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.

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.

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!).

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!

Saturday and back at work...

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!

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

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...

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?

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

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

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?

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.