Wednesday, 22 March 2017

another shot at the moon

I think if I have a seizure, I'll definitely consider stopping taking these pills...
So here we are, then.

I received my delivery of a 4-week trial of Fampyra / Fampridine yesterday and this morning I took my first dose. Tablets have to be taken 12 hours apart and on an empty stomach.

Think about it - how often in the Decadent West, as a privelleged (sort-of) middle-class white guy, am I ever likely to have a truly empty stomach? But OK - I'll play along.

There's quite a bit riding on this - long-time visitors to this blog will know that my issues with walking are very definitely A THING. So if this can help me get my legs working a bit better, then eventually I might be able to exercise more and maybe build up some strength in order to forego this particular medical intervention. Who knows?

All I know is, something has got to start working soon. In the last 6-7 months I've changed my diet, left my job, started swimming more regularly, embraced mindful meditation. I've even started doing intermittent self-catheterisation, for goodness' sake!

I feel mentally clearer and stronger, at least - particularly since leaving my old job. I've started some freelance consultancy work, as well as doing some more (PAID) writing at MS.net. And the old pipe up the pee-pee is really freeing me up socially (it's still a bit weird, however).

Including Fampyra, I will be taking varying doses of eight different medications and supplements every day. And my mobility isn't getting any better.

Don't get me wrong, I'm not saying anything whingy and dramatic about this being a last throw of the dice or anything. I know how lucky I am to even have access to the drugs I am taking. Plus I am surrounded by people who want the very best for me.

Doesn't stop me wishing things were better though, does it?

According to everything I've read, people who respond to Fampyra know if it's working for them within 2 weeks.

At the very least, since taking my first dose I've been paying more attention to my mobility and posture - I'm not daft enough to be looking for any signs of improvement yet (although 14 DAYS). I just know that paying attention to the way I move around is something I really need to do more of.


But by the time I get through this very blister-pack of tablets, I'll know if it's working for me or not. Knowing that much is a good thing at least.

Thursday, 9 March 2017

i can change?

lifted from Dead Rob & His Dead Dog
It has long been a bone of my wife's contention that I seem to be much more rational, level-headed and stoical in my writing on here - and even more so on MS.net - than I am in real life. It won't come as a surprise to anyone who knows me that I can be a grumpy so and so. 

However, the other day was my annual(ish) MS MOT at the QMC. Aside from a general chat, the only thing I really wanted was to finally start the ball rolling with regards to the walking drug Fampyra which I've mentioned previously. Before starting the initial month's trial you need to have your walking speed assessed so I spoke to the MS nurses a couple of weeks ago to arrange to do this at my annual meeting - a full-service and new set of tyres to go with my MOT, if you will.

My main issue currently is to do with my walking - even with two sticks it's shocking. Apparently if Fampyra is going to work for you (which it does in a third of cases) it is obvious within two weeks of your free month's trial. Which is good, because after that you have to start paying for it.

Anyway, long story short, it wasn't possible to do this on the day which was mildly annoying. Previously, I would've really lost my rag about this kind of thing - like I said, this is the main thing which I'm struggling with at present, so we were all counting on it at least starting.

But today I decided to focus on the positives. Tecfidera is only messing with my bloods in a way which is medically 'tolerated'. More than this, my MS is stable - no new symptoms or significant progression at all. The neurologist noticed weakness in my left leg, so he is referring me for some more physio.

I saw the nurse who had previously said that I could bundle the Fampyra trial with my appointment. She apologised but has now started the ball rolling so I should be able to hopefully have my initial meeting for fampyra in a week or so.

This particular nurse also happened to be in the room when I'd been given the news that I needed to start doing intermittent self-catheterisation at the end of last year so she asked how that was going. I said that although it was undoubtedly a weird thing to find yourself doing, it's amazing how quickly you can adapt. She asked if I would be willing to talk to any other patients who might be struggling with having to start doing this themselves - in my current situation I obviously asked if there was any money in it. But it struck me that I'd be really happy to talk to someone about it, if it might be of help. At least, I don't think a demo is required…

All of this is way more positive than I would be traditionally (cf. blog title). So I don't have to be a miserable sod all the time.

This reminded me of a conversation I'd had at the weekend which illustrated that sometimes change isn't possible. My brother and I were reminiscing about how our cynical, know-it-all, anti-social music-snob personas were hard-wired over several hot summers. We suffered (and god alone knows how we suffered in the way that only adolescents can) with hay fever. So we would hole ourselves up in the dining room, which as well as having only north facing windows, also housed the family stereo. We would camp out in there, listening to and dissecting records (whilst sneezing) all summer long. It was great, but probably not great for our social skills. I know that it's not great to judge someone you've just met purely on the basis of their taste in music but it's still to this day incredibly hard to shake off.

I'm pleased that I'm a relative rarity amongst my male friends in that the music collection in our house is fully integrated. It helps that Mrs. D has what I consider to be good taste - but I think it's healthy to have (for example) Take That nestling up to Talking Heads. I think one of my friends makes his wife keep her CDs on a whole separate floor of their house! I'm not that bad.

However, if I come round your house and your music collection consists of a small rack of compilation CDs then I don't think we'll have much in common - sorry. I know it's wrong and I am trying to change but… baby-steps, y'know?

* FULL DISCLOSURE:  
This is all well and good but last night I totally lost my shit about some gravy which I had spilt. The struggle continues...

Wednesday, 22 February 2017

music of my mind

This is a post which I've been planning for ages. So long, in fact, that I've already (sort of) shared it IRL with one of the few commenters on the site (hi there, Swisslet).

Anyway, the main reasons that I use my phone are to take photos and listen to music. At one point during the work shit last year I made a note of some of the albums on my phone that happened to fit my situation. Some were my own, others were copied from friends - notably the blues titles that fitted a little too well.

These were all genuinely on my phone at the same point (mid September) and soundtracked many long days and nights when I was trying to salvage my career. 

Admittedly I've monkeyed around with the order a little to make it read in a more pleasing way and this is not a complete list of my phone's contents. But even so it's hard to escape the feeling that the universe was trying to tell me something at the time. And as an old friend used to tell me in a similarly momentous crunch point in my life, there are no coincidences:
In another spooky-ish coincidence, I came upon this article on The Guardian website. A lot of this chimes very much with my experience at work - especially the comments from people who said that they felt they had to work harder and longer than others to prove themselves.

The article contains a link to a Government consultation on work, health and disability but it closed last week - I hadn’t heard anything about this consultation, had anyone else?

Back in the (even more real) real world, as hinted previously I’ve stopped my claim for Job Seekers Allowance and started a claim for Employment Support Allowance. I’ve also got a short contract for some freelance consultation work, which is good.

Less good? Another dispiriting job interview experience (where I knew half the panel) which led to another rejection and - as yet, over a week later - no feedback. Guh.

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.

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".

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!