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?

between a rock and a shit place

And speaking of crap gaps… This has been so long coming that I've actually had my first two half doses of Ocrevus by now. NEWS FLASH: I'm not dead.

In fact, each time I've had an infusion, I've tried to write a post. But for one reason or another, they've remained unpublished. So what scintillating titbits have ended up on the cutting room floor?

1. The support acts for the headliner Ocrevus (also known as the pre-meds) are a regular case of the old push-me-pull-you. Intravenous antihistamines knock you out, and then a dose of Steroids picks you up. And obviously, mean that sleep is hard to find that evening. Doesn't really explain how I managed to forget the main side-effect of steroids up until the night of my second half-dose, however…
2. People can be really annoying. Yes, even people with MS. We aren't all saints, y'know.
3. Related to this, noise-cancelling headphones are the greatest invention ever.
4. MS nurses are still great. At the end of the second infusion, one of them came up to me and asked me how I was feeling. Then she inquired about how I was going to be getting home. Then she said, "Before you go, I have one more serious question for you…" She nodded towards the remnants of the food I'd been snacking on.
   "I love those Nature Valley granola bars but I've never had one of the Peanut Butter ones. What are they like?"
   I answered with the seriousness this question required. "Game-changer. Total game-changer."
   

I'm not being paid for including this endorsement - but I'm open to offers

However…

You might remember that when I was diagnosed with COVID in October, I was getting ready to have my booster jab. And actually catching the damn thing put an end to that.

All throughout the period of my two Ocrevus doses, based on conversations I'd had with my Neuro and the MS Nurses, I'd been led to believe that I would have to wait until at least the end of December before I had my booster jab. 

I asked for clarification after my second dose and the nurse said that she would speak to my neuro and get back to me.

But I was totally unprepared when she called and told me that the earliest I could have my next vaccine shot was the end of March.

This is due to the way that Ocrevus works - it's one of yer classic Immuno-suppressors. And it's so good at it that, if I had a Covid vaccine, I wouldn't have much of an immune response to fight the infection and build up antibodies. 

Unsurprisingly, when the MS Nurse told me this, I said I wished that I'd stayed on Tysabri (an Immuno-modulator, if you remember). 

And all of this drama was before the Omnicron variant and BoJo's rapid vaccination roll-out. I've so far had three emails and at least two text messages from the NHS Covid response team inviting me to book my booster jab. It's pretty wearying, especially because we're trying to prepare for a normal Christmas, which - let's face it - it doesn't look like any of us are going to get.

So after basically shielding for all of 2020, and actually getting Covid, I'm in the same boat until the end of March 2022 at the earliest. 

And if by some miracle, Christmas 2021 isn't a total write-off, I'll need to be the ghost at the feast and - to the best of my ability - avoid seeing most of my family.

Weirdly, there's a Facebook group for people on Ocrevus. And EVERYONE has been told different things about when they can get their third vaccine / booster dose.

The most immediate repercussion of this is that I'm going to have to miss my grandmother's funeral next week - it's upsetting but I just can't take the risk.

I know that this sort of thing has been going on throughout the pandemic, but it doesn't make it any less of a shit business.

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.

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*

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!

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!

 

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

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... 

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.

unexpected mail

don't know about Posy but PIP is obviously the scariest monster

Always such a delight to receive something totally unexpected through the mail.

But with a wearying sense of the utterly predictable I got something entirely expected from the Department for Work and Pensions earlier today,

Yes, they've turned down my application for PIP again - almost a year to the day since I submitted my first application for this benefit.

In the last couple of hours I've gone from resigned to enraged to depressed. I'm now at the next stage - utterly determined to take this to the next level and a tribunal. So this is what we'll be setting in motion starting tomorrow.

The MS Society has recently been surveying people with MS about their experiences with PIP - if somehow you've missed it (I've received the link through a number of different sources), I'd ask you to take a look at this short survey. It takes about 20 minutes to fill in.

As you can tell by the following extended answers from my submission, I gave them both barrels - and this was even before this morning's letter!

I lost my previous job in December 2016. At that point I had to apply to move over from DLA to PIP. I submitted my application in January 2017 and was assessed in July (shortly after having two significant relapses). Despite this I was turned down, even after a Mandatory Reconsideration.

