a historical artefact [TLDR]

Among my group of friends in the pre-internet age, much of our cultural and social capital was tied up in how much we knew about music, obscure or otherwise (preferably obscure). Yes, we could be more than a little bit intimidatingly smart-arse-y about it, but I have many fond memories of sitting in pubs, drinking, (and even smoking) while shooting the shit about music.

Back in the day we would make compilation tapes and CDs for each other and I'd been visiting Music blogs like Spoilt Victorian Child, Bubblegum Machine, You Ain't No Picasso for a while. So eventually, our own brand of musical one-upmanship led to the creation of Domino Rally, enabling the members of our band Johnny Domino to talk about the music we were into.

To me, this was a more altruistic time of music enthusiasts writing about artists they loved, sharing one or two tracks, linking to the artist and encouraging people to actually buy music. I'm not going to pretend I haven't benefited from bulk-downloading of pirated music but to us it was more a kind of recommendation service we were providing. Plus I still like actually buying stuff.

In the back of my mind, I kind-of thought that, if we talked about it enough, we'd strike up a conversation with an audience who might be interested in the music we were making ourselves.

Did it work? Well, we did receive a lot of comments on the blog and struck up a number of transient faceless online friendships. But did this translate into sales of CDs?

Ask yourself this question: how many Johnny Domino CDs are in your house? 'Cos we've got f**king loads of them!

Anyway, about a year and a half after starting the blog, Johnny Domino played their last gig - it became more and more difficult for us to get together. (Maybe we also felt slightly ridiculous being men of a certain age trying to make it playing music. Who knows.)

At one point, I received a (fake?) Cease and Desist notice from Google, panicked and removed all the posts. So for no good reason whatsoever over the last couple of years I've been slowly reuploading all the articles, replacing the MP3 files with Spotify / YouTube embeds where available.

Here's a playlist! Only the first 200 songs available by this embed but here's the link to 337 songs and nearly 22 hours of music.



This really was as wild as our Wild Young Days got, but I've loved re-reading the posts - some of the writing is actually pretty good and I still love a lot of the music (with a handful of exceptions). The comments we received haven't been reuploaded yet - another time, maybe.

It seems to me that these days music is everywhere, more portable than ever, and more accessible. But somehow it seems to mean a bit less. Not to me, I must add, and maybe not to you.

I still buy a lot of music in a variety of formats, and I still get a thrill from hearing something new and different - I'm going to be 42 in a week or so, so I genuinely love hearing something which confuses me, and which is a reminder that I'm not really the target market - it's good to know that this can still happen!

As an illustration, a recent WTF moment was when I heard the following song (which I really like now, despite - or because - it sounds like it was recorded on someone's phone).

down the rabbit hole

So it's probably two weeks or so since me and Mrs. D went to see the lovely MS Nurse Team at the Queen's Medical Centre in Nottingham.

While we were waiting outside we read through a booklet which was about the type of treatments which are available on the NHS - worryingly they were all injection-based, so all just variations on a theme.

Like I mentioned before, the reason for seeing them was because I'd been noticing that the side-effects of my Rebif injections were getting more and more debilitating - plus they seemed to be lasting forever.

With injections on Monday, Wednesday, Thursday, I would be good on Sunday if I was very lucky.

But in my annual meeting with the Neurologist last March, we talked all this through and he said that Rebif was still a first-line treatment.

When we got in, we explained all this to the MS Nurse, who said that the booklet we were looking at was really out of date - they don't tend to prescribe many injection-based treatments, preferring to get people started on oral therapies (the first choice of many patients too, I'm sure!).

She also mentioned the fact that people on some beta interferon injections can sometimes start to produce neutralising antibodies - so reduce the effectiveness of these drugs. So this might be a reason why my side-effects were getting more intense.

This particular nurse (Maxine) always seems to have a tote bag with her which is full of booklets for different therapies, and she did not disappoint this time - see the image on this previous post.

