Level-Up: Part 58

This isn’t a very festive post, but I wanted to share it before I forgot the details for anyone else applying for PIP who wanted to hear about the renewal experience. It’s not terribly sad, so don’t worry. It’s just not full of jingle bells. Here’s something festive to make up for it.

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Last Wednesday I was called to my second Personal Independence Payment physical assessment. I hadn’t expected to have to go so soon after submitting the renewal paperwork. I’d actually been told I might not have to go at all, but I didn’t expect that to be the case. Still, to be called a few days after my paperwork deadline was a slight shock. Last time, several weeks after the application, I received a letter with some login details that allowed me to go online and choose a date/time that suited me. It seems they don’t do this anymore. I can only think that letting people take their time over making their own appointments must have left some empty slots, and as the whole process has come in for significant criticism over falling behind on applications, I’m guessing now they present you with whichever spaces they want to fill. It’s less convenient, but anything that cuts the waiting time has got to be better in the long run. I would have preferred to have more time to prepare myself, but at least I could get it over with before Christmas.

I was incredibly nervous and feeling pretty exhausted last week. There was a lot going on and I felt kind of beaten down by it, physically and emotionally. And I wasn’t just nervous about being interrogated, I was also worried about how I was going to feel afterwards. The last time I majorly crashed after leaving the appointment. At the time I was only a few months out of my first round of counselling and trying everything in my power to stay positive. These assessments essentially ask you not to look on the bright side and the first one really messed with my head. I felt like it was asking me to ditch everything I was trying to change about my outlook.

In some ways, not feeling your best on assessment day is good. The purpose of the exercise is to give the assessor an indication of how your illness or disability manifests itself from one day to the next, including the impact external factors can have on you. But still, the questioning is intense. You want to go in there feeling like you have the stamina to keep up and get all your points across. I certainly wasn’t feeling very robust. Beforehand I tried to avoid the whole ‘I wish I didn’t have to do this’ thing. It would only upset me and I knew that it was just something I had to do, however little I wanted to.

I took a taxi to the clinic and found a comfortable spot in the waiting room. It was insanely warm in there, which didn’t help, but thankfully the room I was in for the assessment was much cooler. I had asked on the application form for an adjustable chair so that I could feel more comfortable for the hour or so I’d be in there. That hadn’t been provided. I’m always very confident in asking for the things I need to be provided, but for some strange reason this time I felt too nervous to ask. I just used the chair provided, holding on to the arms and the desk in front of me.

The man who interviewed me was very friendly and kind. I knew from last time that it’s not in their interest to be interrogatory, but you still worry that it’ll happen once you’re in there. The questioning was a little more haphazard this time. He jumped around to different topics and often got stuck on a particular line of questioning. He spent a lot of time finding out how I use my hands to steady myself when I’m having a pee or what I do when I’m dizzy getting out of the bath, for example, but breezed quickly through other stuff that I wanted to spend more time explaining. Maybe that was deliberate, maybe not. But the last time my assessor was being supervised by her manager, so maybe she was a tad more ‘by the book’.

I can’t remember if I’ve said this before or not, but it’s a lot like going through passport control. You know you’re genuine and have nothing to hide, but when everything you say is written down and the questions keep coming, you wonder if you’re saying the right or the wrong things. You wonder how they’re interpreting what you’re saying. You’re not sure if it’s okay to make a joke to release the tension or if they’ll take it the wrong way. You hope whatever you’re saying is enough. The physical tests were more rigorous this time too. Last time I’d only had to do a handful of mobility exercises. This time the assessment involved a short eye test, both with a board on the wall and reading aloud, and more mobility tests than a year ago. There were lots of ‘touch your toes’  and ‘stand on one leg’ things. I couldn’t do the latter without reaching for the desk, and the toe touching wasn’t something I could keep up for more than a couple of seconds before getting too dizzy.

Once it was all over I was tired and a bit spaced out, but I didn’t have that crashy, sobbing feeling that I had from the first assessment. That was the biggest relief. It showed me how far I’d come in terms of accepting what’s happened to me. It’s still not easy and I still have to talk myself out of feeling sorry for myself, but to have spent an hour talking about my worst days and not need to collapse in a crying heap afterwards was one of my proudest moments. One of my biggest challenges has been allowing myself to be sad for as long as I need to without feeling like I’d stay there and not come back up again. I found a quiet corner and sat with a drink for a while to breathe and calm my head before heading home in another taxi.

I managed to stave off any collapse for a few more days, but by Sunday the week had really taken its toll. I had no energy to do anything or to even engage my brain. I had so much I wanted to do and I felt disappointed that I’d become that wiped out, but I also knew that my brain felt like bubblegum and it needed a break. I made a list of all the reasons I had to be tired and cut myself some slack. I spent the large majority of the day on the sofa with my hood up, watching lord knows how many YouTube videos. I wept a bit, I zoned out, and I felt better for letting myself have that day of nothingness. I wasn’t even sad, I had just reached a point where I’d absorbed enough. And even though it wasn’t the most fun day, I’m genuinely pleased that I realised I needed it and didn’t allow myself to be too angry about it. Along with being able to make it through the assessment without crashing, it was the second reason I had to feel proud of myself that week.

Apparently I’ll hear from the DWP some time before mid-February on whether they’re continuing, raising, reducing or completely removing my Personal Independence Payment. I know my stomach will flip when the letter arrives, because you can never be sure whether you’ve done enough to convince them of what your disabled life is like. But whatever happens, I’ll roll with it and take them on further if needed.

If anyone would like to speak with me privately about their own PIP application, especially if your application relates to a vestibular disorder, please feel free to get in touch via the email in the Contact section or via Twitter. I’m happy to share my experiences to assist others, because I know how overwhelming the whole process can be.

I wish you all a very merry Christmas and happy new year. Thank you for your support this year and beyond. I appreciate you reading these posts more than it’s possible to explain. And if you’re about to tackle Christmas with your own chronic illness, I wish you all the best. Do as much as you can manage, then head home with a big tin of Quality Street.

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