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?

Deeply unempathetic again.

Well sadly all these benefits aren't funded by empathy.

Some of you could do with reading "Diana's Story" by Deric Longden to understand what living with ME is like, and the pain of having even medical professionals refusing to believe you can possibly be as ill as you say you are.

Diana had to have her fingers broken regularly because her hands would curl up on themselves, causing her excruciating pain. She couldn't get out of bed for days, sometimes weeks at a time. She hated the reliance on others and would try to do things for herself, but just wasn't capable of it.

Eventually, Diana tried to run her own bath - a simple, every day task that shouldn't cause anyone any problem, right?
She fell into it and was too weak to get herself out. She drowned.

Read the book before you make another uninformed comment about ring pulls and pot noodles.

You keep saying that anyone who doesn’t agree with you lacks empathy. It’s a bit mean really. Maybe they just don’t have the same opinion as you?

I’ve seen literally NO empathy from some who are claiming they have empathy based on things like disabled family members. None at all. Only dismissive, unkind comments, attacks, insults, and comments that frankly verge on gaslighting where they have implied I don’t deserve PIP / shouldn’t get PIP / am not disabled / lack dignity / am being competitive / many more unpleasant things.

This is all typical of MN threads about disability at the moment. But it’s all the more shameful given this thread is about someone currently struggling and hurting.

No I’m not debating the food thing. I agree. I said in a pp that I use my pip payments to buy myself healthy convenience food that I otherwise couldn’t afford, and that eating well helps my condition.

Im trying to explain PEM. I won’t assume to know the OPs exact struggles or what she can or cannot manage. Just that with cfs/me sometimes you CAN do it if you HAVE to but you will absolutely pay for it afterwards.

I guess it’s hard to understand unless you have experienced it’s you’re the second poster to question it. 🤷🏻‍♀️

I am sorry this has turned into another disability hate fest

Agreed, although the OP did choose to post in AIBU rather than a more supportive area of the site.

There was a poster early on who did see a difference to their ME with a change in diet.

It is known that not one thing works for everyone, you get that with every illness or disability.

I'm just really amazed at the posters here who categorically exclude the idea and have convinced themselves they can't live on anything but crisps and ready meals and that there is no way they can change that. It mainly reminds me of myself on a few issues I was so deep in denial about and did not want to address or even try that I would have spoken exactly like that.

A bit of both of what? I don't eat meat or fish but let's say a vegetarian alternative, a tin of chickpeas. I'm pretty sure I would vomit from the smell of them alone when I'm in or recovering from that level of pain. It's not always sweet, sometimes it's plain crackers, but pain is exhausting and when we're exhausted we tend to crave calorie dense foods. The pain I experience is akin to labour pain, even described as worse than labour pain but I have no experience of labour and I'm probably infertile anyway so I can't compare the two. Would mothers here want to eat tuna and nuts in the midst of contractions, or bake a potato? It's a genuine question - as I said, I have no experience of labour.

@AzurePanda No, I'm not particularly worried about diabetes. I've had fasting glucose tests a few times as part of routine bloodwork and it's fine. I'm also on the low end of the normal BMI range so I think the risk is relatively low. I'm more concerned about getting something to line my stomach to avoid Naproxen burning a hole in it. When I feel relatively well I often still don't feel up to cooking but I eat things like plain yogurt with oats and seeds and dried fruit, 'easy' fruits like blueberries to snack on. If I feel up to it I'll make something like a thai curry which i'll eat over the course of three days or so, but there's still no way I could manage to eat that during a bad flare. I couldn't personally eat something like a pot noodle because I don't like that sort of food, but I can absolutely see why that would be a go-to for some people.

You are bedbound, you have carers. You are not being targeted by anyone.

Reforms are to reduce the massive soar in spurious claims. Genuinely disabled people are being put through the stress and strain because many people read the descriptors and think they can persuade a gp that they have a condtion.

As a disabled person doesn't it make you angry?

If people say things that reveal they literally do not understand the reality of living with a certain category of impairment, and refuse to listen or reflect when told about that reality, what am I meant to think?

So what happens if there is an unexpected road accident or something else happens that prolongs your journey? It isn't really safe to have a 5 minute buffer to get home otherwise you risk a catastrophic 'crash' in energy.

Let’s hope you never need them.

No, everyone does actually have the choice to eat a banana instead of a biscuit.

Do we need to choose the banana all the time? Of course not but it’s utterly ridiculous to claim someone would need to eat a biscuit because of their disability rather than it just being a want and a choice.

Yes yiu can. PIP assesses for fluctuating conditions . If the symptoms are present for at least 50% of the time then you have it. It’s not about he condition itself but the effects of it on daily life.

How can it be a disability hate fest when many of us have disabled family and friends and see the awful time they genuinely endure?

https://meassociation.org.uk/medical-matters/items/symptoms-post-exertional-malaise-pem/

If anyone’s interested in PEM and how it works in cfs/me.

I have the tool for opening cans. You can also get an electric tin opener for about a tenner that will open cans. No one needs to eat only pot noodles!

Empathy isn’t just agreeing with someone else’s opinion - there is too much of that type of “ah yes pet that’s so hard” and not enough resilience “ tough that’s life get on with it” . too
much “ if you don’t agree with me it’s because you don’t understand how hard it is” ans not enough self reflection “ oh how did they manage then when I am not ?”
no matter what is wrong with OP , she is making herself worse and those who pretend it’s harder to open a tin of beans or peaches than a pot noodle are helping her to remain really ill - that’s not kind

Spurious and fake claims do make me really angry, and I’ve been hauled over the coals on MN before for stating that I think the fraud rate is likely higher than the very low rate the DWP finds. I’ve posted about this earlier in the thread. But I think it’s still low - getting PIP isn’t easy at all. It’s very controversial to say as a disabled person that you think there are claimants who are exaggerating who are not found out, but based on my many many years of experience online, yes, I think there are some.

However. I think generalising from this to attack people with disabilities more widely is really unfair. Overall I have loyalty to disabled people that is very strong and I care about us as a group even though it’s unlikely I will ultimately lose PIP since I have a high number of points. I won’t lie and pretend I think there is no fraud above what the DWP finds even though it makes me unpopular on here to say so. But I still think disabled people deserve respect and dignity and that the , vast majority of us would never lie or cheat and just want to lead basic, decent lives.

@Lovelysausagedogscrumpy things are changing so we will have to see what happens next.

No they don’t. There have been literally thousands of times in my life where I had no choice about what to eat. You have no idea what you’re talking about.

I'm sorry, what? Did I say it was a revelation or disability problem?

Did I say I survived on biscuits?

Did I say it made me unique?

Did I ask for your opinion on what I decide to line my stomach with when I'm in excruciating pain?

And of COURSE I'm less fucking capable when I'm that unwell. What do you do when you're unwell? Run a marathon or something?

Bananas are extremely perishable. You need to be able to shop regularly and have sufficient money to have a stock of fresh fruit and vegetables continually available.

I have always been in shape and eaten good healthy food. Since I became disabled, that has become incredibly difficult for me. It just has. I'd love to be able to eat decent, healthy, nutritious food for every meal. But I have no idea how to make that happen. Gumption certainly isn't the solution, I can promise you that.

I should have said it doesn’f necessarily make a difference. I know some people who it has helped and many others who it has changed nothing for.