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.  

1
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.  

2
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.

3
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.

Tuesday, 22 August 2017

learn from my PIP mistakes!

AKA Everybody Has Been Burned Before 

Although it has been a while since I published anything I've got loads of fragments on my phone, bits of wrting for here and / or multiplesclerosis.net. Blogs about sleep and the lack thereof. The soothing sounds of BBC Radio 4 when all you have to do is sit around and try to slowly get better. But then real life gets in the way and the moment is gone.

To be honest it has been a bit of an emotional rollercoaster (to put it mildly) and some of what I've written seemed a bit facetious in retrospect. But no harm no foul.

In brief:
  1. I've had a few visits from a community Occupational Therapist and it has been brilliant to get a bit of movement going. This relapse and my recovery has been a harder slog than previously but every day in every way, yaddah- yaddah-yaddah.
  2. I've started therapy, which has been great. The hardest thing about this relapse has been the way it has affected the family (Mrs D, in particular) so to have a space where I can just sound off without having to filter my thoughts or worry about how the other person will take it is immensely freeing.
  3. I got the results from my JC Virus blood test and it came back negative, so I'll soon be stopping taking Tecfidera. After a period of "flushing out" the last doses, I'll be straight onto Tysabri - as long as my MRI doesn't come back with any surprises, I guess. The MRI itself was uneventful enough, although it was as much of a hardcore perspective-provider as my last one. When I came out this time my mum was talking to lady who I assumed was pregnant and was waiting for a loved one. It turned out that she was having an MRI to see if the huge tumour in what was left of her bowel (she'd already had half removed) was operable or not. Like a great man once said, too much fcuking perspective.
So that's it. Apart from...

Despite having been on Disability Living Allowance for the best part of a decade due to having a CHRONIC DISABLING HEALTH CONDITION, plus the fact that I was knee-deep in relapse when I was assessed, my application for PIP was turned down.

We found this out at the end of July and we're now over our first reaction (which was basically apoplectic rage leading to depression).

Here are a few things we've learnt:
  • The assessment is only based on the information you include on your form. So in our case all the stuff which has come on since then - relapse, adaptations around the house, physio and CBT therapy, worsening mobility - can't be included retrospectively (FYI my application was submitted in January, the assessment was in July). And if I'd got in touch to let them know about the developments, the DWP would probably have asked me to submit a new claim. So the system is broken at best, at worst very much rigged against disabled people - especially people with an unpredictable disease pathway.
  • We've been talking to a family friend who works at our local Unemployed Workers Centre - see https://www.tuc.org.uk/sites/default/files/UWCDirectory.pdf to find your nearest option (or contact Citizens Advice, MS Society, MS Nurses, anyone!). Ours has a lot of experience in overturning PIP decisions on appeal but he said that, based on the form I submitted, there was no reason I should have been turned down. So we've formally requested they reconsider their decision based on a number of points in their assesment which were incorrectly scored. 
  • If this fails we'll consider taking it to an independent tribunal with advice from the UWC. Or I'll reapply, including all of the recent developments. 
A final word of caution based on our experiences. If you're at the start of your PIP application process, even if you've been receiving DLA for a number of years (as I had), get some help in filling out your form (see the list above as a starter).

Although he said that I should have been successful, our advisor could see that the way I'd worded some of my application might've been open to misinterpretation.

As it seems to have been.

Sunday, 30 July 2017

what is not but could be if

As far I'm concerned, every relapse seems to have its own soundtrack. My 2012 relapse coincided with Little Ms D's first birthday which was emotionally hard for me to take. Because of this, I probably should have avoided coming across the music of Sharon Van Etten, whose first three albums are devastatingly raw and emotional.

Her voice - simultaneously tremulous and defiant, powerful and wounded - got me through the worst of my 2012 relapse, even if at times listening to her albums was the kind of bad idea which you can't help carrying through.

The sharp-eyed amongst you will have noticed that the title of this post comes from yet another Silver Jews song, and they are the band that I've been reaching for most often this time 'round.

Their music is a kind-of shambling, lo-fi type of country - but the skewed romanticism in the lyrics, delivered by the ruined voice of David Berman, are what does it for me, described on their Genius page as offering "an alternative, sometimes inebriated take on the traditional country themes of lost women, whiskey, Nashville, and disillusionment".
Silver Jews
One of my most oft-quoted lyrics (just ask Mrs D) is:
When I go downtown
I always wear a corduroy suit
'Cause it's made of a hundred gutters
That the rain can run right through.
But a lonely man can't make a move
If he can't even bring himself to choose
Between a pair of black and a pair of brown shoes
- Black And Brown Blues
Last week I went back to the QMC for a blood test to see if I have the JC Virus (mentioned last time because of the effect it can have if you take Tysabri).

