Showing posts with label venting. Show all posts
Showing posts with label venting. Show all posts

Thursday, 6 October 2022

was it something i said?

So last night I went to the pub with my brother. It's been a while since we\ve been able to meet up - and seeing as I am now fully vaxxed up (COVID and Flu), this seemed like the perfect opportunity.

He came over to where I live and because I was feeling a littlebit 'leggy', I decided that I would drive - we are responsible drivers, ok? Don't drink and drive.

Anyway - another reason that I drove was because my electric scooter (yes, there's a story to be told about that) lives in the back of our car. Not for any reason other than it would fill our house and the chances are, when I use it, I'll probably be in the car.

So we parked up nearby, assembled the scooter, and made our way into the pub (actually not the most accesible venue but we made it work). On arriving I saw an old friend from one of my previous freelance marketing jobs, sitting at a table with two people I ddn't know.

After saying hello, he held up his beer and said that he recommended that I try it. Now I'm a bit of a wimp when it comes to beer - I like a nice, light IPA (Indian Pale Ale). What he was recommending looked black and decidedly "heavy." 

Without thinking, I said "I'd better not, I'm driving." 

And as soon as I said it, I regretted it.

The table exploded as if I'd delivered the punchline to end all punchlines.

Because I was driving! But not in a car! I was driving a mobility scooter! You get it? It's funny 'cos it's true!

One person at the table then said the classic line, "Have you got a license for that?!"

It was all I could do to stop myself telling them all to fuck right off.

Look. I know that I'm possibly a little sensitive about this. A mobility scooter is something that I've fought against for a long time. I've only been out on it locally a handful of times, so I'm building my confidence up slowly.

More to the point, I understand that people get a little awkward around mobility aids and the people using them. So if they get a chance to make a weak joke to 'lighten the mood' they're going to grab it - especially if it's gifted to them by the person using said mobility aid.

But people, please!

Tuesday, 19 July 2022

an offer to the healthy but intolerant

I've had so many ideas about blogs to write over the last few months. Some frustrations, some positive experiences, some actual thoughts. 

But whenever I start to think about writing them down, the whole world turns to shit.

War in Ukraine, Boris bloody Johnson, loss of female bodily autonomy, the inexorable rise of the right on a global scale - the list of historically significant events just seems like it will never stop.

And now - in the week when  I genuinely intended to get some writing done - the world is actually on fire. I mean, I know that the theory of the heat death of the universe is a thing. I just never thought I'd be living through it.

And yet again, when the news sources talk about the potential loss of life, who's the last to get on the metaphorical lifeboats? Who's the redshirt?

Yes, it's the aged and those with underlying health conditions.

I mean, it's not as though COVID has ever gone away - over 200,000 dead in the UK, the last I checked. But also, clinging on like a stubborn piece of crap that refuses to shift from the toilet bowl, are the Deniers and the Right-To-Normal-Lifers.

You know, the ones who pop up all over the place to say that, if COVID is as bad as you think (200,000), us people with underlying health conditions should just stay indoors, cowering, while the people of real significance are allowed to go about their lives. They have a life to live, dammit!!

It's the same with the heat. Some wag has already made a crack that it's obviously the snowflakes who will melt in the summer sun. It's just summer! Go back to bed!

Well. You would have to be brain dead to not be worried by the current global fronts. Yes, the weather happens. But this is insane.

It reminds me of the oppressive heat when we were last on holiday in Venice - as an aside, I can't imagine getting into a flying test tube of germs anytime soon. But that weather was too much, even for Italy.

Now there are fires all over Europe so I think we're beyond the realm of regular summer, right?

Anyway, I have an offer for the NORMAL people out there in the UK.

Basically, we'll treat the country as a timeshare. One month on, one month off. Both groups will need to share Christmas, obviously, but I'd even let them have an extra winter month if that might appeal.

In their months they can roam around, maskless and vaccine-free, snogging and shaking hands with gay abandon, coughing in the face of understanding and decent citizenship. We'll leave you to it, as long as all the theatres and cinemas and sporting events are available to stream (because ACCESSIBILITY).

In our months, you can stay indoors. We'll have the choice to go out wearing our masks with pride, maintaining social distance, safe in the knowledge that we won't be called weak or pathetic and that those around us at least understand why we're being careful. 

What do you think?

Friday, 14 August 2020

National Trust and disabled access during COVID-19

This might come across a bit #middleclassproblem but stick with me.

We've been members of the National Trust for years. As parents of a young (and seemingly inexhaustible) child, we're always looking for ways to use up some of her energy. And getting out in the open air is good for us all.  

PLUS there is, at most properties, excellent parking, great toilet facilities and a place to get lunch and a decent cup of tea. Also, in our experience they really seem to "get" accessibility. 

We live pretty much smack bang in the middle of the country so we've got some great places to visit on our doorstep.  

Sudbury Hall can provide a buggy service from the car park to the property. A similar scheme at Calke Abbey can get you right the way across the whole property.

Our nearest National Trust site is Kedleston Hall, which you might recognise from The Duchess

On a visit earlier this year they provided an off-road wheelchair (which was like a regular one but with BMX bike tyres) that by all accounts was a lot easier to push on the short circular walk. It was certainly comfier than my own chair.

HOWEVER…

(You knew that was coming, right?)

We went to Kedleston last week. Obviously in the light of the Coronavirus pandemic, the hall isn't open and we had to book our slot to have a trip around the park and gardens. 

So far no biggie. Forward planning and preparation are the norm for us.

But when we asked if the off-road chairs were available, we were told no. We kind of expected it but afterwards we couldn't help wondering why?

Yes, we know about the pandemic and the bloody New Normal and all that. But...

Why is disabled access the first thing to go out the window? 

Is it too difficult to wipe things down between uses? Supermarkets seem able to do it.

We'd even be prepared to provide our own Flash wipes

*other antibacterial wipes are available

Like I say, we expected it. And to some extent we accepted it. 

But the edge was taken off our day. And it was exhausting. 

