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?

It simply isn’t the same when the materials are different. It seems the same to you because your body is strong enough or functional enough to find it that way. It’s a lack of empathy that makes you unable to see it can be different for others. It objectively is different for others.

Honestly, the fact you think you can tell me anything about chickpeas is legit risible. I guess you missed the posts where I mentioned I’m on a whole foods plant based diet. Still can’t open a tin though.

Nope. It unveils the lack of empathy among many members of the public. Many of whom have posted on this thread. What is actually shown in this thread is why Labour feels so safe to target the disabled.

@FlyingUnicornWings its not a fluctuating condition when you can commit to it not happening during the times you have committed to get behind a wheel and are in charge of a deadly machine!

You can’t have it both ways.

You clearly have no experience of chronic nausea related to a severe illness.

I think it's you who is in denial, not others, and you are now projecting this onto here. You have convinced yourself that pot noodle requires less effort than a bean salad from a can.

One days you can't do a pot noodle you'd rather grab a biscuit than a few nuts, right?

The government are responding to all the people posting tripe like this.

I mean, I don’t think we are saying it will heal a broken leg but the reality is that plays a massive role in general health, as well as mood and energy levels - which are pretty relevant to the challenges OP faces.

The book Ultra Processed People has a lot of good examples & research on this.

Human prefers the taste of biscuits to a banana or fish.
Hardly a revelation or disability problem.
Like every other capable adult you just need to make the choice not to survive on biscuits.
This doesn’t make you unique or less capable.

I can’t speak for the other poster but if you are limited in what you can consume then you have to go with whatever is available. I also eat a lot of carbs when more unwell and I’m not worried about diabetes at all. There have been times when I’ve lived almost on pure carbs… it’s better than starving and less risky than going on TPN.

I really think there is often a poor understanding of what it’s like to be medically complex and not have a normal level of choice. I didn’t enjoy it when I was drinking a lot of Coke (and also juice) and getting a fair number of calories in sugary fluids. It gave me no pleasure and damaged my teeth massively. But I was trying to keep my body as stable as I could.

I’m not the poster you’re replying to but see my reply just above/below. You don’t seem to understand that not everyone has all the choices all the time.

No, I have chronic fatigue caused by my own disease. I'm well aware of how challenging it is to have healthy food for every meal from my own experience.

You can tell me about how easy it is until you're blue in the face. But things that seem easy to you are not so to everyone else.

Nope, I’m pretty sure it’s the naked hate all over the thread.

It really, really doesn’t when you have ME/CFS. Like I said, I eat well (mostly non UPF) and have had no improvement in symptoms whatsoever. And to confirm, in case you missed it, I don’t doubt that a well balanced, varied diet is beneficial overall, but it will not cure OP’s condition.

@FlyingUnicornWings I'm not saying that OP doesn't have CFS or that this isn't making her tired after driving her daughter to school. My point is that it is incredibly unlikely that she can't muster the energy to wash an apple, eat some nuts out of a packet or put a salmon fillet into the oven instead of the pizza. Eating crap and feeling like crap is well known phenomenon and I can't imagine it's particularly good for someone already suffering with fatigue issues as crap food makes everyone feel lethargic. The link between food and energy levels has been proven time and time again and yet we all have to just accept that OP is doing her 'best' as this is what she claims she is doing. Sorry, but I don't buy it!

Also the fact OP can reliably drive her DD to school shows her condition isn't fluctuating that much from day to day. She can clearly reliably muster this energy consistently each day. She's not talking about a 5 minute drive either.

No one has said it would cure it, have they? It certainly isn't helping though.

This thread is fucking bonkers.

PIP changes will happen. Whatever party is in power. There was a helpful post upthread by a disabled person with suggestions on what to do to improve her situation, but it's got lost in the discussions about tuna cans.

Just in case it helps anyone...

You can get special levers to help with the ring pulls on tins (which are bloody difficult to use)

They might not help everyone as we are all different. They help more with strength issues than dexterity issues in my experience.

I don’t think you’ve understood what I’ve written.

You do an activity = PEM = increase in symptoms = inability to do other activities.

There are some activities the OP simply cannot avoid, such as driving her child to school. That causes PEM…

Couldn’t be any clearer if I tried, no?

(And no I’m not debating if she should be behind a wheel, I’m not her so I don’t know if she’s safe or not.)

We’re choosing not to worry. What will be will be and we’ll deal with it when it comes. Worry is bad for your health. I always think “don’t let the bastards bring you down”. Think of self care as an act of rebellion 💪

Nobody suggested to make every meal a healthy meal. Projecting again.

'Nope. It unveils the lack of empathy among many members of the public. Many of whom have posted on this thread. What is actually shown in this thread is why Labour feels so safe to target the disabled.'

It unveils the empathy of many as some have conditions or family members who are disabled and sadly we can see why the system needs reform as demonstrated by many comments on here.

Ok. It’s not going to make any significant difference then.

Not at all. Everyone who is seriously unwell on this thread can see the antipathy and cruelty in many of the comments, despite weasel words and claims of “family members who are disabled”, etc. We already know we are being targeted. This thread is a flawless encapsulation.

I don’t drive on bad days. Couldn’t, wouldn’t, don’t. I drive approx 2 days out of 7. If I get spiked by an allergen or inhale an allergen that I know will trigger me I have 20 minutes to get home before the crash. I never drive further than 15 minutes from home.

Those of us with limitations such as these become experts at knowing our body’s limits. Stop being such a cynic.