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 add oats and seeds to muesli, shop bought sliced wholemeal bread/toast with peanut butter (I keep bread in the fridge as it lasts much longer), fruit you don't need to cut/prepare like apples/pears, anything with toast so egg sandwiches, beans on toast, cheese on toast etc. Is that too much prep or possible?

I’ve only got as far as page 12 of this thread but thought I’d just comment as there seem to be many posters who believe that if I just ate healthily and good a good night’s sleep I’d be cured and ready to head out to a full time job.

No doubt these comments will continue regardless but I will just interject with repeating that my diet was not the cause of me becoming ill. Living in fear of my life for a number of years causing an extreme amount of ongoing stress was, then I got a nasty bout of flu and after that it was like my system collapsed. My illness’s cause was not diet related.

Over the last 10 years, having sought all the help I can, through the CFS clinic, counselling, CBT etc, I have tried many different diets to try and get better. None have made any difference to the exhaustion I feel. I realise that I just gave a snapshot of one day yesterday, which admittedly didn’t involve any healthy food choices, but it has been almost a week since I got shopping and the healthier options have been eaten (eg yoghurt and berries). So without the energy to go shopping again I have to manage with what’s there. There was a pizza in the fridge that DD hadn’t eaten and was going to be binned if I didn’t eat it, so that’s what I had. But generally speaking I loosely follow a high fat, low carb diet, mainly because I have high blood pressure and it helps to control that. But days when I’m bone tired like yesterday, those plans go out of the window.

RE sleep - from the NHS website:

Many people with ME/CFS also have serious problems with their sleep that do not get better.
You may find that:

• you do not feel refreshed after sleeping – like you have not had a proper good night's rest
• you keep waking up during sleep
• you feel stiff, tired or have flu-like symptoms when waking up
• you feel very tired and sleepy during the day

I do find I feel a bit better if I manage to get a good night’s sleep, but that’s not easy. If I nap during the day, which I try not to but sometimes it’s impossible to stay awake, then it’s harder to get to sleep at night, like last night. There was also the clock change over the weekend so I had to get up an hour earlier yesterday, which for a healthy person might mean that they feel a bit more tired than usual, but manage to shake off, whereas for me it caused tiredness to the point where I literally had the shakes. I also get auditory hallucinations at night (again caused by the trauma), so I can be dropping off to sleep and then it’s like someone shouts something in my ear, often my name, which makes me jolt awake feeling terrified and then I get a massive surge of adrenaline which then means I am awake for at least the next couple of hours.

So it’s not quite as simple as eat better and get more sleep. I wish it was.

She can get her husband to cut her nails and brush her hair! We shouldn’t be funding this just cause he doesn’t want to do it ffs!

Don't worry - I do cut my husbands nails for him. It's incredibly difficult because his limbs don't work the way they used to, his left foot and his left hand are turned in on themselves so it's near impossible and I often hurt him, accidentally. I just want you to rest easy that your hard-earned money isn't being spent on a service that could do this for me.

We’ve actually done this. I’ve got a big long thread on Property under another name. We built an annexe so I could look after my DM and stepdad as they’re older and struggling. I have two DC who are autistic, at least one will never live independently, the other one 50/50. We’re just in our own bubble trying to cope and get by,

Sorry OP, derailing your thread. So difficult to not respond to these ignorant hateful ableists.

We shouldn’t pay for it is all I’m saying. Sort it yourself but don’t expect me to fund it. It’s utterly laughable that you should think people should get cash to get their toenails cut. Laughable!

”Nobody will employ us because we’re too risky to take on”

This here is a MAJOR point that is always overlooked or not thought about in these discussions. It is so hard to find a job as a disabled person. Hours you are capable of or the flexibility needed for a fluctuating condition, working conditions, the type of work you can do etc etc. Then employers who will reject you because as pp said, you’re too risky. It’s never just as easy as “get a job”.

Relying on family help is fine if you actually have family.. most people don't believe me when I say I don't because it sounds so far fetched. I'm not the only one, so what do people like us do? I imagine it will be a case of living in homelessness shelters and relying on charity help. Which is just another kick in the teeth. It's not my fault I don't have any family. I didn't ask to be born..
I think some people shouldn't have children. I made the decision not to for many reasons, including health reasons.

That’s fine, but I expect someone with a medical need to make an appointment with an NHS podiatrist.

Are you always so rude and ill informed ?
Jesus wept.

I think people would be shocked when they find out that Spain and Italy (where the sun is) are pretty much bankrupt, so definitely won't be giving out money for supposedly manageable disabilities.

PIP - Personal Independence Payment, which was created to help disabled people to keep their independence, it is not even means tested and supposed to help in keeping you at work/active. But a lot of people took it completely for different reasons, unemployment replacement etc.

