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?

@Gloriia You did imply that I wasn’t someone with a genuine disability and you’re only back-pedalling now because I’m citing specifics. Despite some PP finding that so terribly undignified.

I mean, keep denying it but we all saw your post.

This reply wasn't meant in the negative way. It was meant to say we need more funding in mental health department, rather than just pay people indefinitely who live in depressions, it is not pleasant life for the individual either is it. Some people need therapy for life to function, just like they need medication.

And although I didn't want to make post too long, I know first hand that some people don't take diagnosis lightly and aren't able to get on with life due to the reasons you described. And yet we still have no help for them apart from yet another pill and benefit to pay.

I have a friend who I call super human, she's been diagnosed with IBD and RA since he twenties, despite of pain fatigue, flare ups and what not she just kept going and managed to accelerate in her career and everything. But she was mentally very strong. She changed her eating habits since diagnosis and always trying to stay active, but only once she started going to private therapy she managed to reach full and steady remission (she spent a bank on it).

I think youre twisting my words. Food prep and can opening was discussed by many posters.

I have not said you don't have a disability at any point.

A tin of cold beans on their own isn't a meal so it would have to at least be hot beans on toast.

Imagine you had the flu. Not a bad cold. The flu. Are you still able to get to the supermarket to buy these nice mixed bean salads? Are you still able to add dressing? Can you even get out of bed to the kitchen to prepare a meal?

All these 'just do this' suggestions are unhelpful because they're based on an assumption of capabilities that disabled people don't have. Further, it seems to be based on the idea that disabled people do have these capabilities, but are too airheaded to actually try to use them.

We know how to cook food and what healthy foods are. We just can't access them.

Multiple people specifically responded to me about it / accused me of posting too much about it / attempted to call me out for being somehow wrong about it. Now you’re trying to get out of it being about me in any way because you want to make it “oh, just a general thing, not specific to you” as you know how bad it looks to attack me when actually I do have a very severe disability.

But that is exactly what you did, I’m not twisting your words at all.

@Wanderergirl Totally agree there should be more funding for mental health support and therapy. A relative of mine, who was still working then, paid for therapy for me when I was younger and I found it transformative in terms of acceptance, trauma processing, and untangling neurodiversity stuff. I wouldn’t be happily married as I am without it. In reality it isn’t curative of severe physical disabilities, though.

Previous posters (pp) discussed can opening and how coke cans are easy to open but beans and tuna cans aren't despite having the same mechanisms.

I agree completely!

The mental contortions and gymnastics that some posters are trying to pull off to justify why a stranger on the internet can safely drive their DD to school and also can't peel a banana or boil an egg due to immense exhaustion. You really can't have it all ways. They of course will insist we don't understand and are ignorant but they are ridiculously bold to assume that they do when they don't know the OP from Adam. I think some people have got into a siege mentality when it comes to disability and will defend anyone that claims to be disabled without stopping to question what the poster is actually saying and whether it all hangs together as a logical and sensible story.

I can't speak for anyone else but one of the many reasons I might reach for a packet of biscuits instead of a tin of tuna during a flare-up of my condition (a measurable condition for which I've had surgery and requires medication before anyone comes at me) is because my body is craving the sugar and carbs, and also because the pain I experience, especially if I have to take codeine on top, can make me feel quite nauseous. So the last thing I feel like eating is fish or a banana (bananas make me gag even when I feel well). There's no chance I could fuck about with a baked potato, and it would also mean having to sit at the table to eat which I'm in no way capable of doing in those states.

That was overwhelmingly a discussion that you and others were having with me.

This nice mixed bean salad does not expire for years. You can have a bunch in your cupboard and restock every few months. And I do have stuff like this in my cupboard because nobody will bring me anything should I get ill. Or I just grab a few nuts, or are you going to say you can't open the packet but can open a can of coke or boil the kettle for pot noodle and take off the lid?

But I love beans. If I have the flu and need to eat this is the easiest thing to do. It is that or no food. I don't see how pizza or pot noodle are easier than this option. Nor healthier. You don't have to do it all the time or all at once.