(The MS Trust booklet is particularly good)

We talked the options through, explained our concerns and my side-effects, and were particularly interested in Tecfidera (dimethyl fumarate), which has been shown to reduce replaces by up to FIFTY PERCENT - beating the "by about a third" which gets bandied about for the more old-skool injection therapies. I've since confirmed with the MS team that this is where I want to go, so the wheels are now in motion.

The other thing we talked about was my ongoing problems walking and the drug Fampyra (called Ampyra in the US), which we mentioned as an outside possibility - Maxine is a real force of nature and said that she didn't see why I couldn't go on this too.

By this point we were both in tears - the last few months have been really hard and not-a-little worrying for us but now we were in a position to make some changes for the better. Normally I would have just waited for my until my annual Neuro appointment (which is in July)!

Maxine vowed to talk the Neuro I'll be seeing, and to arrange another MRI for me - I haven't had one since the MRI which led to my initial diagnosis and we need to check my lesions, especially because I've recently been experiencing a bit of new-ish Neuropathic Pain (mostly intense burning beneath the skin).

When I said that I found my previous MRI experience traumatic (to say the least), she admitted that she did too and suggested that I get sedated for my next one (date TBC).

So a really positive experience - and now I wait to hear from them about when I can (hopefully) get off Rebif.

GOD SAVE THE NHS - in light of the recent election, I've just written to my new MP from the http://www.treatmerightms.org.uk/ website.

a prime location

Way back when I was first diagnosed, we asked the first neurologist we saw if he thought there was anything to gain by visiting one of the local support groups. His response?

"I'd only go along if you want to get really depressed."

His logic was that, as a new member of the 'club' — and one who was displaying relatively few external symptoms at the time — the other people at these meetings were likely to be in a worse state than me. So not entirely helpful for a new recruit, and so we decided to give it a miss.

However, in my recent drive to take MS by the scruff of its neck I decided to "feel the fear and do it anyway".

An aside: the centre - also known as Lilian Prime House - has an imposing frontage (see image) and before the advent of Google Street View was nigh-on impossible to find - for me, anyway!

The Derby MS Centre has a programme of activities and also hosts monthly open days, and I went along to one the other week.

The centre staff were all lovely and welcoming (and once inside the building it certainly feels less utilitarian). And the people who were attending were… well, weirdly similar to me. For a start they were all male — one of them even had the same walking stick!

Aside from that the only other attendees were the wife and daughter of a man diagnosed with MS 10-or-so years ago who refused to discuss the matter (he was conspicuous in his absence). I know everyone deals with their stuff differently — and I'm not pretending that I've got all this shit sorted by any stretch of the imagination — but it was pretty heartbreaking to see the effect that shutting them out was having on his wife in particular.

I didn't have time to stay for a Chair Yoga demo so I went along to this last week — and it was pretty hardcore! I know I shouldn't have been surprised.

I was okay as far as the upper body stuff was concerned but when we moved onto legs and feet, it was a sobering reminder of how weak my left leg is.
I was the only guy there, and the particularly sparky lady next to me said that she was glad I'd come along as "if there's one thing I can't abide it's a roomful of women".

I'd planned that this was going to be a weekly thing but the sessions only take place during the day. And on that particular day, my lunch hour ended up being more like two hours in all, so it's not really something I can do if I want to keep my job. Plus I had to work extra at the end of the day to make up for it - which was pretty tiring!

The other people there were older, and were either wheelchair users or moved with walkers. Most of them were brought along by carers, so I can fairly-confidently assume that I was the only one who was going back to work afterwards. 

On top of this, Lilian Prime House is open Monday, Wednesday and Thursday, between the hours of 10 am and 4pm.

Thinking about this later I couldn't help remembering the MS Society estimate I mentioned a while back — that only "between 23 and 32 per cent of people with MS are in employment".

