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 am disabled. It's not a label, it's a fact.
I was disabled before I needed PIP, and I'll continue to be disabled when they take it away.

This is such a profoundly ableist comment I don’t even know where to start.

No one chooses to have a disability. It’s a material reality, and one you are very lucky to have remained so unfamiliar with.

That doesn't answer my question.

In that case she needs to make other arrangements for her dd to get to school. If she is so ill she can’t make basic healthy food to eat, that needs to come first and her dd will need to take the bus.

I think having a purpose in life which comes through work, hobbies etc. is a preference for every disabled person. And majority do end up working for the rest of their lives bettering themselves, health, having a hope.

When hope goes, apathy and laziness sets in, every excuse in the world not to get up. We need to start giving tools for people to keep hope alive, via mental health care, psychotherapy etc. We seems to only concentrate on manging physical symptoms, which already are advanced quite far, but can only do that much.

Because her daughter has SEN and is at school 17 miles away. Without any support, which OP has asked for, she has no choice. Maybe it would enable OP to work a bit more if the support was there. It’s not like she’s not trying. (But also acknowledging that maybe it would be too much for OP to work more too). And don’t forget PIP is not specifically an out of work benefit.

I understand as I have told you that no experienced competent dietician would recommend coke. Maybe if the alternative was dying of thirst in the desert but I can't think of any other time that there wouldn’t be a healthy alternative.

I have a lot of experience and knowledge regarding health care and disability that is why I've disputed many of your points about such things as a kettle is easy to use but a microwave isn't. A pot noodle is easy to prepare, a healthy microwave believe meal isn't.

It is why we need the reforms sadly, as demonstrated by the contrary posts we've seen here.

CFS is a disability. I have multiple conditions that are absolutely “real” (as in diagnosed with unequivocal testing) and I think it’s splitting hairs and being quite hurtful and offensive to suggest CFS/ME somehow isn’t a disability. This is an archaic viewpoint. While it’s not well researched or well understood, the research is slowly progressing, especially with Long Covid too now, and it’s definitely a real medical condition affecting energy. There is also an objective test that can be done, it’s just that the UK doesn’t offer it.

A guide book on how to win your disability benefits
This has been created by 'CPAG' but don't let the name deter you, it refers to people of all ages.
The website Disability rights UK is also good.

Then you prep the (incredibly) simple meal on your better day, pop it in the fridge/freezer to reuse on your worse day.

Honestly, I think I need to leave this now and step back through the looking glass.

I sincerely hope that the reforms redirect all the money to those who genuinely, truly need it and they receive the very best support as a result.

Literally not relevant to this situation though. It's not about keeping the food down or gaining weight it's about low-energy food prep and it's completely true that there are lots and lots of low-energy food prep that results in a healthier meal than a pot noodle.

I'll still be disabled if money was removed

I can't do everything possible to avoid being disabled. As well as a rare birth defect, I'm also disabled because of a side effect of medication I used to take. There's no cure for that

Again, for about the fifth time, this was a specialist, senior dietitian working in a MDT that dealt with complex conditions. She successfully helped me avoid having to go on TPN and get a central line, thereby averting the risk of sepsis and all the other attendant risks of being on TPN. The fact that you seriously think that suggesting I drink Coke somehow invalidates this woman’s experience and the positive role she and the team played in my treatment (which helped me to now be eating food again, and I am now eating an exemplary whole foods plant based diet) is perfectly illustrative of how little you understand complex conditions and the kind of care and particular tailored advice that they involve.

That's quite a low you just sank to there, calling a disabled person privileged. Isn't it just a pity life swapping isn't a thing, then everyone could be happy. You want OP's conditions so you too can be part of the 'privileged' PIP gang? I'm sure she'd swap in a heartbeat. Jesus wept.

Oh, and by the way, your genius scheme for stealing swapping pensioners' pensions for AA? This may come as news to you, but many pensioners have no disabilities or care needs. Absurd logic fail.

Yes, it is highly relevant. Multiple women with CFS/ME have experienced nutritional collapse and ended up with severe malnutrition, unable to eat, tube fed and hospitalised. That’s why I’ve reiterated that “fed is best”. Of course whole foods are better than UPFs (I eat them myself), but maintaining nutrition is key in CFS.

This is such an ignorant post. Whether I receive a penny in benefits, or not, will never have any bearing on the fact that I have a severe disability. I have no shame in saying I am disabled, and I have plenty of self respect thank you, which is not dependent on how I am supported.

Sometimes you’ve exhausted it all though
my conditions has two options
take the injections - so fever, headache, nausea, bone pain, flu symptoms for 24-48hrs after each one
dont take the injections - higher risk of sepsis, more severely immunocompromised
it doesn’t mean I’ve lost hope but it’s a shit choice either way and my condition has no cure

Op

There are people who simply can’t accept your limitations

I had significant fatigue and some of your posts resonated with me.

Unfortunately I was undiagnosed for 20 years and therefore lived with the label that I was lazy - that feeling of waking up absolutely shattered was my daily norm and I’d have to be very creative with my time to ensure I could manage my children/home and job.

Luckily I got a diagnosis and treatment 18 months ago and now I no longer need a two hour nap in the afternoon!

But when I did there was no stopping me - lack of sleep made me grumpy and useless!

There is something called the body keeps the score that has helped some CFS sufferers so might be worth you looking into it

I’ve said it before I don’t have a chronic illness because I’m depressed, I get depressed because I have a chronic illness. I would LOVE to work. I’ve worked since I was 13. It is absolutely soul destroying knowing I’m not able to contribute and participate in life because my body won’t allow me to.

I’ve had extensive therapy for feeling worthless because of my lack of ability to contribute to the household and society anymore, and to not be self sufficient anymore. (I was previously a full time working single parent and I was so proud of myself). All of that is gone. I’m lucky to have a husband to support me but nothing is guaranteed is it and it has tested our relationship at times.

It’s threads like these where people wilfully refuse to understand how things can be for people, particularly for those with invisible, fluctuating conditions, that make me doubt myself too. I really shouldn’t get drawn in but it’s hard not to when you feel you have to defend yourself and others like you.

Yes but it’s more about the mindset that if you are so disabled you can’t work and need benefits being able to commit to this journey and perform it contradicts everything you are claiming about your health in order to get PIP.

This is why PIP has to change the system shouldn’t allow you to be able to commit to a task which contradicts the statements you made in the first place in order to get that disability.

The OP even said she only scored 2’s this is why PIP is looking to change the eligibility to 4’s which is going to be hard for someone to claim if they can drive 2 hours a day on a regular basis when it is needed.

I wasn't attempting to, I was mirroring the pp's language back to her.

Thanks for telling us all about CFS (which I have myself btw) and that it isn't a 'real disability', though. All of us with CFS are indebted to you for setting us straight on that one. Do you have it yourself, btw?

All the more reason NOT to encourage people on threads like this to believe that their nutritionally depleted diets are acceptable, when there are equal-energy and far healthier alternatives.

Sounds like a very difficult situation OP, you have my sympathy 💐
Like a pp said, any one of us could become chronically sick / disabled at any time. It would be good if people could show a bit more compassion towards you and the situation you find yourself in. There's so much spite on this thread, it's depressing.

Hope has often been a downfall for me. Because each time I hope something might change, I’m always disappointed.

I said on another thread of mine. I liken it to when someone close to me died. In those first few moments on waking up, you’re in blissful ignorance and then it hits you like a train. I get this when I think about doing things. My husband starting hiking last year - something I always wanted to do and would still love to do - my initial thought was genuine excitement at the thought of doing it too. And then came the hit from the train with the realisation I couldn’t do it.