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?

This doesn’t sound safe at all. Clearly these people should not be driving. We saw the horrendous result of the woman who had an unexpected epileptic seizure and killed two kids in the car accident in Wimbledon. If someone is going to “crash” like this, they should not be driving imo

Endometriosis? The pain description is very familiar. I just want to sleep after a flare

It doesn't stop people from being ableist. Heck I've even had (not on MN I don't think) other disabled people be very ableist towards me. Including people with the same diagnosis

I can’t avoid work unfortunately even though it makes me tired.

You are not grasping what I am saying. You can’t pick and choose when your disability will stop you being able to function if you can safely commit to driving two hours a day in a set timeframe you can commit to other things.

That is not what disability benefits are for we would all qualify if we followed your reasoning.

I also manage an autoimmune chronic condition.

Oh god, you do know that this wasn't about bananas, do you?

@PIPsqueakybum please consider the best use of your energy on this thread. I get it but being provoked by people who won't ever understand is not going to be good use of your spoons!

I'm in a similar boat though doing a bit better.

I do think online shops are really important. If you order once or twice it saves your favourites. I can get a quick shop done quite easily usually. I also sometimes do the shop and then book the slot rather than run out of time iyswim.

The benefit changes are horrendous and I hope they don't go through. People with ME will be pushed to severe if they are forced to take unsuitable work. I don't know what suitable work there could be.

I am working because I had my job before I got ill. They've been ok so far at adjustments though I worry about blue badge renewal.

I guess everybody who predicts or supports some change in the benefits system is now ableist.

@luna25 Yes, that's it, in addition to another condition. I'm sorry you have it too.

I think many know me/cfs/fibro cannot be actually proven or disproved so it goes on the patient's descriptions. Many would like top up their salary by £430 (that's just the care rate as you'll know, no need to go for mobility where more proof is needed).

I'm not by any stretch suggesting cfs/me/fibro is fake but some people do exaggerate to get the points. We know this.

It needs to be much more closely monitored so that bedbound people like you who have carers get what they are entitled to. Other people who live a relatively normal life need to focus on self care, good diet, lifestyle and getting to bed at a decent hour.

But they don’t. You’re insulting everyone who doesn’t agree with you making more and more wild claims. People don’t lack empathy or understanding because they won’t go along with your narrative.

And it wasn't medical advice. But why not try it?

ME is not special in that regard. Many conditions, mental or physical, are trial and error. There is standard recommended treatment, then there is 2nd or 3rd line treatment, then there are trials for new treatment. No such thing for ME, but if someone with the condition has reported it helped them I would absolutely try to see if I could get some of my life back.

How exactly would we all qualify if that was my reasoning? PEM is only something you have if you have cfs/me. It’s the one thing that sets the condition apart from “just being tired” or fatigue based symptoms of other illnesses.

But you seem resolute in your opinion so I’m not going to try and get you to understand PEM /cfs as I don’t think you want to.

Yeah stage 4 deep infiltrating with adenomyosis

This has to be a joke, right?

Exactly.

Absolutely- these conditions are very subjective based on self reporting. Good nutrition would certainly help

in addition to this 46576 , very smelly jelly talks about disabled people as if they are a homogeneous entity……. Very patronising!

I haven’t made any wild claims. You just don’t like to be challenged. It is by definition a lack of empathy to not understand the experience of someone living with an energy limiting condition. I don’t even have CFS myself but I can empathise with the experience of it.

I have never said it shouldn’t be tried. Of course it should, where possible. It’s the fact that people assume that symptoms will magicially disappear or that people will get better that I was trying to address. As it always is on these threads, you get the ‘well this worked for me or someone I know, so it must be a cure all for everyone’ posters and it’s not helpful.

And that’s before we take into consideration that it isn’t always possible for some people to access nutritionally dense food regularly for many reasons.

I suffer with nausea and at one point could only stomach toasted white bread or buns. And sometimes I didn’t even have the energy to toast it. I’m going through a period of being able to tolerate more nutritious stuff on a regular basis but that’s because my husband does a lot for me too.

Not true at all.

I’d stop. Pull over. Call someone for help.

What would you do if you took ill at the wheel?

Actually there are treatments for CFS/ME. Nothing curative, but definitely a wide range of treatments in development and use all over the world. Few of them are on the NHS. I have a lot of friends with CFS.

I understand it I just don’t believe that PIP should cover disabilities that allow you to schedule in your PEM episodes around 2 hours a day of scheduled driving activities. Surely you can also commit to work in these circumstances if you can successfully predict when you will be able to drive and have a PEM.

This is my point OP’s disability conveniently fits around her commitments. Surely, disability by its definition does not follow a set schedule?

I obviously don’t know the OPs individual situation, so can only speak from mine and my daughters, we have autoimmune conditions that cause the CFS. These illnesses come in flares, the symptoms I describe on my previous post are the worst days, I also mention not leaving the house for weeks, as in not at all, so obviously not driving, nada. We also have better days, which to a usually well person, would still feel like they had been hit with a tonne of bricks, but for us we are so used to being much worse, the good days are when we can have a semblance of a “normal” life. We don’t always have sludge for brains, we can feel awake sometimes, but on those days the problem is we try and do more than we should, and make up for the days and weeks of being bed bound, then what happens is we get post exertion malaise, and end up in a bad flare again, it really is a vicious cycle. The urge to “do everything” on a good day is so strong though, especially if prior to becoming ill, like me, you were a very active person, in a professional job, with a very ambitious attitude.
i absolutely agree that no one should drive if they are feeling very unwell/fatigued, including op. I also wouldn’t choose to eat pot noodles and drink coke, but I’m not going to judge that, because there is also probably some clinical depression going on, which goes hand in hand with cfs, and people who are depressed (even without cfs) often don’t look after their wellbeing, my daughter is unfortunately one of these people, dealing with chronic illness in your early 20s, when you should be in the prime of your life, is very fucking hard mentally and physically. I am lucky in the fact I was in my 40s before my autoimmune conditions kicked off, and I had lived life so far to the full, my daughter was sadly just 15 (they are genetic in our case btw). The food situation can also be made hard, due to the fact that a lot of the medications we have to take can cause nausea, so eating at all goes out of the window quite often, and we always say it’s better to have something than nothing.
Do you also know what makes having cfs harder (not for me, because I don’t give a fuck anymore) but it bothers my daughter immensely, is the judgy disbelieving attitudes shown by many people when discussing these conditions (as proven by this thread), she feels like a worthless piece of shit most of the time (her words) because she is unfortunate to have an illness that people don’t (or don’t want to) understand.
Just be aware, these conditions can, and do happen to anyone, at anytime.

I think you’re projecting here.