My chair is heavier to push so Mrs D was worn out. Because I knew she was struggling, I forced myself to walk more than I probably should have. Which was severely fatiguing, which in turn made my walking worse, which was distressing for my family to see. 

The worst thing is...

It's not just at Kedleston

The accessibility options at other local sites such as the ones I mentioned above are currently severely curtailed too.

It's enough to make me feel paranoid.

I've already talked about the fact that people with pre-existing conditions during this pandemic are like the red-shirted officers from the original series of Star Trek. We get it, we're disposable. If not a downright annoyance.

This article in today's Guardian by Frances Ryan notes the fact that, during lockdown, with working from home, cultural events and venues being accesible online...

It was frustrating and joyful, obvious and revelatory. The secret was out: the world could be accessible. Inequality was actually a choice.

But now that things are starting to open up, are those of us with access requirements just meant to stay indoors indefinitely? 

Now don't get me wrong. I know this is only the case with regards to our free time and doing things which could benefit our mental health. We should forget about doing THOSE. 

But if it's getting our butts back into work? 

Come out, come out wherever you are!

By the way, I know Judy G had some substance issues (that's putting it mildly), but the description to this clip is, "Dorothy is recognized as a heroin of Munchkin Land".

Dark times.

Thursday, 12 March 2020

social responsibility and hygiene

I started writing this post while sat in what should, by rights, be the safest space in the country. The infusion ward at my local hospital.

If basic hygiene isn't being followed in a room where people are receiving treatment for cancer and respiratory conditions, as well as MS, then we're all going to hell in a handcart.

There's no denying that it has been a weird couple of weeks. At present there doesn't seem to be much happening with Coronavirus in the U.K., apart from people washing their hands. I can't help feeling that a more complete shutdown is only around the corner [see last minute edit below].

I've had the dried and cracked hands of the excessive hand-washer ever since I started self-catheterising. Let's be honest, when you're putting a plastic tube up your junk, you definitely want to be sure that you've got clean hands.

If the only thing that comes out of the Coronavirus pandemic is that people finally get it into their heads that hygiene is for the general good... well, that might be a good thing. As Mrs D said earlier today, maybe people will start listening to actual experts. Imagine that!

I'm currently reading The Death of Truth by Michiko Kakutani. It's a couple of years old but one of its key points - that we're living in a time where every opinion or source of news is viewed as equally valid as the next - still holds true. It's like how racist politicians in the U.K. are regularly given a platform on mainstream TV and news to expound their toxic views because "that's just their opinion".

I'm only two chapters in but it's pretty striking how this sort of postmodern blanket validity, far from being some utopian libertarian ideal, actually plays into the hands of autocratic despots and fascists. Expert opinion can be simply ignored - see also climate change deniers, flat-earthers and anti-vaxxers.

Similar to the anti-vaxxers, I've heard some people saying that Coronavirus won't affect them because they're young with no underlying health conditions. I hope they learn before it's too late that these measures - vaccines, hand washing, self-isolation - only work if we all play along.

It's social responsibility. We all look out for each other. We all play our part.

[edit 12/03/2020 5.28pm] Despite saying that "More families, many more families, are going to lose loved ones before their time", the UK Prime Minister has just announced that he's going to do next to nothing. *slow hand clap*

Thursday, 12 December 2019

the boy in the bubble

Earlier this week marked the third anniversary since I left my previous job. It's pretty mad that it has been so long!

After only a short time I felt that I wouldn't be returning to full-time traditional employment.
It hasn't been easy - as regular visitors to this blog will know. I had to spend quite a long time navigating the benefits system and applying for jobs, on top of applying for PIP (twice) and having the mother all relapses.

It has been pretty trying - to put it mildly. And not just for me but my wider family, especially Mrs & Little Ms D.

However I really do feel that I've turned a corner. I'm working a lot at present and I hope it'll continue!

---
 
Obviously there's a really important election taking place today. The last ten years of democracy have been hugely disappointing for me. The Conservative and Lib Dem coalition. A narrow general election win for the Tories. Ten years of austerity. Brexit. Trump.

This might be the most important one yet. For the future of the NHS in particular.

Previously I've been suckered in by what I have seen on social media. I am well aware of the fact that we live in our own echo chambers.

My feeds are filled with people who think the same as me, the same as your own. But I'm trying not to let myself be tricked again.

A friend of mine from university has worked as a corporate lawyer and is a successful businesswoman. She has been clear about her intentions for this election which has been incredibly heartening to see. Just because you are well off doesn't mean you have to stop thinking about other people. And left-of-centre values are not necessarily anti-wealth.

She has been trying to engage with the opinions of others and recently asked the Tory voters on her feed if they could explain to her why they would be voting that way this time. It was a noble idea but people questioned her intention to understand the other sides' motives and got pretty defensive. And people started on about benefit scroungers, magic money trees and the like.

So after biting my tongue for a while I done wrote a thing:
Soapbox alert. I've been following various parts of this thread with great interest and increasing respect for Suzanne in trying to raise the level of debate on this issue.

I'm not interested in niceties or understanding the other side's point of view. I'm a supporter of the policies and values which are aligned with the Labour Party. I'll be voting for them.

I'm a self employed person with a disability. Being disabled is not a lifestyle choice, it's expensive. I've got first hand experience of negotiating the labyrinthine Kafka-esque nightmare of the austerity-era benefit system.

Ever tried applying for PIP? It's demoralising and utterly depressing. Being questioned and doubted in my own home, and being turned down for this benefit after previously having a lifetime award for DLA (SPOILER ALERT: It's a chronic illness, I'm not getting better) almost drove me to suicide.

And I'm one of the lucky ones who has a support network and whose first language is English. People who vote for the Conservative party are effectively saying that they do not care about me or the security of my family, or for anyone else in a similar position.

It's inhuman to assume that Labour policies will encourage people to sponge off the state. And it's arrogant beyond belief.

I was not born disabled, I was diagnosed with MS at the age of 32. This could happen to any of us.

I have continued to work and pay into the system which benefits us all. There but for the grace of god and all that. Look outside your window sometime.
My preference is clear but I don't really care who you vote for. This version of democracy is the only one we've got and I stand by it.

