Sorry to go anon, but im struggling with this.

I receive PIP and have done for a few years. The thing I struggle with is when im feeling well. my M.S is a real roller coaster, I can go from feeling brilliant to crashing on the sofa and using my wheelchair/crutches in a matter of hours.But some times I might feel well for a few weeks. The thing I struggle with is, when Im feeling well, I feel like I should be trying to walk a bit further, do a bit of exercise. I spend so much time sitting which is not good for me, I think that I am trying to help myself. But I feel constantly guilty when I feel well because of my PIP. I think I need it,and meet the requirements for it most of the time, but there are times when I don’t.

The feelings of guilt are definitely holding me back from doing more or trying to do more, because im petrified that if im seen walking (believe me its more of a zombie walk than a brisk speed) then Ill get in trouble. There is a lady that has been done for being at Crufts with her dog, now Im not going to be doing anything like that but it really upsets me that I shouldn’t be able to try to build myself up with out this over riding guilt.

I am unable to work, but wonder if I would be better coming off PIP and really trying to hold down something for a few hours a week to cover the money |I would lose. We need it, my hubby cant work any more hours.I thought PIP would free me a little and help me move forward but its having the opposite effect.

Thanks for listening x

Don’t feel guilty. PIP is a necessity for most of us. Its for those times when we are at out WORST and we cannot predict those times. MS is permanent, it is progressive and incurable. Not saying that to be negative, its something I bang on about everytime I have to fill in a form and FIGHT to get the money to survive. BECAUSE THE DWP DOES NOT GET IT!!! Ok, say you come off PIP and fail to hold down the job? Or hubby loses his job? By all means keep yourself busy, do a voluntary job (great way to test out your stamina for a job actually) How about working from home? Exercise is good, keep on with something to keep active-ish!

I receive PIP, and I work 28 hours a week (I used to do 5 days but cut it down to 4). PIP is not affected by salary. I get what you’re saying about worrying about getting into trouble but MS is one of those varying conditions affecting all of us differently. If you qualify for PIP, then you qualify for it. I know there have been many reviews lately and some people have had their benefit reduced or even taken away. I visited a disability advisory service local to me which I found on the internet and they helped me review my pip and I got the higher rate. Perhaps you could search for and advisory service near you.


Thanks for your replies, I really appreciate them.

you gave me points to think about, what if Hubby did lose his Job?what if I tried to get a job and couldn’t keep it?. I forget sometimes how small my world has become and how ‘not normal’ my normal is. These news stories just put the fear of god into me. I spend all my time trying to look well and do my best, why anyone would want to fake this c### is beyond me. thank you again for listening xxx

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Its the “new normal”… and its a constant and frustrating journey of learning - and accepting - your limits. To begin with fatigue was the biggest thing for me. When in the afternoons, i was struggling to put a sentence together, my kids (teens at the time) would go = “Mom, LIE DOWN” we’ll cook the tea. And now if I don’t have that nap in the afternoon, I’m useless.

Similarly, gardening. when I fell and could not get up, when pulling a few weeds was knackering, then I had to think - OK I need help here. When walking was a struggle and a effort, I thought - I need a wheelchair, just for outside and now I can go places I NEVER could!

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I get pip and work full time (office based) manual job would be a no no and have the same feelings some times but we do not choose to have this blasted disease and at times I can be flat out with my MS - as is the nature of the beast…

MS doesn’t get better, it only fluctuates or goes into remission. If you lose your PIP that loss won’t go into remission. You’ve bought and paid for it with your taxes and it’s yours. Keep it.

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Your post really struck a chord with me. I’m currently on DLA but my PIP award has just been confirmed (although will have to submit Mandatory Reconsideration request as the award is wrong… another matter).

I think over the years I’ve ‘normalised’ what in a ‘well person’ would in no way be considered normal. It’s only when talking to my MS Nurse, and others, that they point out the difficulties I’ve come to just accept. So when looking at PIP or DLA, I start to question whether I’m a fraud sometimes and have concerns about the perception of others about my varying ability.

An example would be that on a good day I could maybe do a bit of garden weeding or walk around one or two shops at the shopping centre. I would certainly pay for it later but enjoy it at the time despite the pain. Is that wrong ? I don’t think so, because the very next day I’ll be dragging myself out of bed having had a night of pain, not much sleep, and doing virtually nothing for the next few days. Anyone who saw me gardening or at the shops will not see that impact will they, so then I worry about what impression that leaves them with.

I carried on working for far longer than I should have done, partly because of money concerns but also because I felt that if I didn’t feel like I couldn’t get up that must mean that I’m well enough to work. What I hadn’t taken into account was the impact that pushing myself was having on my mental wellbeing and ultimately my physical wellbeing. I have not regained the confidence in my ability that was lost during that time and now regret it.

Everyone’s situation varies so much that there is no right answer for all. My feeling is that perhaps we are our own worst enemies when it comes to worrying about guilt and perception of others but is this because of their ignorance of MS and the way it impacts our lives ?

I agree with other comments here. You were awarded PIP for a reason and you deserve to live your life free from guilt… I just need to listen to this advice myself sometimes too.

I hope you find a way through soon and give yourself a break xox

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