My MS Blog

This is the UK blog of a 34 year old man from Sussex who was diagnosed with Multiple Sclerosis last year, charting his attempts to get on with life, keep working, stay married and avoid being eaten by his Border Collie puppy.

Tuesday, 28 April 2009


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…

Friday, 8 August 2008

NHS, Cancer drugs and money

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

Friday, 27 June 2008

'Positive' Discrimination

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!

Wednesday, 25 June 2008


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

Thursday, 12 June 2008

Dignity in Dying

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.

Wednesday, 11 June 2008

The right to die

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.

Saturday, 24 May 2008


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!