My beloved monster and me...

Words

2011-02-24T20:59:00.002Z

I haven't posted in a little less than forever, because I still haven't entirely felt like I have any thing worth saying, to say, as it were.

Instead, I shall simply slip in a few words that no matter how many times I read them, still stop me in my tracks. I think they may very well be the most extraordinary piece of writing I have ever read.

So here's a Fillyjonk for you.

“‘The cakes are my grandma’s recipy,’ said the fillyjonk. And then she leaned forward over the table and whispered: ‘This calm is unnatural. It means something terrible is going to happen. Dear Gaffsie, believe me, we are so very small and insignificant, and so are our tea cakes and carpets and all those things, you know, and still they’re so important, but always they’re threatened by mercilessness…’
‘Oh,’ said Gaffsie, feeling ill at ease.
‘Yes, by mercilessness,’ the fillyjonk continued rather breathlessly. ‘By something one can’t ask anything of, nor argue with, nor understand, and that never tells one anything. Something that one can see drawing near, through a black window-pane, far away on the road, far away at sea, growing and growing but not really showing itself until too late. Mrs Gaffsie, have you felt it? Tell me that you know what I’m talking about! Please!’
Gaffsie was very red in the face and sat twirling the sugar bowl in her paws and wishing that she had never come.
‘There can be very sudden storms at this time of the year,’ she said at last, cautiously.”

Green

2011-02-02T20:29:00.002Z

Not an update, just a quote and a song. My days are currently a tense, frantic blur where I am utterly convinced that I should be three people. It's fun to ride the currents as I sail through them, letting the waves wash me where they will and making the world think I know what I'm doing.

Which I do.

At least in some aspects.

I'm also learning that the only way I'll be satisfying with the efforts of others, is if I simply re-do them myself. I am very far from being a perfectionist, but so far I can count on one finger the number of people who have achieved the platinum plated standards I seem to set for myself and expect others to achieve. I am an eternal optimist who forever thinks the best of people.

I am clearly therefore an idiot.

An idiot who carves his perfect empire and then, when he looks up from his efforts, realises no-one is there to show them too. No-one can match the ideologies in his mind and no-one ever will.

And so he finds himself peering in on the world, wonder exactly how someone is able to take part in it all and to simply lean back and enjoy it.

Enter the quotation.

“What I suffer from this continuous idleness I am quite unable to describe. I would like most to hang myself on the nearest branch of the cherry trees standing now in full bloom. This wonderful spring with its secret life and movement troubles me unspeakably. These eternal blue skies, lasting for weeks, this continuous sprouting and budding in nature, these coaxing breezes impregnated with spring sunlight and fragrance of flowers…make me frantic. Everywhere this bewildering urge for life, fruitfulness, creation--and only I, although like the humblest grass of the fields one of god’s creatures, may not take part in this festival of resurrection, at any rate not except as a spectator with grief and envy.”

And so he pops the pills and waits for them to do what they are meant to. Waits for things to change.

And while he waits he listens. He has no clue what the song is about, but it seems good to wait too. It fits the moment well. An audio stasis that repeats until it ends.

Enter the song.

And when it does end, it makes you glad it's ended, but also glad you listened to it.

Funny how it works, isn't it?

Absence

2011-01-16T17:11:00.002Z

Yes, yes, I haven't written anything in ages. The vagueness of a mushed up mind is to blame for this as the most exciting thing it wants me to do at the moment is turn over in bed.

On the plus side, there have (so far) been no hiccups with stopping the Rebif, other than a curious sense that I have perpetually forgotten something. I hope one of those continues for a long time, although I'd settle with both of them staying should they so desire.

Neither of those are helping with the general gloom this winter seems to have brought with it. Other than a few bright moments, it's been deeply, deeply dull. But the days are getting slowly longer which has to be a good thing. I'm hoping they'll drag me out of this murk and make me want to get up and do things again. We shall see...

But yes, I shall try and write more as soon as the mind is willing and the body agrees with it.

Belonging

2010-12-27T09:04:00.003Z

I feel I should write some grand summation of the year that's gone and detail my hopes for the year that is yet to come. I shall spare you that though. As I said to a friend recently, do you really think the Universe gives a stuff if we change a number on a piece of paper or our computer screens?

There are no longer any grand plans for me. I have things I intend to go and do and to go and see, but that's about as visionary as it gets. Apathy has sadly become the guiding force in me in recent times and yes, I fully realise that this is a rather pathetic state of affairs, but there we are.

I will instead float along and see where the wind blows me. And in that, there is one thing I hope for. I want it to blow me far, far away from here. One thing has become painfully clear.

I don't belong here anymore.

The Great Cold

2010-12-23T14:34:00.002Z

I think this fits quite well.

But... the Moomin geek in me has a few points to make. Too-Ticky is female in the books, and is based on Tove Jansson's life partner, Tuulikki Pietilä. Moomintroll's bath robe is actually blue. Oh and Little My wants to make a muff out of the squirrels tail.

Just a few points to set you on your way. I'll be the one hibernating under the dust sheets and trying to avoid the Lady of the Cold.

Radio Silence

2010-12-05T19:56:00.004Z

Afraid the brain isn't feeling that much like writing anything meaningful at the moment, hence the silence for the last few weeks.

Nothing terribly eventful has happened, which is of course good news, seen as I am now Rebif free! The providing company came and picked up my last few remaining shots of it ant the one full sharps bin I had left. It felt curiously like I was splitting up with someone who, in trying to help me, had kinda screwed me up.

It's becoming very clear though, just how lousy I felt taking this stuff. My brain and body are slightly 'Um...?' and wondering where the flu-like aches have gone. This will take some getting used to I can tell you!

And yes, I have everything crossed that things continue like this, as it's really rather nice.

As for how I'm filling my evenings now they are needle free? Well I'm discovering just how much of a therapy music is for me. I'm working on learning the piano again, and thanks to some wonderful software called Mixcraft and a little box to connect my guitar to my computer, I now get to play on stage with Rammstein!

This is them playing live, with two guitar tracks of me playing along mixed over the top. I'm quite proud, mostly because the only instructions I've read so far were on how to find the guitar tuner in the software.

I'm rather enjoying myself with this so watch out for more!

"There Is No Spoon"

2010-11-12T21:29:00.003Z

A friend (and fellow MonSter sufferer) put me onto this little analogy.

I think it's probably the best explanation of how this 'thing' is. And if you want to get your head around it all, have a read and wonder just what it would be like when there really are no spoons left.

The Matrix

Verse Two

2010-11-05T17:56:00.002Z

Every one knows of the gun powder treason and plot, that should never be forgot. But there is more to that little poem. You don't hear the rest of it very much these days and I really can't imagine why that might be?

In honour of the anarchy of the day I give you, the quietly whispered, Verse Two

"A penny loaf to feed the Pope.
A farthing o' cheese to choke him.
A pint of beer to rinse it down.
A faggot of sticks to burn him.
Burn him in a tub of tar.
Burn him like a blazing star.
Burn his body from his head.
Then we'll say ol' Pope is dead.
Hip hip hoorah!
Hip hip hoorah!"

Everybody is Special

2010-11-04T22:08:00.002Z

"Everybody. Everybody is a hero, a lover, a fool, a villain, everybody. Everybody has their story to tell..."

"The flames of Freedom, how lovely, how just. Ahh, my precious Anarchy... "O beauty, 'til now I never knew thee"

Enjoy your Fifth everyone.

"Think Your Safe"

2010-10-31T20:18:00.002Z

So much for the doctors appointment.

He gave me quite a good examination around the area of my battle scars, scratched his head a bit and then came out with the wonderful line 'I think you're safe and they're probably nothing to worry about.'

The slightly non-committal tone of his voice didn't really fill me with much faith. But the upshot is it's either do nothing or have them sliced out, presumably in some sort of Alien-esque 'chest buster' type operation only on my stomach.

Curiously, neither of those options sound particularly enticing. And given the 'dynamic' response time of the NHS, opting for surgery will, for the foreseeable future, be the same as doing nothing anyway. The only real course of action is to keep an eye on them and see what happens.

Is it wrong that this, so far, has involved me trying to think of a way to compile a database of lump size, location and soreness?

I'll apparently be seeing the nurse in a couple of months anyway as I got a letter from her this weekend basically stating what we talked through at the appointment. So it'll be a chance to get her take on it all after a little while of monitoring things. She rather nicely describes them as 'nodules' which is mildly entertaining.

There is, however, a slightly troubling turn of phrase in her letter and thinking back to the appointment, in what she said there. The word 'progression' was mentioned a great deal.

The general rule of thumb is that roughly ten years after diagnosis, you step silently through the veil into the realms of secondary progressive MS, where the relapses are rarer, but the thing takes on a steady progression of existing ailments.

I imagine it to be like riding down a hill towards a thorn bush with slightly iffy brakes on your bike. You know you can't really stop or how long it'll take you to reach the bottom, but regardless, you know there's a crap load of thorns waiting for you there.

The nurse did say that the four years since I was diagnosed was a short time for this to happen, but I've been habitually early for things all my life.

I hope for once, I'm not early this time too.

Lumpy

2010-10-26T19:34:00.003Z

Hrmmm.

It's been over a week since I stopped doing the Rebif. I would say so far so good, but I previously discovered scar/lump seems to be spreading.

Shall get it checked out Thursday morning, as it's in a spot that hasn't seen a needle in about 3 months and it was definitely smaller a couple of weeks ago. Perhaps something has set up home in there and is gradually expanding it's empire?

On the plus side, I'm not missing the injections and have been taking the first steps on the Swank diet. It looks like it's going to be quite good really, but I'll write more on that next time. Right now my brain is giving me slightly nervous looks after forcing it to spend all evening reading about iPhone apps.

There are oh-so many of them!

Finito and The Future (in Three Songs)

2010-10-17T15:08:00.004Z

I'd have liked this to be how things worked out...

...but sadly, they didn't like me, so instead we have...

Simple truth is, the Rebif shots are wrecking my body so it's time to stop them. Given that there really isn't much else out there at the moment, this leaves me feeling somewhat unarmed and vulnerable.

There are the other three drugs of the CRAB family, Copaxone, Avonex and Betaseron, but given that bits of me now resemble a relief map of the Alps, the opinion of the health care professionals is to take a break from them entirely.

It's going to be a case of sit, watch and wait to see what happens. There is a chance it will kick off a relapse, but I figure I'll fight that battle should I need to. Meantime, I intend to work at a non-drug 'treatment' based on the advice of a friend and the work of a certain Dr. Swank.

I think this one explains why... sorta...

Don't worry though. Pan-fried genitalia won't be on the menu as I don't really like red wine and red meat and fats are out under Dr. Swank's guidance.

But as they say, den du bist was du isst, so lets see how it works out.

Boom

2010-10-05T19:54:00.002Z

I realised last night that I'm actually running out of places I can stick a needle into myself. The famous 'BLT' zones are basically just patches of pure sore. I went for some 'L' action last night and decided to opt for the manual approach rather than the sledgehammer injector.

There was, it's fair to say, much pain.