In September I reapplied so that additional factors which had come in between the two applications could be considered - adaptations around the home, increased use of a wheelchair, change of medication, CBT therapy for depression/suicidal thoughts, Physiotherapy, Intermittent self-catheterisation.I was turned down after my second assessment in October and am currently awaiting the result of a further Mandatory Reconsideration.

The financial strain that this has put on myself and my family has been considerable. If this second appeal fails we will be forced to go to a tribunal, meaning additional - in our eyes, unnecessary - stress, upheaval and uncertainty.

PIP as a process is completely at odds with a condition like MS, and the notes which came back following my two assessments bore no relation to the topics discussed – for example, how can someone state that I can walk between 50 and 200m when during the appointment I was unable to raise myself up from my wheelchair?

Filling out the forms involves exposing incredibly personal and humiliating aspects of our lives. To then have someone judge you and effectively accuse you of lying is utterly demoralising. Although I was lucky enough to have both assessments in my own home, this also meant that there was someone who came into my house and judged me without either an ounce of empathy or a care for the affect their decision would have on me and my family. I also question how much they knew about a condition like MS.

The strain on me and my wife has seen us at breaking point for most of the last 13 months – and although our daughter is only 6, this uncertainty will doubtless affect her too.

Nobody wants to feel that they are useless, and people with a fluctuating condition such as MS are used to talking in terms of "worst days" – this might have been accepted for DLA but with PIP this is viewed with palpable suspicion.

Filling out the form is confusing, depressing and demoralising, as is being submitted to the assessment. It is only through the support of close family and friends that we have survived so far – I can't imagine how more vulnerable people can cope but I know that often they don’t.

PIP denial 2: this time it’s personal

the DWP's new PIP assessor, yesterday

I feel like I need to start putting SPOILER ALERT on my Twitter feed. But last week I got an early Christmas present from the DWP.

Not really.

I actually got a letter from them saying that I've been refused PIP for the second time.

I should've seen it coming. The day before I felt the best I have done in ages. It was actually my last Therapy session but I felt like I'd turned a corner - still stuff to work on but I only had eight sessions. I'd already planned to have another eight sessions in the new year - I guess I'll need to book them in sooner than I planned.

As I said, this was the perfect end to a perfectly shitty year. A year of endless forms and pointless bureaucratic knock backs and double-speak which has prevented me from taking better care of myself and my family.

I've not had loads of time to fully digest their (il)logic but a cursory reading seems to imply that they're purposefully misreading my form and misrepresenting the content of my assessment (of which, as I mentioned previously, I certainly didn't make a recording).

I'm not on the scrounge, I just want what I'm entitled to, a replacement for my previous DLA award. This helped pay for the extra expenses - medication, prescriptions, petrol, parking, etc. etc. - which naturally arise because someone has a chronic health condition.

Being disabled is expensive.

We're going to chat with our local Unemployed Workers Centre contact. I'll also try to get the strength up to listen to the recording of my assessment (even though it doesn't exist) to double check if this is a simple misunderstanding or if it really is as personal and deliberately malicious as it feels at the moment.

Onwards!

anger is an energy

Since I lost my job... actually, that's not quite right. Since I mislaid my job... no, still not correct.

Ok.

Since I was encouraged to put down my job (simultaneously being urged to forget where I'd put it), I've been able to coast quite nicely. Christmas / New Year broke things up but the other week I realised that I'm fast approaching my second month between jobs.

As there's very little to apply for out there - and also because I've been paying into the system for the last 20-odd years - I thought I'd see if the job centre might be able to help me out.

After starting a claim for Job Seekers Allowance, I'm currently attending a programme about looking for work at the Job Centre every day for 4 weeks.

Let's talk about accessibility!

This particular job centre is on the other side of the city. It has no parking, let alone any disabled parking spaces. It's also located on the inner ring road. And the closest parking is across the ring road - which is naturally busy and fast-flowing (with no convenient crossing nearby). This is all without mentioning the fact that the building doesn't have a public toilet.

Tuesday was wet and miserable, pathetic fallacy writ large. Our little group of jobseekers had a session about conditionality - basically all the things we have to do in order to get our money.

I get it. People can take the piss. But when the best they can offer - with a straight face! - is the sweetener that, if you work part time (up to 16 hours a week), you're allowed to keep the first £5 of your JSA if you keep claiming. So you're only £5 better off.

I understand that there're other benefits that come with working - social, intellectual, all of that. But looking round that room I could actually see the thought bubble appearing over everyone's head - "Fuck. Dat. Shit."

