Wednesday, 15 November 2017

a brief word from our sponsor

Little Miss D came home from school with a poster she had created. I have it on my desk where I try to write, apply for jobs, listen to music, basically just carrying on.

At her school they have characters called Work-At-It Whizz and Really-Hard Ratty - I think this poster was part of the school's motivational ethos.

Under a picture she drew of a Beatle (probably Paul as he's her favourite - see below), it reads as follows:
Do not give up!
Work hard!
Some people give up
Never ever give up!
Do not think about giving up!
Think positive!
Please don't give up!
I think about not giving up
Think about not giving up!
No, do not give up!

Don't give up!
Never give up!
Yes, it's repetitive but I find it brutally convincing. I try to learn a lot from this sensitive and supportive little soul.

Wednesday, 8 November 2017

a one way ticket back to the life he once knew

the only Pips I want to hear about now
Last week I had my second PIP assessment. As before they tried to throw me off my guard by sending out an actual human being (or something very close to it) to do this assessment. I know, there's no end to the sneaky tricks they'll play.

Same as last time this involved going through my form, going over my answers and my history with MS.

However with my second application, rather than basing it on my previous successful applications for Disability Living Allowance, I had been able to include a few things which had come into focus over the summer. Namely, the non-stop party that was and continues to be...
  • Adaptations round the house
  • Intermittent self catheterisation
  • Change in medication due to having two relapses on the bounce
  • My experiences of physiotherapy
  • The fact that I am seeing a therapist for anxiety and low mood
Previously we’d been guilty of the old British stiff-upper-lip - not wanting to complain or be any bother. So this time we didn’t undersell things - and anyway, there was more disease activity to go over (particularly worsening mobility), more issues and more symptoms.

Having to talk about my low state of mind was particularly difficult because the person who was in the room alongside me was my dad. He knew that I’d been suffering with my moods anyway, as he’d been with me during my relapse. What was news to him, however, was the fact that I was continuing to have some unhealthy thoughts despite the positive steps I’d taken in therapy.

Anyway, the assessor "seemed" to understand the affect that MS was having on our everyday lives, as well as the difficulty of going over this material all over again.

(Apologies if my tone comes across as overly cynical - one bitten and all that)

I was grateful that the timescale wasn’t quite so drawn out the second time around - three weeks from submission to assessment, rather than the best part of seven months.

I’m also particularly grateful that - whatever the result - this should be the last hurdle I’ll be forced to go through this year. Let’s look at 2017 in a year of crappy headlines!
  • December 2016 - leave work, fill out my first PIP form
  • January - submit PIP form, apply for Job Seekers Allowance
  • February 2017 - get off JSA, apply for Employment Support Allowance
  • March to June - lovely bit of freelance work
  • June - relapse central
  • July - PIP assessment #1
  • August - turned down for PIP
  • September - began Tysabri and started to fill out my second PIP application
  • October - applied for PIP again
  • November - PIP assessment #2
And that doesn’t include Physiotherapy, Therapy, job applications, job interviews, numerous benefit applications, and so on and so on.

So now we wait for the outcome. I will probably write something more n the future about the wider implications of PIP as both a system and a process. But at the moment I'm just glad that this year is almost over.

And that I can do no more with regards to PIP - whatever the result, I'm just glad that I certainly didn't make an audio recording of the assessment. Not that I would be rushing to listen to it again (if I had made a recording, which I certainly DID NOT).

But just in case...

Monday, 23 October 2017

the locus of control

My current round of physiotherapy is (I think) my fourth stint. Each time I've been signed off previously, I've been full of good intentions. And I've always ended up back there when my walking has worsened, doing the same (or similar) exercises all over again.

So, as I went to my penultimate session at Neurology Outpatient Therapy Services last week, I was feeling all kinds of separation anxiety.

I ended up talking about this with my Physio, who, because some people aren't quite so keen on sharing every aspect of their life online (weird, I know), I'll call H.R. I'd been feeling pretty low - I'd been ill and although I'd been maintaining my exercises I felt that my walking had gone down the pan.

