, visibly not in a good way, and I assume that the red wall constituencies in danger of falling to Reform are very similar.

And that is why it is imperative that she eats well, to nourish her body. Anybody would know that. There are other wiser food choices that the OP can make.

Food is not ‘therapy’. Eating is something every one of us does to survive. And where did I say exercise is not therapeutic? It’s therapeutic of course to certain disabilities. And that’s exactly the sort of therapy PIP should pay for. I’d still argue that going and having your hair done is not a necessity. Many people don’t have their hair done because they can’t afford it. To suggest there are situations where someone can’t put a brush through their hair is madness.

You can have a banana as-well as pizza it’s not a one or the other scenario. A banana as-well as pizza is more nutritionally balanced at least.

The OP’s diet doesn’t have to be so lacking in nutrient rich food.

Avacado, washed salad bowl. The list is endless. Pot noodle, coke and a pizza is crap nutrition on its own.

I can’t even. I am 2 pages in and already the comments of ‘no wonder you’re tired if you eat like that’ are grinding my gears. And I have literally no experience or understanding of CFS.

What OP is describing isn’t just ‘tired’ it is literally chronic fatigue. The day OP has described in her thread is the type of day I would have when I have had full blown flu. The type of flu where you can barely move. But she suffers this every day - and that’s a good day?!

I don’t have any advice but it would be criminal OP if you got your PIP taken away from you

To suggest there are situations where someone can’t put a brush through their hair is madness.

Wow. You should get out more.

@WeylandYutani but surely the fact the government aren't consulting means the changes definitely will happen? Or do you mean they don't see the point in consulting because they're not really going to make drastic changes, and all this is just to scare people? 🤔

It’s not criminal it is politics.

'The day OP has described in her thread is the type of day I would have when I have had full blown flu. The type of flu where you can barely move.'

Yes and we've all had them. You drink gallons of water and eat soup and fruit to aid recovery.

You're really not helping with these invented scenarios. If the OP is safe to drive a car then she's capable of peeling a banana, if she can take a bite of pizza then she can eat a baked potato fgs!
Her daughter has barely been mentioned in this thread but she has my sympathy, she must surely have a very restricted social life and opportunities to thrive outside of school.

Because your post is utterly nonsensical.

How can someone be too fatigued to think about a food slot time when they can post for 2 hours until 2am on mumsnet?

How can they be too fatigued to chew an banana rather than a pot noodle?

They can’t possibly figure out how to microwave 2 things at once if they can oven cook a pizza?

There’s no logic in what you’re saying.

No one is arguing that someone who is physically disabled and has limited abilities will be able to do every single thing but there’s just literally zero reason a person with CFS can’t microwave vegetable couple instead of a pot noodle, or put a baked potato in the oven and chuck some steamed veg and grated cheese on top. If you’re physically capable of one you are physically capable of the other, no one’s suggesting she make her own bread from scratch.
And if you’re able to afford coke from the garage, pot noodles and pizza you can afford oats, milk, a bag of cheese, potatoes and some prepped veg.

I’m not referring to what I can do in the here and now. I can’t prepare food at all, that’s partly why my PIP entitlement is high. You have a fantasy that it is all easy and straightforward because it is for you, but that’s it the case. If you want to read more about my condition, scroll down the thread as I posted a comment with more detail. I am almost totally confined to bed and food prep is not a part of my life whatsoever.

Nevertheless, I have experience of struggling with supposedly “easy” tasks in the past, and also have many friends with fatigue based conditions. I know it’s so easy t9 be dismissive, but you should be grateful this all appears a “mindset” thing to you.

You sound like the people who attack low income parents for not cooking from scratch because it’s so easy and affordable…

“ To suggest there are situations where someone can’t put a brush through their hair is madness.”

Are you joking? 🫤

Life is unfair but all anyone can do is deal with what is thrown at them. These things can help not cure., sleep, sunshine and healthy diet ( keep weight at optimum level).

UK benefits system as a whole will be restricted more and more each year, everyone needs to be aware of this uncomfortable fact and plan ahead. The other option is to move abroad to a country you feel would be more suited to you.

Another quick fix anyone who is able, safe and well enough to drive should be reassessed as priority because unless you are severely disabled I can’t see many scoring a 4 and being able to safely manage driving a car.

So now we’re saying that we have to pay people PIP to get their hair and nails done? Jeez.

it's concerning, from your description it doesn't sound like you should be driving at all, you don't sound safe and especially with your children in the car.

Multiple people have asked on this thread for clarification about how food prep can be hard for people with fatigue based conditions. I’m not in the least trying to comment specifically to OP, as that would be ridiculous! I don’t know her exact needs. My thoughts on her situation, I’ e already shared and been very clear about, ie that she is doing 100% the right thing by feeding herself. No matter how judgy and mean MN wants to be about it.

What I can comment on is barriers to food generally. In response to people asking, multiple times, for clarification! You don’t have to read my comments if they annoy you.

There are no such countries though.
As unfair as it may be, benefits will be restricted going forward by every political party.

Well that’s true too. Because cooking from scratch is more affordable. Might not be easier, but sometimes you have to adapt to save money. I’ve been on low income when the dcs were little, but quickly came to realise that cooking from scratch and meal planning was cheaper than chicken nuggets and frozen chips.

Just to balance some of the comments about diet. I have ME/CFS. I eat ‘well’. I’m lucky because my husband cooks for me. My typical day’s diet is greek yoghurt with fruit, sometimes fruit or veg sticks as mid morning snack. Lunch is usually something like smoked salmon and scrambled eggs with lots of salad veg or homemade chicken soup, then dinner will be typically something like chicken skewers with veg, or fajitas (so similar) but I don’t have the wraps, I have lettuce. Then other times we have salmon with veg and a few potatoes. Other times we have homemade chilli or a roast or similar. I’ve been eating this way consistently for around 6 months and I still feel like absolute shit. It has made no difference whatsoever to my illness or symptoms.

As I said, my husband cooks for me but if he didn’t, I’d be like OP. People keep mentioning it as if it’s easy just to do something about it, when it really isn’t. OP says some days she can manage better than others and will eat better then. People with chronic illnesses aren’t stupid, they know a good diet etc can support better health overall, but being able to manage that is not as simple as just knowing it.

And don’t get me started on the comments about sleep. One of the symptoms of ME/CFS can be insomnia or irregular sleep patterns, regardless of all the sleep hygiene measures in the world. And even when we do manage to sleep, it’s hardly ever refreshing or restorative.

OP, I’m also worried. There’s no way I could work. And even if I could, no one would realistically give me a job.