Christmas is most definitely on hold for now.
These Personal Independent Payment (PIP) forms are the ever present Grinch, creeping around my house sucking the very life out of everything that is positive and festive.
However, you guys are angels in disguise – thanks to all your incredible advice, I have now come up with a plan:
I ‘borrowed’ a pad of A3 paper from The Boss and I’ve got one sheet per question. First, I wrote down every MS symptom I experience, relating to each question, then went back over it and jotted down every single example of difficulty I could think of, relating to each symptom, for each question. It’s mind-bendingly complex and it’s taken me hours and hours. Whole days, interspersed with sleep and despair.
Finally (and I haven’t managed it yet), I will take each question in turn and write out a full answer using all my bullet points. After that, I will find a kindly peep (hello, Boss!) who will transfer my scribbled, unintelligible answers on to the form.
I met up with a friend last week who simplified the whole process by saying, ‘imagine a friend, who’s the same age as you. What can she do that you can’t?’ Well, that floored me. As I left, he also said, ‘no one should go through this process alone’ and it was all I could do not to dissolve into tears there and then.
He pointed out just how important it is that – especially as MS can fluctuate for some of us – the words from the DWP to keep in mind are that you will be assessed on what you can do;
- to an acceptable standard
- in a reasonable time period
So as your symptoms fluctuate, so does the time/pain/stress it takes you to complete certain daily tasks. Perhaps one day you just about get by with a lot of give and take and the next day you’re on the sofa. Like me.
You’ll find you repeat yourself over and over in each question and that’s ok. Your MS has given you a set of symptoms and they give you a set of problems and very often these are the same symptoms and the same problems.
What these forms don’t prepare you for is the absolute horror of trawling through the years, realising how much you have ‘adapted’ to MS and incorporated it into your life. Because you have to. When I think about it – and the friend I can compare myself to – it’s just not normal to fall asleep in work, be too tired to cook six days out of seven, to not leave the house unless I’m with someone.
I am living a twilight existence and thanks to the PIP forms, this has been exposed in all it’s grotesque glory.
The Grinch has stolen Christmas and replaced it with Hallowe’en.