Thursday, 2 February 2017

anger is an energy

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


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".

Monday, 23 January 2017

deeply, deeply odd

The title for this post came from the recurring phrase I used last week when having my first go at Intermittent Self Catheterisation (ISC).

And it really was. And continues to be so. In abstract, the idea that something THAT long (40cm - that’s FORTY CENTIMETRES) is going into an aperture which has been, up until this point, a strictly ONE WAY deal still boggles the mind.

Men have the advantage that they only have a single point of entry which is visible externally. Women have two possibles, and they have to locate the correct path blind.

Is it helping? Hard to say. I still don't think I'm doing it entirely correctly every time, plus I don't think I fully trust it yet. But it's pretty weird when I see the amounts which have come out when previously I would have said that I was empty.

This is all TMI but I guess the point of putting this out there is to let people know that it's really not that scary.

And like everything to do with this bizarro disease, I should say that this is not necessarily the way it's going to go for every person with MS - maybe I could've avoided this by committing more to my Bladder Retraining Programme or by not going down the whole bladder-controlling medication route. Who knows.

But if it works and is as life-enhancing / changing as it seems like it could be, then it will be worth a few minutes of weirdness.

[A few days after writing all of the above]

I’ve now been doing this a couple of times a day for around a week and it’s one of the truisms of life with MS (or any kind of lifelong condition and/or situation), but it’s amazing how quickly humans can adapt.

I don’t think I’ve necessarily got it all down - if I step outside myself and think about it too much, it IS still a bit weird. But aside from a tiny micro-moment of discomfort and some logistical issues (how to fit it into ‘normal’ life, how to coordinate / juggle all the required elements), it’s getting easier.

As I said above, bladder issues can be a common aspect of living with MS but it doesn’t necessarily follow that you’ll one day find yourself sticking a tube down your dinkle / up your la la.

(As an aside, because ‘la la’ is the chosen gynaecological euphemism in our house, Little Miss D thought that when we went to see the new Ryan Gosling / Emma Stone film it was all about lady parts)
And anyway, nothing can be as weird as what went down in Washington a few days ago! Oy.

Wednesday, 11 January 2017

a new one just begun

The image above is from the not-really resolutions that me and the divine Mrs. D made last year. We uncovered them during our New Year's celebrations a couple of weeks ago.

If you can read my serial-killer scrawl, I think that we can agree that the second and third items on the list ("I'm going to be more... positive" and "I'm going to be less... of an arse") were not exactly met.

And on first glance, my initial reaction to the top one ("I'm going to give up... less often") was disappointment at another failed goal. But looking at it again and thinking back, I don't think this was the case.

I stuck it out at work in a demoralising and HORRIBLE situation and kept keeping on submitting the same piece of work for NINE MONTHS - taking the frustrations, knock-backs and feedback on the chin. No, it didn't work out but when the time came I left on my terms.

With support I'm sticking with the OMS lifestyle - which is genuinely not a hardship. I'm currently on a 101-day unbroken streak of meditation - I'm seeing it as my version of Pokemon Go or something; I can't lose my High Score now! And food is more interesting now (although admittedly more expensive) - this quote is something I keep coming back to, from the Overcoming Multiple Sclerosis book:
I don't understand why asking people to eat a well-balanced vegetarian diet is considered drastic, while it is medically conservative to cut people open and put them on cholesterol-lowering drugs for the rest of their lives.

More than anything, I feel mentally clearer and more with-it generally.

Which is handy, because I received a letter in the post a couple of weeks before Christmas saying that my Disability Living Allowance (DLA) was finishing and that I would have to apply for Personal Independence Payment (PIP) - you don't get moved over automatically. So for the last couple of weeks I've been filling out my application.

I don't know if you have filled out one of these forms, but it is single-handedly one of the most depressing things I've ever had to do. Speaking from the viewpoint of something as personal and infinitely variable as MS, you have to put yourself in the position of you on your very worst days - toilet problems, personal care worries, mobility issues, the full nine yards.

To say that it isn't fun in any way would be an understatement.

But at least I had a lot of "issues" over the festive break so a lot of it was fresh in my mind - #feelingblessed #luckyme.

