My MS Blog

Drugs

2009-04-28T15:08:00.002+01:00

This is a long comment I posted on Tom Harris MP's blog in response to the 'raving Dave Cameron' pics...

I’m pro-liberalisation of the drug laws. Having looked at the evidence, its clear to me that Prohibition does more harm that good. It’s prohibition that puts, for example, £6bn through the black economy because it’s banned Cannabis. Its prohibition that fosters an environment of criminality around drug use - from smuggling and production through to stealing to fund use. Not to mention the fact that prohibiton directly funds Taliban-allies in Afghanistan as they produce 90% of the world’s heroin (a drug that after living in Glasgow and Brighon I can tell you is not glamorous, may keep you thin, but is a monster waiting to eat all but the very luckiest of users). We pay for all that through illegality.

With that in mind, do I care if Dave got off his face in the 90s? I have to say no as at the time almost everyone I went to school with was playing about with pot and ecstasy (although of the latter it was expected that some amount of permanent depression/brain structure changes - damage - should be expected through over induldgence, whether this was ‘real’ or ‘true’ or not…

More interestingly, I’m open that my drug use has included Cannabis, LSD, Speed, Coke and E. This would, for a 35 year old Uni Grad be pretty unremarkable. Where it gets interesting is in the preparation it’s given me for the drugs I now have to take for MS. If I have a relapse I get a steroid (mis-spelt) Methylprednisolone which can have psycho-active effects. If I’d not taken acid, I’d not have known how to approach such a 3-day trip, not understood how to recognise how thesubtle effects altering personality, ramping up intemperateness or aggression. I’d, in particular, not have known that (like Acid), an awful lot turned on the state of mind you have when you take it - fear is death.

And with respect to Multiple Sclerosis, LSD gives an excellent grounding in the position that you tend to find yourself in - that reality may not be presenting itself to you entirely accurately. I get holes in my field of vision that, becuase of the way the visual cortex functions, are mapped over by the brain’s VR until my attention is confronted with something (like a car - which is why I don’t drive despite having a medically restricted 4 year license) pops out of the blind spot. Which, philosphically, challenges your experience of perceptual reality in ways that, frankly, ONLY LSD had prepared me for.

I’m not recommending drugs but if you dabble, it would be wrong to dismiss you for those experiences. In a world where reality is not always what you perceive it to me, like it or not, but drugs can give you a good store of simulated experiences for handling that.

And don’t get me started on Medical Marijuana or I’ll start up about Sativex, Thames House and the GW factory in Portod Down…

NHS, Cancer drugs and money

2008-08-08T09:31:00.005+01:00

Arrgh its been a long time since I posted. I just thought that I'd repost a comment I maid on the beeb site over this cancer care money/drug debate shambles that's unfolding. People keep saying that if the money for the cancer drugs gets a patient 12 months of extra life but if that money was applied to a heart patient, they'd get 5 or so then you have to go for the heart guy and leave cancer dude to die. The logic of that is that I should, therefore, be executed by the state because a bullet is a one time expense of 4p whereas my interferon is an ongoing cost of £8,000 per year which also ensures I will need further medical interventions...

Added: Friday, 8 August, 2008, 07:04 GMT 08:04 UK

Hmm. So its all about money.

I have Multiple Sclerosis and the PCT funds my Beta Interferon, one of these expensive drugs you hear so much about (£8k per year). I will need this drug for many years, possibly decades. It allows me to work longer and pay more taxes. However, if its all about money, a 9mm bullet is about 4p and its application to my head would ensure that I needed no more of the money I and my family have paid to the NHS through our taxes. How is that any different to this?

Shaun, Newhaven

Comment thread on the BBC

'Positive' Discrimination

2008-06-27T18:03:00.006+01:00

This new positive discrimination thing is puzzling to me. Even before I had MS, going for a job meant taking the risk that you weren't the best and if you were as good as another candidate, it was going to come down to subtler things like who they thought it would most productive to work with (e.g. personality, face-fitting vagaries). Then I became 'disabled' (hate that word, a ship that gets torpedoed and can't move under its own power is disabled. I am a cripple, not a ship, I haven't had 'ability' 'dissed', I've had function destroyed. Crippled, you may say...) and it all got more challenging - what could I do and who could work with me without going as patently weird as my last employer in rural Sussex?

