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?

She’s already said it shouldn’t be a long term issue. And looking to move isn’t exactly straightforward.

Okay, so you are able to take her a few times a week because there is absolutely no alternative, none. It is heartening what people can achieve when there is absolutely no alternative.

The whole PIP/benefits situation should never have allowed to become so hideously bloated. I saw my DB at the weekend (he works in Private Wealth Management in the City) and a mind-blowing amount of wealth is leaving this country every single week.

Labour have been left with no choice because there is simply no money left to fund all of this. It's gone.

Nor are they funded by all the people sat at home available to spew hatred on mumsnet any given week day!!

And as I replied above to another poster who mentioned other parents might like to do the school run but can’t because of work, those other parents have the health to spend quality time with their children at other times, taking them to the park, playing games and sports with them, taking them and watching them doing after school activities. No such luxury with CFS I’m afraid, that time in the car maybe the only time the child sees their mum awake that day.
so while you see ithat time with her muma “luxury” that she shouldn’t have, maybe spare a thought for that child for never being able to jump about and dance and sing with their mum, go to a theme park with their mum, or when they are spending their weekends and school holiday time laid at the side of their mum, while she naps on and off all day, just to be there for the times she manages to stay awake for a while. Having an unwell parent is devastating for children. Have a heart.

You've been told, repeatedly, that the alternative will be poverty, homelessness and in some cases, suicide.

😂

Ok great, I’ll ask the judge in the family courts to amend the zero contact court order that doesn’t allow him anywhere near her for her entire childhood for her own safety, so that he can do half the school runs. Oh and get the non molestation order towards me removed too I guess.

Do you honestly think if there were other options, I’d be CHOOSING to use all my energy getting her to school and back?

Yes, I manage to take DD to school and back a few times a week. What correlation does this have to me getting a full time job which is what I’ll be expected to do under the changes?

She is looking for the state to step in to resolve her issue. She wants her child to qualify for state funded transport, but what if the child doesn't qualify or the scheme is potentially changed?

Moving isn't straightforward but living presumably pretty remotely with CFS is very very risky and putting a lot of strain on her. I don't know how her DD can see friends or socialise if she's relying on her mum for transport.

I don’t know if she lives remotely but my friend’s son had to attend a school for boys with autism. That was approximately 23 miles away and we don’t live rurally.

To move I’d have to find someone willing to exchange HA houses with me, which could take years, by which point DD will have finished school. There’s no way I’d look at getting a private rental when I’m on the cusp of having no income at all.

I was trying to illustrate what it is like to live with MEcfs and have to make choices on how you spend energy. None of us are privy to all the ins and outs of her life.

I disagree that she's not helping herself. People who are making these suggestions do not understand. I'm sorry.

If her daughter doesn't have an ECHP already then I doubt she attends this kind of school

And there are no state funds left. The money has gone. All off shore, no doubt.

The wealthiest tax payers were only ever going to stand it so far, then just stop. And they've stopped.

Please tell me how I can improve any of that with “hydration” and vitamins
bearing in mind I can’t take probiotics

there is no vitamin deficiency as I have blood tests every 12 weeks
i simply kill off my white blood cells. The endo pain can’t be improved until I have surgery

I am fairly confident if diet would improve the fact I don’t have a fucking functioning immune system then haematology MIGHT have perhaps mentioned it
or are you telling people on chemo to eat fruit too? Because that little blood disorder I have is neutropenia - and when it’s really bad I am advised NOT to eat fresh fruit or raw veg or salad

Then she is very smart and also ill informed and ignorant.

There is 18 months before these changes take place if they do.

You might not be affected OP.

But say you are what would help in the long term, would moving to where your daughter is likely to be at secondary help? Could you then get rid of the car expense? Will her dad, your ex, get a pay rise. would he be able to financially contribute to your household more?

There might be solutions that you can’t think about right now because you are thinking your benefits are definitely going and it’s all doom and gloom but you could look at other options, you don’t have to take them but consider them.

Sometimes, many times, problems can create solutions that were better than the original situation.

If you did move to within walking distance of daughter’s secondary school, that might mean she has friends locally and isn’t as far from her teenage social life. Would this be a bad thing as she gets older, especially if you are going to be unable to find the energy in the evening to accommodate these things.

The days of big state are reducing, it’s not that people don’t want to care or help it’s that the finances aren’t there, LAs are going to go bankrupt next year. Not all of them but ones that are are citing the unsustainable increased complex needs of children and adults that no longer can be funded.

These proposed cuts are to protect the very vulnerable, which you are a part of, but it may mean some give and take for everyone.

I would try and not despair and start looking now at potential options for a longer term solution for you, your daughter and her dad. Together.

Don’t bother, some posters genuinely think they know better than the specific advice given to you by healthcare professionals. There is no room for “actually this is exactly what I was told to do for my condition/s”. Just general, vague healthy living guidelines that you could find on an app or chatgpt.

You didn’t explain though did you? You repeatedly banged on about your conditions and your limitations and berated anyone who was querying the OP’s ability to do such things. You’ve made the thread about you. People were genuinely asking the difference between putting say a jacket potato in the oven versus a pizza and no explanation could come from you as you’re not the OP. Yes we all get that it’s not something you could do but the OP possibly could and genuine suggestions are just stamped on with the ableism missive.

How do you do this if you can't get out of bed?
The level of ignorance here of the truly horrendous reality of living with me/cfs is mind- blowing.
I know because I've had it for 30 years, can't work at all and am considered to be moderately affected.

Labour have failed on this. This will impact welfare.

How about all the money that had to be haemorrhaged out during Covid quarantines to furlough people?? I can’t imagine how much that must have cost.

I find it funny that people on this thread have forgotten all about this. You were all happy to be taken care of in your hour of need and now you have the cheek to be telling disabled people about their disability that you know nothing about.

Hypocritical to say the least!

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. On the contrary, I wasn’t describing my own behaviour in most replies - I did give examples later in the thread in response to specific questions, but not initially. All my initial posts had nothing to do with my own situation at all. What we eat day to day looks nothing like the foods being discussed on the thread.

You are obviously incredibly threatened by my posts and I’m so interested as to why that is. I suspect it’s because you don’t want to see anything that forces you to confront the reality of someone on MN who is severely disabled and whom you can’t dismiss casually as lying and exaggerating. So instead you are trying to get at me in another way. Maybe it’s not that, I’m just speculating.