Monday, 31 December 2018

shame of our nation

Speaking to an MS Nurse at my Tysabri infusion she surprised me when she said she'd had some good news that day. Because she had just found out that her application had been successful and she would be allowed to stay in the UK.

Call me naive but this totally blew my mind. That there was even a possibility that this qualified and endlessly experienced and empathetic nursing professional might be forced to leave the country she and her family call home.

Who's next? The MS Specialist Neurologists, who are all EU citizens? Who exactly is lining up to replace them? 

At the same time, a friend shared a video from the Home Office Facebook page publicising the EU Settlement Scheme. Over some jolly muzak, a series of diverse and smiling family and social groups, presumably talking about how much they're relishing the opportunity of applying to live in the communities they have enriched.

See how happy they are!

caption: If you are an EU citizen living in the UK, and want to stay in the UK after the 31 December 2020...

To say we should be ashamed of what our nation has become is something of an understatement.

Sunday, 30 December 2018

meat is… murder?

Even before my dalliance with the OMS lifestyle I've been a circumstantial pescatarian for a while.

[Circumstantial Pescetarian - great early EPs but that first John Peel session was an absolute cracker #oldManJokes]

Back in the day of my initial diagnosis the watchword was varied diet with as much fish as you could stomach.

Mrs D has been vegetarian for more than half of her life so our diet is naturally veg-heavy - although Little Ms D loves chowing down on all of her farmyard friends.

After falling out of love with the OMS Pesco Vegan diet last year I decided not to start eating meat again - not from any great moral standpoint, just for convenience sake. Even for someone obsessed with (that band AGAIN!) The Smiths at a formative age, I've never really thought about the food I eat at a particularly deep level. As long as it tastes good I'm in.

alright, alright, we get it - you really REALLY used to love The Smiths

Having said all that, the food section is one of my favourite parts to read in our paper. Recently there was an article about preparing the perfect Christmas ham. My mum prepares one every year and I looked at the picture in the article for so long I could practically taste it.

I posited the idea of eating some this year and was all set. But when the time came - much like the Philly Cheesesteak I didn't have in Philadelphia - I just couldn't face it.

I think my meat-free diet has been going on so long that the idea just seemed bizarre.

I know how hypocritical that is when you consider the horror-show practices of the dairy industry. And that's even aside from the fact that I'm perfectly comfortable with eating living things as long as they do their living underwater.

But I don't think I can do any kind of vegan diet again. It was hard on everyone around me and super-expensive. Which is pretty depressing - it's cheaper to eat the flesh of an animal bred and kept for the purpose of being eaten than something which grows out off the ground.

Plus when I talked to Mrs D about this blog she said - in no uncertain terms - that there was no way I could even consider trying to be vegan ever again.

Thursday, 6 December 2018

the power of The Smiths

I went for a UC (Universal Credit) "commitment" appointment the other day, due to starting my job.

This is because, even though this job is still classed as Freelance / Self Employed, it affects some of our other benefits. And because Derby is now a Universal Credit area it’s all change for us.

We’ve all read about the shitshow that is UC. But last year, when I was repeatedly answering the same questions when applying for JSA, ESA and Housing Benefit (all while battling the evil PIP beast), we talked about how much simpler it would be to input our info once and it be automatically farmed out to the relevant agencies.

So in theory we’re all for it.

The meeting was fine and we were well prepared. Although it was another case of a meeting where the person we were talking to said, "I don’t actually think you need to be here..."

Part way through, the chap asked if he could answer his phone as his car was at the garage. We said fine but as he walked off we were puzzled by his familiar sounding ringtone.

So when he came back I asked him what it was. It turns out it was Spent The Day In Bed by Morrissey, which we'd heard on 6 Music.

He asked if I was a fan - I said no, but The Smiths were a different story. I repeated my party line that, although I don't listen to them very often, there will never be another band who means as much to me as The Smiths did when I was a callow 13-14 year old.

(and yes, I do repeat this line a lot)

The chap we were talking to said he got goosebumps when I said that - thankfully Mrs D didn't burst out laughing at that or suggest we get a room.

We had a brief chat about the music, Morrissey's recent wrong-headed pronouncements and got back to the job at hand.

At the end of the meeting he said, "I just have one final, very important question to ask you - what's your favourite Smiths song?"

That's quite an ask! (no pun intended) Mrs D helpfully reminded me that my favourite lyric is the opening line of This Charming Man (for the economy - SIX WORDS! - which sets up the world of the rest of the song).

But the song which immediately sprang to mind - and which I still stand by - was The Queen Is Dead.

He said that he was more melancholic so his favourite is Well I Wonder, possibly one of the most hilariously downbeat and self-pitying songs in their whole catalogue.
Gasping, dying, but somehow still alive
This is the final stand of all I am
Maybe this bloke's in the wrong job?

Over the last couple of years, I've had to deal with local government benefits agencies alongside the Department of Work & Pensions on numerous occasions. And the bureaucracy is staggering at time.

But whenever I finally get through to talk to a real person, they are almost without fail incredibly helpful and understanding. And they're the people at the sharp end of carrying out the sticky manoeuvres of some fairly unpopular policy.

Maybe I've been lucky. But the next time you get through 55minutes of call waiting messages soundtracked by Vivaldi's bloody Four Seasons, spare a thought for the person who eventually answers your call.

Friday, 30 November 2018

moodswing indigo

I started writing this while having Tysabri infusion number 16.

As part of each treatment the MS Nurses have to ask a series of standard questions. Are you allergic to anything. Have you had any infections, cold/flu symptoms, that kind of thing.

One question always provides an opportunity for hilarity: how has your mood been?  

Oh I'm as up and down / miserable as ever. Chortle.

This is because the delightful PML brain infection (Progressive multifocal leukoencephalopathy, sprung from the JC virus) can cause personality change as one of it's first symptoms.

And due to Tysabri's efficiency in stamping on any foreign agents in the Central Nervous System (including the body's own immune system), once it takes hold PML can lead to severe neurological disabilities and - TA-DAAAH! - death. Marvellous.

The Nurse recently told me a story about another MS patient. He was known to be miserable, antagonistic and aggressive to his family and his care team. A proper arsehole.

After a few months on Tysabri he became noticeably more cheerful. He started being more pleasant to live with, stopped picking fights, laughed easily.

The nurses noticed this, became concerned and sent him for an MRI scan which showed the early stages of PML.

Luckily they caught it in time. I wonder how he is now?

Thursday, 29 November 2018

the (work) conversation

When I was first diagnosed with MS I was working in a theatre. I tried to keep it on the DL but made sure that the colleagues I worked with every day knew what was going on.

