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.

Hi OP,

This is very timely as I have MS too and have found out I have been awarded PIP (high rate mobility, lower rate care) today.

i have had MS for 18 years now and this was my first claim, basically I had chemo treatment that finished around 15 years ago and despite a few little episodes of dizziness etc I kind of forgot I had MS.

Then at the end of April, I had a pretty bad relapse that I have not recovered from. I am 20 years older than you.

My application contained the following as evidence:

Letters from 2 different consultants stating my EDSS score had gone from 0 from a routine appointment in February to 6.5 now.

Correspondence from the nhs wheelchair team confirming they had ordered a manual wheelchair for me. (I bought my own electric one as well so I can go to work part time)

Proof that occupational health at my local council fitted extra rails and a stairlift around my home.

there may be other things as well that I’m forgetting, but you get the gist. From what you are saying I don’t think you would get pip, maybe something on the daily living perhaps depending on exactly what your parents need to do for you.

Ironically, in March I was in the best shape of my life. I’d lost almost 6 stone on WLI and was walking 3-5 miles a day. I’d much rather have that back than PIP! I’ve kept the weight off and so glad I lost it cos being obese as I was would be a bloody nightmare in my current state.

All the best to everyone with MS here, you can DM me if you like.

I work full time and claim PIP, like you I look to other people fine on the outside and can function for like two days max at the weekend doing what I like to do, but then I spend the rest of the week recovering and working from home. I order shopping on uber app most of the time unless I'm popping in from another trip out, and even then it depends on how much I need. PIP is there for your support and extra things that will add up to what a normal person can do. I wouldn't be surprised if they try to turn you down first time though, go back in with a reconsideration.

OP. I have helped two people with PIP and it can be a long process. If I were you I’d go through the more useful posts that give you info on how to do it or what organisations to turn to for advice, then focus on writing the form with or without their assistance.

Don’t bother trying to argue with people on here who are quick to suggest you or others don’t need or deserve it. It’s a waste of your energy that could be channeled into writing the form and collecting evidence.

I have rather similar health issues and frequently fall foul of the 'if you can do x you can do y' fallacy. If you have trouble with the PIP application, you can get help from Citizens Advice. Good luck.

@Grimda

you really have no idea what PIP is for and clearly a narrow view of disability.

Not everyone with a disability or severe medical condition uses a wheelchair.
I receive the full PIP. I do not use a wheelchair or any other electrical equipment