And party allegiances aside, I hope that whoever gets in can do something to stop the UK being so utterly divided.

See you on the other side!

Wednesday, 31 July 2019

scenes from the waiting room

Or "What is up with people?"

I wrote this a while ago but I'm publishing it here because I have a couple of hospital appointments coming up over the next week. I hope posting it will mean I can avoid the sort of person I talk about below!

At the hospital for a Tysabri infusion earlier this year there was a guy sitting next to me who was having a loud phone conversation about how shit his life is. About how progressive his MS is and how few options there were for managing his condition.

But he didn't do it in a self-pityingly morose way. It was like he was bragging about how hard he had it. Like the chronic illness version of Monty Python's Four Yorkshiremen sketch.

I get that this might have been some kind of coping mechanism. But surely that kind of chat should be reserved for home. Or the pub. Not in a room full of people, presumably with the same condition, who are battling those same persistent thoughts about progression and increasing disability and decreasing life options.

Maybe it's just me.

But there were a couple of young people on the ward that day. Maybe they were recently diagnosed? And they looked shit scared.

Bet that didn't help.

Shortly afterwards I saw an older guy giving himself an ulcer by stressing about how the busy nurses were ignoring him and seeing other patients before him. Which obviously didn't make them see him any quicker.

I mentioned this kind of thing to a nurse when I was getting a blood test recently. I said that surely this kind of thing never happened to her.

She said you'd be surprised how much mouth she gets from patients - about waiting times or the environment in the clinic - immediately before she sticks a needle into their arm. You would think they would check their attitude before confronting a nurse who has the power to make them very uncomfortable indeed.

I try to be a nice patient - especially when having a blood test - so the worst I get is a nurse who jokes that it's her first day on the job. This happens pretty regularly.

I always think it's pretty obvious that those who are disrespectful towards the people who are there to help them - nurses, hospitality staff, shop workers - have never worked in the service industry.

Talking about this with some box office staff at the Arts Centre where I was based earlier this year, one of them proposed a new type of National Service. One where people have to do 6 months to a year working in the service industry. Or what is sometimes called a McJob.

I think that overall levels of empathy would only be increased if this was brought in.

seems legit

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... 

Tuesday, 13 February 2018

the father of a PIP applicant speaks

When I'm writing this blog it's a very self-centered thing,  a way for me to sort out all the thoughts in my head and log my experiences and problems. If we're lucky then we'll have people around us who are also going through these tribulations alongside us.

A few weeks ago my Dad said that he had something he wanted to write. Here it is. 


History Repeating Itself or What Goes Around Comes Around?

My wife says nobody will wade through the potted history bit to get to the point I'm trying to make, I hope she's wrong! Here goes...

Before World War Two Germany was in dire financial straits. The powers-that-be decided they needed a scapegoat and decided on the Jews and all others they deemed a burden on the economy and society. During the war these same people came up with "The Final Solution" and subsequently handed the implementation of this policy to the SS.

With ice-cold logic the SS realised they could achieve their objectives more efficiently by utilising some of the inmates to organise the low level day-to-day running of their concentration camps. These inmates, known as Kapos, were often more brutal than the SS in the treatment of their fellow inmates. They were rewarded for their efforts with better food, accommodation and the removal of the fear of torture and death.

As the war progressed it became apparent, to the people at the top, things were not going to end well. Many started to distance themselves from the "The Final Solution", claiming it was not what they had intended and denying all knowledge of the death camps. The SS, realising they were in the frame for blame, again utilised their ice-cold logic. They came up with the now infamous mantra, "We were only obeying orders".

Well, that's all right then!

At the closing of the camps the Kapos gathered together expecting to be rewarded with freedom and congratulated on a job well done.

Consequently, their masters executed them. The SS regarded them with even more contempt than the other prisoners.

So much for old history.

Fast forward to the beginning of the 21st century. With the global financial crisis, the UK finds itself in dire financial straits. Austerity becomes the buzzword and the powers-that-be need scapegoats. I know what we can do! We'll use the same old reliable fall guys. Lets blame all our woes on the immigrants and the "liabilities" who depend on our inflated welfare budget.

Who are least able to defend themselves and least likely to kick up a stink if we attack them? You've got it! The people on welfare and the sick on disability allowance.

We have a solution. We'll get rid of Disability Living Allowance (DLA) and replace it with a policy that is so difficult to qualify for, that many claimants will just give up when faced with its complexity. Some may even die before they get a result. We’ll rebrand it to placate the general population and we’ll call it Personal Independence Payment (PIP). Makes it sound like we are actually helping people.

RESULT!

The DWP can implement this new policy. They have the organisation to carry it out. With their faceless upper echelon, all they have to do is gather the data and make judgements from on high. No need to meet the claimants. No need for empathy. No need for sympathy. That’s pretty cool logic if you ask me.

How are we going to get all the data from the claimants? Easy. We’ll "out source" it (another new buzz word. It means palm it off) to organisations like ATOS. They can train people in 6 weeks, who are ten deemed qualified to make judgements and write reports on people they've met only once. It won't matter what kind of disability they have, or what their personal circumstances are. We have a one-size-fits-all qualifying criteria.

Anyway, ATOS are incentivised. The more claimants that fail to qualify for PIP, the better ATOS will be regarded and rewarded.

We are present day now.
PIP is failing, as indicated in the news recently that all claimants dismissed with mental health issues must now be reassessed. The original instigators of PIP are wringing their hands claiming it was not implemented as they intended and recriminations are in the offing.

The DWP will not doubt say they were only following instructions when some of their judgements are reexamined.

As for organisations like ATOS, no, they won't be taken out and shot. However, for the many times they have misinterpreted and misrepresented the claimants they have interviewed they should hang their heads in shame.

I'm not saying the government are Nazis, or the DWP are as ruthless as the SS, or that ATOS are as craven as the Kapos. But the similarities in the modus operandi are frighteningly similar

Just for the record this is not the ranting of some raving Corbinista. Just a political middle of the road father who has no truck with extremists of any persuasion.