The following year I had a couple of freelance roles. And in each organisation I made sure that I had The Conversation and at least one person knew about my condition.

After that I got my job at my most recent employer. I had The Conversation and told my boss (on the first day!) that I had MS. I was able to keep this fairly hush-hush until I had two relapses in the course of a couple of months. The large amount of time off meant that I couldn't really hide it any more.

So my employment history pretty much consists of a series of 'comings out'. And for the last few years - as my invisible disability has got more visible - I've been pretty much out.

As a member of the CULTURAL ELITE, the people I've worked with have stayed fairly constant - we all might've moved from organisation to organisation but the faces tend to stay the same.

So when I had the interview for my current short term contract, I was able to discuss my health openly, as I knew two of the people in the panel fairly well. Not to say what I couldn't do, but focusing instead on what I can do and do well.

My role offers a level of home working and on the whole it has been good so far. Even so, when I've gone into work, I've found waking up, washing, breakfasting, dressing and travelling to an office for the first time in two years utterly banjaxing.

I recently needed to have a variation of The Conversation with my line manager - the "I know this is part of the advertised role, and we skirted around it in the interview, but the thought of doing it is making me ill and I can't do it and I don't want to".

Y'know, the one where you feel like a complete liability and a dead weight.

I've said it before - and admittedly I've been burned by it before - but people working in arts and culture can be bloody lovely. When I told my line manager that I hated feeling like I was letting her down she said that she hated the fact I had to deal with these issues. Her understanding, and her comment that everybody really appreciated everything I was bringing to the project, was like a load off my mind.

Further proof that I was settling in came later that day. I'd left the office and said goodbye to two other freelancers working alongside me. I nipped to the loo and when I came out, one of them said "are you still here?!"

Then she darted off, saying "I'll race you to the lift!"

Cheeky sod.

Truly I have found my people. Again.

Wednesday, 31 October 2018

driving, mobility and the 20m rule

I've always loved driving, ever since I passed my test *gasps* over a quarter of a century ago.

When I passed (second attempt, like all the best drivers) I'd always look for a slightly longer route and go for meandering pointless drives for no real reason. Years ago, an ex-girlfriend completed some postgraduate study in York and pretty much every weekend I'd do the 180 mile round trip, returning back home in the Monday morning rush hour. And I liked it.

I've always been a safe driver and my MS hasn't affected my abilities. In actuality, the fact I was able to drive was used as a reason my Personal Independence Payment (PIP) application was turned down last year.

See? We're not joking when we say that this system actively penalises people for their independence.

Anyway. Full disclosure: over the last few years there HAVE been a handful of incidents when I've been driving long distances and my left leg has gotten tired. Which could mean that gear changes required careful planning.

Which is all well and good during normal driving. But recently I decided it was time to stop riding my luck.
I've always driven with manual gearboxes but a couple of months ago we got our hands on an automatic car. And it's brilliant.

It's taken so little time getting used to driving without changing gears that I can't imagine going back to a manual car. Aside from anything else I'm not tired when I get to where I'm going. Plus not having to think about gears allows me to concentrate on everything else which is going on.

I personally decided not to explore other adaptations but what is available is staggering.

Help for driving can include hand controls, steering aids, pedal modifications. Transfer plates and swivel seats which help people get into their car.

There are even roof boxes that can pick up and store a wheelchair, like some kind of benign Transformer.

Obviously these things come at a price. If I hadn't got the enhanced mobility part of my PIP award I would probably have had to give up driving - maybe not today but soon.

There are a lot of people with MS who aren't getting the PIP settlement they should be entitled to and the 20 metre rule is the main reason. It's such a cruelly inflexible rule - especially when MS is a condition which fluctuates on a day-by-day (if not hour-by-hour) basis. It demonstrates a complete inability (or unwillingness) to engage with the reality of the condition.

I've grumbled about the MS Society over the years but their ongoing campaign against the 20m rule is one of their best.

Monday, 29 October 2018

when is independence not independence?

When it's independence in Multiple Sclerosis!

Last week I was invited to attend a workshop in London on this very topic, the first time I've done anything like this.

The objective of the workshop was to:
  • Look at what the concept of independence means to people with MS and their carers 
  • Explore how MS health and care services can make achieving independence a core objective, to inform the development of policy and practice recommendations
whiteboard? post-it notes? it's a WORKSHOP!!
All in it was a pretty interesting day and I do enjoy chatting to other people who get what it's all about. Also in attendance was a MS Nurse from the Queen's Medical Centre (she taught me how to inject Rebif back in the day!) and someone from the MS Society.

However, it's grimly ironic to note that of the people with MS at a conference on independence, every one of them came with a carer or companion.

For my part, Mrs D was busy so my Dad came with me. Aside from his help with the cognitive and anxiety-raising issues associated with travelling to London, we took my wheelchair. This was mostly for use in getting around train stations - aside from this we were either getting taxis, and obviously I was rocking my sexy double sticks.

In order for me to be independent enough to attend this event, it took:
  • A lift from my father-in-law to and from our local station
  • My father attending the event with me and transporting me by wheelchair when necessary 
  • First-class train travel both ways - for extra room, and less chance of hassles with dodgy loos or gits in your seat
  • Pre-booked assistance with getting the wheelchair on the train - I walked to my seat both journeys but it was meant to help my Dad get the chair on board. AN ASIDE: the assistance was provided in each instance (we've all heard horror stories about assistance simply not turning up) but my Dad is quite impatient so we only used it on our outward journey. Every other time he just made it work.
  • Taxis - I don't need the hassle of dealing with the Underground

And that's not counting the rest of my family and all the medical professionals who get me to where I can even consider travelling to the extent which I have this year.

Aside from remaining in employment, concerns about financial security and the wobbly nature of the welfare state, this was one of the main things we talked about at the event - the fact that each of us has a silent majority working behind the scenes to keep us going.

So much for independence! It's like the African proverb, "It takes a village to raise a child".

But in my case, it takes a small army to give me any kind of independence.

Tuesday, 16 October 2018

snake oil radar

In my ongoing health "journey" (ugh) I've tried some odd things. Reiki. Wackily restrictive diets. Prescribed medications which made me go psychotic.

But even I would draw the line at drinking my own urine.

I'm sure* that you will agree.

But the idea of urine therapy is something that popped up on my snake oil radar yesterday.
Don't worry - this isn't coming from any recognised or qualified source. It's just a crank on the internet called Kevin Hinkle, a self-proclaimed urine therapy advocate (is that what's on his passport**?).