Call me cynical. But the reality seems to be that the system is rigged so that people get so demoralised that they give up, at which point they drop out of a system that doesn't have to pretend to care anymore. Add that to the (in)accessibility and it's hard not to feel that disabled people aren't expected to want to better themselves and contribute to society, and anyway they should stop clogging up the system to let the normals though.

(If I can draw your attention at this juncture to a semi-related story about a bus driver effectively turning his passengers against a wheelchair user for wanting to board his bus, if you think I'm being paranoid)

This opinion was also voiced by a member of our group who is a former Job Centre case worker. She even told me that I'd probably be better off having something called a Work Capability Assessment, instead of going down the JSA route. Otherwise I might be in danger of having my benefits stopped if I refused to go for jobs which I'm physically unable to do.

Yikes. I knew here was a reason I hadn't been to see I, Daniel Blake - coming hard on the heels of my application for PIP, these current adventures in benefits might have finished me off completely.

And I'm one of the lucky ones - I have a supportive network of family and friends, plus I'm relatively well educated so I can (if I squint) navigate through forms and the more labyrinthine aspects of the benefit system.

But there were some people in our group who through no fault of their own didn't have an idea about how to create a CV. How does a society or an education system fail people so completely that they can't create something like that for themselves?

The people working at the job centre have an immensely tough job, and they are doing what they can.

But as I said to one of them afterwards, "Five quid is a tough sell".

one step forward, two steps back

So the Swimming Pool that I've been going to has closed down!

We'd got a plan in place and everything - I was going to drop the two female Dominoes off at Kiddy Ballet [CULTURAL ELITE], head round the block to the pool, do a few lengths, and get back to ballet in time to pick them up. But no.

This means that there is now no Swimming Pool open in Derby City Centre.

Working in the Arts [see CE], I know all too well that there's NO MONEY IN THE POT. I get that.

But be honest, is this really anyone's idea of a city?

Having said that, I do appreciate the irony of  closing down the Queen's Leisure Centre on Liz's 90th birthday.

The nearest good quality pool (the Queens was, to be honest, a sh*t hole but it was convenient) is in the town where I was born. Not a million miles away but not exactly handy.

Grump.

EDIT: oft of this parish and someone who I frequently add to a list of 'Friends who I am yet to meet', SwissLet is running the London Marathon again this weekend - as before, sling him a few quid if you are able as he's running in aid of the MS Trust.

a very, very, very fine house

all our stuff - in a VAN

And having missed out a whole month we're (sort of) in our new house. 

We were lucky enough to be moving into the house of a friend of my wife's family so were able to move out stuff in gradually, even before we'd signed any rental agreement. 

But at the end we seemed to spend a whole lot of time waiting for our buyer to give us any instructions and we kind of took our feet off the pedal. And then all of a sudden they turned round and said that they had to move in at the end of that week. 

We gnashed our teeth and ranted and raved. But with the sure knowledge that people should be careful what they wish for, we steeled ourselves and said, "You want it? You can have it". 

That week was obviously the longest and most demanding week at work that I have ever had, so most of the shifting and planning fell to Mrs. D and our amazing families. And our old house wasn't as clean as we would've liked it to have been when we handed over the keys [not that it was dirty you understand] but at the end of the day it has gone. 

As I write, we're still at Mrs. D's folks' while we get straight but it's taking shape. And the new house feels more like a home than the other house ever did. 

It's still pretty frustrating that we were forced out of a house which we owned, and the changes in lending coupled with us being a one-wage family mean that we've had to go into a rental property, but it's so nice to know that whole situation is finally over and done with. 

And the further away it gets the less it bothers us. Onwards and upwards. Can't wait to spend Christmas in our lovely new home. 

My previous MS Society-rattling post got a bit of interest, not least from the charity itself. I'd tagged it in a tweet when I first published the article [on September 29th] so I expected a conversation at least. So I was genuinely pleased to get this a couple of days later:

Since then, the silence has been frankly deafening. The most engaged debate was on this very blog - it would've been interesting to get a bit of a discussion happening with the many other MS writers/bloggers/activists I follow on Twitter, most of whom follow the MS Society. 

Even if they think I'm full of sh*t, I'm interested in the logic behind THAT organisation using THAT phrase on THOSE items. 

I know it's popular among some members of our community but for all the reasons I mentioned I still think it's icky. And I stand by them. 