Now it turns out that being the best person for a job won't matter. Being a white male, employers are now positively encouraged to discriminate against me. Worse, I'm married (ick!) which implies heterosexuality so no browny points there. I'm hoping, in this bizarre identity-politics employment market, that having Irish ancestry will help (+ Ethnic points!) and, perversely, being a cripple makes me a minority and thus of greater employment tokenism value (+ Pity The Disabled points). I suppose I'm dismayed because I used to want to get jobs by virtue of being the best candidate. Now I guess I'll have to get used to ticking some bureaucrat's boxes!

The really, really perverse thing in what is already a pretty twisted matter, is that Melanie Phillips makes a fairly good pass at highlighting the iniquities and illogicality of this positive discrimination malarky. And I *never* thought I'd be linking to one of her posts!

Update

2008-06-25T21:21:00.003+01:00

Well I've now spoken with the Dignity in Dying media director and should be doing some interviews for them soonish.

Dignity in Dying

2008-06-12T22:25:00.007+01:00

Debbie Purdy has MS and is fighting to ensure that if she travels to Switzerland to commit suicide and her husband accompanies her, he is not prosecuted for 'assisting' a suicide. How 'accompanying' can be held to be 'assisting' is beyond me and, I hope, beyond the High Court Judges who will have to decide this case.

I expressed my support for this brave woman's case to Dignity in Dying and they have asked if I would be interested in doing some press interviews to put forwards this position. I've agreed to do a couple and to see how it goes and how everyone feels about it. I'm worried about my wife, mostly, as for rather obvious reasons she's uncomfortable with me having to contemplate suicide rather than being trapped in some shattered physical shell of a body with limited sensory input while clearly appreciating the necessity.

The idea of lobbying for it just confronts her with it in an uncomfortable way but I strongly believe that if I can do anything, anything at all, that means if I ever have to take the euthanasia option, I can travel abroad to do it and have my beloved wife with me to say goodbye without fear of her being prosecuted for 'assisting' my suicide and facing up to 14 years in prison then I have to do it.

The right to die

2008-06-11T19:20:00.004+01:00

I don't want to die but a time may well (60% likelihood) come where I develop a progressive form of MS and head inexoribly downhill. When I can't see, can't move and can't touch, frankly, I don't want to be around. I'm not squeamish about dying, I'm, squeamish about needless suffering.

What this woman is doing is to ensure that when/if I die at a time and method of my own choosing is to ensure that my wife won't be prosecuted for saying goodbye and/or closing the door behind me, let alone for accompanying me to a more civilised nation which permits me to end my own suffering.

To hell with the Christians and other religious fanatics who'd condemn me to suffer, trapped in my own dilapidated shell of a body and/or mind, to satisfy their beliefs. Fuck them and fuck their non-existent God.

Higher

2008-05-24T18:12:00.002+01:00

Well I've just taken my second dose; overall the first was alright but, perversely, I feel that my extensive youthful experiences with amphetamines and LSD gave me the intellectual tools to handle to psychological side effects. Wibbly-wobbly reality doesn't scare me after seeing the walls *breathe*. Man.

But overall, nowehere near as bad as I feared. Yeah, I'm uncomfortably high, yeah I'm scattier than usual but its only for three days and it does remind me why I stopped doing speed et al. Plus, its working. i do think/percieve that the hole in my vision is closing up, or at least its fluctuating within a smaller area of effect, if that makes sense. Damnit, I don't really have the vocabulary to explain what I mean.

Anyway, I'm off now to stomp about and annoy the dog!

High

2008-05-23T23:29:00.003+01:00

Took the first gram of steroids tonight. Mixing it with orange juice, it tasted like the amphetamies I played with extensively in my early twenties. It reminded me why I quit.

I then got quite high, like with amphetamines, but am now a bit weepy (side effect: mood swings) which I sort of find funny (side effect: mood swings). Oh and a racing heart. Great.

Attack!

2008-05-23T14:43:00.004+01:00

I've had a 'visual disturbance' (in this case characterised by a loss of some field of vision in the visual area associated with my right eye's upper right quadrant - I can't say my right eye as even if the issue is to do with my somewhat damaged right optical nerve, it could instead be in the image rendering area at the back of the brain where I've see huge lesions previously on an MRI) for now three days straight. Yes there've been fluctuations within that disturbance - sometimes it is larger, sometimes it is smaller - but there has been something there for 3 days. And that means it isn't a fluctuation but is instead an 'attack'.

I've hit the steroid button with my GP (well a locum as mine is away for a month. Grrr) so should be getting a prescription for ass kickingly high dose steroids this evening. If the chemist has them I shall be taking them tonight too. I'm not usually aprehensive about taking drugs. I took enough recreationally to lose the right to that. But I'm aware that i seem to have a shorter temper these days and am generally quicker to become emotional and am a bit worried about how that will interact with a drug known to induce insane rages in the sort of doses I'm going to be looking at.

