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?

@PIPsqueakybumFor when I struggle with cooking I keep frozen fruit, protein bars & nuts, low fat cheese slices, oats that can be microwaved OR just made up with water to porridge, etc healthier stuff like that. Also I take a Hair supplement every day to boost my nutrients.

The pip criteria is to specific and very physical focused it doesn't cover much on smi. I have bpd and bipolar. I also have a rare physical condition to but the specific questions don't cover a lot of stuff. I also don't think they take into account the effects of medications I take about 50 pills a day and I'm literally like a zombie.

I've also got loads I could sell. I used to have a good career and I liked nice things. But I can't do it. I'm then on the clock to package it and get to the shop, which is an exhausting task for me.

I can't even always get to the pharmacy for my own prescriptions, let alone take on sending parcels.

I'm sorry to hear that. People think CFS is just being tired; it's not. It feels like your plug has been taken out and you can't even get up from a chair. You can't move your legs to speed up, you just don't have the energy.

These proposals are very worrying for a lot of people and I'm very concerned about those with severe mental health issues.

I'm hoping as others say that these proposals won't go through.

I went all weekend without my pain meds as I completely forgot to get my prescription on Friday, and then forgot again on Saturday until it was too late and the pharmacy was closed. It’s hard doing life when your brain just doesn’t work anymore…and doesn’t exactly make me an asset to any employers.

Iv got loads i could of sold but I often can't leave the house so didn't want to risk it so a lot ended up being thrown away. It's like you can get free car tax for the mobility part of pip but you have to go to the post office to sort and I just couldn't do it so I just paid it. I get my medication delivered so much easier.

You live on pizza, coke and pot noodle, and you wonder why you don't feel good!!?!

Perhaps stop eating rubbish, give your body half a chance and I might feel some sympathy.

I understand being bone tired, having suffered stage 2 breast cancer, but you have to force yourself to eat well. We all have some personal responsibility.

Yes that’s exactly how it feels. Even a sitting down job would be hard as presumably I’d have to do some talking and/or thinking and I often can’t remember words or have the energy to talk. I’ve been trying to do my UC self employment earnings thing for the month for the last 3 days, but I do 10 minutes and then keep making mistakes and realise I’m just too exhausted to do it.

How can 49% of people reading this thread possibly think you or any of us are being unreasonable. I think sometimes people forget anyone can become disabled at any point

No need for this comment at all

Well no, not every day, but when I don’t have the energy to cook or go to the shops I have to eat what I can. Are you offering to come over and cook some healthy meals for me?

I wish they’d speak up and suggest how we might be able to survive on no money at all rather than just click that we are unreasonable. Maybe they have suggestions of employers that will take us on?

Couldn't agree more because I'm open to options because at the moment I feel like i don't have any

The eat better comments infuriate me. ME isn't just tiredness that you can push through! And no amount of healthy food will fix it. I'm in Scotland so not sure what will happen to us but agree I'm concerned too. Feels like they are targeting certain illnesses unfairly.

Sorry Op, I don't mean to be unfeeling but seriously, put in a supermarket order once a week.

Order salad, frozen fish, wholemeal bread, eggs, cheese, leafy green vegetables, mini chicken fillets, fruit. Nothing that takes more than 15 minutes to cook. Lots of things can be eaten without cooking.

Surely you can see that eating well and boosting your immune system is essential.

That is what it feels like. No options. But as long as we live in destitution and are suicidal, then the country can bounce back and it is ok. That is how it feels.
I have gone to some real dark place over this too. Express it on here and you get told it is emotional blackmail. The gov wont care if some of us take our lives over it. We are colleterial damage

I know saying put in a supermarket order every week to someone who doesn't have these disabilities sounds so easy or to cook a meal that only takes 15 minutes but its genuinely not. Iv gone weeks without showering or brushing my teeth because it's to hard this is the reality of being disabled all these small simple tasks often become impossible

I often try to do an online shop, but then don’t have the energy to complete it, or get distracted and by the time I go back I’ve lost my slot. Or I struggle to think of things I can order which require little or no preparation. Or sometimes I manage it and I do buy healthy stuff but then over the following days I don’t have the energy to do more than eat a piece of fruit or a Babybel or some crisps, or something that doesn’t require any energy at all, so I end up binning stuff in the fridge that’s gone off. Sometimes I can make healthier meals, but it’s better that I have options that literally require no cooking at all because I can’t rely on having the energy to make even a simple meal.

Thank you, you summed that up perfectly.

How old is your daughter?

I’m at a loss to how the government things this will save money in the long run. There’s a strong link between poverty and poor health - so push a bunch of already sick/disabled people into poverty and that’s going to create a whole new load of stress on the NHS, if that even exists still.

15, why?

Your diet and timings of consciousness don't give her much input

Is she having support as a young carer?
IS there other adult family present in her life?
Are the school aware?

How is this relevant? It sounds like you are trying to shame OP.
Please don't

She has her dad who sees her, and the school are aware. She has SEN so doesn’t really do anything that involves caring for me. The whole thing is a mess, I have tried to get help from SS but they came out and met me and then said there’s nothing they can do to support me as they don’t have the funds. The system is broken. So we just muddle on through. She’s happy enough but I wish I could do more with her.