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?

Who is feeding your daughter? Is she being fed more nutritious food.

Is this right because how i understood it is when your reassessed if you lose pip daily living you lose lcwra

This is exactly! Your diet seems so awful and would make everyone feel worse. Heslthy meals can be really quick and easy.

Wouldn't a can of soup (or beans on toast) be better than a pot noodle?

I mean it's still processed, but at least some semblance of vegetables and meat in a Big Soup, for example. Couple of minutes in a microwave instead of boiling the kettle.

This. Instead of eating a shit pot noodle, buy in some basic supermarket ready meals that might contain some actual vegetables. They are no harder to prepare than a pot noodle which is complete crap and is not going to help your condition?!
You also don't mention what time you went to bed. Try going to bed earlier to get more sleep overnight and maybe stand a chance of achieving something in the morning?

I was diagnosed with CFS by a GP and rheumatologist . I now eat every couple of hours, low carb, high protein, 7 servings of fruit and vege a day. I can work 30 hours a week but if I ate pizza, coke and pot noodles I too would be bedridden.

Everyone is right about the diet being a contributing factor in the tiredness. I would put money on you being vitamin d deficient- and unless you’ve specifically asked for that test they don’t do them on a full blood count. Also they won’t flag results that are the low end of a ‘normal’ range that are likely causing issues.

Also, perimenopause- what age are you? Anywhere from 35 onwards and you can start experiencing brain fog, insomnia, extreme exhaustion, body aches etc due to fluctuations in hormone levels.

People need to focus less on op specific situation and focus more on how disabled people are supposed to live and pay bills with no money as this is the actual problem that nobody seems to be able to answer. I wrote to my mp asking this and I got a real crappy generic response that still hasn't answered the question.

Not actually 100% sure now tbh!

I was quoting a disability rights website that was saying explicitly that if you qualify for LCWRA before April 2026 then you won't go onto the new structure (and is still saying the same thing). This would be nice if it's true, but other sites are suggesting this isn't correct....

What is looking more accurate is that PIP changes are being re-assessed under the new rules from November 2026. So for existing claimants, that means whenever you are due your first review after that date.

But your Universal Credit claim and LCWRA element won't be affected until 2029 as the WCA isn't being scrapped until then.

Therefore, even if your PIP is stopped in November 2026, your LCWRA under UC shouldn't be affected until 2029 at the earliest, which is when existing claimants are being migrated. Apparently.

Screenshots attached of the apparent timeline.

I have the same as you, and also RA and I manage to work by doing one day on and one day off. With a half day and it works okay with a rest day. You probably could manage to increase your hours to 25/30 if you were able to structure your day well, and work flexibly which is key.

It is awful. But I would feel even worse if I didn’t try and keep a life going.

Please ask to see a nutritional therapist too, they can help you plan super quick meals that are high in nutrition, but are very fast to prepare. Salads, stir fries, nuts and fruit take almost no time to prepare and will enhance your energy levels.

Cold showers can work well, yes you will scream a little at first, but it resets and the blast can really work to reenergise the body. Only do this on low pain days though. High pain days I try to have a hot bath and do the opposite.

Retraining and doing a job that works around your condition IS possible but will need to be researched carefully. Mayve expanding what you are doing now?

Op, please try not to worry. You might struggle even more if your stress levels are high.
Have you tried electrolyte drinks? I find they sometimes help too. Best of luck 🙏🏼

I thought that too

Also using up precious energy to drive your dd to school isn’t a good use of your time if she can walk, assuming she can get the bus too. I have to be super strict as to what I take on op. Anything that isn’t essential is not considered, I delegate as much as possible too.

Save your reserves for work, to bring security. Don’t prioritise other people. Ensure you are in bed early every night and your sleep routine is super clean.

But this is again is what I wrote to the mp about as I do work part time and I think this is an option for some disabled people. But I wouldn't be able to pay my bills and the extra costs of being disabled from this without pip and lcwra. My consultants are spread up and down the country a lot of my pip goes on the cost of taxis for these as I can't take public transport and then obviously aids and carer. Then my lcrwa is to top up my wages to pay bills. So what am I supposed to do if I lose this. To be able to afford everything I would need to work a 60 hr week. In the past when iv tried to work more hours I always ended up hospitalised for weeks at a time which meant more time of work and losing more money as don't get paid first 3 days.

I was diagnosed with ME 30 years ago. Please try and look into diet and foods, because it truly makes a difference. I know it’s hard when you feel like death, but eating pot noodles is going to make you more unwell. I cannot touch them or they make me flare up within hours. I think it’s the additives and rubbish in them.
I credit my survival and return to normal life down to a combination of diet and paced exercise.

OP how is your sleep at night as this thread went on very late, I would be dead on my feet if I was only getting a few hours a night.

Another of you. This is not the cause of her illness.

The number of people who seem to think OP was looking for nutritional advice is unreal.

Your diet is shit. You will feel a lot better with a high protein diet and you don’t have to cook from scratch to achieve this. Start with bagged salad and pre-prepared chicken slices, avocado, eggs etc and see how you feel.

I see my consultants mostly on zoom, and my local GP does my bloods etc. Why are you seeing consultants around the country, and why would they expect you to travel in your condition?

I am sorry OP for the stress this is causing you. I do have hopes that they do not punish disabled people, so the changes may not be as hard as it sounds. We are going through PIP and UC for a family member for first time now.

It's the only bit that's relatively easy to improve and might make a difference.

Can't do sod all about the government's plans etc.

Many voted for Labour simply because they thought that Labour would protect their interests - that has now clearly been proven not to be the case.

For all their faults, the Tories called it - time and time again. It is fruitless to blame them now - this is Labour’s to own.

My DD28 has CFS, PTSD, ADHD, depression, anxiety and severe asthma.

She believes they want disabled people to die. It’s not good for her feelings of worthlessness. I have been a single parent to her fur 23 years. I worry so much about what will happen when I’m no longer here.