Ah well, the wife is warned and I'm in the shed!

Work has me by the short hairs

2008-05-17T20:57:00.002+01:00

Well work has been completely crazy lately and will continue to be mental for the foreseeable future. I'm doing 6 or 7 day weeks but the money's great and while I'm well, I've got to get it where I can. Being an openly crippled freelancer is getting me 2.5x what I earned at my old firm for pretty much the same work. Sure, my skills have improved but not by that much!

Anyway, that explains the absence of posts lately.

I got ill a few weeks ago and am having severe fluctuations now while I still cough off the last of it. I have to wait until the fag end of June to see if I have an attack or not which is a tense wait but at least this time, if I have an attack, I can get steroids from my GP to knock it on the head. Sure, I'll still take whatever damage I was going to but it will all be over quickly, allowing me to continue accruing disturbingly large sums of money for bog standard PHP work.

Pain

2008-03-14T08:20:00.003Z

Usually, pain is caused when an injury site sends a signal along nerves to your brain and the pain centres contained therein. Pain killers, including opiates, work by blocking the transmission of this signal or at least degrading it significantly. However, there is a type of pain that is generated in the brain and not the body; it may *feel at though some part of your body is in pain but that's an illusion. It is all, quite literally, in your head. Painkillers can't block this pain and there is one class of drugs available (even on the NHS) to tackle this 'neuropathic' pain. The side effects are unenvieable.

I've had neuropathic pain before - usually its been the sensation of having a compass needle driven through the pads of my fingers. I have found, thankfully, that cannabis can keep a lock on it although I have to smoke pretty much constantly as the effects are only 10-15 minutes in this regard. My doctor has advised that if pot does the trick, stick with that as the prescription drugs are nasty.

Yesterday I had a really awful fluctuation in this pain symptom and my hands were wracked. I also manifested pain in my feet. Low on pot, i went through a few days worth in an evening in an attempt to dull this sensation. It worked, up to a point, but in the end I had to get really really drunk - not to dull the pain as in this regard, alcohol is a conventional painkiller, but to allow myself to become easily distractable so that my mind wouldn't remain focussed on what was happening to me. It worked but was the least satisfying drunk I think I've ever tied on....

Yesterday was, therefore, a bit of a shit day

Dazed and Confused

2008-03-03T18:43:00.003Z

Today I've been really befuddled and terribly easily distracted. This hasn't helped with work but has helped me relate better to my hyperactive, ADD puppy. I don't know if this is a new symptom, a predictable cannabis side effect, a spin-off from the Baclofen or something more benign and unimportant. I have only felt this way, and suffered the nauseating dizziness, since starting in on the muscle relaxants....

That would be annoying as they really help my foot/walking but don't help the whole balance or work thing. Its like being seasick!

Half way there...

2008-03-03T10:12:00.006Z

Okay, I'm about 20 pages into the DLA form. My PC has packed in so I need to jerry-rig a printer to spool off the supplemental material (lists of Consultants, mostly) and then crack on with the other half.

Its a bleak form focusing, naturally (I guess) on the negatives of your condition in turgid detail ('Just how fucked are you? How many times a day do you need help wiping your arse?' - these are the questions you become depressingly accustomed to when you become a cripple). Luckilly I trained as a lawyer so can handle Offical Bollocks Speak without wanting to blow my own head off - I do feel sorry for other people faced with this shit, though. I understand why its set up like this - to deter chancers/scammers and some legit applicants to keep the cost down - but it still sucks bigtime when you find yourself on the consumer end of it!

Disability Living Allowance & A Blue Badge

2008-02-28T19:19:00.004Z

There's a thing called the Disability Living Allowance which you get for being a cripple. Its a paltry sum, at most, designed to come in a mobility and a care component, but its the key determing factor (it seems) for the state to decide if you're a cripple. Registered Disabled is, it seems, a thing of the past and the local Social Services (with whom you would register) poo-poo'd it. They ask about it (DLA) on the application for Disabled Tax Credit (worth up to £4.5k and the end goal in this form-fest!), on the application for a Blue Badge for disabled parking (the only truly useful thing that the state can do for me is to allow me to park on double-yellows for up to 30 mins!) and so on. So while it's paltry, its still the keys to the kingdom.

So I did the parking badge application today and got that posted and have started in on the conspicuously user-unfriendly, 40-page epic, Disability Living Allowance form. I should finish it by the weekend at which point I will be waiting with baited breath.