Were it not for the fact that the evidence points to these things really helping me, I'd kick them into the long grass in a second. Still, maybe the nurse'll be able to offer some advice when I see her next week.

Till then, have some exploding babies.

Blah

2010-09-30T19:46:00.003Z

Not really in the mood to write much at the moment, so here's some music that fits the occasion.

Although for the record, I'm starting to fucking hate needles.

Absence?

2010-09-19T18:11:00.003Z

I think I need to avoid visiting the MS Society's pages for quite a while. Whilst there are a lot of good folks there sharing good advice, there are also some fucking idiots.

I would quite happily stick my fist through the faces of a few of them and I don't like that. They reinforce my growing belief that we are a complete waste of atoms and the world would be so much happier if we all just went away.

But then, if you walk away, would anyone be there to stop them? And is it really worth bothering if you decide to try?

Perhaps it would be better if I just went away and left them all to their stupid little games.

Trouble is, were I to do that, I'd have the nagging little voice that lurks in the back of my brain telling me how bad an idea that was. It'd say, 'You might be able to help someone there and doesn't that make putting up with all the idiots worth it?'

I do wish I could shut that little shit up at times, but it's probably for the best he keeps on at me. In a world where my faith in so called humanity erodes on a daily basis, it's just about the only thing that keeps me here.

The Mind Blanks

2010-09-14T18:47:00.003Z

I came across this again, in a round-a-bout sort of way today. It's one to park the brain on for a while and ask yourself, how do you feel about it?

My right hand is aching, sore and a mass of pins and needles. I hope it won't come to anything, because as of right now, I think the poem, and it's subject matter, sounds so very peaceful.

Senseless

2010-09-11T20:38:00.002Z

In my usual way, I've nose dived into reading about depersonalisation to try and find out as much as I can about. The truth is, there isn't that much out there too be found. It is generally linked to anxiety, but in my case, I'm certain I don't have anything like that.

I did come across and interesting article though on the website of the charity Anxiety Care. They give a bit of an overview of the whole business and then touch on some of theories about it.

The following bit caught my eye.

Research also reports that, when severe, a main psychiatric condition, these periods of unreality may last for weeks or months, causing much distress; and that when depersonalisation occurs at a disorder level, sufferers have been known to self-mutilate. However there is an interesting observation in one article that, at disorder level, depersonalisation can occur in response to severe trauma or self-mutilation.

On this subject, the Institute of Psychiatry site suggests that self-mutilation might be in response to sensory problems such as numbness where the sufferer may be experiencing a lack of tactile responses and, presumably, self-mutilates as an extreme way to be able to feel his or her body. This site also states that depersonalisation sufferers may experience ringing in the ears or the sensation that the volume has increased in every day activity around them.

Now I have no plans to self-mutilate, but due to the MonSter, my tactile responses have gone majorly to rats. I have perma-numb hands and patches across my legs where I'm sure you could stick me with a knife and I wouldn't know about it. My hands are the worst as it feels like I have tight woollen gloves on all the time.

The point about the volume having increased in every day life, well, just ask anyone who knows me and my uncomfortable twitchiness at anything other than quiet TV volumes and... well, you get the idea.

I've no clue if this is responsible or not, but it's an interesting idea. The lack of feedback from your senses causes you to withdraw from things because you can't feel them and connect with them in an ordinary manner.

The article also goes on to suggest carrying a 'DP kit' around with something very familiar and something very tactile in it. This is something friends have suggested too so I will see if I can generate something. Trouble is, I'm not sure I have anything I am well connected to. I can't think of anything that I could take with me in case of emergency moments. There must be something, but I can't think of what.

The tactile thing is easier though, but it will have to be something I can actually feel. I'm thinking a metal screw or a nail or something cold and hard that you can extract senses from. Sandpaper has been suggested too so I might try that and see how it works out.

I've no idea if any of this will help, or if I'll just look like a lost freak quietly fiddling with a bit of sandpaper in the corner as people sidestep around me. I figure it's worth a go though. I just need to find a familiar item.

I let you know if I come up with anything.

Out of Body... Murder

2010-09-08T19:36:00.003Z

I think my amitriptyline dreams have kicked back into full swing. Last night gave me one which was, frankly, chilling yet appealing in a sinister way.

It began with me asleep on some sort of sofa bed. It's red and the fold out section is a dark grey colour and there seems to be a lot of green involved in the general colour scheme of the room.

A car pulls onto the drive - a silver one. With a shriek, the two girls who apparently live here - no clue who they were, but one looked like a younger (i.e. pre-train wreck) Britney Spears - run into the kitchen almost hysterical with fear. They are gasping something about 'He's here! Oh god, he's here!'

I turn to look out of the window and see a man dressed in a black suit and wearing dark, aviator glasses climb out of the car. He looks alarmingly like a younger Edward Woodward and a cream coloured scarf is around his neck.

Above all, he does not look friendly.

I hear a sharp tap on the door and, deciding being confronted by a nasty looking man whilst in bed, wearing only a pair of shorts, is probably not a good idea, I decide to move. I need to go upstairs to find a t-shirt, only the staircase is past the door, where the man is visible through the distorted glass.

With no option I bolt for the staircase hoping he hasn't seen me. I stand, trembling on the landing when suddenly the letter box snaps open and I see his fingers reaching inside.

I bolt upstairs and begin tearing open cupboards searching for a knife I know is in there somewhere when I hear a crash as the door is kicked in. With this, my hand wraps around the handle of my old hunting knife and I pull it out of its sheath just as the man grabs me by the shoulders.

With no effort, I turn and push him backwards, out of the bedroom door and onto a curiously black landing where a dark grey wooden banister blocks off a drop down to some unknown depth. I push him right up against this and then notice that his fierce anger has faded and now there is only fear in his eyes.

Without thinking, I stick the knife into his side, just below his ribs.

Then my viewpoint shifts. I am no longer in the physical me. I am watching me standing on the landing, holding a bloody knife. My vision then shifts again, down away from looking at the physical me, back into the lounge, over the sofa bed and into the kitchen where a scene of horror greets it.

The girls, in order to try and implicate the man in some wrong doing, are covered in blood. To get this, they have killed and dismembered their dog; it's bloody remains stuffed into a clear plastic box in the middle of the kitchen floor. With blood and gore dripping off them, they calmly walk out of the kitchen, across the lounge to the foot of the stairs.

My vision follows them and once there, it looks up to see physical-me, splattered all over with blood standing in front of the ruined remains of the man. His chest hangs open. His arms and legs are stripped to the bones in places and as my vision moves again to focus on the knife as the physical-me is holding, the physical-me pushes it into his neck. His head tips back and a long, thin fountain of blood sprays out of his mouth and into the bathroom next to me.

The physical-me turns towards my vision and the girls, smiling. My vision does not approve of this, not because of what the physical-me has done to this man, but because of what happened to the dog. That was just wrong.

...and then I wake up.

Strange really, but not an entirely unfamiliar feeling. And by that, I don't mean the callous slaughter of someone, but the out of body feeling. The feeling of looking at yourself from the outside and having no control over what you are doing.

That feeling has been given a name - depersonalisation.

Guess what it can be a cognitive symptom of?

And guess what people who know more about this than me think I might be having episodes of?

Yay me.

Re-Licensed

2010-09-03T20:05:00.002Z

Ah the joys of dealing with the DVLA when you have a medical condition!

Today my license returned to me after two months of deliberation by the people in Swansea over whether or not I am fit to drive a car.

The good news is, apparently I am. The bad news is, apparently they only think I am for a year.

They've changed the three year license I did have to a one year license which basically means annual angst every time you have to send the thing off.

The reality is I can carry on as if nothing has changed. But with a three year license, there was at least a little comfy zone to be found in the middle when you didn't have to worry about losing your wheels. Now each August, I have to hope that the doctors I see tick the right boxes if they think I'm ok to be road bound, and the doctors DVLA employ agree with them.

So basically, "Annual August Angst" is set to be the theme of the summer from here on in.

I should probably get a t-shirt made with that on.

Scar Tissue

2010-08-18T18:31:00.003Z

Someone asked me today if I knew how well the disease modifying drug that I take, Rebif, was working for me. I had to think about my answer for a moment.

Before I started taking it, I had two, possibly three, relapses in a year. Since beginning it, I've had none in two years and three months, so in that respect, I'd say it's doing its job pretty well. I did of course respond to the above question by saying this - as far as I'm concerned, it's working.

But whilst I spoke, my mind was ticking over the situation in which said question was asked. The lady asking it, at the moment she asked, had a needle in a vein in my arm taking two small bottles of blood out of me. Every six months I go and see her so they can check the drug isn't killing my liver. Last time I had to go back as my results were 'high' but seen as no-one got in touch with me after that, I assumed it was all ok.

I have a small scar on my arm where the needle went in today. I have a large collection of them around the sites I inject the drug into. My stomach looks like a small war has taken place there, both above and below my skin. There are pale pink areas that sport angry looking scars. Below the skin are lumps of knotted tissue or... something that are so tough the needles simply bounce off them. My thighs have 'cat-claw' scratches on them and small, tender lumps that hurt like crazy when you bash them against anything.

It seems the drug 'working' comes at something of a price. The scars in my brain that cause this silly illness are being joined by ones on my body.

Sounds depressing, huh? Well I don't mean it too. It was really just one of those moments where you realise what something you try to ignore has actually done to you.

It also makes me realise how lucky I am that after nearly four years of this thing, all I have to worry about are some lumps and bumps, and a slightly fractured mind.

But still, each night that is 'shot night' I sit and stare at the thing for five minutes thinking 'Shit... this is going to hurt!'

And in a semi-related... thing, System for Sonisphere next year please.

Also...

2010-08-07T12:01:00.002Z

...in another quirk of oddness regarding branded and generic drugs and their prices, I recently picked up another prescriptions worth of the things.

It was a private prescription so I expected the generic type and I paid the full amount myself - a meagre £10.68.

Curiously, the pharmacist supplied me the branded version, which should have cost three times the price.

I don't really understand people and their silly rules.

Metal

2010-08-05T20:11:00.003Z

I woke up this weekend. That is to say a part of me did.

Around ten years ago (maybe longer, I try to mentally deny how old I am), I was a long haired, metal loving rocker. I hung out in the grim clubs with the black walls, held together by duct tape and fed off the energy in 'The Pit' and would limp home, battered and bruised but oh-so happy.

Then, much like my long hair, that part of me slowly disappeared. I forgot just how much fun it could be to plug into that primal bit of you that happily leaps around like a psycho, whilst having your ear drums torn open by a few thousand Watts of sound.

I think part of it was the wonderful camaraderie to be found in 'The Pit' - even though you're basically battering each other all over the place, you still looked out for each other. I recall getting pretty much into an all out fight with someone whilst 'Smells Like Teen Spirit' played. When it finished, we hugged each other and cheered! Was rather special.

My weekend at Sonisphere has made me realise how much I missed all that and how much I want - how much I need - do it some more. I had the most fun weekend I've had in a long, long time. I met some great people. I heard some great bands. I had a great time!