In a long and rambling Instagram post (which I won't dignify by linking to here) he talks about its "known" ability to heal disease, including "cancer, arthritis, multiple sclerosis and hundreds more".

He even claims that it will whiten your teeth - common sense tells me that would be the LAST thing it would do. 

Don't worry, he includes some hard-hitting science. 
Because it is created by your own body, it helps to re-educate your immune system as what is foreign and what is domestic. It helps to teach your system and fine tune it to recognize pathogens and invaders. It's similar to reading a book for the second time or watching a movie for the second time.
So that's fine then.

Apologies for the snarkiness. There might be something in this, there might not***.

I've had a deeper look at his Insta profile (so you don't have to) and he spends a great deal of time rubbishing the 'deadly neurotoxin' fluoride, while talking about how the sun protects you from cancer (which can be created by the chemicals in - you guessed it - Sunscreen).

More importantly, this is yet another example of the fact that the Information Superhighway (as all the cool kids are calling it) is a wonderful and scary place.

Anyone can publish something online and reach a potentially massive audience - which is a GOOD thing.


Anyone can publish something online and reach a potentially massive audience - which is a TERRIFYING thing.

* = fervently hope 
** = pissport
*** = probably isn't

Thursday, 4 October 2018

i was looking for a job...

WARNING: contains motivational claptrap
the CULTURAL ELITE in a salon yesterday

Recently there has been a weirdly high number of suitable jobs for which I could apply.

It's strange. It has been a struggle and most of them have been of the "work up application, submit, get no response at all" variety.

But recently a position came up at a city-wide photography festival, a role that was my first ever freelance position (about 12 years ago now!)

So I thought I'd give it a go.

The job description was interesting, in that the vast majority of tasks were desk-based. But there were a couple of curve-balls involving taking journalists on walking tours round the festival.

With the best will in the world, this wasn't going to be something I could do.

I talked it over with the divine Mrs D and she persuaded me to go for it. Show them what I can do and negotiate the rest if and when the time comes.

I had an interview earlier this week and it was fine. Part way through, they asked if there was anything about the job description that I was concerned about. So I told them (even though, as I'd walked in with both sticks blazing, they would have guessed).

After a written task it was over. I felt it had gone ok but didn't hear anything that night.

As the following day progressed with no word at all, I started beating myself up. That job should've been a no brainer. What had I done wrong? Mrs D was more of the opinion that, if I didn't get the job, she'd want to know why. We know people shouldn't discriminate on the grounds of disability but, y'know, they do.

Long story short, they called at around 4.30pm to offer me the job.

It's part time for seven months and I can do a lot of the work (which is totally within my skillset) from home. Perfect.

So for the next seven months, I'll be a fully paid up member of the CULTURAL ELITE again. Did I ever really leave?

(As an aside, I looked for an image of the CULTURAL ELITE to illustrate this post. But on looking at the second image which came up on Google, I realised that I have worked with three of the people in the picture. And I know the photographer. I do not know ANYONE in the image above!)

If anyone reading this is always seeing jobs which they can 85-90% do, don't let the other 10-15% - which might be beyond your physical capabilities - put you off. Have faith, know your worth, and go for it.

(Told you!)

Thursday, 6 September 2018

take a picture, what's inside

I don't want to sound dramatic, but my first MRI scan was in a kind-of Eastern Bloc-era iron lung in a pitch black room.

So my MS diagnosis came from a machine which was (in my mind) similar to this image of Agent Jeffries (David Bowie) from Twin Peaks: The Return.

I don't think my brother has ever forgiven me for using a mix CD he'd made for me as the soundtrack to this (genuinely traumatic) experience. I haven't played it since.

The scans I've had ever since have been perfectly lovely, however.

Rooms filled with light, with fresh air pumped into the MRI chambers and absolutely charming staff.

Like all things MS, I get that I'm insanely lucky with this postcode lottery. But again say I - GOD BLESS THE NHS.

It's probably a good job that the MRIs are easier to manage. Because after having one scan in 2005 and not having another one until ten years later, I'm know having them multiple times a year - particularly since starting Tysabri. This is to check for physical signs of Progressive multifocal leukoencephalopathy (PML).

Incidentally, my latest JC virus test came back positive but slightly less so than before. Even though I'll always be considered positive for the JC virus now, it's good to know that it can go up and down.

Not that I can do a damn thing to influence the direction of the count, mind.

I had my latest MRI scan earlier this week. It was pretty brief - around 15 minutes - as I only needed my head doing. I asked if they could play some music into the room to help pass the time - the metronomic soundtrack of 10 loud clangs followed by 14 less emphatic beats gets pretty wearying.

(Yes, I counted them. I said it was a lovely experience, I didn't say it wasn't tedious)

They popped on XFM which happened to be playing "Heart-Shaped Box" by Nirvana. I don't think I've heard that properly since I was researching my dissertation, which was all about the semiotics of alternative music in the mid-1990s.

It might sound like a Mickey Mouse dissertation but I got my degree from a proper University, I'll have you know.

Anyway, it was loud (quiet-loud) enough to cover the MRI. So that worked.

Even though this is inspired by her own experiences of an MRI (IRM in French), Charlotte Gainsbourg's song probably wouldn't have helped all that much.

But this live version is pretty great. And the video is way better than the 1990s MTV monstrosity which accompanied "Heart-Shaped Box".

Wednesday, 29 August 2018

live-blogging emotional distress

[The following was written earlier today on my phone]

Believe it or not there is an element of planning which goes into these posts. Even if they have an air of the inane ramblings of a grumpy old fart.

This being MS, however, there's always something which can bring you back to earth. More often than not, explicitly so. 

As I write this I'm in Wales with Little Ms D, my parents, my brother and his kids. So far it has been a non-stop cavalcade of lazy beach days, seaside food and amusement arcades. And I've pleased myself (and others) with the amount of walking I've done. 

Was I too pleased with myself?

No matter. Because early we today, after a good while engaged with the serious business of building some sandcastles, I found I couldn't get up. And when I did, I lost my balance and - in the most drawn-out slow motion scene ever - I ended up falling into the rock we'd parked ourselves up against.

Grazed arms, jarred back, bruised ego. 

Or, in my brother's more positive version...

I fell into a hard rock wall and didn't split my head open. 

Can't argue with that kind of logic, right?

I lay on the floor for a good few moments. I was pretty happy down there to be honest.

I'd forgotten that I can't really squat on my haunches, even for a short while, without my shitty legs packing up on me.