Don't get me wrong, we had a BRILLIANT Christmas - I'd say it was in the Top Three, alongside Christmases where I got this and this.

But there were far too many times when issues to do with my mobility and my bladder just got in the way a little bit too much.

Later this week I'm getting a home visit from the nurse who'll be introducing me to the world of intermittent self-catheterisation (as my brother said, some people pay good money for this sort of thing).

And despite a bit of mild belly-aching last time, I'm genuinely hopeful that this will be a really positive thing - thanks for the supportive comments (and the email, Patrick).

Saturday, 24 December 2016

dignity... always dignity

As I mentioned previously, one of the things we really wanted to talk about at my MS MOT was my ongoing issue with my bladder. Longtime visitors here may remember that I've been taking Solifenacin for a couple of years now (Oxybutynin before that) and have been through a bit of light Bladder retraining - who could forget my self piteous bellyaching about completing a Void chart?

Anyway, I've been feeling even more put upon recently with endlessly numerous trips to the toilet, before taking even the shortest journey. It's been getting harder and harder to leave the house, especially if I (or we) need to be anywhere at a particular time. And I can't remember the last time I was able to sit through an entire film at the cinema without having to nip out. Frustratingly, when I do go, although I do GO, it never feels like I've GONE enough.

As I've had the same issues and have been "dealing with them" for at least three years (if you can call planning all travel by toilets along the route "dealing with things"), the fact that I haven't had a UTI by this point is frankly miraculous.

I've recently been through a period where I've had to get up to use the loo in the night. But I've always been able to put this down to a variety of other things - too much booze, drinking anything too late, work-related stress. Even taking into account the fact that I haven't had any "accidents", it needs sorting out.

So earlier this week I found myself back at the QMC in Nottingham. The MS nurse I saw last week had suggested that I might be able to increase the dosage of Solifenacin which she thought might go some way to solving the issue.

Now bear in mind that before my appointment I had been to the toilet:
  • Twice at home
  • Once at my parents' house on the way
  • Once at the hospital
All things considered, I was fairly confident that my tank was as close to empty as possible.

So I'm sure you'll appreciate how surprising it was to hear the urologist say that my bladder was close to full - holding around 380ml.

The long and the short of it is that there's no benefit from upping the dosage of Solifenacin and no other drug options.

So in January I'll be visited at my home by a nurse who will talk me through intermittent self-catheterisation. Not really what anybody wants to hear.

But the urologist said that these issues won't go away, not the way I've been managing them anyway. And using a catheter once a day should give me a bit more control and maybe get my life back.

(I know that sounds dramatic but even at this stage it really has had a massively limiting effect on my life and the life of my family)

Even so in the walk from the clinic to the front of the hospital I went from frighteningly stoical about it all, to depressed, to full-on enraged, all in the space of 2-3 minutes.

I'm writing this with a couple of days distance. Now? I'm still pissed off about it.

I can talk a good game about certain things being necessary tools to get my life back.
  • Walking sticks? I have used at least one every day for the past 5-10 years. But I still really hate them.
  • Wheelchair? Sometimes necessary and often totally life-enhancing. But I hate it and will do anything I can to avoid using it.
  • Self-catheterisation? I can see that this could really be beneficial - plus I know all too well the affect these issues are having on my day-to-day life. But I can't imagine anyone has ever been overjoyed at the thought of doing it.
Yes, I know there are worse things in the world that people deal with on a daily basis. And whining about this makes me sound like the sort of "poor me", cry-baby Bad News Blogger that I despise

More than anything I feel bad for Little Steve. We've had good times over the years!

I feel like a guy who's looking fondly at the family dog, knowing full well that in a couple of weeks I'll be taking him to the Vets to get his nuts snipped off. Does he even know what's going to happen to him??!

Whatever. Like always I shall prevail!

