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.
Saturday, 12 January 2008
Friday, 11 January 2008
The Price of Illness
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.
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.
Tuesday, 1 January 2008
2008
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!
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!
Friday, 28 December 2007
A bad cripple day
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.
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.
Monday, 24 December 2007
The Ironies of Life
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.
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.
Sunday, 23 December 2007
Ridiculous non-MS thing of the day
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!).
"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!).
Saturday, 22 December 2007
Brain science
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!
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!
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