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?

Just like I didn't ask for you approval on posting and you did it anyway. I'll keep posting what I like.

Biting my lip here....

What are you going to do with the info OP gives you? Why do you need it?
This is a thread for people worried about to proposed changes to PIP.

That's a truly awful situation. She may not directly be caring for you but that's a lot on her, especially with SEN.
Considering she may have and increased need for educational support and input, does she have the capacity to adequately provide herself with good food? I saw you say you couldn't order the healthy food. Is she able to source this?

Just to let you know Lloyds online pharmacy delivers your meds to you through the post. You order the repeat meds from your phone, your GP approves, then Lloyds online delivers to your home. It would save you having to go out on a bad day and they send you a reminder of when to order so it's harder to forget to order on time.

She only eats a very limited range of foods so getting food for her is fairly easy as it’s the same every week. She has had to learn how to cook for herself, her diet isn’t brilliant but she’s got all food groups covered. And she gets a meal at school every day.

Thank you, I have been meaning to organise this for a long time, it would be one less thing to manage.

The eat better comments infuriate me. ME isn't just tiredness that you can push through! And no amount of healthy food will fix it

I don't think anyone believes that healthy food will 'fix' the ops disabilities. But living off coke, pot noodle and pizza would make even the healthiest person feel like shit, with zero energy. If you're dealing with disabilities it's even more important to at least give your body some decent nutrition.

You don't have to be whipping up gourmet fresh cooked meals x 3 a day. But you can still eat low-effort meals that have at least some nutrition.

Pots of add-water porridge, fruit, ready cut carrot sticks and cherry tomatoes that you just grab, yoghurts, protein bars, steamed ready meals - all still pretty much zero effort but a vast improvement.

do you have a slow cooker? That might be useful for cooking. I do a lot in mine and then portion it and freeze it when I’m having a good day
Basically homemade ready meals. I add lots of veg to the recipe but then also a bag of steam frozen veg on the side
make use of the freezer, loads of microwave food in the frozen section that’s v v easy to do

I wrote to my (Labour) MP about this last week and requested a meeting. I got an email back today saying that as he’s been inundated with emails the cuts so he’s taken the decision not to have any meetings about this, and that for now he can only see people who need advice on ‘personal problems’.

I wrote back to request an appointment regarding a personal problem, that I’m worried about where I’m going to live when I can no longer pay my housing costs due to proposed disability cuts, and whether he could advise me on how to find an employer who will pay me a full time salary for the limited number of hours I am able to do.

I’m looking forward to a response. It’s sickening that he not only approves of the cuts but decides to close his clinic to people in distress over them. It’s the Labour equivalent of hiding in the f*king fridge, except it’s worse than that. I’m so glad I defaced my ballot.

Are you sure you’re safe to drive, OP?

These people writing about how easily it is to eat healthily are aware that disabled people are on limited budgets financially and energy wise for preparing food?

It's surprising that so many people can understand that disabled people need to eat well in order to manage their condition whilst simultaneously wanting to make that as difficult as humanly possible for them.

I don’t have a slow cooker but I do sometimes make extra and freeze it on the rare occasions I cook something. A bit pushed for freezer space at the moment, it’s like Jenga in there, I need to sort it out but it’s just one of many jobs that never seem to get done due to energy levels.

That is shocking. I would be very interested to hear the response that you finally get. If losing your income isn’t a personal problem, I don’t know what is.

Sometimes no, but I have to get DD to school. There are no other transport options (her school is 17 miles away). Hopefully she will have an EHCP in place soon (she is being assessed) and I can get transport for her, although I know that will be a battle in itself.

Agree you need to consider your diet, it's probably causing your symptoms. What you've described is high sugar, highly processed and next to no minerals and vitamins and low amount of calories. If that's your 'normal' you'll have multiple deficiencies that will definitely cause your symptoms.

I had a blood test recently and it was fine. I know exactly what caused my symptoms, and it wasn’t my diet. Believe it or not, before I got ill I did have the energy to cook proper food regularly.

OP, so you’re admitting that you’re driving while not safe to do so, but you have no choice because your daughter’s school is 17 miles away?

Well in the nicest possible way I think you need to give up driving. What if you injure or kill someone? I don’t understand how you can defend driving if you’re having to make stops to rest on a 17 mile journey because you can’t go on. That’s just crazy.

I too sympathise with your condition which sounds completely debilitating but I would feel absolutely horrific if my diet consisted of a can of coke, pizza and a pot noodle. Is it not possible to at least eat some fresh fruit and vegetables and some simple protein such as chicken or red meat?

You can’t push through if you don’t have the energy to stand up. It’s not the same as being exhausted and pushing through. The body isn’t making the energy to push through. Try that and you’d end up on the floor, unable to move. I know it sounds hard to believe if you don’t or haven’t experienced this. I even find it hard to believe when I’m in a better period and I am a sufferer.

It’s not always, no
I have different health conditions plus meds that cause fatigue. On a bad day I finish work and don’t cook at all, just go to bed. On a good work day I sleep for a few hours then get up and eat
I am lucky because I can manage to batch cook at weekends and freeze stuff but sometimes even the thought of eating or thinking about what to eat is just too much
It’s not like a tired type feeling I get, it’s “need to sleep and need to sleep NOW”

Op may be too ill to actually be able to make an order. I was for years. Dh did the supermarket shop. I now shop online. But I have a bit more energy these days.

Don't talk nonsense. OP has described very clearly not functioning well enough. You cannot grow resilience from a chronic illness. Before I was sick, I used to put in a 12 hour shift, go to the gym, and then I'd go a night out after that. If I was tired, I could push through it.

If I tried that these days, I'd put myself in the hospital. Resilience!! That's actually one of the stupidest pieces of advice I've ever read on here.

Why are you telling someone with a chronic illness to take vitamins and build resilience?