Drugs drugs drugs

2008-02-27T10:18:00.007Z

After much faffing about and attempts to order, Boots finally got me some muscle relaxants, Baclofen, on Saturday. The maximum dose is 100mg and I'm down on 5mg - the smallest pill on the market is 10mg so I have to cut them in half which is good as the higher dose side effects can be show stopping - respiritory and cardiac depression. It can stop your heart and breathing, admittedly mostly in the elderly but still...

So I started taking them and to my immense suprise it relaxed my foot for the first time since I got some magic cannabis over christmas. This meant I could walk in a more mechanically-friendly way which in turn took the pressure off my arthritic knee. I know, I'm a wreck of a man. All of which was good. What was less good is that I was high as a kite all weekend. Absolutely spaced out - for the first time I could finally see what my peers had seen in Ketamine! Luckilly that passed by Sunday night and now its fine - either you build resistance to the side effects or I've got used to it - so at least I can work on it. Otherwise it will just have to be a naughty weekend treat where I relieve the pain and destress but have to vegetate in front of Dancing on Ice or Harry Hill's TV Burp... certainly nothing intellectually challenging!

The Swank Diet

2008-02-23T08:59:00.004Z

I'm seriously looking at the Swank Diet for MS. I'm trying to get hold of a nutritionist to see if I can get my saturated fat intake < 20g/day without giving up red meat. You can read about it here, though its referenced in a number of other places and books which is kind of what's attracted me to it.

It may be unpleasant but its got to be less unpleasant than being bed bound and incontinent. Such are my choices, I fear.

Long time no blog

2008-02-22T10:10:00.002Z

Okay I've been terribly slack and risked becoming a 'wannabe' blogger who starts well and then peters out. I admit it

I got over my attack in January - it passed in a couple of weeks which is down to the beta interferon, the cannabis or both. Since then I've made contact with my frankly excellent GP who got me appointments with both the MS Nurse and the new Consultant Neurologist. I don't see the nurse until the 19th March but the new Neurologist was dreadful. Proper old school - these are muscle relaxants, one of these 3 times a day, see you in six months. The whole clinical arrogance of 'you don't need to worry for I am great and I shall control your disease!'. Yeah, I wish it was that simple.

Turns out that the standard treatment for relapsing-remitting MS during an attack is high doses of IV corticosteroids. Nobody told me. Which is arguably negligent and makes up a good plank of my desire for a '2nd Opinion' (e.g. to see somebody else). There was more crapness around the subject of Sativex where he was either wrong in which case confidence in him is dented or he lied to cover his arse and protect his NHS status. Subsequent information about the guy he replaced, from within the NHS, strongly points to the latter.

Anyway a plan for this treatment is going to be put in place; I reasoned that a week in hospital spaced out on drugs that allow me to be a moody bastard for the duration beats the hell out of a couple of months debilitated and unable to earn money.

Meanwhile I'm trying the muscle relaxant (picking it up today) and have managed to score some viagra to address another little MS gift. The mind is strong but the flesh is weak, damnit! Tho actually I'm a bit worried about my mind since I read a load about the pernicious effects of MS on the intellect and am finding it tricky to concentrate atm. That's much more likely to be the cannabis, I fear! Still gotta KBO (keep buggering on).

Superstition

2008-01-12T18:30:00.001Z

So far my vision has stabilised; by which I mean it has got no worse and it has got no better (well, maybe a little - just enough to be adequately within the bounds of wishful thinking, anyway). I don't know if that's because this is merely a bad fluctuation or if its becaue the beta interferon is working to make the effects of the MS milder (and I did take an injection yesterday...) or if its because I'm throwing sufficient quantities of cannabis at it to stymie the effects.

And that's the problem. Maybe one of these things is working, maybe none of them are and this is merely a mild episode but because I cant know for sure, I have to keep doing all of them to ensure I get the beneficial effects again. I mean, what if I didn't do them and then suffered a serious attack? Why take the risk?

The rational bit of my brain kicks off at this point, skeptical of my mind's ability to construct a sketchy superstition out of inadequate evidence. People do tend to look for traditional causal relationships where none may exist. What if the pot and the rest is just a manifestation of that?

The horror is that I can't know but will probably get to find out with experience.

The Price of Illness

2008-01-11T15:52:00.000Z

I've been ill for a few days; I don't know if I caught a flu and my vaccinated immune system fought it off or if I just had a cold but I definitely had something. I'm pretty much better now but my MS has flared up in response to whatever the hell it was firing up my immune system.