Can you drive 2 hours a day 5 times a week with flu?

Online shopping?

If you can engage on SM online shopping should be manageable.

You’re missing the point. We aren’t trying to claim to know all the details of OP’s situation. What happened was, PP almost immediately started giving unasked for advice that showed little to no understanding of energy limiting conditions. When gently pushed back on with the info that this maybe wouldn’t be ideal, the chorus of “ohhh but whyyy, why wouldn’t it be just the same?” began. At which point, some of us, after being asked multiple times, explained, only to be insulted and told what we were saying couldn’t possibly be true, despite the reality that it factually IS true.

It’s not surprising that a thread of this can be a trifle wearing. Nobody commenting on food accessibility is presuming to say they know exactly what works or doesn’t work for OP.

This thread is pages long I can't recall the names of who said what. I do however think one tin is the as the next to open.

Many of us have illnesses and care for those with disabilities we know that a good diet is necessary for good health. Tins of veg are better than pot noodles.

The fact that people here are being told to "be kind" when they point out peeling a fucking banana requires the same amount of energy that opening a coke can does, tells me everything I need to know about why labour have realised they need to try change our attitudes to being entitled to benefits.

The fact is that they have said they will protect the most disabled. I think the rest of us are trying to be encouraged to stop with the victim mentality and to take a bit of responsibility for our own well being.

The one diagnostic criteria of cfs/me is something called PEM. Or post exertional malaise. In layman’s terms, it means you may be able to do one activity, but that will then cause PEM meaning your symptoms will flare up and you won’t be able to function until the PEM goes.

Obviously there’s a nuance to this and every cfs/me sufferer is as different as the next cfs/me sufferer, but in short, it could be why she can drive to school but then not have the energy for other activities.

Cfs/me isn’t as straight forward as being tired, nor is it fatigue the only symptom. PEM isn’t just feeling more tired because you did something, it’s a complete flare of all symptoms.

This is why it’s a fluctuating condition and one day might look completely different to the next day. One day she might be able to cook herself a meal, but that could cause PEM for the next few days (just an example, as I said, the condition presents differently in each sufferer).

Not sure if that’s helpful?

Tins and cans are literally not made of the same material. It’s basic fact.

Opening them is the same though, when they have a ring pull like most do these days.

Chickpeas are good for protein and nutrition.

My suspicion here is that people need to persuade themselves that there's something more hardy, stoic, and capable about them than those who are speaking from a place of experiencing disability first hand. It seems like people need that reassurance that if they personally got very sick, they would have the mental fortitude to continue on with their normal life.

I get it. I also thought I'd be able to power through and conquer mountains. Then it actually happened to me.

The fact that your response is this ableist and cruel when the thread is full of people taking their time (and, yes, energy) to explain some absolute basics of energy limiting conditions exemplifies why Labour has chosen to target vulnerable people. It’s not about “entitlement” at all.

@kitteninabasket Sorry that you suffer from such a debilitating condition, that sounds like a nightmare. Are you not worried though that reaching for empty carbs or sugary treats could potentially ultimately lead to conditions such as diabetes? What about something like nuts or dates or other types of fruit instead?

I have an appalling sweet tooth but have a strict rule of no sugar during the day as I know it just makes me hungrier later as well as causing a slump in energy levels.

Or you could have a bit of both?

I'm not craving tuna and veg either, but I know it keeps me full and is healthy.

Exactly this, the narrative that has been created around the OP and her abilities (or lack of) just defies rational explanation

I wasn't talking about severe physical disabilities, but one thing for sure, they would definitely cope better if they would have access to therapists regularly. Not saying they would become magically physically capable, but they would have a better quality of life for sure. Human mind is powerful and they might find relief in coping with physical issues too. Many people are normally tired looking after their disabled relatives and can't always give full attention or have their emotional needs met. It's all linked.

Thank you for this. It’s a good explanation and one which people really do seem unwilling to understand.

It also ties in with what I mentioned in PPs that PIP descriptors should be able to be done repeatedly, reliably and safely (and as much as a healthy person would be able to do).