There was a slight gremlin in the mix though. Or rather a slight MonSter. See... whilst I know I have this thing and never try to hide it from anyone, I rarely, if ever, use it as an excuse, except perhaps when I drop a plate or a glass. So naturally I went to the festival not giving it a thought.

I don't think it liked that very much as after the mile plus walk from the car park in the heat and humidity, the standing around all day and the little bits of bouncing around I was doing, I felt like someone had driven over me in a truck. I ached everywhere and, as is the way when the body gets frazzled, my right arm was dead from the elbow down and my left wrist ached like someone had snapped it.

It was, in short, nasty.

I found that quite an interesting moment, in my typically geeky and analytical way. It's the first time I've ever really encountered something that I couldn't do as well as I could in my younger days. Granted, part of that is that I am getting older, but this was something more. It was a MonSter rearing it's head.

It was, in short, a shock.

Still, despite of all that, I still had a fantastic weekend. But it made me come away and realise that perhaps I should stuff my pride into a sack and admit to myself that I can't do the things I used to do so easily. They had 'accessible' facilities at the festival (although the rumour is that they weren't that great) and I'm sure I could have used them and it would have made my life a lot easier. In truth, it never really occurred to me to do so, so yeah... pride, ignorance or idiocy - take your pick there.

But as said, I still had fun. The energy of these things is utterly amazing and the more of that I can absorb, the better. I can't really find words to describe what the music does to me there, but it's really rather spectacular. It woke up the part of me that would dive around the After Dark club, swigging warm beer and trying to avoid the needles strewn over the bathroom floor.

I liked it.

Next time though, I shall try where possible, to make it easier on me. Hopefully that will mean more energy for bouncing and rocking and beering and... everything.

So I shall close with the song of the weekend for me. And believe me, if these guys are there next time, I will be front and centre and clad in furs and warpaint.

Battle-Fucking-Metal!

Jump to the Left

2010-07-28T20:38:00.003Z

I'm heading off to bounce around in a field for a few days. It should be utterly amazing. And there is also the potential to be part of a world record. Friday at 4:30pm, the festival will attempt to break the world record for the most number of people doing The Timewarp at once.

Complete WIN!

"The morality of my activities escapes me"

2010-07-17T16:38:00.006Z

Utterly amazing job by Raph at Montana Tattoo in Bath. Already lined up a date for the next part of the jigsaw and it's going to be fantastic!

Who Watches?

2010-07-07T21:04:00.001Z

"At midnight, all the agents and superhuman crew go out and round up everyone who knows more than they do."

Essential

2010-07-03T10:40:00.001Z

Should I be worried when I get a mail shot from a health clinic offering to stick bits into the veins in my neck (CCSVI treatment for the curious) and they have typos in the very first line of the message?

Can't spell, but you can trust us with your brains!

Legalized

2010-06-26T12:18:00.002Z

Seems that people have finally got around to licensing Sativex, the product derived from cannabis. It is intended to help alleviate pain and treat spasticity in MS patients.

It's been rattling around for several years now, and I believe you could get it prescribed on a named patient basis. But there was always a fair bit of coughing and mumbling about it due to it's derivation from the 'C' word. And yes, pretty much every MS doctor and nurse I've ever mentioned the 'C' word too has said without doubt, it is the best thing going to treat nerve pain.

Sadly no-one told the politicians or the medical councils. Or at least they didn't until now, so this is a good move. Apparently there is a downside though. It's meant to taste like complete crap! But hey, if it works, you can probably put up with that. A spoonful of sugar and all that sort of thing.

By the way, is it just me who thinks that song is about LSD?

Bean Counting

2010-06-12T17:15:00.003Z

An interesting observation about the workings of the NHS here.

The drug I recently started is quite old and is therefore generic. This means anyone can make it and as such, the price for them is quite cheap. The first batch I picked up of it, I paid for it myself and two months worth came out cheaper than an NHS prescription charge (£7.20).

There is however still a branded version of the drug, made by GlaxoSmithKline, although quite what is chemically different about it from the generic brand, I have no idea.

The glaring difference between the two comes in the price.

I picked up a pack of 50mg tablets (56 in a pack) and was given the branded version. I duly paid my £7.20 for the prescription charge. A bit of a bargain considering the cost to the NHS (and therefore the folks of the UK as tax payers) was £33.35.

Had I been given the generic version the cost would have been £3.73, netting a mighty £3.47 profit for the tax payers.

I have no idea why they don't dispense the generic one. I can only imagine the bean counters were on holiday when that decision was taken.

Trapped

2010-06-09T19:51:00.002Z

In the words of the doctor I saw on Monday, 'You have trapped a nerve in your spine!'

All I can say is it bloody-well hurts! And I am not looking forward to getting up tomorrow. This morning's effort was a close call between standing up and throwing up.

So here's something to take my mind off it. I think I'm still in love with these girls. Makes me wish I hadn't missed that concert where they held a raffle to win a night with the drummer.

Self-destruction

2010-06-04T20:30:00.003Z

You know people with MS are a curious breed.

Float on by the MS Societies forum and you will see endless pissing and bitching and squabbling over people's pet treatments and half-hatched conspiracy theories over drug barons ruling the world.

So forgive me if I indulge in a little 'venting' here. A message for the people who seem hell bent on undermining drugs which are proven to be effect.

Shut the fuck up and think about what you are posting.

If you want to make a point at least be balanced!

Considering we are all in the same boat here, it might help if we all paddle in the same direction! Where I outside looking in I would be giving it up for a lost cause and moving onto another project. The squabbling and pissing about that people seem set on doing is, frankly, pathetic! Believe me, school playgrounds teach better lessons about co-operation than can be found amongst people with MS.

But then MS does affect the brain, so perhaps it kicks off the stupid-ass gene in some people? I honestly don't know. But what I do know is that stomping up and down and bad mouthing things which can and do help a lot of people, just because you don't agree with them tells me an awful lot about the sort of people who make such posts.

I think I'll let Denis say the rest.

On Hold

2010-05-29T05:56:00.002Z

Some of you may remember me rabbiting on about the review of prescription charges here in the England, for those of us with long term medical conditions. Note I say England there as charges are already gone in Wales and will soon be gone in Scotland.

This took place last year and the findings were meant to be reported in November, but nothing appeared.

Well, they were finally published this week and the findings are both good and bad at the same time.

The conclusion of the report is that if you have a medical condition which lasts for longer than six months, then you should qualify for free prescriptions basically meaning you don't have to pay for any medications you require. This is of course good news for those of us who have such things.

The bad bit is that they have basically turned round and said 'This is our recommendation, but... there's no money so we can't do it. Sorry!'

In the current economic climate, that isn't all that surprising really.

Now the real stinker in all of this is that had the report been published in November, then the economic conditions back then were viewed as being more 'favourable' to help implement such recommendations. But, of course, not a peep was mentioned of it, thank-you-so-very-much-Mr-Brown-and-chums!

It is somewhat frustrating all this as, in a typically British way, we're left with a half-arsed, confused and inconsistent system where the recommendations of people asked to look into it won't be acted upon. Granted, there is a bigger issue of the fact that country is up to it's eyeballs in debt but still, we manage to muddle things up like only we can.

There is talk of a spending review happening in the autumn (sound familiar?) where this could surface again and to be truthful, it wouldn't surprise me if the new government popped this one onto the table quite soon as it's a surefire popularity winner for them. We shall have to see what, if anything, happens with this.

I am in a fortunate position in that I can afford to pay for my prescriptions, but it is something a lot of people in England struggle with. The final line of the BBC article I linked above sums it up quite nicely. The punitive sums of money recouped from prescription charges really don't amount to much. So is it really worth 'taxing the sick' to get them?

Energy

2010-05-21T11:14:00.002Z

I have energy again.

I don't feel perma-knackered.

I don't have the perma-munchies.

I don't ache anymore.

I realise now just how utterly crappy I had felt on the drugs I am now almost off.

They did what they did but I now see just how much you have to pay for it.

Jury is still out on the new stuff as I won't be up to a 'therapeutic dose' for a little over two months, but I have to say, it is quite refreshing to not feel like a zombie any longer.

New

2010-05-15T09:11:00.002Z

Aaaannnnndddd so we start another new drug! This time, an old one called Lamotrigine.

Old tends to be good because:

a) There's been years of studying it so people know what the side effects and risks are with it;
b) It's generic and therefore cheap - I got eight weeks worth on a private prescription for less than the cost of an NHS prescription fee (which is £7.20).

Still, this stuff necessitated a quiet chat with the pharmacist over it as it comes with a 'black box warning' over some of the side effects. In other words, it can royally screw you over.

It can cause a rare complication known as Stevens-Johnson Syndrome, or SJS to its friends. I advise you NOT to Google that one if you've just eaten. It's like a horror movie, believe me. This is preceded by a rash so I'm now on a full body inspection every evening to check for anything untoward.

It can also cause you to become anemic, leading to bone marrow death (and therefore your likely death too) so I have to watch for feelings of tiredness, unexplained bruising and fevers. This one might be a bit tricky to spot as a combination of MS meds, the MonSter herself and my generic clumsiness means feeling knackered and bruised happens quite a bit. Still, I do sort of know my strange feelings so hopefully anything out of place will be spotted.

These side effects are, thankfully, extremely rare but still, they have to warn you about them. Hopefully I won't have any trouble with this stuff though as I have a good feeling about taking it.

We'll see how it does.

Changing?

2010-05-03T19:56:00.002Z

I have a review with the doctor next week. It'll be a chance to review the drugs and see how things are sitting. I have 3 months worth of notes to pour over with him and almost 3 months worth of questions to ask. Hopefully the doctor will have at least some of the answers.

Personally, I don't think they're doing what they should and I'm wondering if a change to one of the other alternatives might work better? These things are meant to be a bitch to get off so that could be entertaining. I suppose it's now just a case of seeing how things go and what the man in the know suggests.

Idjits

2010-04-26T18:35:00.004Z

Warning! A rant follows so look away now if you don't want to see such a thing.

Ok, let's start with the girl on her cellphone ambling leisurely across the road with not a care for my on-coming car.

Let me give you a simple physics lesson here. You are on foot. I am wrapped in approximately one tonne of metal and moving at thirty miles-per-hour. I have airbags, crumple zones and all manner of safety devices which aim to do their damnedest to protect me should I happen to hit anything.

You have nothing.

If I hit you, I win and you get to spend the rest of your life drinking your meals through a straw. If you're lucky that is. I suggest you think about that and next time, pay attention. And an arrogant fit of swearing at me and puffing out your chest in my direction may, next time, force my foot down onto the wrong pedal.

Chances are you'll hear me laughing as you go sailing over the bonnet. Rest assured I'll reverse back to see how you're doing. I mean, I'd hate to leave a job half finished now, wouldn't I?

Now then, to Mr. Volvo driver who decided it would be fun to pull out into the on-coming traffic and overtake everyone who was sat waiting for the traffic lights to change.

You nearly hit my car with your piece of well honed idiocy. Speeding off and making spurious signs with your indicators as if you are about to turn, because you're scared I'm chasing you really didn't work, did it? Next time you pull a stunt like that, I hope you hit something hard and immovable, like say a tank, because, to be frank, you deserve it.