I'm just in the unfortunate position of watching my once confident and proud son become embroiled in a vindictive and unforgiving system that is denying him financial assistance that he never envisaged needing. This policy is destroying, both mentally and physically, the most venerable and need-worthy in or society.

I am not so naive as to expect life to be fair. Or to think nice things always happen to nice people in the end. Or even that justice and right will always prevail.

But one thing history has shown is that eventually, for all injustices committed, someone has always been found accountable and the truth eventually comes out.

Friday, 9 February 2018

tempting fate

Plot Spoiler Warning! This blog discusses a recent episode of Inside No. 9
image from "Tempting Fate" from Inside No, 9
As anyone with even a passing knowledge of this blog will know I have long been a fan of the work of The League of Gentlemen. Two of The League - Reece Shearsmith and Steve Pemberton - have in recent years created a series called Inside No. 9, which to my mind is even better than their first TV show.

In a lot of ways it's kind of like a more horrific version of Tales of the Unexpected - a lot of the shows have unexpected twists in them but there is also still a lot of their trademark dark comedy.

On a number of occasions the twist at the end of an episode has reduced me to tears - the classic episode 12 Days of Christine and the more recent Bernie Clifton's Dressing Room being amongst the shows that immediately spring to mind. When they avoid relying on shock twist endings, they can create some incredibly moving mini-plays.

Maybe it's to be expected when each episode is a self-contained half-hour playlet but unfortunately they don’t always hit the mark.

The last episode of the current series, Tempting Fate, particularly stuck in my craw. This told a story of three council contractors as they attempted to clear the flat of a dead hoarder. At one point it was revealed that one of the characters - played by Steve Pemberton - had a tragic home life, having a young, wheelchair-bound son (Charlie) with MS. This was introduced in a particularly clunky manner, with the youngest council worker mistaking it for M&S - har de har har.

Eventually a large amount of money is found in the flat, with an inevitable confrontation about who should have it. In the struggle Steve Pemberton's character says that the money is a godsend as it would "pay for Charlie's operation".

Which made me and Mrs D shout out, "WHAT OPERATION?!"

The whole thing just ended up making MS the laziest of all plot devices. It was as though they just grabbed a medical condition off the shelf and didn't look into it any further - "Oh, MS will do. It's all basically to do with wheelchairs, isn't it?"

It was so disappointing! A feeling only added to when Charlie appeared towards the end, saying "Look daddy, I can walk!"

I know that Inside No 9 didn’t set out to make a definitive portrayal of MS and I might not have noticed (or been so sensitive about it) had I not had a vested interest.

I guess it's like the worst thing your parents can ever say to you - "I'm not mad with you, just disappointed".

But a previous episode (Series 3's Empty Orchestra) featured a deaf character (and performer) who wasn't simply viewed as someone tragic to be pitied. In fact, in the final scenes of Empty Orchestra, she ended up putting her bullies in their places and even bagging her (hearing) man.

I just think it would just be nice if they could handle potentially sensitive plot and character devices with that level of thought.

Monday, 29 September 2014

biting the hand that feeds

Long-time visitors will know that I am a bit of an arse and as such I have a number of pet-peeves – including but in no way limited to:
  • People who moan all the bloody time [a bit rich, Mr Domino?]
  • The bloody Spoon Theory
  • Inspirational aphorisms  - “I have MS but it doesn't have me” (oh really? Is this on day two or day three of your steroid infusion?)
This week, I've hilariously added the MS Society to the list...

I fully appreciate that the charity obviously does a huge amount of good work for people like me who have been landed with this crappy condition. But sometimes I do get cross with them.

The other day we received a copy of their Christmas catalogue and there were a number of items sporting the slogan, "I'm not drunk, I have MS".

I admit – in the early days of my diagnosis, I might have had a bit of a rueful chuckle at that. But now it just gets my back up.

By linking being drunk (a potentially pleasant experience which doesn't last forever) with MS (deeply unpleasant at times, no cure at present) are we not belittling ourselves and the condition we struggle with on a daily basis? Some people could see this slogan and think that, if being drunk and having MS are so easily confused and interchangeable – even on the most basic level – well, what's the big deal?

So far so nit-picky.

But my real problem with it is that as a statement it's arsey and juvenile – and not a little confrontational. Yes, some people need educating and they shouldn’t jump to conclusions about people's situations – but is being so "in-their-face" all that useful?

It links to my thoughts about moaning above – like the Sp*on The*ry, this kind of thing just makes us look all whiny, complainy and weak. And speaking personally, if I'm talking to someone and they try to lay something on me in a similar fashion, nine times out of ten I'll make my excuses and avoid them.

I get that this kind of thing could spark a conversation which could allow us to advocate for our condition – but the slogan is on items in a Christmas catalogue. If I presented them to (for example) my mum or even work colleagues, they would think (with some justification), "oh God, Steve's banging on about his MS again – does he really think we've forgotten? We know. We wish we could do something about it."

On the whole, the people who will see this statement (on a T-shirt or a pint glass) are already on our side – we're preaching to the choir, to the people who already have our back. 

It's not as if a t-shirt is going to alter the perception of someone who makes a daft comment when we're staggering down the street – that level of education is somewhat bigger than a bottle opener. And yes I know the conversation has to start somewhere, but is this really as sophisticated as our argument gets?

I'm really not trying to pick a fight with an organisation which does so much good. But I've seen the kind-of passive-aggressive attitude implied by this slogan a bit too much in the MS community over the years. People who almost rear up to offload their symptoms in the opening rounds of a game of Disability Bingo, scoring points when they find out that I still work full-time.

And I'm not denying the cathartic power of this phrase when we're feeling a bit crappy - but on a t-shirt? As a major campaign slogan for (arguably) the leading MS charity in the UK?

One final point which my wife made - if someone is walking down the street and their gait is so poor that they look inebriated, maybe they should be using a walking stick? Or some other kind of mobility aid?