In my (to my mind) righteous fury, I'd forgotten that it's also the title of a blog written by the person who chooses the "blog of the week" on the Shift.MS Facebook group.

So I guess I won't hold my breath before I get picked for that particular accolade again. 

you ain't seen me, roight?

an Eagle Eyed Action Man earlier today

The more eagle-eyed amongst you may have noticed that a few posts on here have been either deleted or edited.

A couple of incidents recently have shown me that people really don't understand how all this STUFF (the internet, social networking, all of that) works. People are going around with the idea that what they get up to in this particular sphere doesn't reflect on them in the REAL WORLD. 

I'm guilty of it myself, blithely sharing intimate details of my health in the mistaken belief that I was only sharing it with people who were also in the same particularly-crappy club. WRONG. 

Similarly, recent posts about our house could have a detrimental affect on its sale - which is going through quite nicely, thank GOD. Yes, we're happily in the limbo of Sold Subject to Contract. Still a way to go but at least something is happening.

We've got a lot of stuff to do so here are the headlines:

My so-called [by precisely no-one] celebrity activist life continues. In recent months this has seen:

• I've contributed to an article for the MS Trust's Open Door magazine about going to gigs - I don't know when this will be out exactly, but it's very nice to be asked.
• By sticking my oar in on a conversation that the MS Society started about phone apps to help manage MS, edited highlights from this old post may be featured in the November edition of MS Matters.
• The MS Trust also got in touch to see if I'd be up for talking to someone from a national drama broadcaster about a potential future plot line in SOMETHING involving a 40-ish bloke going from initial symptoms to diagnosis. I prepared for a 5-minute chat, spoke for 40. 

Longterm visitors will know of my problem(s) with Linked In, officially the dullest social networking site. Anyway, I'm a member of a group called the Association of Disabled Professionals UK and the other day someone posted a link to a really interesting article on DisabilityNow:

I recently read that last year, about 220,000 more disabled people lost rather than found a job. Other research suggests that if a disabled person loses a job, unless they get another one within six months, they are likely never to return to work. For all the talk about improving the work opportunities for disabled people and all the effort and state funding spent, often ineffectively, in trying to get unemployed disabled people into work, there is a revolving door throwing even more out into worklessness.

Read the whole article here.

And finally - just in from "potentially-interesting-but-at-first-glance-confusing-INITIAL-research-findings", people on Twitter and elsewhere have been going mildly bat-shit today about a possible link between HIV and a lower risk of developing MS.

I'll let that one sink in.

It's not yet known whether it's HIV's immune-system surpressing "qualities" which is leading to lower instances of MS, or the combination of drugs used to control HIV.

As a related aside, am I the only one who remembers talk of a lower onset of disability in people with MS who drank alcohol without restraint?

I know this isn't what the powers that be are saying but it's at least mildly diverting to imagine that unprotected sex, needle-sharing and pounding down 40s could be your way to a healthier lifestyle.

It's no more ridiculous than the recent Cancer Research UK fundraising program where people were encouraged to have barbecues.

Someone should have thought that one through, right?

as we go up, we go down

So my MS MOT was as exhausting as always. Who knew sitting in a hospital all day could be so tiring!

We got there in enough time to grab a coffee before we made our way to the waiting room to do some GRADE A WAITING.

For some reason they always have a TV tuned to a programme which features somebody you'll never meet buying (or selling) a house (or an antique) that you will never visit (or see). If you're really unlucky it's a mawkishly sensationalist programme about somebody you'll never meet having some kind of 999 Emergency.

The neurologist was obviously running behind because the nurse asked me if I wanted to see the physio straight away. I didn't have anything in particular that I needed to say to her but it beat the heck out of sitting in the waiting room.

We had a quick chat about my intermittent adventures with walking and swimming and the benefits thereof, before she had a quick look at the stick which she had given me last time. She thought it looked a bit worn and rickety so she toddled off to get me a new one. Very nice!

Then it all started to go a bit wrong.

The main thing I get from these sessions is a talk with one of the neurologists - to talk about treatments, future developments, and to check that the drugs I'm on are the right ones.

But the door we entered was marked Registrar. Now, this is probably a very high pressured position, requiring a dizzying amount of training, education and commitment. I'm not belittling it and I certainly couldn't do the job.

However, this particular guy took TWO mobile phone calls in the five minutes I was with him - at one point he sent a text message while I was answering one of his (borderline incoherent) questions.