I do hope you never get to infect the gene pool with your own particular blend of stupidity because, god knows, it's bad enough in there already.

And to the van driver who decided that nodding slowly towards me after your decision to not brake at a roundabout forced me to skid to a halt in the middle of one to avoid you impaling me, your politeness failed.

I suggest you'd be better served to actually pay attention to what is going on around you before you force it all to avoid you. And you really should get your brakes or possible your brain checked out because, lets be honest here, at least one of them wasn't functioning properly at the time of this little incident.

I shan't a bad word about the doctor I saw today though. He was very nice and polite. He was also, sadly, utterly lost about the problems I was describing.

You can sort of tell when they reach that point because they suggest you take a blood test.

Oh, joy!

"I can feel it"

2010-04-21T13:47:00.001Z

I can feel it. My mind is going. There is no question about it. I can feel it. I can feel it. I can feel it. I'm a... fraid.

Good afternoon, gentlemen

Sometimes, I wish I could live in happy ignorance.

Tumbleweed

2010-04-14T19:42:00.002Z

I shall take the ensuing silence regarding the recent blood test to mean that it threw up no revalations for me. I'd have expected a letter or a phone call by now had there been any thing positive from it, so I think it's safe to say it was a negative.

That said, I seem to be having one of those premonition type spats at the moment. Wandering around the grocery store today I reminded myself that I really should clean out my freezer. I arrived home to find that I'd apparently left the door open from last night, defrosting pretty much everything inside. Something of a waste, which I never like, but at least it got cleaned out.

So who knows? Maybe tomorrow a letter will turn up giving me some news? To be honest, it wouldn't surprise me if it did. The world has been a very strange place for me this week and I think I might have found a reason why. It could be a new little trick that the MonSter has up her sleeve, but I'm not sure yet so I'll have to wait till I have some answers first.

The trouble is, I'm not entirely sure who to ask.

Persistence

2010-04-11T16:34:00.002Z

I was told recently that I am a very persistent person. In spite of having a fairly low... alright, -really- low tolerance and patience threshold, even when at the peak of frustration, I persist and find a solution to the problem. And before anyone prods me, these were the words of another person, not me.

This weekend saw an example of this. It was, as ever, something suitably trivial. I'd decided, in a fit of excitement, to try and renovate the bench that is in the garden. It's had no love for years and consists mostly of rotten wood and rusted metal. So yesterday, with the sun shining, I set about it.

I recently bought myself a little electrical multi-tool for tinkering and making trinkets and jewellery pieces with. It came with a set of cutting discs so I thought they'd be perfect for decapitating the rusted bolts and prying them out of the metalwork. And indeed it worked rather well and came with a satisfying shower of sparks as it cut through the rust.

The problem came when I'd finished and wanted to put another accessory on there to grind off some of the rust. It seems the heat generated in cutting and 'welded' the cutting bit into the tool and no amount of effort would release it. I spent much of the afternoon and evening trying to get it out of there and ended up with only very achy arms and the sad realisation that I'd probably be ordering another tool today.

And then I slept on it and that persistent thing kicked in. So there was I, first thing this morning, before even the toothpaste taste had faded from my mouth, dismantling the multi-tool into its component bits and levering the bit free with a pair of pliers. Put back together, the thing is good as new.

I went to bed annoyed at this and woke up determined to sort it out. I suppose this is the sort of thing that the person's comments were referring - this sort of fanatical persistence that I develop when I am unhappy with something and need to set it straight. Or at least set it straight in my eyes.

It is, or at least should be, a good thing.

Why is it then that it makes me so utterly tired?

Why is it that above all else, I wish sometimes I could just give up?

Logic FAIL!

2010-03-29T19:26:00.003Z

Went to see the doc today for a bit of a chat over various things, one of which was my concern at the lack of a 'panic button' or emergency contact.

He calmly explained that as a first port of call, he would be the best option. However his logic was a little iffy. He stated that if I was in complete meltdown and 'unable to function' I should book an appointment and come and see them. Apparently the facility to organise yourself and transport yourself to the doctors remains even one is 'unable to function'.

He meant well at least.

I also had the blood test for the Hughes syndrome today too. Will be a while before any results are in on that, although I think they're pre-determined to be negative. It was quite entertaining seen as the tests required a quite extravagant amount of 'claret' to be supplied - 8 test tubes full to be exact!

In the words of a wise man, 'That's nearly an armful!'

I must be getting hardened to these things however, as after my first ever blood test, I nearly passed out. Today, after having 8 of them, I was fine, and practically skipped out the surgery. I did not even need a sticky plaster on my arm.

Or to be more truthful, I asked not to have it, because it bloody hurts ripping the hairs out of your skin when you peel it off!

Shine in My Direction

2010-03-27T19:46:00.002Z

I am in love, hooked, addicted, smitten, potentially borderline-obsessed, fanatically devouring every note and utterly savouring this gals album.

One of the best things I've heard in an age!

God help me.

Bye Johnny

2010-03-24T16:24:00.002Z

Some of you may remember me posting a while back about John Hicklenton, the comic book artist, and the film he made, 'Here's Johnny' chronicling his battle with the MonSter.

Well today, I stumbled across a forum post today, and then a news piece, saying that last week, he died, taking his own life in a Swiss clinic. He was 42 years old, having been diagnosed at the age of 33. That's nine years.

Pat Mills, the creator of 2000AD, broke the news via the comics forum saying that some of Johnny's last words to him were 'MS - you have a week to live, you've met someone you shouldn't have fucked with!"

He had done a huge amount for highlighting MS to the masses and showing just what it can do to you, and I find it desperately sad that it ended like this. But having watched his film and read interviews with him, it's clear it's the only way it would have been for him - going out on his terms.

But still, it sucks.

News has been slow to come out over this, and a part of me is hoping the big channels catch on to it; they certainly did his movie so I think they owe him this at least. People need to know.

So yeah, not much else to say really other than bye Johnny. Your Nemesis the Warlock is still my favourite. I hope you find peace wherever you are now.

And to the MonSter, there's only really one thing to say.

FUCK. YOU.

Redux

2010-03-13T19:30:00.002Z

I'm most delighted to say, I have myself another ticket to see Rammstein! This time it will be at the Sonisphere festival at Knebworth, which could be truly epic. I just hope their full on explosive show can be brought to the festival arena.

Believe me, if it does, I'll be the one starting a religion to follow them

Entertainingly, the first day of the festival is rumoured to culminate in a Rocky Horror show fancy dress evening, with Alice Cooper playing the night out. Given the fairly typical British summer weather, that'll be an evening of mud wrestling in drag.

Oddly appealing that.

Hughes

2010-03-04T21:02:00.003Z

Well... today was the day of the annual neurologist visit and I have to say, it was a good little appointment. As I haven't been having any MonSter related issues, our session was filled with generally chit-chat around the wonderful world of MS and the treatments available for it.

Me being me, I toddled in there with my sheet of questions (thankfully committed to memory so I didn't look a complete dork!) and asked away.

We chatted around the current crop of DMDs and the ongoing fuss over their supply via the risk sharing scheme (in short, a fudge designed to get drugs which do help to people who need them).

We chatted over new drugs that are on the horizon; the oral therapies that look to be more effective than the current crop of DMDs, although can come with some fairly hairy side effects.

We chatted over the subject of CCSVI, the new idea that MS is caused by a narrowing of veins in the neck. The doc was nicely open-minded on it and said that whilst sceptical, he believes it needs to be fully investigated first.

I then floated in a little query over something I'd spotted on a news piece a few days ago and had subsequently done some digging around on. The news piece was on something called Hughes Syndrome, which also goes by the name 'sticky blood'.

Essentially it is a condition whereby your blood tends to clot too easily and can therefore lead to severe headaches, thrombosis, strokes and a raft of other things, amongst which is 'MS like' symptoms such as numbness, visual problems and loss of balance. There are reports of people diagnosed with MS finding out years later that they in fact had Hughes syndrome and once on treatment for it, using something like aspirin to thin the blood, they made very good recoveries.

The reason I asked the doc about it is that the test for it is apparently quite straight forward (a blood test) and I wanted to see if he thought it was worth doing? He initially though that I would have had it done already, but on examination, he couldn't find any results amongst my notes. In the spirit of adventure he said it was not a problem and duly signed up a blood form for me to get tested.

Now I should point out that this is really an academic exercise as the chances of me being wrongly diagnosed are as close to zero as makes no odds. But a part of me is still curious as my first brush with this whole MonSter situation started with me being fed into a brain scanner as an emergency case due to severe headaces. Oh and did I mention there is a family history of strokes?

Sadly though, the evidence is stacked very heavily in favour of MS. Had I been diagnosed based on symptoms and MRI scans then there could be chance, but I had a lumbar puncture done and oligoclonal bands were seen in my spinal fluid.

You don't get that with Hughes.

The doc also pointed out that every patient he has diagnosed with MS has been tested for this and of all of them, not one has come back testing positive.

So based on that, I think it's fair to say that chances of me being snatched from the jaws of the MonSter by a simple blood test are on the slender side. But still, the test will be carried out and I shall know the answer for sure in the not too distant future.

By my rough calculations, I'm far more likely to win the lottery than get a positive for this thing, so there really is no point getting excited about it. I'll just nod quietly at having one more question answered.

Oh and I might go and buy an extra lottery ticket, because you really never know until you know.

14 Days

2010-02-11T13:27:00.002Z

I got my latest delivery of Rebif yesterday, and tucked away inside the bag was a letter from the manufacturers. It seems they've updated the storage instructions for it.

According to the letter, you are now able to store it outside of a fridge for up to 14 days, provided it is kept below 25°C. This means no more faffing with ice packs when you go on your travels. Well, not unless you're heading somewhere really hot!

But yes, some good news with this as it does make travelling a bit easier with it. Now I'm just waiting to hear about the electronic injector for it as it does sound rather spiffy!

Sailing On

2010-02-04T20:13:00.002Z

A fun thing to report on here.

The drugs are still rattling on at full strength and I am sailing the seas of Seroquel, whilst trying to enjoy the view out the window. Not 100% sure they are working properly though so will have to see in a couple of weeks when I go for a review. I do at least have just one pill to take for them now after the docs swapped the dose around. Big thumbs up for them!

Not sure I've had any side effect problems with them, other than feeling a bit dopey in the mornings. Nothing show stopping though, so that's good news.

Was very dopey this morning due to an extremely late night jumping around to the sounds of some excitable Germans - I went to see Rammstein.

I've seen a fair number of bands in my time, but it's easy to say that these guys are in a league of their own. Their show was more theatre than music with some truly wonderful moments of shock, horror and general mayhem sprinkled liberally throughout.

I mean seriously, how often do you get to see baby dolls with lasers for eyes being blow to pieces in front of you? There was something horrifyingly delicious at screaming along with the song as their little limbs flew around the place.

It was, and this is no exaggeration, an amazing evening. These guys are masters of what they do, and no-one else comes close to doing it the way they do. If you get the chance, go and see them. You will not regret it for one second!