What this means is that all my previous symptoms are flaring up (for up to 48hr periods) - I have shooting pains in my fingertips, a really stiff knee and ankle/foot and a big chunk of my vision fell out earlier this afternoon in what is probably a visual field issue but could be a new thing in the muscle that focuses the eye... And just when I'm meant to have a sight test for the DVLA. There goes my license! Hopefully all of these things will pass withing their individual 48hr time limits as otherwise it would mean that I'm actually having an MS attack which would do more permanent damage to my central nervous system.

Other than all this, my mind has turned to lining up work for February. I am going to start going to Brighton New Media 'freelancer' meetings to do some networking/schmoozing starting on Monday with a free drinking session at the prestigious Linden Labs offices in Brighton.

2008

2008-01-01T19:40:00.001Z

Well after my earlier bout of self pity, I pulled myself together, caught a cold/flu (despite having been vaccinated) and got a bit drunk with the wife on NYE.

The cold or whatever it is has caused my MS to flair up and I'm currently experiencing fluctuations in all my previous symptoms, from dodgy hands and feet to piss poor balance and intermittent issues with my vision. I've been taking interferon, though, so following the stats that 60% of flu cases result in the MS sufferer having an attack within 6 weeks, I'm hopeful that any such action will be relatively mild and not brutal and unforgiving!

This is now the first year I've started with my diagnosis on the table. Its hard to say what to make of it all, really. I mean, its a pretty cruel disease, nibbling away and sensation and physical capacity then restoring it just long enough to make you really miss it when it snatches it away again. On the other hand, I'm kinda optimistic that there'll be improved treatments available before it has the chance to properly screw me up. That's not really based on anything except my naive optimism (not usual traits for me, I assure you!) and the exceptional confidence I've had in the people who have been involved in treating me, their honest intellectual curiosity about what is, objectively, a pretty fascinating condition.

I've decided to give getting hold of Sativex a go as I know that most strains of cannabis appear to have some impact on my symptoms and so there's a reasonable chance that Sativex will be close to one of them. I want the beneficial effects of cannabis without the bullshit of smoking it, getting stoned or annoying the wife. That's definitely a goal for me this year.

Anyway that's for the future... for now, Happy New Year!

A bad cripple day

2007-12-28T21:20:00.000Z

I'm extremely annoyed with myself. I've fallen over twice, hurting my hands, legs and hip in the process. Both falls could be down to bad conditions such as slippery grass or a pothole in the walkway but the fact its happened twice in one day, both times with my balance failing or slipping out of synch with my actual body, suggest to me that my MS had a part to play in that.

I feel like I'm having a 'bad cripple' day, where I'm a fully paid up clumsy, falling down, no-sense-of-balance cripple. My mood isn't good and so even the dog is avoiding me.

Awww poor fucking me. Waaa. Waaa. Waaaaaaaaaah!

Sometimes I make myself sick.

The Ironies of Life

2007-12-24T17:52:00.000Z

I spent 10 years enthusiastically smoking as much pot of as many varieties as I could lay my hands on. After a brief period of growing bored with it coupled with some understandable pressure from my Fiance who didn't really fancy a green vegetable for a husband, I quit in January this year. Now I've always known some people who dealt medical marijuana to people with AIDS or MS but I'd regarded them as an arch stalking horse for the legalisation movement (with which I had also been obliquely involved!).

When I got MS and discovered what certain different strains of weed could do for different MS symptoms (well, more fluctuations) or the ability of shit UK soap to take the edge off Beta Interferon's flu-ey side-effects (it must be the CBD or the diesel, its a tough call), my view naturally changed. I've long heard that different breeds of pot affect different MS sufferer's symptoms differently, something which dovetails with my Neurologist's view that what we today call MS will in 10 or 15 years be a collection of specific inter-related diseases. This whole thing coupled with the research into whether Pot can delay the progression of MS (something which, existentially, may justify inately the last 10 years of drug abuse!) made me get back on cannabis a little while ago.

Yes I have found that some strains of pot alleviate certain symptoms more than others, I've found that crap british hash seems to take the edge off my beta interferon side-effects and I've found that some grass does nothing beyond get me high, which isn't too bad per se but does become annoying when you're trying to pay the gas bill.

Which leads me to Sativex. I want to try it as I am bored of getting high on weed, but statistically (tho the drug co can't admit this at the moment) it probably won't work for me as its based on a strain of weed that will do nothing for me - an unfortunate collision between medicines requirement for identical doses and marijuana's odd relationship with MS - but I feel absolutely compelled to try it 'just in case'.

Mostly for the wife, mind, but damn it - through all this medical nonsense, I still feel that I *owe* her at least enough that I try to moderate the things that make her uncomfortable, like being stoned, where I can.