Me and Mrs. D just goggled at each other. During the 2nd phone call, she walked out to find a nurse in order to make sure we could talk to someone else as soon as possible.

When he got off the phone (2nd call) I asked him to turn it off but there was no point as he was rapidly winding up our chat.

The NHS is a wonderful (if woefully under-resourced) thing. And the team was obviously under-staffed on that particular day.

But this is the ONLY chance I get to talk to a member of the team from one year to the next.

Obviously I can call the (fantastic) MS Nurse team anytime, but often then I'll be in the middle of a suspected relapse. Advances in research and / or the latest medical interventions are not at the top of my chit-chat list.

We eventually had a really good talk with the head neurologist. In summary:

• Rebif is still one of the first-line treatments they prescribe and as I'm tolerating it well (and because it has been two years since my last relapse with no new symptoms of note), there's no real need to monkey about with my treatments. Most of the newer treatments are designed for people with much more advanced symptoms.
• If my Disco Legs continue to plague me, I could stand to increase the Gabapentin dosage (I currently only take 300mg a night).
• We had a good chat about Vitamin supplements (basic advice: FILL YR BOOTS WITH VITAMIN D)
• Also my most recent blood tests (if there are no family members reading this, I'm a little bit anemic - if I'm related to you, EVERYTHING IS FINE)

So nothing new. But it was nice to hear it from the top.

If we'd have left after seeing the Registrar, we'd be thinking what was the point?

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?

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.

the gullible cynic

The Internet can be an amazing thing - especially if you have an illness like MS.

Most importantly, you can find somebody, somewhere who will have already written about any symptom in order to back up ANY half-baked theory you might come across in the course of your day!

Exhibit A
I've stopped having Cow's milk in my cereal, shifting to a Soya alternative (quite nice actually) after reading various things about a link between MS and Lactose Intolerance. But the thing that finally convinced me? Well, that was finding a web page (which I can't find now!) which said that the cheese-making process actually removed the lactose - so I can still eat cheese! Result!

I do actually feel quite a bit better, it has to be said - much less slovenly and my memory (for work stuff) seems to be better (still SHIT at home, mind) - but that could be due to any number of reasons:

• I genuinely love the autumn - Jumpers! Comfort food! Bright crisp mornings! Cardigans!!
• I've recently doubled my Vitamin D3 intake to 2,000 IU.
• I've walked into work for the first time in AGES on a couple of occasions in the last week - it was lovely (see first reason above).

So it could be the Soya or it could be... I dunno. Just good vibes?

I even recently picked up this article about Bacteria in soil having a link with MS - bizarre and I DID eat soil as a child...

When I go home to talk about this stuff, my wife just rolls her eyes - "oh, what have they decided this week?"

And it DOES seem that there's always something new which is put forward as a theory - hopefully something which can make you feel quilty - "are YOU eating enough LIVER? Tut-tut"

Call me a wet liberal but I like to think we should, as a species, be moving beyond the idea of OFFAL as a food choice. I know it's supposed to have loads of good stuff in it but when you think about what a liver actually does... just *ick*.

I always come back to when I was first diagnosed, when the neurologist who called it what it was told us to stay clear of the Internet.

There are some totally valid sources of information - MS Trust, MS Society, Shift.MS - but even here there are open forums where people can sound off about their individual symptoms and have a good old moan (a long-standing pet peeve of mine) - and even play DISABILITY ONEUPMANSHIP BINGO. Brilliant!

But my absolute favourite thing about the Internet is currently Twitter - I can't even put into words what I love about it, but in the last few months I've had many chats with people - some newly diagnosed, some old-timers - not to be the "Big I Am" but just going back to my idealistic view of solidarity and LOOKING OUT FOR EACH OTHER.

(I still hate the #MSsucks hashtag, however...)

Anyway, I organise my feeds into two lists - the full list of those that I follow, including musicians and hopefully amusing celebrities, and one called Real People - these are people who I interact with regularly or have even *gasps* met in the Real World.

One of those Real People is Abigail Budd and earlier today she posted a link to another new study which says that "measuring the walking speed of multiple sclerosis patients can help doctors assess progression of the disease and the severity of disability". It then goes on to give an idea of what level of disability can be expected based on walking speed.

I flipped out (mildly - I am at work, after all) - how is that study useful to someone who has been recently diagnosed, or even to someone who has been diagnosed for years? As Abigail said to me, it's not offering much in the way of hope or disease treatments.