As somebody mentioned, their husband needs a lot of help, but then he drives the car. Or lets say you get quickly fatigued due to chronic illness, but can take cabs on your worse days to stay in employment. These are the people this has been designed for. And also it doesn't mean you should be claiming it indefinitely, if lets stay autoimmune condition is in stable remission for 5-10 years there's absolutely no reason why someone should be claiming PIP.

But as with everything it ended up being claimed by everyone and their dog, people lie about severity of their situation etc. etc. So I don't believe that people who truly need it will be cut off, only the chancers.

I sympathise OP but I agree with some of the other posters that say you need to take more accountability for your own health. Diet is so important and you are fueling your body with shit. Have an apple or a banana. Chuck chicken thighs, baby carrots and baby potatoes in a pan with salt and pepper. Get the mini ones so you don’t have to chop or peel anything. It’ll take the same amount of time and effort as opening a pizza. Microwave a jacket potato, make mackerel/beans/tomatoes/cheese on toast. I think the issue that some people have reading your OP is that you have enough energy to drive your DD and you also have the energy to presumably go to the shop every day to buy processed crap food which is unaffordable for a lot of us.

Eh? That makes no sense. Plenty of disabled people drive adapted cars, and that includes some severely disabled people, who are able to drive cars safely, otherwise they would not be on the roads🙄.

@PIPsqueakybum I have CFS/fibro not diagnosed, I have been very lucky that mine isn't as severe, I am able to work p/t. I do understand, I don't think there is a magic bullet, I do think some things help and I've had this for over 20 years. I don't think everyone who has it is able to work, there's varying levels of severity.

Magnesium - glycinate for sleep, malate in the morning. Be careful to take it with food as it can have a laxative effect! Helps your muscles repair and helps with sleep. Start very slow as it's potent.

For god's sake. My DH has circulation issues. It is important that his feet are taken proper care of, so a podiatrist cuts his nails etc.

I look after my DH day to day, but I am not a podiatrist or a nurse or a professional carer. There are some things I need other people to do for him.

I still think the OPs ex should do more. If I had a SEN DD living with my disabled ex, I would do everything I could to help: online shop, food dropped off, school run etc etc. What is he doing for his DD?

what does your child eat? x

Living in fear of my life for a number of years causing an extreme amount of ongoing stress was, then I got a nasty bout of flu and after that it was like my system collapsed.
I also get auditory hallucinations at night (again caused by the trauma), so I can be dropping off to sleep and then it’s like someone shouts something in my ear, often my name, which makes me jolt awake feeling terrified and then I get a massive surge of adrenaline which then means I am awake for at least the next couple of hours.

Our society really needs to get to grips with healthcare for mental illness and trauma.
It seems clear as day that if the mind/brain cannot process the trauma, it will shut down, and then shut down the body.

Why is the western medical model so ultra-focussed on physical diagnosis and pills and surgery, and so woefully inadequate when it comes to the mind and emotions?

But this is already happening. There are millions of unpaid carers saving the state billions each year.

centreforcare.ac.uk/updates/2024/11/new-report-valuing-carers-uk/#:~:text=New%20statistics%20show%20the%20economic,the%20Centre%20for%20Care%20today.

you know it's just really, really rude to assume you understand all the ins and outs of all the possible conditions/diseases/situations that it may be possible to claim PIP for. It's just best to acknowledge that people know their own situation, and how the condition affects them (not the people you, or anyone else, claims to know with the same condition).

My son is type 1 diabetic. It is terrifying how many people think they can a) cure him (they can't) and b) tell him to manage his condition better and advise how that might happen (invariably, they are wrong or trying to give him advice which if followed could be life threatening).

I rarely say this but 'be kind' is applicable to the OP and anyone else concerned about how these proposed changes will affect them. Be kind because you never know when something like this is going to affect you.

You'd be amazed at how much good nutrition helps a condition.

I ate a slice of Domino's pizza last week. It made me tired and irritable and I just felt like lying around all weekend! We eat fresh, non-processed vegetarian food. It can be quick and easy! A baked potato and beans is as easy as boiling the kettle for a Pot Noodle - those processed things are vile!

How do you imagine they get to their appointment? Do they materialise like the Starship Enterprise crew?

Diet is proven medically to have an affect not only on physical health, but mental health too. So it would be very naïve to believe that poor diet and ample volumes processed will not have an impact at all.

But yes, it was rude way to say it I suppose.

The challenges the disabled face are immense. However, we are discussing welfare cuts that are being made because the pot is empty. No amount of justification can change that fact. Denying it is burying your head in the sand.

Throughout time humans have faced challenges but we evolve.

Yes so the NHS should take care of it.