Later, when walking up to buy an ice cream, I was unable to pick my feet over a clump of seaweed. So flat on my arse again.

Bruised ego 2: Electric Boogaloo.

After initially wanting to go back to the holiday home I decided to park up on a bench. Which is where you find me.

I'm currently watching my daughter play football with her cousins. I hope she doesn't ever think I was voluntarily absent from scenes like this. And I hope she knows that I wish with all my heart I could do all the normal Dad things.

Thursday, 23 August 2018

eye tests at home

As a speccy with MS it's important to get my eyes tested regularly. It took me several years to find out why - the Central Nervous System [CNS], under attack from our overactive immune system, joins up directly to the back of our eyes.
Anatomically and developmentally, the retina is known as an extension of the CNS; it consists of retinal ganglion cells [neurons located near the inner surface of the retina], the axons of which form the optic nerve, whose fibres are, in effect, CNS axons.
It's pathetic how I was so not curious about any of this stuff before. But I'm lucky that I've never had any instances of Optic neuritis.

*touches wood frantically*

According to the MS Trust, for around a quarter of people with MS, this is the first symptom they have.

I recently realised that it had been about 4 years since my last test. And back then my vision hadn't altered enough then to warrant the expense of new bins.

Which meant that my glasses were around eight years old. Which obviously included a number of years where they'd been under attack from a curious and 'handy' Little Ms D. After years of accidental shoves and grabs they hadn't fitted me properly for ages.

However, with my mobility being what it is, getting to the opticians can be a major operation, involving the car, someone else, as well as grudging use of the dreaded wheelchair.

So when Mrs D heard that Specsavers offered home eye tests for people in receipt of certain benefits, it seemed like the perfect solution.

It was really easy to arrange but quite odd in practice. Two guys came round to my house, got me to sit wherever I was comfortable, closed the blinds, and the whole test was done on an iPad. This was placed on the other side of the room for the standard eye chart and handed to me for the close reading tests.

Obviously they weren't able to do a full retinal scan (which I always quite liked in the past) but I didn't feel like I was being shortchanged. They really had a good look in there!

A couple of weeks later they came back round with my new specs. They even brought a little mini heater to enable them to make the usual last-minute adjustments.

It seems like, as with so many things, arranging an eye examination at home can be a bit of a postcode lottery. This page on the RNIB site offers some good information about locating this service wherever you are should you need it.

As for my new glasses? I'm really chuffed with them.


However in researching this post, I've seen some utterly gross anatomical pictures.

We really are just fleshy bags of wires and guts, aren't we?

Friday, 10 August 2018

travelling around venice by wheelchair

Last week we returned to Venice for the first time in 11 years. How would we manage with a wheelchair?

In my more downbeat moments, I'd been quietly (and not so quietly) referring to this holiday as my last chance to see Venice. Regular visitors will know my mobility has been steadily declining, even before the two relapses I had last year (from which I'm still recovering).

And even though it's been a while, I can remember enough about Venice to know that it's not the most accessible of cities.

But because we didn't get to go away as a family last year, we booked this holiday, with my parents coming along as backup. Anyway, we wanted to show Little Miss D where we got married.

We were staying at a nearby resort called Lido di Jesolo. Mrs D and I had been a few years back and thought that it would be a perfect place to visit with a family. It's super flat, miles and miles of beaches, hotels, bars, restaurants and amusement arcades. It also seems like it's the sort of place where Italians go on holiday, which is always pretty cool.

The flatness of the resort was a pretty big seller for us because - like Philadelphia a few months back - we were traveling with the wheelchair again. And a nightly passeggiata has always been a favourite part of any Italian holidays we've had.

I'll talk about the journey in another post because there are just some weird things which seem to happen whenever you travel with a wheelchair. Completely frustrating and totally avoidable things to my mind, but here we are.

But for one day we went over to Venice. We booked on an organised trip for a little for peace of mind - had mobility not been an issue we could've "roughed it" and organised a much cheaper way. But as I've noted before, being disabled is EXPENSIVE.

One benefit was that we'd be on organised buses from our hotel with private boats over to Venice, with some assistance at either end. One of the guys who helped me on and off the boat was so attentive that I complimented him for his beautiful dancing.

First up. Here's the big news...

[drum roll...]

Venice has got ramps! 

That's right, Venice has got [admittedly, not many] RAMPS on some key bridges. 

These are on the four biggest bridges which lead from the main drop-off port, taking you past the Hotel Danieli and the Doge's Palace and into Piazza San Marco.

Without them we would not have got much further at all.

After that, we used a combination of Google Maps, a free Ulmon Venice Travel Guide app and our own failing memories to navigate a mostly bridgeless route through the back streets.

Firstly Venice is a typical busy European city. And despite the claims of the people with whom we booked our day-to-night tour, not everyone leaves at 5 o'clock (although it does get noticeably quieter). If you're ok with that you'll be fine.

Especially if you know to walk on the right hand side of the paths.
The map / app combo helped us get about really easily. I can't remember there being too many bridges which I needed to cross on foot (with my two sticks). And most were 5-6 step bridges - easy to do if you can slump back into your chair afterwards.

One thing we wanted to do was see Palazzo Cavalli where we were married almost 12 years ago. By this point we were all exhausted (the temperature was in the mid 30s the day we visited). But looking at the maps, there was no way to get there without crossing a bridge.

I was defeated. Mrs D, my Mum and daughter pootled off to see it while me, my Dad and chair stayed on the other side. I felt so downhearted.

But then I got mad.

If this was my last visit to Venice, I was damn well going to see where I got married.

I got out of the chair, dragged myself up and over the bridge (my dad followed with chair) and made it to the doors for an emotional photo opportunity with my girls.
you have reached your destination
So Venice. It's still beautiful, bonkers and back-breaking (thanks, Dad). The paths are pretty good so my chair managed well. And if you're bloody-minded enough, you'll get where you need to, regardless of MS.

We're lucky that we've pretty much done Venice over the years. There was nothing in particular that we needed to see, we just wanted to have a mooch around and take it all in once more.

It can be done.

Will we do it again? That remains to be seen. But if not, at least I had the opportunity to say goodbye to it.
beware the locals (1)

beware the locals (2)

Friday, 27 July 2018

you too can be a PIP / ESA assessor!

In my search for work, I have signed up for many email alerts.

Imagine my surprise to receive this one.

Yes, it certainly does seem to be for a Personal Independence Payment (PIP) or Employment and Support Allowance (ESA) assessor. You may find it as interesting as I did!

Posted here without comment...

(Excuse the screen grabs from my phone - full text included below)

Full advert text:

My client based in Derby is looking for a number of Disability Assessors to join their team.