She listened to my bellyaching and started talking about the Locus of Control:
A person with an internal locus of control believes that he or she can influence events and their outcomes, while someone with an external locus of control blames outside forces for everything. This concept was brought to light in the 1950's by Julian Rotter.
from the Encyclopedia of Psychology
She said that her role as a physio was simply to give me the tools to keep well. It's like when you pass your driving test, you don't need a driving instructor with you all the time, you just need to keep driving. All the progress I'd made over the last months was down to me - it wasn't down to her, I had done all the heavy lifting.

And I guess it's true - although it feels like we've been in the trenches together, in actual fact I've seen her no more than 10 times (my relapse meant there was a hell of a gap in the middle).

After we had talked, I did some exercises and she watched me walking. And she said that I was moving better than I had been at any point since I'd started seeing her.

So this week I have my last session with H.R. And it feels precarious. So I need to remember that I'm the only one who has the ultimate influence on my ability to be well.

This has been the most traumatic summer of my life. And due to how amazingly supportive she has been, our physiotherapy sessions have at times been heavy on the Therapy, light on the Physio.

[interestingly my therapy session this week was more like Careers Advice, but that's another story]

So I have a job to carry on.

But I'm sorry, H.R.

Regardless of what you say, you are an absolute rock star. Thank you.

Much love,

A Grateful Patient

PS I'll always try keep your inspiring words close to my heart:

Shoulders back
Squeeze the tummy muscles
Lift your bottom

Monday, 9 October 2017

well, well, well, you're feeling fine

I am BLOODY LOVING therapy at the moment.

To be honest, last week's session really came along at just the right time. I'd been trapped in a cycle of bad and unhelpful thoughts. And a couple of nights before I'd written the following as a note on my phone. It kind of represents what was going on in my head. It's repeated here, almost exactly as it spewed out:
Applying for jobs
Applying for benefits
Applying for PIP
Worrying about money
Makes health worse
Difficult to prioritise
All are priorities!
Head spinning
Getting one thing out of the way,
Another priority sneaks up

As soon as you think one thing (e.g. Housing Benefit) is sorted, something else (e.g. PIP) rears up. But doing all this stops me engaging with the ESA [i.e. the opportunities that are open to me through my Employment Support Allowance], giving job applications my full attention, doing house work, finding time to do physio and engaging fully with therapy.… which makes me feel worse
So that's where I was at. The bit in the square brackets is the only thing I've added.

Anyway, I gave that lot to my therapist at the start of our session. We talked a lot about how I respond to worries - they tend to be around the big bits (PIP, Housing Benefit, money in general), but I usually just crack on with those when they pop up. However, I DO tend to go at each thing full-pelt, not really prioritising things very well - which is why me head sounds like THAT.

As I've mentioned before, I only tend to lose my shit about little bits and bobs - trying to get The Child ready for school, where my wallet is, etc. She saw this as something to do with my "Intolerance of uncertainty" and need for control.

Next time we'll be talking about a more balanced approach to prioritising - bring that shit on.

I also talked about the fact that frequently, whenever I lose it about any tiny little thing, I have a simultaneous Director's Commentary in my head, saying things like, "wow, that's totally unreasonable of you... yep, you look like a total dick now".

It happened twice that day, once in a heated discussion with Mrs D (she's a very lucky lady, I think we can all agree) and then when I was driving to therapy.

Everyone has that kind of thing in their head, right?

Friday, 29 September 2017

so how was your morning?

Here we go!
take a moment to imagine the hairs coming out when the tape was removed
I started writing this earlier when my first Tysabri infusion was underway.

One of the top tips for having a good infusion is to have a good night's sleep. Which obviously was not forthcoming last night.

The journey into hospital was a bit of a handful (a bloody Hardy-esque pathetic fallacy was in full effect once more). Before getting started I found out that my Lymphocyte count was down again, disappointingly - I'd have thought that this should have been sorting itself by now, seeing as I've been off Tecfidera and my wacky Vegan-ish diet for a few weeks now.