Is it weird that I'm impressed by the fact that my blood had to be sent off to Denmark to be tested? Super-fancy!

This visit gave me an opportunity to ask the lovely Kate (MS Nurse) a few more questions because it had all got a bit noisy in my head and after reading that MS Trust leaflet I didn't really fancy taking any of the suggested new drugs.

She pointed out that the risk of developing progressive multifocal leukoencephalopathy (PML - or as Mrs D likes to point out, "piss myself laughing") is only 1 in 100,000 if the test comes back negative. If it comes back positive it "only" goes up to 100 in 100,000. And regardless, the MS team monitor people closely and continuously if they go down that route.

She said that Tysabri woud be her recommendation as Alemtuzumab can lead to a higher risk of developing another autoimmune disease - I know that this can be a common issue with any autoimmune disease like MS but why add to the risk?

So even though I can usually find myself unable to choose between my options*, if my bloods come back OK I'll likely be going down the Tysabri route.

* just like like the narrator in the song quoted above - it's weird how things turn out, right?!

I have another MRI next week. Which will be the third week on the trot that I will have visited the QMC (and the fifth time in seven weeks!).

Wednesday, 19 July 2017

another round of DMT pick n mix

genuinely helpful diagram that the brilliant MS Nurse drew for us yesterday
Yesterday I went to see the team at the QMC for a follow-up from the recent MOAR (Mother Of All Relapses) and things have certainly changed in the realm of Disease Modifying Therapies.

Most noticeably there seems to be a "failure will not be tolerated" attitude to treatments. Which is why after my first relapse in 5 years (and first in the almost 2 years since I started taking Tecfidera), the Neurologist and MS Nurses are keen to discuss changing medication, and a step-up from First Line treatments to more aggressively effective Second Line options.

So we're now back in the realm of weighing up drugs (or, more likely, sticking a wet finger in the air to see which way the wind blows) - the key contenders are:

Finngolimod (aka Gilenya) - one pill a day but the promised reduction in relapse rate means there's not a huge amount to choose between this and Tecfidera - it's still classed as First Line, and - like I've said - the various teams would like to see a move to something a bit more effective.

Tysabri (aka Natalizumab) - an intravenous infusion once every four weeks. The MS Nurse described this as acting like velcro on the immune cells in the blood stream, preventing them from passing through blood vessel walls and into the central nervous system where nerve damage occurs.

As it says in the MS Trust publication on Disease Modifying Drugs (links opens as a PDF):
Tysabri is a highly effective (category 2.0) DMD; it reduces the number of relapses by about two thirds (70%).
Sounds great, yeah? But hang on...
Treatment with Tysabri may increase the risk of progressive multifocal leukoencephalopathy (PML), an uncommon brain infection that can lead to severe disability or even death. PML is caused by a mutation of the JC virus, a common infection completely unrelated to MS. 
So there's that...

And finally Alemtuzumab (aka Lemtrada aka Campath) - taken as two five-day intravenous infusions, 12 months apart. Again, this is a highly effective category 2 DMD, reducing the number of relapses by around 70%.

Because Alemtuzumab suppresses the immune system, people are more vulnerable to infections, and there's the usual headaches and nausea. But surely that's not all, right?
Three serious side effects have been reported from clinical trials:
  • overactive or underactive thyroid gland leading to thyroid disorders, affecting 360 in 1000 people
  • 
idiopathic thrombocytopenic purpura (ITP), a serious disorder which prevents blood from clotting, affecting 10 in 1000 people 
  • 
kidney problems, affecting 3 in 1000 people 
These side effects are potentially serious but they are treatable if caught early enough. People taking Lemtrada will be informed of the early signs and symptoms of these side effects. 

When I was talking to the MS Nurse, she implied that Alemtuzumab had more risks associated with it (certainly more than the MS Trust publication implies), mostly because of how intense it is, effectively wiping out lymphocytes - more reading will have to be done.

So this is where we are! Next week I'm going back to the QMC for a blood test to see if I have the JC Virus and am therefore more or less likely to develop PML.

On first glance, I was leaning more towards Tysabri but now I'm not so sure.