Full training will be provided and hours of work will be during the day from Monday to Friday.

Starting salary is £34,000 with additional benefits including paid holidays, life insurance and company pension. 

Undertake an assessment of an individual who is making a claim taking into account all of the information presented including any supporting evidence e.g. the claimants completed questionnaire and information from GPs etc

Carry out a comprehensive review and analysis to enable you to complete a robust, structured report which will then be presented.

This report will contain a detailed history of the claimant condition(s) including information gathered on the functional impact of their health condition or impairment on their daily living and mobility, their current medication and treatment

You will provide a full justification explaining how you came to these conclusions from the evidence gathered and define the probable timescales over which a health condition or impairment may affect the claimant.

  • Qualified Nurse, Occupational Therapist, Physiotherapist or Paramedic
  • 2 years post qualification experience
  • Valid PIN
To apply for this position please email your CV via the link provided

Job Types: Full-time, Permanent

Salary: £34,000.00 to £38,000.00 /year

  • Paramedic: 2 years
  • Nursing: 2 years
  • Physiotherapy: 2 years
  • Occupational Therapy: 2 years

Wednesday, 25 July 2018

mind games

My mental game has been taking a bit of a battering over the last week or so, not helped by the stifling heat in the UK.

As Cole Cuchna would say, let's Dissect!

sing me to sleep

Obviously the heat isn't helping any of us with getting to sleep. The weirdest thing is, I have been dreaming that my alarm is going off. Yes, my dreams are that interesting.

It always happens about 30 minutes before my alarm is due to go off. But that doesn't stop me taking an age to realise what has happened.

One night this happened three times.

the drugs don't [seem to] work 

No complaints about Tysabri. But it seems that Fampyra / Fampridine has plateaued again. It doesn't seem to be doing anything to help at the moment so I'll probably need to have a fallow month.

Just in time for the summer holidays. Score.

never gonna do it without the FES on

In other walking news, the FES (Functional Electrical Stimulation) seems to be doing its job quite nicely. But it currently takes me around half an hour to get the damn thing on, however.

After drawing the correct position for the electrodes on my leg with so-called permanent markers (which ALWAYS washed off), I've been trying to do it by sight and touch. Way more complicated than it sounds.

I've got another appointment with the Gait Lab next month. Remind me to ask them to explain why I can't have a tattoo of the correct position.

wii Can Work It Out

I'm going swimming when I can but on days when I don't I've dug out our old Wii Fit. There is a great range of things to do on there.

I aim to do a bit of Yoga, some exercises and end by doing a few balance games (NOTE: I'm still the king of the Penguin Slide game).

Screen saying "You were very unsteady just then. It's difficult to maintain a beautiful pose if your posture is bad."
well DUH...

I could without the not-so-passive commentary from the instructors, though.
Screen saying: "Your body seemed very shaky during this exercise. Don't forget, a stable body can help to achieve better posture."
oh get knotted..

you can't put your arms around a memory

Ah Facebook. Such an odd place. I quite like the Memories feature. Even though it's usually a memory of me posting some asinine political meme or musical blathering.

But I'll be honest. This bit of musical blather almost broke me.
Longtime visitors might recognise Annabel as my late friend who I wrote about here. Still much missed.

Friday, 13 July 2018

the blogger’s conundrum

What to write when there isn't much going on?

This time last July I had only just returned home from my parents' house, after a second relapse and second dose of steroids. I was just about to begin Cognitive Behavioural Therapy sessions as well as recommencing physiotherapy. Plus I'd just had my first PIP assessment.

Quite a lot has happened since then!
  • CBT was fantastic. I never did put myself in for another round but I don't think there’ll come a time when I won't need to keep working on my mental game. Still many improvements to be made! Mostly to do with the way I handle (or don't) stressful situations. 
  • I started on Tysabri, one of the more intensive MS treatment options. I started writing this during my 11th infusion. I've also had bloods taken for a further JC Virus test. As I mentioned previously, because I recently tested slightly positive I'll always be considered positive now, even though the score can go up and down. 
  • And because of this I've got another MRI coming up soon. My last one showed no physical signs of Progressive multifocal leukoencephalopathy (PML). Which is something. I'd hate to die because of something which I can't even say...
  • I'm still keeping on with my physio - the improvements are incremental but enough to keep me going. 
  • We've been to Philadelphia! Still seems utterly surreal. 
  • We defeated the evil PIP monster. Not to sound overly triumphalist but I am proud - of my family and, yes, me too. That we didn't give up. 
I'm still trying to find work that I can do - or want to do. That's the big challenge now!

This isn't work but it's nice to have been nominated, regardless - if you should feel so inclined, please click on the image below to endorse this little blog.

Thursday, 28 June 2018

my PIP story pt.2

I hope these posts will be encouraging for anyone going through the PIP application process. I am NOT an expert.

Read Part One here 

5. Preparing for an assessment

This article is a pretty chilling depiction of the faceless bureaucracy of a PIP assessment: - particularly the Computer Says "No" section at the bottom of the page.

I honestly don't know what you can do to prepare for an assessment. I was lucky that both of mine were in my home. But for my second assessment - when I'd included details of adaptations that had been fitted around the house - they didn't even look around.

Although it couldn't have been used in a tribunal, I'm glad we made an audio recording of the assessment. At the very least I could play it back to ensure that I hadn't misremembered what we actually did say when we were able to go through the tribunal papers - which included their notes from the assessments.

But even so, the things that we said were twisted, misrepresented, or flat-out ignored.

Maybe I was unlucky. But all signs would imply that this is par for the course.

6. Take it to the bridge… I mean, the tribunal

my ACTUAL tribunal papers
After an application, an assessment, and an unsuccessful Mandatory Reconsideration, now was the time to request a tribunal.

At this point the case was passed onto HM Courts & Tribunal Service. Shortly afterwards I received a huge wodge of papers - forms, assessment reports, and decision notices for BOTH of my applications. 185 pages in total.

Although they were two separate things, I think they did this to show the tribunal service that, "This person has applied and been assessed twice. In our opinion they are clearly taking the piss."

At the front of the pack there is an official response to the appeal from the DWP:
I've considered all the available evidence and considered which descriptors apply for each activity, taking into account Mr. Woodward's functional ability. This includes the activities Mr. Woodward has disputed and those which he hasn't. I agree with all descriptors included.

I oppose this appeal and ask the Tribunal to dismiss the appeal and confirm the Secretary of State's decision.
Now. This scared the bejeezus out of me when I read it.

