To think about claiming PIP in these circumstances?

[ATenFromShirley]

I’ve NCd for this. I’m looking for some honest thoughts and opinions that I probably won’t get in real life.

I’m 34 and have MS. I tend to look ok (not to myself, but as in, you probably wouldn’t guess to look at me apart from on a very bad day). Lots of my symptoms are invisible: balance, muscle spasms, numbness, dizziness, and the worst of them all, fatigue.

I live with my parents, and I work full time. My parents do SO much for me, they do the food shop and all of the housework. I do pay my way (a third of everything, and a bit extra). I go to work, exercise twice a week and then crash at the weekends. I often won’t leave the sofa because I’m so exhausted. If I try to see friends etc, I’m done in for the next working week too. I truly can’t explain what the fatigue feels like- I’m so bone tired and brain foggy I’m tearful at the thought of another day ahead, even after nine hours sleep.

I desperately want to buy a house and have some independence, but I really can’t envisage being able to work full time and then do all of the life stuff that my parents currently are basically doing for me. I’ve realised I probably will never be able to have children (a whole other heartbreak in itself).

The thought of my life being as it is forever terrifies me. I feel like if I could work 3 days a week, I could still have 2 days for rest and be able to manage things like cooking and housework. But to do this financially, I’d have to look at PIP.

I think part of what makes this difficult is that I probably don't fit the stereotypical picture of someone who needs disability benefits. I work full time, I exercise twice a week, I look relatively well most of the time. I can do things, and I recognise that there are people with MS who are much more physically affected than I am.
But I also spend most of my non-working time recovering from the basics, and I rely heavily on my parents to do the things that make everyday life function.

I feel a bit stuck between two things. I don't feel disabled enough to justify asking for support, but I also know that I just can’t continue living like this indefinitely. I don't want to spend the next 30 years working full time, coming home exhausted and spending my weekends recovering. I want a home, independence, relationships, experiences and a life that isn't entirely dictated by how much energy I have left.

I suppose I'm asking whether reducing my working hours and potentially claiming PIP is a reasonable way of approaching this, or whether I'm being unrealistic and actually this is just what my life is going to look like. I also recognise that lots of people are exhausted from full time work!

I'd really appreciate honest opinions- I genuinely want to hear how other people see this, even if it's not necessarily what I want to hear. Thank you.

Reducing work hours and using PIP to bridge that gap is an entirely reasonable thing to do.

Yes you should

If you can cook a simple meal, wash yourself, get dressed, manage your finances, walk and can do planned journeys by yourself then you won’t get PIP. If you struggle with these then it’s worth applying.

The MS society website has a good section and guide on this.

I have MS and more affected by it than you, I use walking aids and cannot walk very far, I have an adapted bathroom etc, I can no longer drive, I only get the lowest level PIP.

https://www.mssociety.org.uk/living-with-ms/financial-help/brief-guide-to-benefits/personal-independence-payment

And that’s what’s making the PIP bill totally unaffordable and that’s why the Labour government are currently carrying out a review as to how to cut PIP. And they’re doing that because if they don’t, the debt interest rates will soar.

I feel for OP. Life sounds tough. But I don’t think she should be funded to work part time.

Well its not its for anything that benefits claimants life
I dont know wether the Op would score enough point for an award that would be up to the assessor
But your opnion on what it should be spent on is irelevant.

I think that PIP is specifically for adaptations to enable the person to work. Cheaper than paying benefits.

How could you stop a person buying "beer and fags" with their PIP money?

Of course you can claim PIP for that. I work full time in a clinical sitting role in the NHS and have debilitating osteoarthritis, have had a number of joint replacements and I get it.
I live on my own and have nobody to help out so I have to pay for help to come in. Cleaner etc.

The issue is fatigue. Fatigue seriously limit your ability to cope with normal activities. Even if you can do them, it takes a serious toll on physical and mental health.

Fatigue is not recognised as a disability as such for the purpose of PIP, unless you can evidence that it is so bad, you really can't get up and cook, wash etc...

The problem is how to you qualify and quantify fatigue? Some people naturally push themselves to the max despite horrendous fatigue, others give up at the slightest sense of fatigue. Should the latter be awarded or the former. Also, how do you qualify fatigue beyond how people describe it?