What the hell do the rest of us do?

a little light reading

To be continued…

emotional weather report

this great illustration is by Stephanie Ayers (image taken from here)

And a line of thunderstorms was developing in the early morning hours
Ahead of a slow moving cold front, cold-blooded
With tornado watches issued shortly before noon Sunday
For the areas including the western region of my mental health
And the northern portion of my ability to deal rationally
With my disconcerted precarious emotional situation
It's cold out there
- by the mighty Tom Waits

Like most people in the crazy world we call WORK, whenever I have some time booked off I tend to work way harder than I would normally. With my (our?) peculiarly compromised health condition, by the time I get round to my days/weeks off, I REALLY need some time off.

Don't get me wrong, we had a great time at Center Parcs last month, as I mentioned yesterday. But it coincided with a time which was one of the lowest I've had in a few years. Physically, I was having real problems getting around - on top of that (or maybe BECAUSE of that), I allowed my old bladder issues to rise up. It's astonishing how many 'just in case' trips to the loo you can have! It's easy to make light of it now, but it was a bit of a kicker (to put it mildly).

It was hard to feel like I was letting my family down and becoming a millstone. And by the same token, it was hard for Mrs D to see me struggling and succumbing to old problems.

On top of all that it must have been really frustrating to see me not taking better care of myself, especially with regards to fatigue management - the parking issue I covered before was a case in point and I really didn't need to do any of that walking around.

After a rough couple of days we determined to have a good time and overall we did. But it cast a shadow, which carried over into our return.

Over the next two weeks I noticed that the side effects from my Rebif injections were really starting to be debilitating. Like most people on this brand of beta interferon, I inject on Monday, Wednesday and Friday. But recently I'd been feeling BLOODY AWFUL on Tuesday, Thursday and Friday. So at best I was good for one day a week!

I've been noticing on Twitter recently that a number of Rebif users have been jumping ship for newer, less-intrusive treatments - a lot of them oral therapies.

So I put in a call to my MS Nurse team, described what seems to be going on, and I have an appointment with them next week to talk about my options.

In a post-slump period of TAKING NAMES AND KICKING ARSES I'm also interested to see what the deal is with Fampyra, the mythical currently-unavailable-on-the-NHS (?) walking treatment.

As I've been struggling with my walking in particular*, I've also asked my GP to refer me back to the Physio. And as requested by my boss, I'm getting an occupational therapist to look at my workstation to see if there are any modifications which could make things a bit easier..

Who knows how long this energetic brand of proactivity will last? Let's find out!

* incidentally, please don't ask about the walking to work, it's really gone out the window and it makes me feel worse than anything - especially when SwissLet of this parish is running the bloody London Marathon this weekend for the MS Trust - I've slung him a few quid, so should you.

center parcs 2: electric boogaloo

Apologies for the delay in posting this (very brief) update about our recent return to Center Parcs.

This is due in no small part to the inclusion of this photo of a squirrel, which I took at the back of our lodge. I got a media release form signed at the time (OBVIOUSLY) but when I said I was going to put it on the blog it really started getting ugly.

Honestly, everything at Center Parcs is SO monetised... I've had to deal with the squirrel's agent (and its Union), and the negotiations over the usage fee [way more than I ever imagined!] - at one point I considered pixelating his face, but even then it's so obvious who it is - honestly, I wish I'd never bothered, but it's a nice picture - so there we go.

A word of advice: if you want to take cutesy pictures at Center Parcs, think through what value it's really going to bring. Is it worth it?

Anyway, headline figures from CP15 - it's still great and OVERALL we had a great time (I'll explain the qualification in a later post), but the communication from CP about accessibility is still confusing at best.

Long-term visitors may remember what our biggest bugbear was previously:

The day before we came home, we went into Guest Services to see about arranging a bus to pick me up in order to collect our car in the morning - check-out was an ungodly 10am and we thought this might be a handy bit of fatigue management - certainly better than walking across the park, driving to the lodge, loading up, driving home...