But think about it - they can't very well receive the tribunal request, look over the application notes, then turn around and say, "Blimey, we got it wrong here. Sorry!"

So this is a standard bit of verbiage. Stay strong.

Obviously I never got to a tribunal [SPOILER ALERT] but it really was like an intense game of chicken - who was going to blink first?

7. Evidence, evidence, evidence

This is what turned it around for me when we were waiting for a tribunal date.

I saw my MS Nurse, showed her the DWP's refusal letters and we went through them point by point. She also did some physical tests. This whole appointment took about an hour.

She then went away and wrote a letter in support which included irrefutable evidence based on her knowledge of my condition over the years.

The whole report was less than a single side of A4.

And in the phone call to let me know that their decision had been reversed, the person I spoke to said that this bit of evidence was what turned it round.

So save yourself a lot of bother - if you're applying now, include a notes from one of your listed medical professionals, as long as it backs up the things you have said elsewhere.

Another reason to include this kind of thing in your application is because NOT ONE of the medical professionals I listed - three for the first application, seven for the second - were contacted.

Perhaps I should have allowed enough time to gather this kind of evidence before I applied - but then, you're only given a month to return your application and there are enough things to stress about.


Like I said at the top of the first article, I am no expert in this sort of thing. But at the very least my experience shows that a decision can be reversed.

It takes a lot of stress and anxiety, and it might very well lead you to want to just give up.

But I can't help but feel that this might be exactly what the DWP is counting on. Call me cynical.


Just for reference, these are the scores I achieved through my application process, and how they changed.

Application 1: 
0 points for Daily Living
4 points for Mobility
Unchanged after Mandatory Reconsideration

Application 2:
6 points for Daily Living
4 points for Mobility
Unchanged after Mandatory Reconsideration

Final decision (after supporting evidence from my MS Nurse - remember, this was A SINGLE SIDE OF A4):
9 points for Daily Living
12 points for Mobility

Tuesday, 26 June 2018

my PIP story pt.1

If you are applying for PIP, here are the main things I learned in almost 18 months spent in limbo-land.

Firstly I'm not an expert on Personal Independence Payment. If we look at the facts, I submitted two separate applications, both of which were turned down!

But I thought it might be useful for anyone going through the process to see all the steps I went through to get to my result.

At the very least it might show that, with a bit a massive amount of perseverence you can get the result you need.

1. It's not the same as Disability Living Allowance

I approached applying for PIP in much the same way as Disability Living Allowance. THIS WAS A MISTAKE. It really isn't the same beast and what was fine in the past (writing about you on your worst days) doesn't cut it anymore.

The really slippery buggers are the Yes / No / Sometimes multiple choice questions about issues you might have. And it's these which mean that the system is not a good fit for a fluctuating condition such as MS.

If you have to tick "Sometimes", what does that actually mean? A couple of days a week? Five out of seven? I'd say that if it's over 50% of the time there's a good case for just ticking "Yes".

2. Get an outside view

Ideally this would be someone who is not personally or emotionally invested. There may be an organisation near you which offers an advice service - Citizens Advice, MS Society local groups or Disability Direct will all be able to provide some support to people making claims.

One other great source of guidance and support is Benefit Advice Essentials - see their Facebook group and their website at

When application number one was turned down we worked with the Derbyshire Unemployed Workers Centre as they have a lot of experience of these sorts of cases.

They submitted a Mandatory Reconsideration for us and when it was knocked back, they went through my form. And advised me to apply again.

3. If at first you don't succeed...

As I mentioned at the time, the main reason I was advised to apply again was because a lot of things had changed between my application going in (January) and the decision being made (August). I couldn't include things like adaptations around the house or Cognitive behavioural therapy sessions in my appeals because they weren't on my original form.

Could I have informed the DWP in the interim? Yes, probably - but they might have asked me to apply again anyway.

I was lucky in that, between submitting my form in January and the Mandatory Consideration refusal in August, I was still getting DLA. Which meant that when I reapplied in September (and got a positive result in May this year), I effectively didn't lose any money.

However. It was undoubtedly touch and go, and I wouldn't recommend it as a way to achieving a positive mental attitude.

I worked up the second set of answers with our DUWC representative, then drafted up the form. THEN the representative went through the answers again before I filled in the form.

And he took a lot of it apart, showing where I could be said to have contradicted myself or undersold the problems I have.

I think this is something that a lot of people do, because the whole process is so difficult to get through psychologically. We naturally prefer to assert our independence and focus on the things we can do, because the other option is too depressing. And even if we prepare our application with a family member or a partner, it's difficult to expose or recognize those parts of our lives.

The DUWC representative asked some tough questions and I didn't like him for a lot of the process. But he explained that he wasn't even thinking that the form would get passed at the first attempt. He was helping me to write it with one eye on a tribunal.

By getting it watertight at this point I would be giving myself the best possible chance at a tribunal, where an independent panel would look at evidence from both sides. Following on from this...

4. Language is important

Again, you will feel more confident if you're sure that your answers are watertight. Does your answer for one question contradict what you have said elsewhere in the form? Could this be used to undermine your claim?

Filling in this form is a horrible thing to have to do. You are laying bare the worst parts of your lived experience. You may not want to acknowledge that the person you are writing about IS you.

Give yourself a good chunk of time - I ended up panicking and rushing mine.


Monday, 18 June 2018

no more drama

Last week was pretty trying.

To start, an appointment with my Neurologist, my first since my relapses last year.

I like him but I can’t help thinking he seems quite keen to rediagnose me as Secondary Progressive Multiple Sclerosis. Yes, I know this is how it goes for the vast majority of cases - is it still 80%? But this figure always makes me think of the following panel from Daniel Clowes' Art School Confidential story:

Clowes D, p.19 Eightball #7, Fantagraphic Books Inc, November 1991
We all think that we're in the 20% because anything else is too scary.

And I don't mean to offend anyone reading this who is already SPMS (or even PPMS). Neither am I so dim to not be aware that MS is progressive in nature in all of its flavours.

But having it in the name of your condition for the first time is going to be hard to take. So forgive me if I want to stall it for as long as possible.

Anyway, the stress of this appointment meant that neither myself or Mrs D slept at all well the night before.

To cut a long story short he was actually really pleased with how I'm getting on. As I think I mentioned before my first test for the JC virus was negative but I am now slightly positive.

Interestingly, although the JC titre [a new word for me too!] can go up and down, because I've gone from negative to positive I will always be counted as positive from now on.

But on the whole it was all good.

After that I had my birthday and a fairly dramatic infusion.

