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?

Are you OP. Or someone who’s ill? Do you know what it’s like?

You’ve literally argued that multiple times. You even tried to claim it’s too tiring to chew fruit vs a pot noodles.

Did you miss the bit where I had to stop and rest half way through that drive? And then spend the rest of the day resting or sleeping around the one hour meeting that I had? And the post where I clearly explained the link between CFS and sleep difficulties, taken from the NHS website? Can you suggest an employer that would be ok with me working a full time job but needing to take regular rest/nap breaks or entire days off?

Many people are being ableist and awful. There are umpteen comments showing a positively embarrassing refusal to understand or empathise with fatigue based conditions. People ask to be educated or to have things explained, and then are insulting and rude in response. Plus OP never asked for diet advice at all or for pseudoscience recs of things to “try”. She actually said she has improved her condition a bit!

There is a truly shameful lack of empathy in this thread.

I haven’t argued that. You need to reread my posts.

what if OP doesn't like potatoes? Are we expecting her to eat potatoes for every meal every day ?

Too ill to put some veg in the microwave but not to drive for an hour, open a can of coke, make a pot noodle or stay up half the night posting on the internet.

The outlandish defence of this is exactly why many people want the benefits system to have a shake up.

🤦‍♀️

When I referred to DD’s ‘dad’ he is not actually her real dad, her biological father has not been in the picture since she was a baby, as ordered by the courts (he is a very dangerous man). My ex that she sees as her dad does help out here and there but I can’t expect or demand that he does anything, he’s not her real dad and has no obligation to, it’s nice that he does what he does.

You’ve been prolific on this thread all day for someone who apparently shares OP’s exhaustion.

Yes. Every single poster that has tried to suggest healthier foods or easy ways to cook has been berated for not understanding disability. Seriously? Some of you do your cause harm rather than good.

Many posters will be disabled, many will have disabled family. Being put through reviews and reassessments.

To read some of the comments here it is easy to see why it is necessary sadly.

@Breezybetty
Breezybetty · Today 12:23
Yes but 25% of the UK public are claiming disability and I do not believe we have that many disabled people in the UK.

Cancer is included as a disability and you can claim PIP if you have cancer. Given that nearly 1 in 2 people born in 1961 will be diagnosed with some kind of cancer I think you can begin to see how 25% of the population might.

Clearly you missed my post where I said I don’t have the same condition. As it happens, I’m “wired” at the moment due to a recent death in the family that has me feeling on edge.

Op, I’m not suggesting you don’t have a life impacting illness at all. I’m arguing that you can make changes to your diet that will benefit you somewhat. Other posters are arguing you can’t.

if I were you I’d step away from this thread now and use the energy to do an online shop of healthy food and set up the repeat prescriptions. Prioritise what will help you live better.

God. I’m out.

That doesn’t make any sense. It’s just a random hostile comment directed at disabled people in general.

It's painful isn't it.

What about microwave rice? Bung in some veg? Nice filling meal.

You seem to have missed where OP said not every day is like this. But others honed in on the one example of her having to do this. And that is because she had to take her SEN daughter to school (because she has no other option), have a meeting to try and gain work (otherwise all you small minded benefits bashers would say she’s not doing enough). She’s had to sleep around all of the ‘actitivities’ she did.

And like I said before repeatedly, reliably and safely.

Everyone is different. I have health conditions and work, I don't expect that everyone can or is affected in the same way, as we are all different!

Has anyone considered gruel ??? Back to the old days! That’ll teach us!

No, we have pointed out that this costs more. Just one of the small, hidden costs of being ill or disabled is having to rely on this sort of food.

Yes it might help ‘somewhat’ if I could always eat healthy foods, but I have been there and done that and doesn’t have a massive impact on my energy levels. Maybe I could work 12 hours instead of 10, but I still wouldn’t be able to work 40 hours every week like I will expected to do, or be sanctioned.

You can only claim PIP for cancer if it is terminal and you have been given less than a year to live. It might even be six months, so not everyone with cancer can claim.

Again, many of us will have illnesses and disabilities. Many of us will care for those who are disabled. Who are now facing the stress of reassessment and reading some of your points it is easy to see why the system needs overhauling.

What doesn't make sense?