It's effectively just giving a new yardstick to measure how difficult your life is / is going to be. I have visions of people with MS walking around with stopwatches. And what's going to happen if they can't manage the desired time on that particular day?

Are we so out of ideas that we're each going to turn into our own personal ATOS? The current UK government would probably call that an "empowering decentralisation" or something.

As is so often the case, I don't really know where I'm going with this (and I am hungry) - but we need to be careful about what we choose to believe (obviously).

Just like me with the thing I found about Antihistamines or my ridiculous Lactose rule - if it had meant cutting out cheese, I'd never have even considered it (wish I could find that website, though...).

My problem is that I'm a very gullible cynic - I try to take everything with a pinch of salt but like my canine friend says...



[edit: see my follow-up to this post, corrections and clarifications]

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.

a word to the wise

I started writing this post yesterday when I was in the eye of a Fatigue Storm. It was shaping up to be super-long and super-depressing - today is quite a bit more hopeful! So stick with it.

Let's Go!

It has been seasonably warm over the last few weeks - it says a lot for the English Psyche that we feel the need to comment when our summer is *heaven forfend* SUNNY.

The other week, my mate Simon started the Derby Race For Life in memory of his late wife Annabel - the race started round the corner from where we live, so we went along. We didn't manage to hook up with Simon but had a nice time on the park watching people running 5k in blazing heat.

The trouble started when we tried to get home - the heat had done a number on my head, so I could hardly move my legs. I barely made it home.

This year has been the first time I've really been aware of how the heat can affect me - yeah, I've noticed the energy drain before now - but this year, it's been almost like as soon as my head gets in the sun, my brain goes into a slump.

So when this post appeared on StumblingInFlats at the height of the heat, it was all too relevant to me.

Case in point - this last weekend, we were in Bristol for Gromit Unleashed exhibition (Evie loves the Wallace and Gromit films) so we stayed for a night in an apartment and tried to walk around seeing as many of the Gromits as possible.

Y'know, like any normal young-ish family.

Obviously MS had other ideas. Basically the heat and a long drive conspired to make it feel like I was walking through thick sludge. I'm assuming that you know how it is!

But obviously this conspired to put a dampener on the weekend for us all - actually, I don't know if Evie noticed but me and Mrs.D certainly did. It's hard for her to see me struggling, and it always makes me have all kinds of helpful thoughts.

"Is this the start of a slow decline? Am I going to need more assistance in the future? Will our lives consist of a constant narrowing of our horizons? Would my girls be better off without me?" - y'know, that kind of thing.

It carried over into my return to work this week - each day I was completely beat when I got home, struggling up the stairs and making it onto the sofa, barely able to hold a conversation.

ANYWAY - for some reason, when I was bathing Evie last night, I remembered something that somebody on Twitter had talked about - how her MS symptoms seemed to be exacerbated by a histamine intolerance.

Now - I've had Hay Fever since I was a child. But I have many, many HAPPY memories of Summers spent with my brother (who always had Hay Fever much worse than me), listening to records in the Dining Room at my parents house - the stereo was in there, and the room never got ANY Sunlight.

These really were golden days - eating frozen fruit drink cartons and listening to the key musical texts of my upbringing - quick thanks and roll call for De La Soul, Pixies, Dinosaur Jr, Throwing Muses, Sonic Youth and The Stupids.

Musical digressions aside, I still get a little bit of Hay Fever, so I've recently been taking antihistamines.

When that Twitter conversation popped into my head (and after I'd put Evie to bed), I went to Google and just look at what popped up:

Now I'm not dumb enough to diagnose by Google but that article makes for interesting reading!

Am I going to take it with a pinch of salt? YES - especially as the same search throws up results which seem to promote the use of antihistamines as an MS treatment.

Did I take any hay fever treatments this morning? NO

Do I feel more physically and mentally able today? YES

Am I going to talk to my MS Nurses about this? HELL YES 

Today's lesson:
With MS we're playing with a queered deck from the start, so I guess I should've known to look into things a bit more carefully before I started taking any additional medication.

And I know there might not be a link.

But I DO feel better today.

So let's all be careful out there.

And with that I'll leave you with the full Peruvian Vacation album by The Stupids (it's only 20 minutes long) - sometimes the internet really does deliver in spades, doesn't it?

Enjoy - and pass me a Capri Sun.