Ridiculous non-MS thing of the day

2007-12-23T21:29:00.000Z

http://news.bbc.co.uk/1/hi/uk/7158260.stm

"The charge relates to the alleged engagement in conduct for the preparation of an intention to commit an act of terrorism." (MY ITALICS)

That would be getting ready to think about commiting an act of terror. Neat crime. Evey fantasised about killing your boss? That's 'preparation of an intention to comit an act of murder' or how about skipping a red light? Dreamt of that, you evil, wannabe 'preparer of the intention to commit a trafic violation'. you.

Sorry but when I'm not whingeing about losing feeling in my hands, I do read the papers and things like that sound totally ridiculous to me; I'm old-skool enough to believe that a crime requires both an intention (mens-rea) and a physical action in the world (actus reus). This bizzaro bullshit just increases my stress levels which (wait for it) could be bad for my MS (note how I avoid any certainty at all as most scientists will when confronted with this disease. MS? Welcome to probability country!).

Brain science

2007-12-22T13:29:00.001Z

The more that's known about the brain, the quicker some proper progress on understanding and combatting MS will be made.

Consequently, things like http://news.bbc.co.uk/1/hi/health/7151920.stm
constitute great progress. Read and be amazed at how bloody awesome the brain is!

Saturday and back at work...

2007-12-22T12:04:00.000Z

Well, sort of. I'm aiming to do a big chunk of dev work for the charity sites this afternoon; thus far the day has been taken up with puppy issues - walking, feeding, getting weighed at the vets, acquiring worming tablets and a supply of extra strong mints with which to trick the poor animal into swallowing a pill.

I honestly do believe that having a puppy to worry about and train and look after (or just be eaten by!) is helping to keep me relatively sane in the midst of the MS. It helps to have to concentrate on something very much outside yourself and your control (we're working on this one, though) to ensure you don't disappear into a morbid, solipsistic malaise ("Oh noes, I have MS, life sucks... WHY ME???").

The great thing is that I've got hold of some cannabis that does very little for most of my symptoms but which does appear to have restored a lot of mobility to my left leg. Presumably it would do that by dicking about with the area of my brain that has taken that damage. My foot isn't dragging so I don't need to carry my staff to remind me not to trip over things like the kerb or my other foot. I may never get this stuff again - illegal drugs never have the resillience or consistency of supply you'd get for conventional goods from a highstreet shop - but I'm pretty happy that I've got the use of my leg for my first Christmas in my new house and I'm able to walk the dog properly.

So its off to Tescos for me (manic Xmas food binge although I plan to sneak a few litres of spirits into the trolley - just don't tell my wife!) and then some web development work. Sounds grim? Hell, at least there's no X-Factor this week!

Interferon Friday!

2007-12-21T16:17:00.000Z

I've had one of those days.

On the plus side, I got into Brighton and did all my Xmas shopping in under an hour and a half - thats the benefit of only buying gifts for my wife and parents, I guess. Plus I'm getting rid of my annoying temporary replacement car although I still need to hustle Elephant for a cheque for the old one which got written off (long, non-MS story!). The downside is that the DVLA want me to scoot across Sussex for a visual field test which I'm going to pass unless I'm in the grips of an MS attack or fluctuation of the previous damage to my visual cortex. Actually I had one of these tests two weeks ago at the opticians which I came through 20-20 so I'm not too worried. I need to squabble over utilities with call-centre drones and am shivering in my house where the boiler has just cut out.

I've also just injected myself with Beta Interferon so fully expect to feel like absolute shit in 12-16 hours (I've done tests and that's the timeframe my side-effects really kick my ass) when, puppy notwithstanding, I aim to be blissfully asleep.

Freelance

2007-12-20T21:54:00.000Z

Work ground on. I put up with the silences, the plattitudes about working downstairs as I'd mentioned how I'd bounced down my staircase at home due to my left leg going a bit AWOL and there was a DDA-Compliant panic over me and a staircase. Not enough of a panic to address the out of date public liablity insurance (as clients do site-visit) proudly displayed in the staff toilet upstairs, but a panic none the less. And I'm sure the Disability Discrimination Act was duly complied with. Your honour.

So confronted with a frosty, patronising sandwich on the one hand or unemployment/acquiring a new job/career on the other I decided to look into my rights under the loathsome DDA. I had none. You have to be working for a firm for 12 months and then be declared a cripple to have any rights, from what I read, but I'd only been in for 9 or 10 months so hadn't (pardon the pun) got a leg to stand on. If I'm wrong, please correct me and point me to a lawyer!

