Saturday 31 March 2018

a lovely time was had by all

We left Philadelphia and HUconnexion18 on Tuesday afternoon, landed in the UK on Wednesday morning and I've been trying to make sense of my notes ever since.

Despite an almost hallucinatory level of exhaustion and displacement, we had a fantastic time. We met some amazing and inspiring people and made a number of new friends along the way, both Health Union staff and fellow patient advocate contributors.

I'm still trying to unpack all my thoughts and the lessons we learned. There will likely be a number of disparate blogposts about our three nights in Philadelphia - about the logistics of travelling with a wheelchair, about owning our own stories of chronic illness as opposed to being doomed to endlessly repeat the story of our diagnosis, and about the value of community and the validation that comes the first time somebody just gets it.

On an entirely personal level, the fact that we were able to travel so far on our own is a massively big deal.

If you had told us last summer, when I was up to my ears in relapse, that 9-10 months later we would be travelling over 3,000 miles to attend a conference, we would've laughed in your face. But now we know we can do anything we set our minds to.
my new besties - spot the British teeth!

Monday 5 March 2018

how do you think it feels

This morning I got a bumper fun pack from my friends at the DWP. This contained:
  • Copies of both of my PIP applications
  • Notes from both of my assessments
  • The DWP's notes on the applications, including the rationale for turning me down in each instance
  • Their responses to both of my requests for a Mandatory Reconsideration
All topped off with the following charmingly abrupt statement:
I've considered all the available evidence and considered which descriptors apply for each activity... I agree with all the descriptors selected.

I oppose the appeal and ask the Tribunal to dismiss the appeal and confirm the Secretary of State's decision.
It was not a great start to the day.

Every time I get one of these - and since January 2017 there have been a few - I immediately go into a mood of equal parts rage and despair.
"I don’t know if I can keep doing this any longer"
I can't help thinking that this is exactly the response they're counting on.

I end up ranting to whoever is closest to hand (apologies to the divine Mrs D), then firing off messages to my Dad or on Twitter [FULL DISCLOSURE: it's usually always both].

Then I take a deep breath, look through it all again, listen to the thoughts of the people around me, and think:
"There's no f**king way I'm giving up on this now"
I wish they'd let me stop! I'm not trying to bilk the system and I can think of a million things that I'd much rather be doing.

But if that's the way it has to be...