I've talked on here in the past about my initial problems with using my stick. Maybe the MS Society's time might be better spent destigmatising (certainly amongst younger people with MS) the use of sticks / walkers / wheelchairs.

FINALLY finally, here are a couple of alternative slogans – feel free to appropriate!
  • Myelin, Mai Tai… Your round [needs more work but shows promise]
  • I am drunk AND I have MS! [probably my favourite - especially if it says Let's Party! on the back]
  • I have a chronic neurological condition, therefore I drink [a bit long for a t-shirt – maybe a scarf?
And of course, my old favourite - I have MS (it is what it is)

Thursday, 3 April 2014

social mobility, where art thou?

So the ongoing saga of 'Steve Getting to Work' has taken a new turn recently.

I've continued to walk in occasionally but sometimes it's just not going to happen (we all have those days) so I'll take my car and park across the road for my designated 3 (and a bit...) hours.Then I'll nip out for lunch, come back and park for the afternoon.

This can be particularly useful on days when I have meetings around the city - it's bad enough going to meetings without worrying about being a stumbling, sweaty mess (or worse) when I get there.

The sign at the top of this post appeared in all Derby city council-run car parks at the start of March. I've known this was coming for a while, from about the time that I had to pay for my three-year Blue Disabled Persons Parking badge - £10 for free parking is a pretty good deal.

But no more.

I called the number which trumpeted 'discounted season tickets' - and it isn't even a season ticket.

It's a (free) card which you can flash at the ticket machine which gets you 20% off your parking.

(Annoyingly to get this, you need to take your current Blue Badge to a different car park, which has never offered free parking for disabled drivers - or you could display your Blue Badge and park in the disabled bay across the road - but then you need to take in your Blue Badge to get the discount card... )

Okay here comes the Maths:
  • A regular 12-month season ticket for my chosen car park is £830.
  • The all-day parking charge is set to rise to £7.10 - with my 20% discount, this would mean a daily cost of £5.68
  • Daily charge times five-days a week for 48 weeks(ish) makes a rough annual cost of £1,363.20
So obviously a regular season ticket is a good deal.

But why advertise discounted season tickets when they don't exist?

I've always had a problem with people who view Accessible Car Parking schemes as some kind of perk which we are lucky to enjoy (some visitors may remember this from a closed-group on LinkedIn a while back).

As I wrote on the MultipleSclerosis.net blog earlier this year;
I think of [Accessible Parking] more as a LEVELLING OF THE PLAYING FIELD.

For example, if somebody without a health condition like MS wants to go shopping, and they live close to the city centre (as I do), they have a couple of transport options – they can drive or walk in. If I tried to walk to the shops, I’d be exhausted before I’d even begun to start complaining about having to go shopping.
My Blue Badge is still a total life-saver and I can still park on the street at various places around Derby - but walking in to work is going to have to be the favoured option while we're still living in the city.

Has anyone reading this had a similar situation where they are?

Friday, 31 January 2014

your call is very important to us

Earlier this week I was called at home by someone doing some research on behalf of the MS Society. They wanted to get some feedback about various services that I'd accessed.

Now obviously I'm DOWN WITH THE CAUSE. But they called at half-past six. I'd not long come back from work, my parents had just brought Evie home after looking after her all day, and we were in wind-down before wine-time mode.

So I asked if they could call back. They said fine.

At half-past six the following night they called again, right in the middle of the wind-down once more.

I explained that I'd been through this the night before and that I'm more than happy to do any survey for the MS Society, but could they email the questions to me?

No, it had to be done over the phone.

I explained to the (perfectly lovely) caller that this wasn't ever going to be a good time of the day to speak. Work, child, etc.

It's (mostly) a finely-tuned machine (sometimes). 

So she said (again, she was perfectly lovely about it), "Ok, I'll call you in the morning".

To which I replied, "But I'll be AT WORK". 

I'm probably being insanely over-sensitive. And I know the society published findings which said that “It is estimated that between 23 and 32 per cent of people with MS are in employment”- so basically only a quarter of us are still in any kind of work. 

But still it saddened me that the person calling - on behalf of the MS Society (not from them) - would make the assumption that, if a person has MS and they're talking about work, there's NO WAY that work will be full-time. 

I've been a bad mood about this ever since - if this is the attitude of people working in the name of one of the biggest MS charities in the UK, will the fact that people with MS don't feel able to remain in employment become a self-perpetuating prophecy?

People who are newly diagnosed could read these figures and go, "OK then, I might as well give up now". And I do appreciate that some people have a considerably greater level of disability than I do currently.

But still, it's not THEIR FAULT that they're disabled. 

What is society going to do to make them feel that they have a RIGHT to contribute and be fulfilled, doing whatever it is they want to do? * 

In my head I keep going back to the different models of disability - it's not the individual's fault, it's the Disabling World. 

(* the irony is that I HATE work, have never a had a completely fulfilling job, and would happily jack it all in tomorrow if my numbers came up. But still... Raah!!) 

I'll stop working when they stop issuing plush anniversary box-sets of key musical-texts of my young adult life - it's not going to buy itself now, is it?

Thursday, 16 January 2014

the art of peer pressure

You'll be pleased to know that I don't believe in New Year's Resolutions – so I can’t make one of them "blog more regularly"...

Anyhoo, how've you been? Good I hope. Here's the headlines:

Christmas (remember that??) was great – we've finally got our head's round managing the time we spend with our (lovely) families at Christmas – they just want to see Evie but we need to keep her in a bit of a routine for our own sanity. I think we got it right this year, and had some lovely days out just the three of us.

The image above is from one of my favourite days, when we had a lovely walk around nearby Kedleston Hall (20mins drive away from us).

[section removed]

Now a little confession - for one reason or another, I've been neglecting to make the walk into work recently. We're still going for walks as a family at the weekend but long-time visitors may remember what a big deal I made about this seemingly simple aspect of my day last year.

I'm determined to get back onto it ( however it is difficult to get motivated when you've had a disturbed and stressful night's sleep) so this another one of those things where I publish a blog in the hope that it will kick me up the arse and get me to stop making excuses.

