After taking an afternoon to read the instructional notes and the forty paged PIP2 form, I ruminated, cogitated, considered, made notes, and sat at my desk last Saturday morning and began the dreaded task.
Okay so the first couple of pages were not so daunting, listing the names, address and last appointment dates of medical professionals I have contact with. They only have boxes for three, I have six, hmm, how to prioritise, those I see the most (Physio, Occ Health) or the more important sounding (Consultant, GP) and make a note to add the others in the ‘additional information’ section.
Now to the gritty part, how my disability affects what I do in general areas of life, how it’s gotten around, what aids are used, what extra is needed. The tick boxes are ticked, then the explanation paragraph, how to be concise and exact to cover all scenarios within the half dozen lines in the box provided. Completing these things can be mentally demoralising because you have to admit, in writing, all the things I cannot achieve and the impact it has every moment of everyday, the exact opposite I am trying to think about every moment of everyday. Also I am so used to doing things the way I do, it is easy to forget it is not the general natural way that ‘ables’ do it, my usual is so normal I don’t think of it as different or awkward, but it needs adding to the form. Always keeping in mind the reader knows less than nothing.
I scribble draft one in pencil on my note pad, edit it, and check the wording for its accuracy and spelling before committing it to the form in ink. As my fingers, wrists and arms are affected by my FSHD I struggle holding the pen/pencil and writing clean and clearly for any length of time can cause strain and cramp, so after three questions that’s enough. Time to put it away and come back to it another day. I returned to it Sunday morning, reread what I had written, add something I had forgotten and start again with the next question, and again on Tuesday, making other notes of what to add in the ‘additional information’ page.
So far I have a detailed letter of support from the Muscular Dystrophy Regional Care Advisor and a lengthy report from the Occupational Therapist, I am waiting to receive a second lengthy report with risk assessment from my Social Worker.
Across the weekend I will finish the form, a friend (former work colleague) is visiting Saturday and she’ll read it through to see if it makes sense. Then Sunday I’ll scan the pages into my computer and copy the reports I have, printing my details on the back of every page incase they get separated in the office. While my BFF is here we will wander to the post office and despite it being a free post return, get a certificate of postage, pay extra for it to be tracked and signed for. I’m wondering what it costs to hire a guy with a briefcase chained to his waist because I am not going to be happy if it goes missing before being properly processed.
The saga continues…..