Ultimately I chose to resign reasoning that were I the boss, I'd want to get rid of me as the DDA made having me aboard a monsterous liablity waiting to happen as I was employed as a developer but had acquired a disability that could and 60% likelyhood would (that figure again!) remove my ability to read again at some point in the future for a period of indeterminate length. I'd want rid of me. I get that. But I figured if I went then I could at least scrape a good reference as it would be acknowledged that I'd done the firm a favour.

But when I went to quit, on the back of an attack that had taken enough of my vision to put me off driving, they asked that I go freelance. I knew I wouldn't ever get any work from them as if things on my side were strained by the silent treatment to the point that I would go to law, they must've been justifiably pissed off with having a cripple on the PAYE books who couldn't reliably turn up to work for 9-5:30 mon to friday! It was a gentle let down all round, I thought and I walked immediately into a fat 3-4 month contract for a charitable endeavour that pays very nicely. And so to the future.

I now have a mortgage (eep!) and I really don't want to let the wife down so I'm on the hunt for work in February!!

People are strange...

2007-12-20T21:08:00.001Z

Its an odd thing but even the nicest of people in England are fundamentally incapable of coping with news relating either to chronic ill health or death. The people I worked directly with were a 29 year old designer, my line manager, who was shit hot at his design work but had problems on the human-empathy side. He subsequently showed himeself, in my opinion, to have absolutely no idea of how to relate to someone with MS; socially he evaded/blanked me and my wife at a colleague's birthday party and at work it was DDA regulation 'are my needs being met' bullshit and all human interaction went out the window. It was the same with the other web developer. Needless to say the 22 year old junior designer chick couldn't bear to relate to me either.

I wished I'd kept the whole thing to myself.

It occured to me that these people had absolutely no experience of death or serious illness. I found this odd. Scores of my peers at university had comitted suicide, diving out of tower blocks to become one with the concrete below. Others died nefariously, others carelessly on drunken minibus rides. Others mysteriously, their room curtains alight, jumping to their deaths through the window. Others to diseases like meningitis. People died. Death was part of life. Didn't everyone know that? Didn't everyone know someone with a serious disease? Shit. No, I guess they didn't. Utterly incredible to me as three generations ago we laid our dead relatives out in the drawing room to let people pay their respects pre-funeral.

The situation where I was working had become intolerable. I was given the silent treatment, barring work necessities, not out of malice but because they genuinely didn't know how to relate to someone in reciept of a spot of bad news. At social events, such as at a director's birthday party, my wife and I were ostracised. Nobody wanted to spend time with us lest we infect them with our 'inevitable' downer vibes... That really sucked.

Results and then what?

2007-12-20T20:06:00.000Z

So we survived the honeymoon and had pretty much come to terms with the fact that I very probably had MS and had undergone the arduous tests in order to convince the NHS to pay for the beta interferon my consultant neurologist (an excellent man called Dr Nisbet who's private practice is based in Hove) and popular opinion all said I needed to be on, ASAP.

I went back to work for a few days and then, after work one evening, got an appointment to see Nisbet and get the results conclusively. My wife and I had decided to go together; while I instincively prefer getting bad news on my own so that I control how other people find out, we had decided that she *should* be with me and honestly I feel it directly contributed to my understanding that we are in this together. Just don't tell her as I'll never live it down!

Anyway... boom! Its MS. But its mild relapsing-remitting which has a 60% chance of becoming secondary progressive within some arbitrary 5-10 year timeframe. Beta interferon (and, perversely, maybe cannabis) can delay that progressions so the Consultant would apply to the NHS's Primary Care Trust for funding for it ASAP and it would take about a month to come through.

So then its the tricky bit. Getting on with the rest of your life. MS isn't a disease that will kill you (unless you are *exceptionally* unlucky even among those unlucky enough to get a 1:185,000 condition!) so curling up on the floor and waiting to die isn't an option. Doing nothing and ending up an invalid living in squalor with a pittance of money from the state is an option but its one to be avoided. And so my mind started making me think about how I'd adapt to a situation where I couldn't always continue to work in a job that required reading intensively. The whole thing became an intellectual challenge, something to be worked through and around, not a horror to be subjected to. That's why I think I managed to stay comparitively sane (admittedly I was starting from a fairly sketchy baseline!) and sanguine throughout the aftermath of being diagnosed.

What I found far, far harder to deal with was watching the news of my condition impacting on the faces of people I loved. My wife took it hard, my parents were crestfallen and mildly self-recriminatory although the disease has no apparent hereditry component, and all this was horrible to be the central cause of! In the end, I think, people have got to grips with it. Although sometimes I'll catch my wife a bit tearful and evasive as to exactly why. I don't really care about me having MS - I care about a disease that does *that* to the woman I love.