I will walk into work before the end of this week - it's strange how terrifying it is for me to type it!

But on the day after a study finds short bouts of moderately intense activity can have a big impact on tiredness levels of people with MS (which let's face it, we all know anyway), what have I got to lose?

On top of the short burst of "Yogo" I do with Evie in the morning (she's surprisingly persuasive), I'll be Supersonic by year-end.

(But still, NOT a resolution).

Wednesday, 4 December 2013

all fun and games until someone loses their mind

So we've all had a good old snigger and giggle about the Oldest Swingers In Town, who - if you need reminding - are now a couple, living in the houses which are either side of us.

Oh, they get drunk and flirt, and have brutish (if short-lived) sex! How very hilarious!!

Well, things have taken a turn for the more serious - last weekend we had to call out the City Council's Noise Pollution Control people on a Saturday night because of RIDICULOUSLY LOUD MUSIC from Her at 1am. Although the music stopped as the council people showed up, they did hear it as they got out of the car, so the following week they wrote to our neighbour informing her that a complaint had been made.

Which is why it was so surprising to have to call the council again last weekend - are they really that stupid or are they just incredibly vindictive? Again, the music stopped as the council pulled up outside.

Our neighbours know that we have a toddler and they know about my MS. Furthermore, I've been explicit with Him about the fact that, if I have a bad night's sleep, my level of disability dramatically increases on the following day.

Basically, they might be having a laugh but they're genuinely harming my health.

So why would they continue to do this, unless they just really don't give a shit?

This last weekend we have set up a bed in our downstairs study and have continued to sleep down there - it's pretty cosy but at least we're both sleeping well.

(DON'T WORRY: Obviously the monitor linked to our Daughter's bedroom is cranked up super-loud when we're downstairs)

My wife and I have been irritable and snappy with each other. And we're starting to hate living in our house because the late-night discos are continuing most days - now with additional shouting .

Rubbish.

Meanwhile, in other news, I FRICKING LOVE THE INTERWEBZ.

From when I was growing up, one of my favourite bands ever has been Throwing Muses. They were on the 4AD label and toured the UK with Pixies in the 80s.

Obviously Pixies went on to become this big (you could say "Gigantic"... but don't) culturally significant thing, while Throwing Muses continued to plough a lonely furrow - possibly because they were a three-quarters female rock band in a predominantly male scene, mostly because they were writing joyously gnarly and twisted art-rock songs which depicted the internal world of Kristin Hersh, a teenage single mother who had bi-polar episodes leading to at least one suicide attempt before the age of 20.

Sounds like fun, huh?

Well, I LOVED them - the songs were constantly changing gears, so clever and inventive and not like anything I'd ever heard before. Wherever I went after that I always carried with me a C-90 cassette tape with Surfer Rosa on one side and House Tornado on the other - that's a stone-cold STEVEDOMINO FACT.



Anyway, Kristin Hersh continues to be a force for good in the universe, so she's one of the 'famous-ish people' I follow on Twitter.

The other day she posted a funny little statement and I responded - in what I thought was a charming and witty manner:


She must have agreed because she FAVORITED my tweet (that should be "favourited" obviously, but we'll let it go for the sake of Twitter).

Obviously I kept my reaction super-cool:


And I got a LOL (and a kiss and a hug) from one of my true musical heroes - it was a good day.

Made even better when my first blog for MultipleSclerosis.net was published later that evening. This is something which the legendary Jackie Zimmerman had put me up for, and even though it's an American site, they liked my stuff enough to let me have a play.

My first post is called The Anniversary Waltz.

Be not afeared: posts to this blog will continue in their own irregulary lackadaisical fashion.

Friday, 6 September 2013

damn fine

When two separate evens occur simultaneously pertaining to the same object in enquiry we must always pay strict attention.
- Dale Cooper 

God, I loved Twin Peaks - in the UK it was broadcast on Tuesday nights and I always remember that every Wednesday we'd all pile on to the college bus saying "did you see it? what did THAT mean? what did THIS line mean??" Excellent music, too.

Happy days - anyway, there is a reason why the above quote popped into my head.

Where we live, we have two neighbours - they're both (fairly young) grandparents and they live alone. A couple of weeks back, in the intense heat, they got together to sunbathe and to indulge in some pretty  high-octane flirting.

Now I'll stop you right there! I have no problem with older people flirting and getting jiggy - it was just that they were so awkward and plus they got HEROICALLY drunk while they were doing it. They could've been the youngest, buffest, most beautiful people in the world but still, there's nothing worse than hearing drunk people of any age trying to cop off with each other.

Anyway, we don't judge. And even though we have a child, we're not like Grandma Moses or anything - we don't mind a bit of noise, it's only natural. But the walls are thin and there have been a couple of occasions when it has gotten ridiculous.

CASE IN POINT: earlier this week - on WEDNESDAY (the international party night), they were playing music ridiculously loud to the early hours. They stopped when we banged on the walls (and no-one likes doing that, do they?) but I'm struggling to stay focused at work as it is (as you can tell by the fact that I'm typing this at 4pm on a Friday...).


But the lack of sleep turned me into a basket case the following day and my legs get incredibly immovable when I've had a stressful night.


Aside from anything else they both know about my health and have seen our daughter - so they know what we're dealing with. With all that, their selfishness was the most upsetting thing about it.

So imagine my surprise when I saw this article in my Twitter feed, about how sleep plays a key role in the production and repair of Myelin.
"Disturbed sleep may aggravate perhaps the symptoms of [Multiple Sclerosis], in a vicious cycle"
Now it's not rocket science that rest and recuperation can play a part in maintaining our health and it's a particular type of sleep that seems to be the most beneficial but still, it's interesting so I thought I would share with you.

Monday, 19 August 2013

why do we do it to ourselves?

The original title for this blog post was going to be:

Fuck, fuck, fuckety-fuck

So the last couple of weeks has seen me applying for a job for the first time in six years. No real reason, I'm fairly happy where I am currently, just something came up so I thought, what the hey?

