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?

I call BS on the notion that rich people are fed up with paying taxes. They have become richer and richer since 2010. They quadrupled their wealth from 2010-2015 alone!

Guess you missed OP quite clearly saying that’s not a normal day’s food for her.

Your need to complain to your MP to put pressure on them to stand up to these changes, even if they are Labour. I'm an unpaid carer and have emailed my Labour MP twice so far and her office manger has assured me that my complaints and questions will be directed to the Minister for Pensions. Make sure you also sign all the petitions online.

Brexit and furlough payments are likely to be the reason for the mess we’re in. Plus years of running the NHS into the ground.

'Multiple people gave inane, inappropriate, unasked for advice about what OP should or shouldn’t eat, making it apparent they have no comprehension of food access issues'

'Inane and inappropriate'. Lovely.

Inconveniently many people stated eating junk food will not help, and if you can boil a kettle for a pot noodle you can turn a microwave on for something a bit healthier.

'Food access' issues? Do you mean food purchasing bad choices?

The majority of me/cfs sufferers have insomnia. Hope that helps.

Tbf Mn was mostly for it. A few pointed out the cost and it went down as usual. Badly. The usual attacks etc

I’d say the people who were for extended costs back then are for welfare.

This may not be an area of etiquette with which you’re personally familiar, but lecturing someone who is having a hard time that they should just change their diet and they’re eating Wrong Stuff is actually terribly bad manners and you shouldn’t do it.

Not to mention the fact that, for the millionth or so time, you have no idea what that person actually can eat or what is suitable for them. One person’s junk food is another’s “won’t trigger the IBD”.

Thank you for making it clear you’re just here to post ableism and have nothing else to contribute.

Agree the gov rhetoric on this is ridiculous and worrying. Have you taken any political actions, such as contacting your MP?

Can your teenager not get themselves off to school? It seems like not a good use of your limited energy.

Can you set up a regular weekly delivery? Things like fresh soups you can heat up would also be much more nutritious than pot noodle.

Smoothie with fruit, yogurt peanut better you blend up and take with you or even a bought smoothie better than a coke.

There as lots of things just as quick that don’t involve chopping vegetables etc.

As well as online shopping, there are also some healthy food delivery companies where you can put a prepared meal in the oven or microwave.

what's wrong with pizza ?

'This may not be an area of etiquette with which you’re personally familiar, but lecturing someone who is having a hard time that they should just change their diet and they’re eating Wrong Stuff is actually terribly bad manners and you shouldn’t do it'

It is advice. Not what some folk want to hear clearly but advice nonetheless.

I'd love to hear how disabled people are supposed to have access to good quality healthy meals without the money to purchase them.

I'd also like to point out that I drink a lot of water and I take a heap of vitamins every day. It has not cured my disease.

Ps just so everyone knows it the wealthy who pay the majority of taxes !!!

Btw, parliamentary committee today discussed remote working for people with disabilities. Going to watch it later

https://www.parliamentlive.tv/Event/Index/efa8bc63-fd9c-4d4b-b12b-46d4da344932

I know some very wealthy people. Multi-millionaire sibling. None of them are running off anywhere, their lives are here.

There was lots of advice on better diet etc to help energy levels. Better than defeatist attitude of doing nothing to help energy levels but sit on here moaning fir hours on end. That's a full working day.

The majority of people got paid for doing nothing during the furlough period. How much did that cost? Anyone who was bailed out this way has no right to now say that the country is in a mess because of PIP.

I don’t disagree with it. What I disagree with is the ableist cnts now getting the knives out for disabled people and telling them they’ll just have to do this that or the other when they know fuck all *about disability.

I’m definitely not threatened by your posts. 😂

It’s meaningless. You are advising things which have no connection to people’s actual circumstances, like saying PP should eat fruit and veg when she has neutropenia and her HCPs have said the exact opposite, or that my senior specialist dietitian must be incompetent when her advice (yes, including drinking Coke!) kept me from going on risky TPN.

Your advice helps no one.

It's the point if you can cook a pizza you can cook a bit of chicken or something else healthy and protein is good for you. A salty greasy treat like pizza is fine - as a treat.

I’m curious why you felt the need to post such a bizarre response then.

It’s really sad to see this thread filled with hate.