Full Dose

2010-01-25T15:14:00.003Z

I clawed my way up to a full dose of the new meds on the weekend. So far, so good too, in that I haven't had too much trouble with the potentially grim side effects. Yes, I feel pretty tired and yes, about two hours after taking them I can barely keep my eyes open, but those aren't anything that can't be worked around.

There's one more curious one that could well be linked to the final upping of the dose, and that's some major head-spin dizziness going on every time I move. It's worse when standing up and the all time peak of it is getting up in the morning, which has now become a slow, deliberate act as opposed to an excited spring out of bed (which I, naturally, always did!)

Hopefully that will clear up in a day or two as, from what I've read, it is primarily associated with a change in dosage.

Oh yes, there is one more thing. The doctors surgery arsed up the prescription for me last week, giving me the smallest dose pills you can get rather than the actual higher dosage ones that I should be on. This means that 'med time' of an evening consists of taking eight, fairly large, pills. It feels almost like you're trying to overdose every single evening!

Here's hoping they got it right this week when I go back for a refill. I shall keep you posted.

Stop throwing things!

2010-01-16T08:32:00.002Z

Got me an iPod this week and was delighted to find one of my favourite albums of all time lurking on iTunes!

And bits are on Youtube too, so here's the worst rock and roll band in the world. Oh and you might not want to listen to this one at work without headphones.

Quelling

2010-01-11T21:43:00.002Z

So I'm onto day four of the new meds and I think they are working. I was completely terrified at the thought of stuffing the first pill into my mouth, but I eventually did it. It was almost disappointing when nothing awful happened.

Did it make me sleepy? Not really, but once in bed and with the lights out, eleven hours passed without me even noticing. Did it make me hungry? A little, but not so as I feel the urge to stuff my face with junk food. It does actually feel a little like being stoned.

Or so I'm told.

Still, early days. I have to get up to six times the dose I'm on, so there's plenty of time to turn into a fat zombie. Here's hoping such things are avoided!

New Meds Get

2010-01-08T09:30:00.004Z

Drugs supplied by Dr. NHS no problem at all! The doc I saw was most excellent and said anything recommended by private referrals, he'll be happy to pass through the NHS, which is grand!

I sat and read the side effects last night and they were somewhat dissapointing. I did like the one that suggested you immediately call an ambulance should you suffer a fit.

I sort of wimped out of starting them last night as they're meant to seriously wipe you out and I sort of wanted to be up and functional this morning. There was ice and snow to deal with so driving whilst doped would not be a good idea. Curiously, most of the ice was on the inside of the car, with barely a frosting on the outer glass.

Still, tonight is pill popping time so I'll let you know how they go. Well, once I wake up for course!

Good Cause

2010-01-05T20:02:00.002Z

I have been called about the research I popped my name in for. Just have to choose a date and then I'm in for interviews, questionnaires and blood sampling stuffs.

Fun to think I might help some people with this.

Something New Year

2009-12-30T21:33:00.003Z

I can't be arsed to write anything spiffy and celebratory for the coming new year. I shall, hopefully, be sound asleep when it creeps up on us. There will be no fireworks, no champagne popping, no nibbles, just me, asleep. Is this a bit sad? Well maybe, but as said, I really cannot be arsed with watching a bunch of numbers change on a TV screen, or listening to a clock chime.

Will the next day be any different from the present one because of this? No, not at all. Time moves on, largely ignoring anything we do within it's passage and any faux festivals we choose to impose are really just us trying to find an excuse for a get together. That is, of course, no bad thing as we should get together and celebrate 'stuffs' every once in a while. We are after all technically remarkable creatures whose brief moments on this earth should be cherished and enjoyed.

Emphasis on the 'should be' in that last line as right now, my brain is decidedly off cherishing and enjoying much of anything other than sleep. It's been pre-occupied for most of the last year with battling the rusting leviathan that is the National Health Service, trying to get somewhere with a 'blip' as it was so eloquently described.

It took pretty much the whole year to start to get somewhere and it isn't over yet. I now have to go and beat medication and other things out of our beloved NHS and having passed the time in the rather comfy business class seat on the flight to Stockholm reading the N.I.C.E guidelines which spell out what levels of treatment you can expect from the NHS, I have a pretty good idea what I should be getting. All I can say is the doctors better have a very good excuse for not giving them to me because my patience is wearing a little thin.

The collection of days that we lumped together and called 2009 have been a tiring experience for me in many ways. A few days in a wintry land with some of the best people I can think of, helped restore some energy to my flagging system, and of course the mellow family Christmas (complete with a dog who can now un-wrap presents) also helped.

But now I'm staring into 2010 and seeing a rinse/repeat of the same crap that last year served up, and that voice that sits in the dark inside my head is saying 'Why the hell are you even bothering?' It makes a good point, but I'm not ready to give up just yet. It may sound pretentious but there is still some fighting spirit in me and there are certain battles that I am keen to win. I suppose I have a point to prove, to myself as much as anyone else - not that anyone else is looking or even remotely interested.

So to 2009, I will say thank you. You made life, interesting. I feel I should hate you, but I don't. You were, in more ways that one, the cosmic twin of 2006 when a certain MonSter first crept up on me. I hope you're done with me now and don't have any surprises lurking as part of your closing scenes. You gave me answers to a good many things, but posed your own set of questions. So I think I'll just say I've had my fill so please, move along, there's nothing more to see here.

To 2010, I'm tired, I'm angry...ish and I have something of a headache, so if you know what's good for you, don't give me any crap!

And to everyone celebrating or doing whatever it is you want to do this New Year's Eve, please, do it quietly. I'll be asleep.

Little White Ones

2009-12-28T12:11:00.002Z

This made me laugh. Amusing, yet somehow classical.

Moar Meds

2009-12-23T11:16:00.002Z

I am on the way to some more medication.

I was sort of hoping that I would have the Christmas break to ease myself into it, but due to the foibles of the health care system, I shall have to wait until I can get it via the NHS.

This is because, thanks to me having to go through a private referral to actually get somewhere, the doctor could not write me a prescription for the meds themselves. I'd have had to pay for them myself and at around £230 a box, that would get very expensive, very quickly!

It's hopefully going to help and will hopefully provide some entertainment on the way as, from my research, I've found the stuff I am going to be on has been given various street drug names, my possible favourites being 'Baby Heroin' or... well, see the song below.

I figure if it doesn't work, I can probably peddle the pills on the Internet and retire to somewhere nice.

A Wonderful Dose of Anarchy

2009-12-20T19:13:00.002Z

'nuff said.

Blocked

2009-12-13T21:54:00.003Z

It's curious. This is supposed to be the last week in work before the Christmas vacation. You know, the one where no-one really does anything productive and you go down the pub most lunchtimes and often stay there.

I'm going to see friends at the end of the week, which should be great fun too!

Emphasis on the word should there. See, I have a return visit with the doctor this Wednesday to talk over stuffs, and most likely choose some new medication.

It's hard to see past it to the fun stuff that is quietly hiding on the other side. My road to the festive fun is firmly blocked at present. Here's hoping Wednesday sees the road block moved.

Brain Emptying

2009-12-04T18:33:00.003Z

Not much to report from here as nothing much has been happening. We're sliding slowly towards Christmas, and I'm slowly sliding my way to a worrying understanding of the interaction of varous medicines and their side effects. I'm pretty sure when I see the doctor again in a couple of weeks, I'll be the one telling him how they work!

Still, new adventures are afoot and a new place to empty one's head (literally!) has been created. If you want to see what goes on in the minds of myself and some dear friends, go take a look for yourself at Ivory and Horn. It will be a repository for our dreams.

I think it could develop into a rather fun little project. After all, my dreams are drug fuelled.

Champion?

2009-11-22T20:54:00.002Z

Came across an interesting advert in a magazine this weekend. An medical research programme, looking at brain based things, is searching for 'Research Champions' to get involved with their work. They want to come, interview you, find out all they can and then hopefully give you the chance to pass on your information and experiences to others.

Given my brain is, in a word, interesting, I will hopefully be a good candidate to get involved. I have a sneaky feeling there is some interesting information nestled away inside of it that will hopefully be of use to people.

We shall see what happens, but this 'feels' like a good thing to be doing, so here's hoping it all happens for the good. Who knows, I might even get a research paper written about me? That would be very special indeed!

Yes, I'm weird, I know.

Vaccination

2009-11-20T17:38:00.004Z

I has had me the anti-swine flu vaccination thing. The media seems hell bent on whipping up an epic storm over it all, but by and large, it was a fairly mundane process.

Yes, the doctors surgery was filled with legions of feral children who ran rampant through the halls whilst their disinterested parents sat texting people on their cellphones.

Yes, the appointment was late.

And yes, it was all made up for by a very cute nurse sticking a needle into my arm.

What can I say? I quite like injections into the muscles. It's like scratching somewhere you can never reach.

Any side effects you ask? Well, nothing really, although it does feel like someone has stuck a needle into my arm (cute nurse, I'm looking at you...and smiling). Funny that, don't you think?

Everyone I know of who has had it has complained of a sore arm afterwards, and one person had a very sore one. For me it really just feels like a bruise - a little uncomfortable if you rub it, or lie on it, but otherwise, ok.

What did make me laugh with it all was as you trotted out, rolling down your sleeve, they handed you a little leaflet, tucked inside of which was a vaccination card saying what you'd had, when you'd had it and which arm you'd had it in. The nice touch with it was the phone number that said 'Please call if you have an reactions!'

I really don't think anyone will be calling that number as if you sift out the press sensationalism, this thing is quite safe. And besides, for someone like me, which would you rather? A sore arm, or a life threatening illness?

Here's hoping you too get a cute nurse as part of the deal.

Want

2009-11-18T18:08:00.004Z

Listening to a lot of music lately. It's helping sift through the soup of medicines research I'm currently on.

I'm learning interesting stuff though. Did you know, for instance, that one shot of the Rebif costs £57.32. That makes the bag I received today worth a little under £4,000!

It also lists some interesting side effects too. I quote:

"...blood disorders, menstrual disorders, mood and personality changes, suicide attempts, confusion and convulsions..."

Don't recall anyone mentioning that to me when I signed up, strangely enough.

Still, I want to get some answers on medicines, but that'll have to wait a little while yet.

Meantime, is it ok if I want these guys' jobs?

Ending in '...ine'

2009-11-14T20:22:00.002Z

Bit quiet from me as I'm off researching new medicines that I will most likely be starting around Christmas.

They have long, confusing names, all of which end in '...ine' and all of which have a crap load of side effects, none of which sound particularly fun.

V(ictory)

2009-11-05T21:46:00.003Z

I sometimes wonder if I should have been a doctor?

Happy 5th everyone! Go blow something up to celebrate history!

D(octor)-Day

2009-11-04T21:36:00.003Z

Eight months of faffing leads me to going to see a doctor at 8pm tomorrow evening, three years to the day since I landed up in a hospital bed. Funny that, ain't it?

Still, I think it will be a good visit and hopefully 'stuffs' will get sorted, or at least start being sorted - I'm under no delusions as to the speed at which these things progress.