Which means that the last couple of weeks I've been reminded what a MASSIVE PAIN IN THE ARSE it is applying for jobs.

First up, there's the application form. If you're like me, you'll agonise over every phrase, even before you get to choosing your referees. And don't get me started on the covering letter / email.

Maybe you get an interview, which is where the real fun starts. Especially if you have to prepare some kind of bloody task or presentation.

So yeah, that's where I've been the last fortnight. And because I'm talking about the arts, there's a ridiculously short turnaround.

For example, last week I was told I had an interview, which I had on Friday - including a presentation which I had to prepare.

No big deal but - to be honest - I was pretty dim as far as managing my energy was concerned in the run up. I had a late night at work on Wednesday, after which I needed to get my shit in order.

Which is why on Thursday I was convinced that I was having a relapse - I lost control of my legs and couldn't control my hands with any kind of precision.

This turned out to be very similar to the mini-relapse I had a few months back. After a good night's sleep, and a fairly low-stress and lazy morning, I went along to my interview.

In a new suit, if I say so myself, I looked the nazz.

With everything else that was going on, I didn't have as much time to prepare as I would've liked - which is why I'm unsurprised (but obviously disappointed) to report that I got an email over the weekend saying that the panel won't be taking my application further.

Why am I sharing this with you?

Job interviews are a MASSIVE PAIN IN THE ARSE anyway, regardless of our particular health issues. And I didn't honestly think I'd got the job - rerunning the interview in my internal insomniac cinema, there were too many, "ooh, I should've said THAT"s.

Don't get me wrong, there were some answers I was really pleased with. But still.

I dunno - I'm just kind of wondering where I go to next. Will I ever have another successful job interview?

Whatever. I'm not in any great rush to work somewhere else, and it's a luxury to be applying for jobs when you HAVE a job. And I DID get the interview.

But I'm still pretty pissed off that I put my family through the last few weeks - not only the application and preparing the presentation, but the touch-and-go of whether I was going to get to the interview.

In conclusion:
MASSIVE PAIN IN THE ARSE

Bah.

Thursday, 13 June 2013

don't want to be one of THOSE moaning MS bloggers but...

... HOLY SHITBALLS, I'M FECKING EXHAUSTED.

(OK, that's out of my system)

It's the last few days of my 30s. I'm not TOO bothered about turning 40 - my wife would be only too happy to say that I'm almost perpetually grumpy so I'm already well into old fart territory.

We all need a role model
My 30s have been pretty tumultuous - like most people, I guess:
  • in my 30th year I ended a relationship (which involved selling a house and moving back into my parents' house. Luckily they're amazing people so this was actually a great time for me! I just wish I'd saved more money in this period. Anyway...)
  • I also started a relationship with the woman who would eventually become my wife
  • I was diagnosed with MS
  • I was made redundant from my job - a year after diagnosis (unconnected) and two months before I got married. I never stopped working, doing some freelance *stuff* before getting my current role as a fully paid-up member of the local CULTURAL ELITE.
  • Bought another house
  • Became a father
There have been other milestones but these are the key headlines!

---

So remember here when I was being a little snarky about Merck Serono and their MySupport swanky magazine/app? Well, there's a (small) portion of Humble Pie coming up.

The other night I'd just done my Rebif injection when the machine just shut down. Kaput. No light's on, no-one home.

I called the MySupport line and left a message (for some reason I was very late doing my injection - probably some wild party or gallery opening... *ahem*). The next day they called me up, and yesterday I got my replacement machine.

Nice one.

ALSO - Flicking through my latest MySupport magazine, I came across an article about MS-related Cognitive issues.

It was full of all kinds of hints and tips (writing lists? CHECK. Putting keys in a designated place? Hmm... I'm working on it) but the bit that really struck was a pull-out box which said:
Knowing that we might develop memory problems can sometimes make us more aware of every little lapse, but try not to worry - we all forget things sometimes! 
Not rocket science, but it really got me thinking - which came first, the Cog-Fog or the expectation that you will suffer from Cog-Fog?

Similarly, which was first, my bladder issues, or reading about the link between MS and bladder issues?

I'm not disputing that there's a link - but by focusing my MIND on the potential issues, have I almost created the problem before it was due?

By reading all these MS blogs and going, "wow I've got THAT symptom, that makes me feel less like a freak.... but I haven't got THAT symptom... yet... which concerns me", are we convincing ourselves of the problems which may or may not be "in the post" before we necessarily need to?

I'd be interested to hear your thoughts - as I said, I'm not disputing that there's a link between MS and *SYMPTOM Y*.

And as usual I don't really know where I going with this. At the very least it's some kind of weird Audience Development project - "don't read this, it's bad for your health" or something.

Well played, Merck Serono - you've won this time. But I'm still watching you!

Tuesday, 20 November 2012

from the (not that) sick bed

We'll try that again - seeing as the new-and-improved Blogger app just lost my long draft!

TWICE!!


So I'm at home on a sick half-day off work - no biggie, just a stinky cold which has been bubbling under for a week and which refuses to shift.

incidentally, the only good thing was the husky voice which developed over last weekend - in my head I was convinced I sounded like Tom Waits / Lee Hazelwood / Johnny Cash, until a colleague said I sounded like a Muppet. Which is obviously even better. Anyway...

So I'm trying to do the thing that I always say to people when they NOBLY come into work when they should really be at home in bed. Plus I haven't updated this blog for ages because real life keeps getting in the way.

First up, many thanks to all the people who either tweeted or left a comment on the last post - the one where I was debating whether to get involved with another round of LinkedIn-fisticuffs.

Pretty much everyone was of the opinion that I should wade in. It's good to know that if we'd known each other at school you'd all be offering to hold my coat, rather than holding me back to prevent another humiliating beat-down. Cheers.

Anyway, I DIDN'T post my response.

I know, what a sell-out. But it comes down to what I've said before, about picking yr battles and managing your stress levels.

Bear in mind that, by the point I published that post, I'd been running it over in my head for a couple of weeks - not really very good Fatigue Management, or a very good advertisement for CBT. Needless to say, my therapist wasn't very impressed with me.