I called security... and they said that they didn't have any drivers in for the next day. Considering the fact that the arrivals and departures are pretty much all on the same day, this seemed crazy. I explained that the reason I was enquiring about the bus was that I am disabled (response: "Are you in a wheelchair, sir?" Nurrrr....), and then he asked if I had a Blue Badge, because if I did, I could park outside our lodge overnight and load up in the morning.

Again, I understand that Center Parcs is a car-less utopia (and it was one of the most attractive things about it for us) - but it would've removed a lot of our worries about packing up and leaving with a 3-year-old at TEN A.M, followed by an (admittedly short) drive home if someone had mentioned this in advance. Maybe they don't want people to take the piss, which we certainly didn't want to.

So this time we knew what the situation was and the night before we came home I went to Guest Services to double-check that this was all cool. They said that it was, although as I had a Disabled Driver's Blue Badge (Hi there!), I could have just parked up outside our lodge all week.

[!]

Anyway, I found my car and drove out to the front gate, explained to the security guard what I was doing, and when they clocked my Blue Badge, they said, "just so you know for next time, you can leave your car outside your accommodation for the week. The only time it'd be a problem would be if you started using it to get around the park during your stay".

[!]

Like I said before, one of the things I like about Center Parcs is the lack of cars, so it's not as if I'd be using it to cruise up to the Sub-Tropical Swimming Pool or the Pancake House. Plus as I mentioned before, it really is all very accessible, so we wouldn't need it. And in saying this, I totally understand that my accessibility needs might be considerably less than those of other people.

But as it stands we have a situation when disabled guests are forced to pay additional fees for accessible accommodation in order to manage fatigue (for a HYPER-SPECIFIC example). In our own situation, the rules with regards to parking were so unclear that I unloaded the car at our accommodation, drove around to find a parking space, walked back to the lodge and wiped myself out for the first full day of our stay.

The emotional and psychic fall-out from this particular situation will be covered more fully in my next post!

nothing to see here

Well, no news is good news.

My MS seems to be behaving itself on the whole - which is great obviously, but doesn't make for a massively compelling blog.

Some you win, some you lose!

The weirdest thing which has happened recently is I've found myself thinking more and more about our old house and our delightful neighbours. I know that Mrs.D is feeling the same - she even had a dream about it last night.

I guess that this time last year we were right in the middle of it all [literally] - and we're so much happier where we are now. We have lovely neighbours on both sides, about whom we know only the barest of details - which is exactly how we want it.

We moved into our new house in November, after which we went straight into a family wedding and Christmas. It's odd but this is probably the first bit of down-time we've had.

And in a way, the whole situation was so awful, it's almost like we have a mild version of PTSD - I don't like looking at photos of us in the house from last year. Even the happy ones, I think "oh yeah, that was just before THAT happened".

To have to deal with that level of upheaval and disruption in the last year before our little girl goes to school... it just makes me furious thinking about it! To be honest, I think it's amazing that our marriage survived, never mind the fact that I didn't have some kind of MS episode.

On a recent weekend we went to see my parents before they went on holiday and it reminded me that around this time last year, my parents were away so the three of us went and stayed at their place - just to be out of our house and to get a guaranteed decent night's sleep!

Last week we were at Center Parcs in Sherwood again - I have more to say about our break later but this will be the last time we won't have to pay the frankly ASTONISHING prices which they charge during the school holidays.

When we went there last year, it was at a time when we thought that SHE was going to be evicted - when we returned it was obvious that this was not going to happen.

I know it's not healthy to focus on this stuff but it's amazing how raw it still is for us all. Consider this a cleaning out of my closet.

Having said that, I might re-upload some bits of this blog which I removed in the run-up to the house sale - I know that some of you JACKALS will get a kick out of that..! And I might find it a little cathartic, too.

Onwards and upwards!