One other person on the ward had to be revived - I've not seen so many panicky medical professionals go behind the curtain around a hospital bed since Little Ms D’s birth.

A nurse - who looked really shaken up - asked if we wanted to be moved to another ward. But as I was nearly finished we decided not to bother.

The person eventually came round and was ok, by the way. At least that's what the nurses said anyway.

However it was still pretty unnerving to see her named on the ward list as a fellow Tysabri patient.

What is this crap I’m having pumped into my veins every four weeks?

Ne’ermind. See you next month!

Wednesday, 13 June 2018

writing in other places

I've been doing a bit more writing on recently. Here are links to some recent posts.

The Visible Man
Obviously this was prompted by the realisation that I no longer have an invisible disability, mostly due to an increasing acceptance of the role that the wheelchair has in my life.

Yeah, yeah, yeah, I know it's just another tool to help me live my life.

Still hate the thing, obviously.

The UK National Health Service
When we were in Philadelphia, I was amazed by the questions that people asked me about the NHS. I guess it's only to be expected when the moron in charge tweets such thick-headed things as this:

So I thought I'd put them straight. And writing that article made me immensely proud!

(It was also pretty eye-opening to talk to one single parent at HUconnexion18 who said that she frequently had to make a decision about whether to pay for her MS meds or feed her children)


One reason for this place-holder post (as opposed to the usual high-quality, well-informed guff I normally put out) is because I'm working on a big post about my experiences of the PIP application process.

Not in any way because I'm some sort of expert (two applications submitted, two applications turned down is quite the strike rate). But it could be helpful to anyone going through it now.

Thursday, 24 May 2018

PIP success!

And so ends the most stressful game of chicken I've ever played.

Yesterday I had a text message from the DWP which said they had received a written report of my PIP assessment. It took a good while to realise that this referred to a letter which my MS Nurse Kate had written – outlining all the ways in which my MS affects me.

This very morning I've just had a phone call from the DWP, saying that based on Kate's letter I am now entitled to PIP – Standard level award for the Daily Living component and Enhanced award for Mobility.

So completely overturning the outcomes of two seperate applications, two assessments and two Mandatory Reconsideration requests. And obviously halting the tribunal process.

This decision is based entirely on a one-page document written by somebody who has known the ins and outs of my health, almost since my diagnosis in 2005.

If the rationale for this ludicrous and invasive process is to save money (and not, y'know, to harass and victimise the vulnerable in society), here's a way it could be achieved.

Listen to the people who know the applicant.
The health professionals we are asked to include on our PIP forms.

It's not that complicated.

On my last application I included my Neurologist, MS Nurse, GP, Physiotherapist, Cognitive Behavioural Therapist and two further Community Physiotherapists. As far as I can tell, NOT ONE of them was contacted with regards to my application, despite including full contact details for all.

Seven medical professionals who could have filled in any gaps and confirmed (or denied) the details of my claim form, either verbally or in writing.

Following this a decision about whether a face-to-face assessment was required (or not) could've been made.

I'm not going to question the professionalism or otherwise of those carrying out the assessments. But the assessment should focus on checking the details of the application form and ensuring that nothing has been missed off – that is, if the point of the system is actually to give people the support to which they're entitled.

As far as I know the application process currently goes something like this:
  • Firstly, an application is made and submitted to the DWP.
  • Then an assessment is carried out (by a third party contractor) and the subsequent report is sent to the DWP.
  • Finally, a person at the DWP looks at both reports in isolation and comes to their decision.
It doesn't seem very joined up does it? At the very least, there's little consistency of contact.

As it is, applicants seem to be penalised for the Independence which is purportedly what the Personal Payment is for.

This is opposed to the previous Allowance doled out people Living with a Disability.

As rebranding goes it's a masterstroke of marketing, isn't it? A payment seems so much more positive (and less patronising) than an allowance.

If only people weren't being driven to despair and suicide by this damaging process. 

I know full well that I'm one of the lucky ones, with people supporting me and refusing to let me give up.

After the best part of a year it is such a relief. And proof that with persistence we should all get the settlements we're entitled to - IF we have the strength and can bear to go through with it.

If anyone is reading this and going through a PIP application at the moment, genuinely do get in touch if I can be of any support.

And don't let the bastards grind you down!

1. Bide your time... 2. Keep your nose clean... 3. Don't let the bastards grind you down.

Thursday, 17 May 2018

haunted foot

This week I had an appointment for FES (Functional Electrical Stimulation) at the local Gait and Movement Laboratory. It was the STRANGEST thing!

When I recently saw my MS nurse (in order to write a piece of evidence for my PIP tribunal), she carried out a few strength and mobility tests. On that basis, she felt that FES might be worth checking out to sort out my foot drop:

Functional electrical stimulation (FES) is a treatment that applies small electrical charges to a muscle that has become paralysed or weakened, due to damage in your brain or spinal cord. The electrical charge stimulates the muscle to make its usual movement. In MS it is mostly used as a treatment for foot drop, where disruptions in the nerve pathways between the legs and brain mean the front of your foot cannot be lifted to the correct angle when walking.
From the MS Trust website

So earlier this week I went along to my appointment. And it was completely bizarre.

After they'd watched me walk for a bit (AN ASIDE: why are these types of clinic so bloody far away from the car parks??), they attached two electrodes to my left leg (long time visitors will know that my left leg has traditionally been the main cause of my walking problems).

The electrodes are attached just below the knee where they can stimulate the nerve which goes to the muscle responsible for lifting the front of the foot. The electrodes are controlled by a switch which goes in your shoe - when your foot is lifted a charge is sent to the muscle which then lifts your foot, therefore preventing foot drop!

We had to spend a little time fine-tuning the charge and the position of the electrodes. When it was on my bone and directly on the nerve it was so intense and dramatic I was worried my foot might snap off! And it was undeniably weird to see my foot wildly lurching back and to the left of its own accord.

But eventually we seemed to hit the sweet spot - although I was a little disappointed that the nurse didn't get the reference when my foot had a particularly violent twitch and I asked if she'd turned it up to eleven.

I did a little more walking and the two people assessing me could see that it was helping - at first they'd thought I might need to have a set of electrodes on each leg. But almost immediately both legs were working better (although the muscles in my left leg were knackered - I don't think they've worked properly for years!).

We all agreed that it looked pretty positive for an initial test. So now I wait for them to get me back in for more tests, more fine-tuning and a fitting.

Monday, 14 May 2018

in between days

Tysabri infusions need to be administered four weeks (or more) apart. I've mentioned before that in the run up to my infusions I can start to feel a little bit wobblier. And this has been backed up by conversations I've had with MS nurses and other patients (mostly online).