But still, it's a start. I'll let you know how it goes.

Quiz Time

2009-11-02T18:25:00.002Z

So without giving too much away, I just got invited to participate in another one of those MS drug survey things. Pretty apparent for anyone who has followed developments in the treatments for MS, it was relating to the new stuff in the pipeline, such as the oral treatments for the disease.

I won't give away too much in case anyone gets the chance to do it, but if you do, then please give it a go! The more info they get on these things, the better they'll understand what we're after in a treatment.

You'll have to forgive me for sneaking out one little comment though. One of the options asked about which of the following side effects you'd be more likely to favour in a drug. The choices were 'a chance of hair loss' or 'a chance of a fatal brain infection'.

Hmm... let me think about that one.

Freaky

2009-10-31T14:12:00.002Z

I just had one of those 'Holy Crap!' moments.

Three years ago, I spent most of the year ping-ponging back and forth between various doctors trying to figure out what was going on. It culminated in me landing on my ass in a hospital bed feeling somewhat dazed and confused.

It was a Thursday.

I just realised that it was 3 years ago, this Thursday.

And this Thursday I will once again be in a hospital. I may question this guys professional ethics though if it features me landing on said ass in a hospital bed as I'm only going in for a consultation!

The Fifth

2009-10-30T20:40:00.002Z

It's nearly the 5th of November, a day I'm rather fond of. It's an absurd tradition celebrating the failure of a man who people these days wish would make a return.

It's also the focus of my favourite hero 'V' and yes, I have his mask hanging on the wall at home.

This 5th could be an equally memorable one. I usually spend the evening celebrating the history of my country by blowing up a little bit of it. This year, I will be sat in the wards of a private hospital chatting to a doctor.

Not exactly something I'd planned, but the good driving doctor called me back and said could I come on that day, so I said yes.

I might wear my V mask. I have a feeling it might help.

Private

2009-10-24T19:12:00.003Z

It seems to make progress in this part of the world, you need money. Or at least you do if you float in the mid-realms of discomfort. The NHS services aren't interested in seeing you if you're there. They just write letters suggesting you search the Internet for help.

Luckily, I have a back-up plan. It involves money, although not too much. Work has a private health care scheme that I elected to join. I have to say, I was always a bit skeptical if it'd actually be usable, due to having the MonSter around. So having chatted to the GP and decided that a private referral was the way forward, I nervously called up the health insurance people to see how it would float.

The simple answer is, wonderfully! Very nice, friendly people talked me through it all, asked a few questions, checked a few things, passed me the number of their preferred consultant (which I already had) and said go for it. They will cover everything, no problems, no worries.

This made me smile.

I called the consultant's number the next day, expecting a secretary with whom I could arrange an appointment. Turns out it was his phone number and he very apologetically explained he was driving, so couldn't quite check his diary.

This made me laugh.

So yeah, I have a hot line to the dude himself and will be ironing out an appointment in the next few days all being well. Good news for once and I finally feel like I'm getting somewhere.

In honour of this, a happy song featuring a werewolf-thing eating people!

Strike Two

2009-10-19T18:35:00.002Z

They said no, again. I don't know why or what has been suggested, but hopefully I will find out more on Thursday when I see a doctor to find out what happens next.

To say I am a little frustrated is an understatement. I might get the doctor to write back and append a P.S. which says 'This guy knows a lot about guns and bombs and stuff so, you should probably see him, ok?'

I'll let you know what happens. Meantime, some angry Iowa folk with a happy little tune for the occasion.

More waiting

2009-10-11T07:41:00.003Z

Another month passes and still no follow up from the doctor people. I'm beginning to wonder what I have to do to get seen by them? Maybe if I were to say, burn down a church or blow up a school or a bank they might be a bit swifter at seeing me. But nope! I'm an ordinary, honest sort of person and therefore you sink to the very bottom of the pile of detritus and wait your turn for all eternity.

And yes, I'm moaning about it because it pisses me off! Or that might be because I had more or less no sleep last night. I woke at some dark hour with the feeling that things were crawling about under my skin. I hope nothing is stirring in there! I had my flu vaccination yesterday though, so I'll blame that.

So here's a song for the occasion of waiting and wanting an appointment to come through. I always want Till's haircut. Sadly that is unachievable these days. Let's hope the appointment is!

Minor Victory

2009-09-23T17:49:00.003Z

Today, the director of public prosecutions delivered his 'clarification' on the issues surrounding assisted suicide in the UK. This came about thanks to one Debbie Purdy, a lady with MS who was seeking clarification as to what would happen to her partner should he assist her in travelling to Switzerland to end her life.

The rulings themselves are a little bit on the 'don't want to go there' side of things, but essentially spell out that each case would be examined individually but it spells out the range of factors that would be taken into consideration in judging each case. These are, for instance, would the assisting person stand to benefit financially from the death of the person they are assisting? If so, that's murder or manslaughter. Essentially it does what it says on the tin - clarifies things.

Throughout all of this, a persistent journalistic 'quirk' the BBC employed has annoyed the crap out of me. They have, in just about every article and news piece I have seen or read, referred to Ms Purdy as 'terminally ill'.

This is not true. MS is a condition you die with, not of.

So this morning, I flashed up the news site and read this little piece about her partner. Imagine my delight when I see her described as being 'terminally ill' in the text.

Straw, camels, you know the rest, so a swiftly penned complaint was whizzed off over the airwaves to the BBC to say basically, get your fucking facts right! This MonSter is scary enough without you sensationalising it for the sake of a headline.

And yes, I worded it slightly more subtly than that.

I figured that would be a bit of a futile effort so imagine my surprise when I got a reply from them at lunchtime today. It read:

Thank you for your e-mail. That article has now been amended.

Best wishes,

BBC News website

Colour me a nice shade of stunned! Go read the article and you will see not so much as a whiff of the word 'terminal' in there and it's about time too! I realise this is only a minor thing, and chances are the first words out of the newsreaders gob will be 'terminally ill' but I feel that in a small way, I made a few ripples that big fish took notice of and went 'oops!'

It's quite nice.

Counting

2009-09-21T20:56:00.003Z

Last few days (or possibly weeks) I've found myself counting pills as I shove them down my neck.

It's a depressing activity which I really shouldn't do, but I can't seem to stop. Today, for instance, will be a niner - that's nine pills in total. That's topped off with a the night cap of a Rebif shot.

I happened to mention this to a friend today and she said something I need to remember. She said, 'Imagine what it would be like if you didn't take them!' Simpler, maybe, but more likely to be a whole world of trouble.

Asking Politely

2009-09-12T20:01:00.003Z

The silence got an answer, and as expected, the answer was nope, not interested in seeing you.

Not great news.

Luckily however, I seem to have landed with a doctor who is determined to fight my case. He asked a few questions, did a bit of head scratching and then said he would 'ask politely' for them to see me.

Not quite his words, which were somewhat more forceful, but he assured me he would make it happen and that's good to know.

Now a bit more of a wait whilst the wheels grind into motion. I'm still not sure what will come of this and it may just hit a dead end again, but hopefully, under the watchful gaze of the polite doctor, it'll come though and I can actually get somewhere with this.

So while we wait, some music. And yes, I finally worked out what Kurt was singing about in this.

Silence

2009-08-27T18:45:00.003Z

A theme for the day is silence.

To all the people in the doctor's waiting room with mobile phones, those things come with silent mode for a reason.

They also come with off switches. I'm pretty certain the world will not end if you are out of contact for, say, half an hour or so.

So why not, next time you're there, try to explore all the features your mobile phone comes with? I'm sure you'll be very pleased with the results - those primarily being me not beating you to death with the crappy celebrity gossip magazines they keep in those places, when your phone rings at a ridiculous volume!

Silence also fits nicely with the referral to an un-named 'specialist' I'd gone in to find out about. It appears to have vanished into the ether. We managed to find the letter that had been sent to said specialist, but after 7 weeks, no word back to me.

The fact that said letter did not accurately reflect the problem at hand complicated things somewhat, but we'll worry about that another day.

Meantime, here are some fat Germans singing about things they really don't want.

Boxes

2009-08-16T07:30:00.002Z

I knew it!

A small piece on the BBC website about how the UK builds the smallest houses in all of Europe. Apparently our average new home size comes in at 76m2.

As said, no great surprise with this as this country is way, way too crowded. What the article doesn't look at is the total 'plot' area that the houses have - basically bugger all! Drive past a modern development and you will see houses crammed in so tightly that you don't have any space between you and your neighbours.

Believe me I'd be out of here like a shot if I could just take the health service with me.

Pills and Thrills and Bellyaches

2009-08-15T12:27:00.002Z

Some news about future developments in the world of medicines to help battle the MonSter!

It seems the people at Merck Serono are hoping to get a license for one of their other medicines, Cladribine to be used in the treatment of MS.

Cladribine is generally used as a cancer drug, specifically in treating leukemia, but a quirk of it (for want of a better term) is that it also is able to suppress the immune system - in other words, act in much the same way the Disease Modifying Drugs do in trying to slow down MS. With this in mind Merck are running trials on an oral form of the med for MS patients and have applied for licenses for it to be used as such.

From what I've been able to read, it would basically be a short course of pills you'd pop once a year, and that'd be pretty much it. The trial results show that it is very effective in preventing relapse and progression of the disease, and all that through just one course of pills once a year.

Sounds grand, don't it?

There are of course issues with it. From what I've read, a few of the trials patients developed cancer after completing the trial, but I really couldn't say if that was as a result of what the drug is doing or just bum luck on their part.

It does seem to be a factor in all the new oral treatments though, that they could come with some pretty nasty side effects. Fingolimod for instance has had patients on the trial develop skin cancer, but there's been no established link between it and this happening. Thing to remember with it all is these have been rare and if there was any real risk to people, the drugs would not be licensed at all.

Also, remember what the conventional DMDs can to you too. Just this week I had to go get my blood sucked out to make sure the Rebif ain't frying my liver. That was an interesting appointment as the nurse taking my blood told me that she too has MS and is also on a course of DMDs, although she couldn't recall which.

I did chuckle later that she explained to me her loss of feeling in limbs and strange skin sensations -AFTER- she'd stuck the needle in my arm! All I can say is she has a very steady pair of hands as I barely felt a thing.

So yes, some potential new cookies for us drug-heads in the not too distant future. Hard to say if they'll work or not, or what the risks will be, but I'm hoping they do what the makers hope they will. Popping a pill will be so much simpler!

Fingers crossed, eh?

Twenty

2009-08-01T16:49:00.003Z

I have finally just gotten to watch a movie I've been waiting twenty years to see.

Was around about twenty years ago I first got my paws on a copy of Watchmen loaned to me by a friend. I read it and wandered around with a slightly stunned look on my face for a long time afterwards.

It wasn't long afterwards that rumours began surfacing of a movie being made of it. In our geeky little way, we scribbled down who we thought would be best for each role - I picked Jack Nicholson for Rorschach, although that might have been influenced by his role as The Joker.