Redefining your relationship with needles

2007-12-20T19:51:00.000Z

I went for my lumbar puncture in the first week in August. I was getting married on the 11th. I'd only get the results when I can back from honeymoon as to detect MS through a lumbar puncture takes a month of sciency stuff. Look it up on the wikipedia you lazy lot! So I had it done and can only describe it as an excruciating experience but really not as painful as people make out; in fact when the needle is in the right bit of your spine, you don't feel a thing. But you really don't ever worry about needles again. Some months after this I ended up getting a load of work done at the dentist and took 8 injections with no problem at all... the dentist actually remarked on my ability to take the punishment and I could reply with no word of a lie "after a lumbar puncture, seriously, your little needles don't scare me at all!".

So we went off the weekend after next and got married on the Isle of Wight. I had, of course, tried to give my fiancé the opportunity to pull out in the light of my diagnosis; naturally enought she just gave me a slap and told me not to be so silly. I love that woman! We went on honeymoon to tuscany for 10 days, the longest holiday I'd had in 17 years, and had a wonderfully drunken time on the edge of the Chianti region.

Begin at the beginning

2007-12-20T19:30:00.000Z

In May this year I was cruising along nicely. 33, I'd migrated into my second or third career and was working as a web developer at a small firm in Sussex, not a million miles from Brighton. I was pulling down good money and getting myself established as a coder; I was even engaged to be married in August that year. And then...

I started getting what I thought was quite bad eyestrain that was starting to affect my vision. I found it difficult to read text on a screen and next to impossible to read text from a page. This persisted and indeed worsened a bit over the next week or two. Finally I had to concede that something was wrong and went to my optician. They thought I had a lesion on the back of my eye and sent me to the Eye Hospital in Brighton. I rocked up there and endured more tests which confirmed that 40% of my field of vision was gone. I panicked for a moment and wondered if I could retrain as a visually impaired plumber. None of the doctors in the room had any idea what was going on and then a very smart lady called Miss Vickers walked in and said I should go for an MRI scan. Fair enough, I thought, this will take a few weeks. Sure enough, I was told to go home and wait for a letter. I started to get a lift out of Brighton with my dad and was on the road when I got a phonecall to go in to the hospital *immediately* for a brain scan. In retrospect, I realised that they probably needed to rule out some kind of brain tumour or critical, urgent condition. Anyway, up I rocked, scanned I got.

Two weeks later I had to go back and see Miss Vickers for the results. That it took 2 weeks told me that whatever it was, it wasn't brain cancer. She showed me the scans and explained that I had what appeared to be lesions in my brain, caused by AIDS or Syphillis, Multiple Sclerosis or a related condition and would need to see a neurologist. Now, my fiance (now wife) gives blood so that ruled out AIDS and syphillis, in my mind, although tests were needed for the sake of form. I took copies of the scans on my USB keyfob ram thingy as I'm a bit of a sick puppy.

After some faffing about and ultimately digging into my pocket to go private, I saw a neurologist, taking my keyfob with me. He had a look at the scans and tested so neurological responses and concluded that it was 99% likely to be MS and that it was probably this which explained why I drag my left foot, something I had previously attributed to post-operative arthritis in my left knee. I would need a final conclusive test, a lumbar puncture, to confirm the diagnosis and start the ball rolling to get beta interferon, a drug which is important because it reduces the numbers of attacks a person has with MS and also seems to slow or halt the progression of the disease. Its expensive and the NHS PCTs have to agree to fund it but, in reality, never say no....

So.... Why blog?

2007-12-20T18:47:00.000Z

I was diagnosed with MS (Multiple Sclerosis), conclusively, in September 2007. Since then, I've bought a house with my wife (whom I married in August when I merely had a 90%+ chance of having MS), changed my job from conventional work to being a freelancer and I've acquired a bitey little puppy. I've got a lot going on but this is such a weird disease, it touches on everything I do, nibbling away at sensation or taking a chunk out of my vision or motor control... it leaves me with a lot of things to say that I can't readily bring up in normal conversation ("More tea dear?" "I'm becoming concerned that my MS is going to corrode my personality and I'll end up as a disease bore. Pass the sugar..."), but nevertheless need to be said. Even if its only to myself. Also, if there's even a slight chance that any retarded insight I happen to have can help one other person with the stuff they are going through, then I gotta jump at it.

So I blog. Or I'm going to, I think, from this point on.