Thursday, 15 December 2016

a picture from life's other side

The last day at work was every bit as weird as I'd expected it to be. And that's considering that I almost came to blows with a colleague the day before whilst clearing my desk

This actually involved throwing away a lot of documents that I haven't looked at in all the years I've been there. There was a lot of crap there, but some great finds including:
  • A sheet with instructions about Proper Apostrophe Usage (liberated from my first real post-uni job when I left there over ten years ago)
  • Inexplicable examples of work from random print agencies.
I was determined to keep it low-key - the whole situation isn't really something I want to be celebrating. I did get some nice stuff though, not least a bit of Bowie vinyl from my boss. He's a complete Bowie-nut, so we've had many conversations about Zavid's life and work over the years and particularly over the last 12 months, obviously.

So I'm sitting here on my fourth day post-work. The first day doesn't really count as it happened to be the day for my annual MS MOT. Key take-home from this was that when I mentioned I was trying out the OMS lifestyle, the nurse didn't run screaming from the room. In fact, she said that she'd read the book too, and that it contained a lot of good convincing science. Which was good to hear.

Also good was the fact that my white blood cell count had started crawling back up - I've been having monthly blood tests as this is a standard side effect of Tecfidera.

We had a chat about my perennial bladder issues which have been rearing their head recently. There wasn't much else we could do about it though, as the bladder scanner was being fixed (the physio was off too, and the nurse we were talking to was the only MS Specialist nurse in that day).

After a bit of monkeying-about with my walking sticks (they've been giving me a bad back. SPOILER ALERT - they might've been set too low) and (fingers crossed) a final monthly blood test, that was it.

Yesterday and today I've had a crash test in how bloody exhausting it can be trying to stay on top of maintaining a house.

When I picked Ms. D up from school yesterday, a friend asked me how I was getting on (she and her partner know all the details of my recent situation). I said that prior to this, the idea of being a house husband was really attractive. But right now, I'm exhausted and scouring the job pages for anything to fill my days!

Friday, 9 December 2016

the blue bus is calling us

* post title from "The End", obvsly.

Just waking up on this, my last day at work. Mixed emotions, really.

The last year has been dreadful and I'm looking firward to just stopping for a bit - no regrets there.

But it's undeniably a scary biz.

I'm hoping for a low-key exit - but I've been picking up that my "a few drinks in the pub next door" edict has been.... not quite overruled, more expanded like a deluxe-edition CD reissue of an album that you haven't listened to in a while.

I hope there won't be any speeches. I certainly won't be making one, lest it becomes reminiscent of Father Ted's acceptance sppech for the Golden Cleric award.

Let's be honest, this is the leaving speech that everybody wants to make, right? Mixed in with Scarface. Just me?

Tuesday, 6 December 2016

the poor historian

I had a brief conversation with someone on Twitter the night before my interview last week. She'd shared something really interesting which I retweeted. We had a brief conversation the following day and I said that I'd recently read something online which was about the different personality types of people with MS. I planned to dig it out and share it with her as it kind of backed up her point.

It took a couple of days and several hours rooting around in my browser history to discover that the article I wanted to share was the one she'd shared in the first place.

Like I say, the first time I read the article was the night before my interview so my being distracted might be excusable.

But seriously. What a div.

Anyway, the article, "Who Is The Poor Historian?", appeared in the Journal of the American Medical Association in 1984. I reproduce it in full below because I think it mirrors a lot of things I've noticed since I was diagnosed, both in myself and others.

Personally I can be all too ready to kick off if a medical professional doesn't appear to be listening. At the same time I've always recognised that I can be like the third patient in the penultimate paragraph who is too eager to minimise or deny symptoms.

Similarly, I've met many people who can go the full on drama route (as an aside, I wince when I think back to the early days of my diagnosis when I went to the Neuro team in Nottingham practically begging them to give me steroids because I had pins and needles in my hands. True story).

Yep it's another example of somebody pointing out a personality trait which I've long recognised in myself. And making it feel like a huge, eye-opening epiphany. Go figure.

Anyway, this also serves as a bit of a kick-up-the-arse as I have my MS MOT next week. Let's get real.


In other news, I didn't get the job. I'm waiting for some feedback as I felt like I did a really good interview. I certainly didn't embarrass myself, and I'm still proud to have got an interview with a national, big-deal organisation. Plus I drove 109 miles there and back to attend the interview.

Anyway - heartfelt thanks for all the good vibes and well-wishes that I received here and elsewhere. It - genuinely - meant a lot.