Earlier this year we booked a much needed summer holiday. Because I'm that sort of loser (or just one who is organised), I realised that I would be due to have an infusion the day before our flight back.

As we'd booked so far in advance (a rarity for us), I spent a sleepless night in bed working out that if I had my infusions a day earlier each month I would be able to bring my dose forward a whole week by the time our holiday came round. Obviously I did not take the following facts into account:
  • The Tysabri clinics are only on Wednesday, Thursday and Friday
  • You must leave at least four weeks between infusions - you can't bring them any earlier
After letting me explain my drawn-out but impossible plan, the nurse explained that my only option was to add an extra week somewhere along the line.

I've been waiting for a month which offers the least disruption possible - avoiding the birthdays of both Mrs D and Little Ms D, in particular.

So the long-awaited month is now upon us!

I should have had my infusion last week. And now I’m trying not to chew my fingers off while I wait for my slot to come up in a bizarre, drug-free limbo.

I'm well aware that this has the potential (if you're an over-thinker - hi there!) to become a self-fulfilling prophecy of bad-vibes and relapsey symptoms.

But truth be told I'm feeling ok. I'm still swimming when I can and have started to use the Wii Fit again for the first time in ages. The balance games are particularly good and because I'm that kind of competitive wanker I was really pleased to achieve a new high score.

Oh yes, I'm all about Gamification - see also my unbroken 590 day run on the Calm meditation app.

But I am trying to take things a bit easier (and pushing myself a little less) in the run up to the infusion this week.

Plug me in, please!

the author awaiting his next infusion - honestly, he feels FINE...

Friday, 4 May 2018

life in the city can be so hard

Aside from griping about PIP (still waiting for my tribunal date), banging on about Philadelphia and HUconnexion18, I've recently been doing some really exciting work with an old friend.

He's a member of the Department of Social Services at Loughborough University and he got in touch to see if I would like to co-author an academic paper for an upcoming conference.

But wait a minute Steve, I hear you cry. What kind of Academic qualifications do you have, aside from an unwavering belief in the rightness of your opinions on music?


The conference is on DISCO and he wanted me to analyse some musical extracts as part of the paper. We've met up a few times to discuss our approach and he sent me some music.

does "independent scholar" just mean "opinionated git"?
And parts of my brain which have been dormant since I graduated with a borderline-useless degree in English and Music have woken up!

I've been analysing melodies and orchestration and putting forward my opinions about what they actually mean in conjunction with the lyrics.

It has been so cool to be working on this so I'm eternally grateful to John for getting in touch with me.

Even better, our paper has been accepted for the conference at the University of Sussex next month.

Sadly I won't be attending (these things are EXPENSIVE) but I think John will be much better at presenting our paper. I have been known to waffle, especially when nervous.

I'm hoping this will open an entirely new career for me - ideally involving lounging around and pontificating about music.

Maybe I'll eventually appear as a panel member on Front Row. Or (LIFE GOALS) as a talking head on a BBC Four music documentary!

We can but dream.

Friday, 20 April 2018

temporary skin art

I decided to treat myself to a bit of skin art for the summer months.

I've always known that I'm too indecisive to ever settle on a permanent design for a tattoo. So this kind of MS-specific temporary skin art is perfect for me. If I change my mind I know it'll be gone soon enough!

People ask if it's painful but the lucky thing about this kind of application is that you don't even know it's happening until it's done. So no need to worry about the discomfort in advance!

Rather than get it done at home I went to a new place for this one - I simply lost my footing and fell onto my Mother-in-law's kitchen cupboard.

The whole design is just over 3 inches wide. It's pretty abstract and the colour's already started to fade but I'm still really happy with it.

What d'you think?

Monday, 9 April 2018

from our own correspondent

Nearly two weeks since the end of HUConnexion18 - it all seems like a strange and beautiful dream now, that we did THAT and met so many awesome people.

There were some great moments and I really want to get these down and out of my head before too much time has passed.

God forbid that it could feel like I'm banging on about it even more than I am!

The first time I went to New York I was worried that the incessant "Have a nice day"s would be too much for my hard-won British cynicism to take. It turned out, I loved it - it seems fake in this country but to my surprise people genuinely seemed interested in other people's experiences and stories.

I've been writing for Health Union / for around five years now and it was great to finally meet people who I'd only communicated with by email (who were so amazingly welcoming and grateful that we'd made the journey). Similarly, the other contributors - just fantastically positive and proactive, regardless of how far down the road of their health "journey" they might have travelled.

There was one session which was all about the different communication needs of health communities. The bit that stood out for me (as the writer of a sporadically-popular blog that gets a tiny number of comments*) was that the people who visit a site and don't leave a comment actually read posts and can get the most benefit from them.

* because obviously, everything's ultimately all about me, right? Yeesh, what a loser...

This reminded me that community is what happens when you talk to someone (face-to-face, online, whatever) and the other person JUST GETS IT. And this also reminded me about how important that feeling was when I was first diagnosed. 

On the day we came home there was an AMAZING session led by Laura Hope-Gill, whose own late-onset deafness prompted her to focus on the healing power of what she calls Creative Nonfiction.

Her talk was about the fact that we all carry these stories with us, about our own tragedies and the trauma of our diagnosis. And these are important to us and the way we deal with the situation.

BUT we have the power to decide what form our story takes - it's not the only story we have to tell, so we shouldn't get stuck in a loop, endlessly writing and rewriting our trauma. I made a note of this quote from Laura's talk but not its author:
The bad news is you’re falling. The good news is, there is no bottom.
I LOVE that!

Laura also talked about the importance of listening properly to others' stories - the way she talked about it, when someone tells you their story it's really a privilege.

I know I'm guilty of responding immediately with a quick-fire, "Oh, I know, that's happened to me...", because I like to think it makes the speaker feel less alone. Key takeaway quote:
Self-disclosure, sometimes mistaken for mirroring, is not listening. It is a substitution of one's own for the other's experience.
All it does is shift the focus back onto you - it is not helpful.

One more quote from Laura's session:
The world will come to an end. But love and beauty will remain.
Heavy. But overwhelmingly positive.

Much like HUConnexions18 itself. And I've not even covered all of the sessions that well-and-truly squeegeed my third eye. I've already started planting seeds to ensure we get an invite to the next event in 2019.

And anyway, we also managed to do a bit of sight-seeing, as proved by this picture of me hanging out with Benjamin Franklin.

(Although I should've tucked my shirt in...)

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...