After a quick unburdening-of-woes with a lovely MS Nurse, I was hooked up and we were off - following a truly bizarre pit-stop when a different nurse took my blood pressure, my pulse and stuck a thermometer in my ear, all at once.

One lady (clearly a lifer) who was having the same treatment told me what to expect - metallic taste (a la steroids), a dry mouth, tiredness, and feeling headachy with those pesky flu-like symptoms beloved of all MSers everywhere. D'you think there'll ever be a future MS treatment which doesn't list this as a common side effect??

[Post-infusion update: no dodgy taste (although I was pretty much eating non-stop), feel slightly achy and a bit rinsed out. Otherwise, all good and I still feel fine now.]

Here's what I ended up listening to while having my infusion (minus the first course which was last night's episode of The Archers - the only soap opera which I have any time for):

Evinha — Que Bandeira
Nina Nastasia — This Familiar Way
Ween — It's Gonna Be (Alright)
Tom Waits — Falling Down (live)
Grizzly Bear — Wasted Acres
Lambchop — NIV
The Walkmen — My Old Man
The Burning Hell — Industrialists
Lambchop — Harbor Country
Jonathan Richman And The Modern Lovers — My Love Is a Flower (Just Beginning to Bloom)
The Cramps — Human Fly
Animal Collective — Banshee Beat
Jonathan Richman And The Modern Lovers — Abdul And Cleopatra
Ween — The Blarney Stone
Rolling Blackouts Coastal Fever — Wither With You
Nina Nastasia — Lee (Daytrotter Session)
Richard Dawson — Masseuse
Jonathan Richman — Stop This Car
Silver Jews — Pet Politics
Silver Jews — Black and Brown Blues
Silver Jews — Ballad of Reverend War Character

Friday, 22 September 2017

i wanna be back in your life

Too long between updates! Let's get this started.  

We sent a request for the DWP to reconsider my application for PIP. And obviously they ignored all the points we raised, kept my score exactly the same and turned me down.

We met with our Unemployed Workers contact and talked about taking this to a tribunal but, like I said previously, all the things that have happened since January (when I first applied) won't count. So I'm going to make a fresh application which includes everything. Which will be fun.  

I got a note from the MS Nurses which says that my recent MRI showed significant increase of lesions. Honestly, the horrible stuff which comes through our door - I feel like our letterbox needs a quarantine section. Even better, this particular letter had the wrong address on the envelope so it ended up with some neighbours. Which wouldn't be the end of the world if their letterbox hadn't ripped the envelope open. Awkward.

I've been DMT-less for a couple of weeks as I get Tecfidera out of my system ahead of my first Tysabri infusion next Friday. The first appointment is a bit longer as I need the be "consented" - the kind of phrase which just makes you feel all warm inside, right? Yeesh.

Unhelpful bellyaching aside, it will be good to get started. Fingers crossed.

Physio is going really well, my swimming is coming on, and CBT therapy is so helpful. Why people aren't recommended to start this on diagnosis (for any chronic illness, not just MS) I have no idea. Having said that…

I had a job interview the other week, my first for a LONG time. The people who interviewed me said that it was really close between me and two other candidates. Which isn't as comforting as they think, but at least I wasn't miles away.

But I was unsuccessful and - to be frank - I totally lost my shit when I found out.

After a couple of really unhelpful rants (apologies and a tip of the hat to Mrs D and Jackie Z) a couple of things turned me 'round.

Firstly, Mrs D pointed out that a couple of months earlier I wouldn't have been able to get it together to put in an application, let alone one which got me an interview. I also wouldn't have been able to prepare a presentation, get myself suited and booted, or do a good interview.

(I must say that, without the ongoing support of Mrs D, there's no way I'd have got anywhere near the interview. I'm a lucky chap.)

Secondly, Little Miss D came back from school the same day with a certificate for being Pupil of the Week. What a legend.