I think the majority of people who claim PIP when the ultimate disability is fatigue twist the system to tick the right boxes.

I also suffer from chronic fatigue due to a condition that can't be easily treated and the only treatment main side effect is....fatigue. But like you, I like in the eyes of the public a normal life. What they don't see is the daily battle to find the energy to do standard activities, nor the crashes when at home.

It is frustrating that people with less disabling conditions meet the criteria, but that's how it is.

You couldnt.

I think you should apply. PIP is intended to bridge the gap ( a bit) between your capability with the your disability and a 'normal' person's capability.

Right now, you can work full time and maintain an exercise schedule your doctor says is important - and that's all. You have no social life, and crucially, you aren't running your own life and completing household tasks.

You might - you haven't tried so you you don't know - be able to work and run a house, but that would completely wipe out any remaining capacity. More likely, you'd start slipping on the household tasks to cope, definitely have to give up your exercising, and your health, hygiene and diet would suffer in response.

Answering the questions, answer maintaining your current routine. Can you do things - well, in isolation, yes, but in reality, no, because you're exhausted and in pain.

You'll have to word questions very carefully, get advice and be careful in assessment, but I still think you should apply.

Well you can apply. To get PIP while being capable or working full time is definitely possible. But the thing is it asks how capable you are of day to day things that are less complex than work. If you say you can't do those things it's almost like it would be very difficult to work, iykwim. But if you do struggle with day to day tasks it's worth a try.

The obvious circumstance where this can be true is someone who uses a wheelchair and this gets high rate mobility but goes to a wheelchair accessible gym (yes they do exist) and works full time.

pip comes in two sections, mobility and care.

I agree with @Passaggressfedup and @ginnybag

Unfortunately you need to be careful with the application form because the reality it’s not about who needs it more gets it. In practice it’s about answering it in the “right” way.

There are people better off than you health wise Op who are successfully claiming it. Many of whom were initially scored on zero points then had to appeal.

It is false to say OP won’t get it because she works full time. Your job can be an office job and therefore doesn’t necessarily mean you have the ability to cook and shower and wash your hair whenever you need to. Being able to work doesn’t mean you don’t struggle with daily living activities.

OP the compromises you speak are of course not normal.

If basic tasks leave you so exhausted and you can’t do anything else that is not the norm and therefore you need to highlight this in your applications.

At the moment it might be worth waiting to see what exactly the Timms report recommends as it's an incredibly stressful and intrusive process.

I doubt any changes implemented on the basis of recommendation from the Timms report will be brought in immediately so op could be delaying for quite some time. I think if anything they will be making PIP significantly harder to claim overall.

I agree. Best not to wait OP. They will drag out reform. But here is a summary of what the interim report says on the MS society website .

www.mssociety.org.uk/research/news/timms-review-interim-report-pip-no-longer-fit-purpose

Unfortunately you need to be careful with the application form because the reality it’s not about who needs it more gets it. In practice it’s about answering it in the “right” way.

This ^^

This is why you would need help from someone who has done it before. The planning a journey descriptor is a classic for me. Who could not plan a journey these days now that we have satnavs ??? Then they point out that crossing the road needs planning when you need to do it safely in the dark and you are in a wheelchair.

If basic tasks leave you so exhausted and you can’t do anything else that is not the norm and therefore you need to highlight this in your applications
Basic tasks leave the OP exhausted because she is prioritising other tasks. She is able to cook and wash, her condition just makes her exhausted.

It is quite common to carry on with life exhausted. People with very demanding DT jobs, people with babies who don't sleep, women going through the menopause, people with high care duties, etc...

If PIP was awarded to everyone who gets through life exhausted, at least 50% of society would be entitled to it.

And ultimately, if OP reduces her work hours, only go to the gym once a week, she won't be so fatigued and will be able to cook and wash...and therefore not newt the criteria any longer. You have to declare when you are improving.

The bottom line is there is no social funds for exhausted people who wish they had more energy to do all they want to in life.

I have MS and have applied 2x and been rejected 2x. I was told to lie next time by my physio, but I will not do that. The system is fucked when women with devastating neurological diseases are rejected and people committing fraud are getting millions.

Apply, op. Sounds very much to me that you'd be very deserving.

Good luck.