Yes, I could have got involved further but would I have altered the opinions of the two guys involved? Or would I have just become another MOANING DIS-BO who complains while abusing parking along with all our other wonderful "perks"?

And anyway, I'd got it off my chest by sharing it on here with you. Thanks for listening.

Sorry that I wussed out, as opposed to STICKING IT TO THE NORMALS. I promise that - when it's a fight worth fighting - I won't bend so readily.

Hey - who wants to know which UK performing arts centre employs one of these jokers in a fairly senior role?

What??! I never said I was big OR clever, did I?

Thursday, 25 October 2012

once more unto the breach..?

So I eventually received a response to my LinkedIn fury from the other week.

Actually, I got a response over a week ago - since then I've been slowly chewing over my options.

First up, I got this response who from the guy that prompted my initial message (hereafter known as Mr Reasonable):

Steve, would that the person in this instance behaved exactly as you do, articulating your needs in response to a particular situation to enable a service provider to ensure that one is able to enjoy equality of access to a service. As you say in this instance, no opportunity to understand how one might offer a service was offered, only a citation of the DDA which could only be addressed by immediately granting tickets ahead of everyone else. We have mechanisms in place to respond positively in precisely the situations that you personally describe but were never given the chance. Reasonable?


Fair enough I thought (but I don't really get why this comment gets 'thumbs' - what gives? No 'thumb-love' for the righteously-peeved disabled person?)

Anyway, a couple of minutes later, this appeared:


Sadly as in other aspects of life there are many who abuse disabled access, Birmingham NEC has introduced charges for disabled parking for this reason. The other night I attended the cinema and watched a middle age couple park in the nearest disabled parking bay, place a disabled badge in the wind screen before rushing away up a stopped esculator, I assume abusing use of non present elderly relative/child parent badge?


Gaah! Just When I Thought I Was Out, They Pull Me Back In!

So this is where we are – I’m weighing up whether I really need to get myself embroiled in this.

Below is the response that I would send if YOU, DEAR READER deem this to be a sensible use of my time:

Matthew - yes that sounds reasonable.

But as we're all – in one way or another – working in Customer-facing environments, and as some of us may also be publicly-funded, my issue was with the language you used in this group - which implied an attitude and a lack of awareness that was unfortunately mirrored in Roger's subsequent comment.

OK

I know this is a closed forum but (ta-daah!) I’m a disabled Marketing Professional and I'M reading it so there's at least one of us.

It took me a long time to get up the courage to use my disabled parking permit and i do get the odd dirty look when i park in a disabled bay. I’m not a wheelchair user yet and on my good days I can pass for 'normal'.

People’s conditions can fluctuate - I know that mine does. Also DISABILITY does not automatically mean WHEELCHAIR USER.

However, I am entitled to use my parking pass without being judged or (God forbid) being abused if i walk into a building normally after parking.

If someone holds a lift for me, I’ll try to get to it as quickly as possible - that's just being polite, isn't it? Should I hobble slowly from my Blue Badge space (ideally using my walking stick for added effect) so people don't assume that I’m abusing the system?

Or should people:

a) Give me the benefit of the doubt in a 'there but for the grace of God' kind-of way
or
b) Mind their own business

I know this is wildly 'off-topic' for this group. BUT we should all be careful about the language that we use, even in non-public environments.

So what do you think should I publish this comment? Or should I let it alone?

Tuesday, 9 October 2012

i love the smell of righteous fury in the morning

Always nice to start the day off with a rant!

I'm fairly active on most social networks, one which I don't necessarily see that much of a point to is LinkedIn - have I totally got this wrong but isn't this basically just Facebook-for-career-minded-adults?

Anyway, I'm in a number of groups that are relevant to my work - one of them, which sounds as dull as ARSES, is a closed-group called Thinkaboutpricing.

A DISCLAIMER: the guy running this is Tim Baker, who is a bit of a god in the UK Arts scene - I've worked with him occasionally over the years.

Earlier today, I picked up on a thread which was responding to an article in The Guardian about the concept of "Paid-for Queuing" - which is surely the only outcome from tickets for high-demand events only being available on the day of a performance, and which opens up all kinds of issues as far as accessibility is concerned.

One comment went thus:
Full Comment: "We had an interesting take on disability and queuing when we secured Michael McIntyre to perform at The Maltings. One person claimed discrimination because their condition did not permit them to queue. So, I know know that there are at least two types of claustrophobia: there is one type that stops someone from attending a queue, taking a numbered ticket and sitting in a warm spacious room until their number is called and then there is the other one which permits the same person to come into a jam packed 100% sold out venue and happily negotiate crush bars and corridors. funny that!"

I immediately got on my high-horse - I think it was the jokey little "funny that" comment at the end, which is a particularly pernicious kind of disabled-person bashing, is it not?

HERE COME THE PAIN:

Speaking as someone who has a chronic disabling health condition (MS), i'm sorry to say that i find the last jokey comment a little ignorant and misguided. i sincerely hope i'm misunderstanding you!  my condition fluctuates, so i can find standing in long queues very difficult. but i also like to see shows / gigs, etc - just like a NORMAL person.  and i don't feel that i should have to stay away from events where there's a danger that they might actually sell out!  my trips frequently necessitate a degree of planning beforehand for me - getting as much information as possible about the venue / parking / facilities in advance. and i will frequently book tickets at the ends of rows so i don't succumb to feelings of panic or claustrophobia.  (as an aside, i would probably book online wherever possible to avoid queuing.)  in this particular situation, speaking personally I don't think i would automatically jump to a 'discrimation' charge (as the potential ticket-buyer).  most likely i would contact the venue to discuss my condition - this has been particularly useful when booking for outdoor cinema screenings for example.  your comment is one step away from accusing disabled people and those with chronic health conditions as 'fiddlers' and 'benefit scrounging scumbags' - i think we have to face enough discrimination in the outside world (particularly with the current government) without it infiltrating the supposedly liberal and open-minded world of the arts.

Did I overreact? I don't think I did.