Of course those rumours never came to much at that time. They'd bubble up every now and again here and there, but nothing tangible. In much the same way, the book bubbled up for me too, like the copy belonging to a friend at Uni, which was missing some pages. I read that and thought 'I must get my own copy!'

I still don't own one.

And then the rumours of a movie firmed up, and sure enough it loomed large on the horizon. Naturally I was quite alarmed at this. What if they got it wrong? What if they changed it too much? What if it sucked?

I didn't go and see it when it came out because I was paranoid that a cinema audience would spoil the experience for me. Instead I waited and waited and today, I finally got to see it.

For me, sitting here now, there's only one word for it.

Perfect.

I'm currently in that state of foggy delirium that comes from being so utterly consumed by a film, that reality seems somehow strange and alien once the movie has ended. It seems wrong right now to think that the world is not how it was only moments ago and that somewhere, out in the cosmos, there isn't a naked blue man tinkering with watches or creating life. Or that a journal isn't sat in the 'in tray' of a newspaper waiting to upturn the global utopia and set us all back to being human beings again.

I almost feel the need to take up smoking so I can go have a ciggy to calm down then focus on trying to kick the habit.

I think instead, I shall be boringly British about things, and make a cup of tea. I might even risk raising a toast to the movie that, for me at least, was twenty years in the making.

It was so very worth the wait.

Thank you.

Diversions

2009-07-23T16:04:00.002Z

Haven't been doing an awful lot lately, hence the lack of postings. I've been enjoying a week off where the most I've had to do is iron some shirts and vacuum out the car.

It's been fantastic!

Oh yes, I've also been playing with new toys during this time too.

That and murdering people in showers.

Fabulous from Paranoid Apple on Vimeo.

You go girl!

2009-07-11T20:13:00.002Z

Wanna stand on top of the world? Well Lori Schneider is now able to show you the way.

She has become the first person to scale Mount Everest, with MS tagging along for the ride.

In her words, "Who you are inside... that's what's important. That will always be there, whether my legs carry me up a mountain or not, I'm still who I am deep inside."

Power to you lady. You are quite the inspiration.

Electronics!

2009-07-10T18:41:00.002Z

I found out today that Merck Serono, the makers of Rebif, have launched a new injection device, known as the Rebismart.

Yeah, ok, they ain't that great with names, but I have to say that it looks like rather a neat little thing.

This little widget holds a cartridge of the Rebif drug inside it, which is changed weekly - basically, that's three shots of the stuff. This means that it no longer requires the pre-filled glass syringes, instead storing the drug in the cartridges and using disposable needles which attach to the Rebismart when you take your shot.

The cleverness comes in that the whole thing is software controlled, allowing you to set the depth of needle, the speed of injection and the time it takes to withdrawn the needle from you all in the software on-board the device. This also means that it then keeps a log of your injections, logging the date and time of injections as and when you do them.

Now for some reason I can't quite fathom, the website says that it is not applicable to the UK or the US, but I have heard via the MS Society boards that people are being offered this thing over here already, which is good news. I did wonder if the fact that it holds the drugs inside it in a cartridge would mean that it would need to be refrigerated too. Not the end of the world, granted, but a little unusual for an electronic device.

If indeed it isn't available in the UK as yet, I can only assume that it is because of that refrigeration issue and instead would require the drugs and device to be stored in ambient room temperature. Still no word on leaving Rebif out of the fridge in this country however, so that could well be a spanner in the plans until they hopefully advise that it can be stored outside of the fridge.

In an interesting tangent, this tips a nod at the strategy people such as Merck are coming up with to 'tackle' the upcoming drugs such as Fingolimod which can be taken as a pill. One of the MS nurses I used to see said that in her opinion, this was the way of it with the companies producing the drugs you had to inject trying their hardest to come up with ways to try and make it as easy as taking a pill. I mean lets face it, at present, they're all much of a muchness in terms of performance, but if one involves needles and one is a simple pill, which do you think people will choose?

Still, this little device looks to be very good news for everyone currently on Rebif. I'm semi-hoping that I'll get a call soon to say one is on its way to me, but that said, I have no trouble with the Rebiject device.

But still, a new and shiny electronic widget would be rather fun, even if it does have a silly name.

Inside of a Raindrop

2009-07-07T19:42:00.004Z

I think I have a new favourite song.

Well... it's not 'new' - I've had the album for a while now - but it's sort of bubbled back up into the current play list.

It's a fantastic song, so here it is with someones very fantastic video to accompany it!

A Star?

2009-07-04T08:29:00.003Z

Anyone here a believer in astrology?

Here's what an astrological 'thing' said about me for the week of my birth:

You have a contrasting personality. A highly attractive personality and the need to be in the limelight but yet are not overly social and the need to spend time alone. You have perfectionist tendencies which show in every area of your life. You have extremely high standards for yourself and those around you. Sometimes your need for perfection can lead you to become obsessive compulsive. You are an over achiever due to your insecurities and viewed as highly successful. You have an intense personality capable of great achievements but are very indecisive and can take years to make a decision. You are emotionally complex, a cool exterior that masks your inner turmoil. You have a biting sense of humor and wry wit that you express in irony and sarcasm. You are sexually intense but have a hard time sharing your feelings at a deep level. Strengths: Attractive – Exacting – Cool Weaknesses: Indecisive – Scathing – Repressed .

I'm slightly curious what being 'attractive' and 'repressed' means but have been told that this description fits me pretty well.

I think I'll stick to astronomy to study the stars though. It involves lasers!

Be Prepared!

2009-06-27T20:30:00.001Z

Q&A

2009-06-22T19:41:00.002Z

Found a curious link lurking within the depths of Facebook (yes, I have a FB entry, now shush!)

A medical type group called Healthcare Professionals Voice were looking for people with Relapsing Remitting MS to take a survey about it, so I duly applied and got the mail this evening to do the survey.

It was quite interesting and from what I saw, it was aimed at trying to capture which benefits people most look for in MS drugs. I won't say too much about it here though, as the survey is still running and I wouldn't want to bias anyone who is yet to take it.

It finishes on the 25th of June from what I remember, so if you're interested in taking it, toddle over to the HCP website and hunt around and see if you can find it.

The people running it have promised to send me a 'reward' in the post so I'm curious to see what turns up. I'll let you know when it does.

And also...

2009-06-20T20:29:00.002Z

Whilst the day is standing still for me, I popped on a CD of a band (or rather a singer) I discovered by pure chance a few years back when I happened to catch one of their songs on a music TV channel.

Someone please tell me why I don't own all their records? They are without doubt, one of the best bands I've ever heard. Conor Oberst's brainchild of Bright Eyes are simply beautiful!

So whilst I'm ordering their other albums, check out this offering from them, and try and tell me afterwards you don't love them too!

Timeless

2009-06-20T19:33:00.002Z

Today has been a strange day. Nothing particularly extraordinary has happened, but it has been strange none-the-less.

My brain has been aching all day and my body has been busy. I've done the chores around the house, tidied the rooms up, vacuumed, dusted (and believe me some of the dust even had dust), washed clothes, cut the grass and even done a fair chunk of something I'm working on in the day job.

A lot of 'stuff' has been accomplished, in other words.

The strange thing is, the day has seemed to go on forever. It's as if it realised I had a lot to do and slowed up as it drove by me to let me get on and do it. It is midsummer's eve after all, so such things are possible.

But then I always thought tomorrow was the longest day?

And on such things, I thought about driving down to Stonehenge to watch the sunrise tomorrow. They open the stones up so you have free access for one night a year, and the weather is supposed to be fine too.

The trouble is they're expecting in excess of 30,000 people there! The police are apparently going in quite heavy handed with talk of unmanned drones flying the skies to keep and eye on things. There are even rumours of G20 style rioting planned.

Such things make me very sad. Is this crowded little rock really so miserable that people can't just get along once a year?

I really hope nothing happens there tonight. I won't be going to see it either way. That many people would give me a headache! Don't get me wrong, I would love to be there to see it. The trouble is I would want it to myself.

Eurotastic!

2009-06-17T20:20:00.003Z

Not a heck of a lot to report here, other than I'm currently spending my days at work in a rumoured to be haunted attic. No sign of anything paranormal though as yet. It's only temporary, but its really quite nice up there.

So meantime, here's a video that stems from something I never thought I'd want to watch over and over. It's the opening of the 2007 Eurovision Song Contest.

Yup, that's right - Eurovision, the joke that just keeps on giving.

Most entries are quickly forgotten (thankfully!) although everyone is grateful for a bit of Abba.

Personally, I prefer this lot, and this video is pure, simple, unadulterated WIN! The sparklers on the 'axes' are just... just... I have no words for how awesome it is!

Enjoy!

Tune!

2009-06-13T07:55:00.003Z

Yes, yes, yes, it's been far too long since I updated this thing. The time has largely been spent sweeping up the bits from my brush with whatever the hell it was that glomped me a few weeks back.

Work is about to go into warp speed for me so figured I'd stealth something in here before that happens, although I don't really have anything very exciting to report. I do have a very spongly new camera though, and if you wander down the right hand side of the page to the link for 'Pupperoo Tales' you'll see what I can do with it.

And yes, I bought myself a digital photography guide book because despite the manual telling me how to do everything with the camera, it's somewhat lacking in the why you would need to do something and what it all means. Watch that space for improvements!

So yes, on with it, but first a song which I was eager to see on MTV2 this week, but for some reason they arsed up the feed and played a different track, then carried on as if nothing was wrong. Fantastic tune from a fantastic CD... which I really need to get again after my copy if it wandered off!

Bonus points if you can tell me what 'LSF' stands for!

Kasabian - LSF (Video)
Uploaded by Orelie__NoDoLLs. - Music videos, artist interviews, concerts and more.

Hanging Vultures

2009-05-30T12:34:00.003Z

Not much to report other than the fact I have contracted a 'plague' of some sort. My stomach is currently doing some interesting things and I haven't eaten a proper meal since last Tuesday.

To say I feel crap is an understatement.

Still, loafing in front of the TV feeling lousy lets you discover some very excellent songs. Wasn't overly keen on the earlier stuff by these guys, but I love this song!

Enjoy!

Twisted

2009-05-26T20:41:00.003Z

I've posted previously about the bizarreness of my drug induced dreams. Well, they're getting better! I thought I'd recount two of the latest for you to enjoy.

Sunday

A series of elderly people are involved in freak crashes whilst travelling in ambulances. Two people, a husband and wife, are thusly hospitalised from the ambulance crash (...which of course they would have been anyway as they were in the ambulance in the first place!)

The crash causes severe brain damage to the husband of the couple such that he no longer has motor control of his body. In other words, he can't move a muscle. No speaking, talking, eating, or nothing. Quite why I'm in a position to observe this, I couldn't tell you, but there I was, watching him and his wife being wheeled around a hospital ward.

For some reason, whenever he sees his wife, the begins barking like a seal, which I suppose is the only sound he is capable of making given his new immobile state. This leads me onto a philosophical/intellectual wander as I consider the nature of memory, deciding that the brain is wonderful thing if memories can be stored in lumps of 'mush' that is no longer able to function in all other respects.

