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?

Because energy limiting conditions sometimes (often) mean that doing one thing has a knock on effect and leaves no energy for anything else. I’m really not sure why that is hard to understand. But also, OP has repeatedly said that every day is not like that.

You definitely need to look at your diet if this typical. Nobody can function with insufficient nutrients. Plenty of healthier food doesn't need preparation.

'You can have an illness and still make it irrefutably obvious that you don’t understand more severe conditions'

Oh I understand believe me. That is why I have no tolerance for the coke can ok/ beans can not ok, kettle ok/microwave not ok arguments.

Genuinely disabled people need all the support they can get. I hope the reforms channel funds more effectively.

People are rightly commenting on ops diet and making suggestions. Cf is unexplained tiredness- it’s not a stretch to think ops diet might have something to do with it.

Isn’t that the pot noodle?

And, how can you be able to write numerous, lengthy, considered posts on MN, yet be totally unable to do an online shop? If you're too physically weakened to put a ready roasted chicken in the oven, how do you physically walk upstairs to get into bed? Or walk to the loo and lift the lid, depress the flush?

'Outdo'? No, I suspect it's more a case of trying to get the more obtuse on here (mentioning no names) to actually try and imagine being in a different situation other than their own. Stating one's limitations is not 'playing the victim'. Some on here are just determined not to listen

And since you're such an authority on how 'the disabled' should act, would you care to explain to us all should we actually care how exactly it is we should be behaving in order that you will consider us 'dignified'?

But this is just one day of her diet. She has repeatedly said it’s not every day.

And like I keep pointing out, I eat well and it’s done fuck all to cure me.

I think this is a really eloquently supportive post, which perfectly sums up my own views. I voted yanbu, op, and can only imagine how hard things are for you. But there has to be some realism and personal responsibility too, and there is some good advice on here about the small changes you may be able to make. E.g. milk and orange juice/ smoothies are also sold at roadside garages.

I don't know your full circumstances, whether you have any friends, neighbours or family nearby etc. Probably not. But I'll ask the question anyway - is there anyone at all in real life who may be able to spend half a day with you to go through all the things that hinder you on a daily basis and come up with some workable solutions to address the most pressing ones? Your fears about PIP may not transpire, but if they do, you will need a plan. Because simply shrugging your shoulders and saying you don't have one isn't really an option when you also have a vulnerable teenage daughter living with you.

In that case, on the days when she can do the school run and pop into the petrol station why isn't she purchasing healthier stuff in the petrol station to fuel her body more healthily? Because the knock on effect of that would, most likely, make her feel a tad better on the bad days.

Sorry another tangent - have you looked into EMDR for the auditory hallucinations?

And the book the Body Keeps the Score is an interesting one

The OP could live in a bungalow for all you know. Your post is bordering on heckling, which is not fair.

Well she has also said she “rarely has the energy to make anything healthy” so it seems it’s pretty close to her daily diet. If she rarely has the energy to steam some veg with rice instead if a pod noodle?

As a genuine suggestion for those of you with fatigue I'd log off after an hour or so's use. It is well documented that screen time can have a negative effect on tiredness levels. I believe reading a book may help, particularly at bedtime if unable to sleep at 2am. Genuine suggestion, I'm not being goady.

Are you?

The other thing that stands out to me is that my teenagers always got the bus to school because we had to go to work. This is yet another privilege OP has as a a disabled unable to work person. How can that be fair that they being disabled can commit to drive an hour 2 times a day to chauffeur their teenager DD around but not commit these hours to work for their money and their car? This is what I don’t understand. PIP is for help with their disability not to enable a teenager to be chauffeured to and from school. This is abusing the system.

I'm petrified too, OP but I'm trying to rein it in.
I had to take most of my benefits to court and won them all even when I didn't.
This probably isn't the best thread to ask this question, and it probably isn't this simple given how terrified people are:
but if we as applicants are appealing against the decision makers because we are being denied benefits due to 'not enough points' which is common and I've had this experience,
If we take the matter to court tribunal (as I have previously and won) isn't it hugely more likely that we will be given the benefits assuming we have the disability and are eligible?
I'm not suggesting that a court tribunal is completely fair, but with the correct medical evidence and enough of it, and hopefully coupled with an advocate (hard to get), is it something that we should worry about less?
I understand that some people will not have the strength or time or other reasons why a court hearing might not be possible or suitable and how long it takes for that to happen is unfairly long.
I'm very lucky a very kind friend showed me how to apply.

IT’s an example of a typical day from her and she claims not to be able to cook healthily due to her condition. Eating healthy benefits everyone and it’s possible to do it without spending hours cooking.

op posted because she presumably she was looking for other perspectives. While she might have expected just sympathy it’s not ultimately helpful to her.

Possibly, but I don't think much of this is helping the OP. At this point, it's mainly posters arguing about potatoes.

Nope. Your comments make clear you don’t understand. Just like you didn’t understand that senior, specialist dietitians can give tailored personal recommendations that are extremely different from generalist healthy eating / weight gain advice.

Its okay not to know about something, or not to understand. You’re not at fault for that. But repeatedly iterating the same ableist stance and refusing to make even the smallest effort to empathise or educate yourself is where you do start to be at fault. Many have taken time and effort to educate the posters who don’t get it on this thread. Showing a lot of patience in the face of ableism and attacks.

Because it would probably require more prep that she wouldn’t have the energy for because she’s done the other things.

You can set your phone to limit screen time. This could definitely be helpful- screen time can be addictive and draining

Her DD has SEN, so has to be taken to school. There is no abuse in this situation.