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?

And somehow she’s not tired all day because she stays up to 2am scrolling on the internet either?

I’m sorry that people have used your post to judge you. The diet comments and others show that many people can’t accept or understand things which are outside of their personal life experience.

It's economically stupid to take money away from people who will spend it.

Most disabled people won't sit like dragons on their cash or stash it in the Caymans 😂, but will spend it locally on food, heating, transport, personal care, all stuff that keeps the economy going.

I think you were under awarded. I know that doesn’t at all fix the stress and anxiety, but my impression is that you should have been given much more than two points based on your description of your functional ability at the moment in a good period. I hope that your next assessment process will give you more points so that you won’t lose the benefits. (Again, not trying to understate the stress at all, just sharing my impression of what I think you should be awarded as a claimant myself.)

Sadly, i echo what others have said. Lifestyle plays a huge part in chronic illness. It is just as easy to eat a jacket potato and a banana as it is to eat a pot noodle and pizza.

Change your routines, eat a decent breakfast like fruit and yoghurt. Go for a walk. Work then have a simple lunch like a tuna sandwich. Work, have a simple tea, go to bed at 9pm. Get off your tech at 8pm, Google sleep hygiene to aid good sleep.

Many of us have illnesses but honestly self care and lifestyle play a huge part in improving quality of life. Good luck.

PIP changes sadly have had to happen due to the massive soar in claimants.

If it’s anything like the majority of sufferers of these kinds of conditions, it will be absolutely shite, but not due to her own fault. These conditions stop the brain/body from going into the proper restorative deep sleep phase, so basically we never get properly rested. We could sleep 16 hours a day, and still feel unrested on waking. This in turn obviously puts a major stress on the whole functions of our body, hence the absolute crushing fatigue, and body wide inflammation.

A lot of people with fatiguing conditions have sleep dysfunction and sleep/wake at abnormal times. There have been loads of studies on this. It’s not like a healthy teenager staying up late and being tired for school.

To add, there is no other country in Europe who mirrors our sickness benefit levels - it just doesn't make sense.

Actually we spend around the EU average on disability related benefits although it's hard to directly compare because of the different ways it's implemented in various countries - some countries provide services, others provide cash payments. However, the UK is something of an outlier within comparable countries in that we have poor public services, low pay, high costs (some of the most expensive fuel costs in the world), inaccessible housing, a poorly functioning health service and so on. In order to tackle poor health we first need to address its root cause, societal inequality. It's become increasingly clear the new government is not intending to do that.

It absolutely is not “just as easy”. You don’t understand what it’s like to live with severe fatigue. Many people are not well enough to do any food prep such as making a jacket potato, and many are not able to simply go for a walk.

We all understand. However it is a fact that a jacket potato will keep her fuller longer than a pot noodle full of additives.

We all have to take responsibility for our health and do whatever we can to optimise it. Hard when feeling tired yes but the more positive things we do, the better the outcome.

Well yeah, staying up until 2 am and sleeping all day is dysfunctional but it’s not all out of OP’s control.
Sleeping and waking at abnormal times is a choice and all it does it continue the pattern of sleeping and waking at abnormal times.
There is absolutely nothing about OP’s day that is about trying to stay on a sleep schedule more in line with the working world and having a child still living at home.

'Many people are not well enough to do any food prep such as making a jacket potato,'

You don't make them though, you pop them in a microwave requiring the same effort as boiling a kettle to do a pot noodle.

There is so much evidence regarding diet and fatigue it really would be a way to improve the situation.

Jollyhockeystickss · Today 07:44

Away you go with your utter drivel. What an embarrassing comment.

If you can make a pot noodle you can stick a potato in the microwave.
If you can put a frozen pizza in the oven you can put a packet of veg for steaming in the microwave and serve over microwave rice.

There are lots of choices here.

Pretending there aren’t choices isn’t helpful.

Losing your job when you don't have a disability is an entirely different situation to losing your income when you have a disability that limits your availability to work, which also limits your attractiveness to employers.

A jacket potato can be microwaved with minimal effort. There are lots of healthier options which are convenient that op could be eating. Her diet is not helpful for her

PIP has to change due to those abusing the system which will sadly impact those in genuine need. People don't realise their lies impact the lives of others. Id be for voucher schemes instead of money I know several people on pop stashing thousands in cash so it doesn't interfere with universal credit cut off points. I also know many claiming for pain and depression when they walk a mile daily go to the gym daily and are more fit than me on 4 holidays a year always outside in the sun gardening etc and to make it better they sell their pain killers to addicts. So yes dont blame the government blame the liars they are ruining it for those who are in genuine need

In fairness, while there have been some judgey comments, there have been lots of comments from people with similar or related conditions who are also urging OP to make some simple changes.

Food, sleep, and other elements of self care can make a big difference to how a person feels. Knocking back a can of coke at 8.30am because you feel tired is never the solution, and it's a really easy habit to slip into (speaking from personal experience here!)

A chronic health condition won't magically vanish with a few more vegetables and less junk food, but the symptoms may be more manageable, and life a bit less miserable.

It's hard to hear when you're struggling to get through each day, but we all have some responsibility for what we do to manage our health conditions, and whether we're doing anything to sabotage ourselves, albeit unconsciously.

All of this is separate and unrelated to the fact that the changes the government are suggesting are just awful.

It takes the same amount of energy to add boiling water to a pot of porridge oats as it does a pot noodle- adding a banana even makes it far more nutritious than a pot noodle. Plenty of freezer options have a better macro profile than a frozen pizza and again take the same amount of energy to prepare- you can also get frozen baked potatoes which take 5 mins in the microwave. Plenty of 'ready to go' foods available.

Now more than ever it's important we look out for ourselves and do what we can for our health.

If all suggestions to eat healthier food and make any efforts to improve her situation are immediately discounted, how will things ever change for the OP?

'PIP has to change due to those abusing the system which will sadly impact those in genuine need. '

This.

I have a relative that no amount of change in diet would change their medical problem but sadly they will be reviewed and reassesser like everyone else when they have a permanent, significant problem.

Sadly someone has to want to help themselves to make any real changes. Lifestyle changes aren't a magic wand, but they absolutely do make a difference.

I think all pensioners should revert to AA once they get their pension. This will be easy to implement like pulling the pension fuel payment.

This is what the majority of us reading this thread are actually thinking.

I think PIP needs to be completely overhauled and a different approach to disability payments is needed. The present system is unsustainable.