Cut to me being informed that more people have died in an ambulance crash. A heated debate then ensued with a college from work (as in my real life work) as to what a tragedy this was! My response to his concerns is to state that I really couldn't give a shit. I didn't know them and now I never will so, so what? People die every day and do I weep for them? No, so why should I care?

...and then I wake up.

Monday

A dream involving what appears to be a holiday to Spain with the family and two dogs. The plane that we travel in appears to be some sort of bus, with golden retrievers sitting in every seat, so naturally boarding for take off etc. is quite tricky.

Cut to Spain, where for some reason we're all in the one hotel room, which is more or less a carbon copy of the lounge of the first house my parents bought. There is much faffing around going on, including de-fleaing of the two dogs we brought.

This is being done by the Froot, who insists that the method she is doing is the best. It consists of an aerosol can that pumps out a thick pink foam that she is slowly coating each of the dogs with. All I can see of one is a confused brown eye peering out from a sea of pink foam.

I then decide I need to sleep and try to settle down in the one-room with everybody else, and so consequently utterly fail, get grouchy and try to find somewhere else to sleep.

And then I wake up, with no clue as to where I am or what day of the week it is.

And there you have it! Fun, ain't it? I'm sure a psychologist would have a field day, but I rather enjoy them. I mean if I have to pump this crap down my neck, there needs to be some perks!

Faith

2009-05-16T06:39:00.002Z

An epic band, with a song that isn't 'Epic'.

I really want to see these guys on their reunion tour.

Faith No More - Ashes To Ashes
Uploaded by bebepanda. - Explore more music videos.

Doctor Doom

2009-05-05T17:43:00.002Z

Well actually the tabloids are calling him Doctor Death, but that just sounded gloomy.

The doctor in question is Dr. Philip Nitschke, an Australian (in)famous his work in assisted suicides. He made the news by getting a law passed to assist suicides in the Northern Territory of Oz, but it was repealed shortly after.

Nowadays he writes books on the subject, most notably the 'Peaceful Pill Handbook'which is a discussion/guide book on the subject. I wonder if he's been approached by the 'For Dummies...' people yet?

Anyway, this one kicked off a bit of a stink (as expected) but the good doctor did not let such setbacks stop him! He spent his time developing euthanasia machines which he alleges is 'flawless'.

For those interested, it's a plastic bag, some rubber hose and a BBQ gas canister filled with nitrogen. He delicately terms the plastic bag an 'exit bag' for that extra bit of class.

Apparently oven bags are best.

He's currently touring to spread his word and pass on his handy hints to aid in your passage from this mortal coil. He almost didn't make it into the UK as customs decided he had to explain himself in some detail, but they eventually let him in and he recently gave his first public speech.

It was in Bournemouth, which probably tells you something.

Now don't get me wrong, I'm not trying to belittle this subject at all. It is one that I think should be out in the open and should be discussed. That said though, I do find it borderline comedy that you have a man going around plugging 'machines' built from BBQ gas canisters and cooking bags as your one way ticket out of here.

But I'm not laughing at him, or his machines and exit bags.

I'm laughing at the fact that this is the only discussion that seems to be out there being had on this subject.

Is a nitrogen filled oven bag really the best ending our society can give to those in need?

New and Improved

2009-04-22T18:52:00.002Z

So I finally heard back from the local health care trust people about the situation with the MS nurse availability. Remember that one? Me living in a different county meant that as of April 1st, I'd no longer have access to the nursing service.

As you'll have read, the nurse herself said that that was irrelevant and to call her straight away if there were any problems, but now I've had that rubber stamped from on high. It seems that yes, there is a plan to change the nursing service, but the primary care trust people want to appoint a nurse specifically for the area, in theory making the service better. Meantime, everything carries on as normal and will continue to do so until they have appointed the new 'team'.

Seems there's a bit of a disconnect between their own ideas of how things are working and those of the doctors who tell patients to 'write to the council' but such is the way of things. It looks as though everything is indeed, covered.

Now here's hoping I never have to call any of them!

Daze

2009-04-15T11:07:00.002Z

There are some days where you feel you can do anything.

There are some days where you feel you can do nothing.

There are some days where you just don't know what to do.

Today is one of those.

I blame the drugs.

Nothing

2009-04-08T18:40:00.002Z

Not much to say so here's a song about no-one.

Nightwish - Nemo
Uploaded by laura64

Scarred

2009-04-02T20:53:00.002Z

I didn't post this earlier, because I wasn't thinking straight enough to remember.

It sums up the cotton-wool-brain-baking-haze that meds bring.

I like it.

Shifting

2009-04-02T11:16:00.002Z

Those of you who read the BBC news website (or possibly listen to/watch the news) may have seen this one bounced about on there. It's a new website called Shift MS and is the brain child of George Pepper who was diagnosed with this bundle of fun in 2004, aged 24.

He found that there was a general lack of information and support aimed specifically at young people who have been diagnosed with this illness. The website borrows (for want of a better word) a lot from the social networking sites, such as facebook and aims for a fun and lively feel and I have to say it's rather nicely done! The little post-it note style on their forum is a really neat touch!

I'm not strictly sure I still qualify as a 'young person' but regardless, I have signed up to the site and am enjoying it! So yes, everyone should go check it out as the world very definitely needs people like this with ideas such as this one.

In other news, my plans to reduce the medication have fallen further in that a lengthy discussion with my doctor resulted in her suggesting I actually up the dosage I am on. I have a 2 week test window to see how things go, and then a follow up visit with her, so I've dutifully been shoveling a larger dose of the stuff down my neck each night and then passing out about 2 hours later.

My brain feels like someone's wrapped it in cotton and yes, I feel tired, but I shall stick at it. Here's hoping it helps.

Minor Trauma, Major Nurse

2009-03-20T21:47:00.002Z

I was expecting a delivery of Rebif yesterday. My little calendar held to the fridge by a colourful magnet has a black box over the 19th of March, showing a delivery date. Just as well considering I had one dose left.

It was naturally slightly alarming when I come home to find no delivery had been made. It got worse when I called the delivery firm to find out they have no prescription for me anymore - the previous one had not been renewed and a new one, from the new hospital had not been sent to them.

Can you say panic?

Let's just say that there wasn't a lot of sleep last night. The thought of not having this stuff was really alarming. My body seems to be finally getting used to it and to have it stop, well... I can almost hear the MonSter cackling with glee at the thought of it.

A call to the hospital this morning lead to a call to the MS Nurse who turned out to be a real hero. It seems that she had been off ill and during that time, I had managed to slip through the cracks in the system to lie forgotten in a drawer someplace.

She quickly put things right, faxing a prescription to the delivery company (a different one) and calling me back to say that she wants to meet me as I'm her patient. I ask about what will happen come the 1st of April when I'd been told, my cover from her will stop? She said 'Call me regardless. I won't let you go until I know you're with someone else.'

Can you say wonderful?

It was so reassuring to hear that and to have someone racing around to sort things out for me that I nearly ran out of words to say, and that doesn't happen often.

So after a day of confusion, everything has slotted back into place. I called the delivery people and they were very very nice and very very helpful. The medicines will be here Tuesday, but if I have any problems, call them at once.

Want to know what the icing on the cake was? Apparently they don't collect a prescription charge for the medicines, so I don't have to pay anything for it.

I'd say that today was a good day. Here's hoping there's a few more to come as I was beginning to forget what they feel like.

Thoughtful

2009-03-15T21:07:00.003Z

So I finally got around to watching the documentary, 'Here's Johnny!' that aired a little while back (and I've mentioned here previously).

I have to say it was not easy viewing. Imagine staring into a dark pit, knowing that it contains all the horrors you can think of and knowing that you too are heading down into it, and that about sums it up. It's like some sort of warped sales brochure showing what the future could have in store for you.

As said, difficult viewing.

For anyone who wants to understand this 'thing' that is MS, watch this documentary. It puts across in words and ways I could never manage just what this 'thing' feels like to live with.

And on a dark day, it makes me realise I'm truly fucked. I get to enjoy a slow deterioration which will wear me down and creep into the world of everyone who knows me. They will get to watch me whither and waste away. And it won't be quick. It will be a slow, most likely dignity stripping, 'wilt' into nothingness.

Fun, huh?

It makes me want to scream at the medical world 'Why can't you stop this? Why won't you help?' It makes me wonder how much I could take before I finally lower my head and say 'Enough...' Since making the documentary, Johnny himself has become a member of Dignitas so he sees that moment approaching.

Don't panic. I don't have any plans to see that part of Switzerland.

I've always been a dreamer and you have no idea how much I hope that stays with me because that is the thing that keeps me wanting to fight this MonSter. It's the bit that is planning the colour schemes for the walls of a house in some foreign land. The bit of me that wants to play guitar like a legend. The bit of me that wants armfuls of tattoos and maybe a piercing thrown in here and there for good measure. The bit of me that hopes I never give up.

I hope I never lose that.

I don't know what else to say at the moment, but for those of you who haven't seen it, go watch the documentary. It'll be floating around online somewhere if you do a bit of hunting. If it does anything, it will help you understand.

So whilst I sit and think about colour schemes for said house, some music. An old classic given a modern twist for the Watchmen movie (which I -need- to see!).

The song makes me want to start a riot.

I like that.

Pills

2009-03-08T14:45:00.002Z

Well I got down to 10mg but couldn't quite cut the 'lifeline' to those things. Too much started to hurt to consider dropping them altogether. It was like all the little aches and pains that had hidden away due to the effects of the medicines suddenly saw their opportunity and crept out from the darkness.

In short, it wasn't very nice.

So I'm back on them, nudging the dose upwards again until I stop noticing it all. I feel a bit deflated about this really. It's a sort of nightly reminder that something is wrong, but I freely admit that's down to my thinking about the whole situation.

A good friend said to me recently 'I take the medication so I can feel normal!'

That's how I need to think too.

I don't take it because I'm broken.

I take it because I want to feel 'right'

Difficult

2009-03-01T20:02:00.002Z

It's proving difficult to say farewell to my little medicinal friends. I've had no problem dropping the dosage down to a meagre 10mg and therefore I'm sure I could come off without suffering any problems. The trouble is that it feels so wrong not to swallow those brightly coloured pills each evening that I have not yet been able to not take them.

I'm not sure what it is really. Possibly the attachment to the simple act of doing it. It's something that I've programmed myself to do, whatever the circumstances and now I'm asking myself to stop. Everything about that, feels so wrong.

It's possible there is some subliminal process happening whereby stopping taking them feels like I'm letting down my defences and a relapse of some sort is lurking in the darkness, ready to pounce once my armour is exposed. It's stupid, I know.

In reality, I just have a hard time giving up on things I believe in. I'll keep trying though, I promise you that much.

Downward

2009-02-26T13:54:00.003Z

So far so good on the amitriptyline drop off. From the weekend I've gone from 50mg to 10mg and nothing has blown up or fallen off.

Does it hurt? Yes, bits of 'it' do, but in an almost refreshing way. It's like 'oh hey, I can feel something there again!'

A'course the next bit is the worst, getting off it entirely. I plan to go to every other day first, then every three days and then (hopefully) kkthxbai to it.