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.

Wednesday 13 September 2017

put that thing away

Over the past couple of weeks I've been swimming a couple of times - for the first time since long before my relapse started in mid-June. Although I haven't managed to do as many lengths as I had been doing previously, it has been a good start.

Because I was a wee bit nervous my Dad came along on the first occasion. We went to the pool which is just down the road from our house, not the one we go to with Little Ms D which has unisex changing rooms.

The one which is closest to me very much DOES NOT. Why does this matter? Well.

By way of illustration, when we arrived last week we were greeted with the following sight.

A fully naked old man, with his back to us, bending over to dry his lower legs, balls SWINGING LOW, his third eye practically winking at us.

The level of nudity is something I've noticed previously at this particular swimming pool and it doesn't get any less weird, no matter how often I return.

Illustration based on the author's sworn testimony by my brother
I'm no prude but I can't see that I will ever be the sort of person who is that... I dunno. Blasé? Regardless of who you are, the male form is a ridiculous thing, all swinging danglers and proud salutations.

Even after I'd warned him, my Dad was silently mouthing, "What's going on?!" And that was before we walked further into the changing room to see a (clothed) man talking to a completely stark bollock naked man.

A couple of days afterwards I mentioned the fact that I'd been swimming to my community physio. After having a laugh about the old lads and their OLD LADS, I mumbled something apologetic about the low number of lengths I managed. She pointed out that a few weeks previously I'd been pretty much immobile. So I should maybe go a little bit easier on myself.