CHRONIC PAIN - PIP renewal when your condition is variable

[SingToTheSky]

Starting the thread before I wimp out. The dreaded form arrived today. I’ve not actually done a renewal before - stupidly when renewal came around for DLA I was so scared of it that I just didn’t bother. I waited a few years before getting PIP in 2017 and it was extended a few months due to covid.

I have fibro, CFS and PoTS diagnosed. But they all vary hugely and this is the problem. Sometimes I can barely shuffle round my house, I get stuck on the stairs. I don’t get medical input for this stuff because since the diagnoses they can do nothing anyway.

Other days I almost feel I could be normal. I still can’t do what most people can, but still a huge improvement from the housebound days. It’s like I’m two different people. And that is what makes me panic about doing these forms. Along with the fact my brain just doesn’t fucking work right now (am autistic and since the last form I was diagnosed ADHD).

I don’t know what I’m asking really, I am just in a slump now, I really don’t want to think about it, but I guess I’d like some advice or even just commiserations from others who have done these forms with these highly stigmatised, invisible, variable conditions.

PIP will award points if you need help with the activities on the majority of days.

You need to be affected for over 50% of the time to be awarded. Sounds like your good days are not that good so maybe can be included

Write out the renewal form as if you are having a bad day! If you Google help with PIP there are lots of charities and advice groups that give examples of how to answer the questions. Some might you think of things you didn't know were pertinent for example if you wear Tena Lady for urinary incontinence that is a medical aid.

Hi if you look on the citizens advice website there is loads of advice about filling in PIP and they give the description for points awarded . I agree with previous poster who said fill in as if it's your worst day .

How are you getting on with the form? Or are you not facing it yet?

Thank you all, I appreciate the tips 💐
Akire I haven’t done it yet 😣 it made me anxious for a couple of days and now I am full of cold. Which sounds ridiculous I know but it’s like my brain is not working at all 😳

Is there anyone who can help you fill it in OP? There's usually a section on the form which you can put who has helped you, if it's overwhelming and you're struggling to complete it please do consider doing that and having some support. Fill it in as your worst day.

Have a look at www.a1benefitsupport.com/?fbclid=IwAR2jHok3Oo55h8QoSL3BCcsViYzGiDfMsFL5iacSo2VWXS9EI8QM7x2GnfY

It's free and will take you through the form step by step- you have to join though fb but they will also help with any questions you have

They are a bugger to do at best of times. Anyone’s who claimed knows that. It’s like the dread and anxiety zap any last strength you have. We with you x

I was advised to include 2 diaries, one for a bad day and one for a better day. I drew up a table with all the indicators down one column, then in the second column I wrote how I managed on that day. So eg:

Preparing food | I was unable to prepare food as I was bedbound. My husband brought me all my meals in bed.

Say at the top: This day was below average. About 2 days a week are like this.

That’s a good idea I think on our average days we can over estimate how much better we are. Tonis it feels like good day but that’s doesn’t mean that you can do normal things or basic stuff no one else would think twice about.

It does give you time to think oh yes I’m using this pre- chopped, I’m getting someone to lift this in and out of oven.

I’ve just had mine as well so reading with interest. I’ve also got to do my blue badge renewal at the same time.