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28 Oct 2010

Post 250:Some Thanks, some non thanks and hopefully change ahead


Since my stroke I have always held the theory that my fatigue would
have to be tackled with medication and that any underlying depression
would have to be tackled by meeting the right girl and achieving happiness.
Now, I never thought the former would ever subjugate the latter but
that is what has happened. Trust me when I say that people find tired people
tiresome! That’s just the way of the world it seems, and that has been why I have
been racked with Self Doubt since having this bloody stroke. I am
convinced I must be the most tiresome bloke in the world. People I
have met and have become friends with since my stroke are just wonderful
people to have given me a chance, anyone in this category, words
cannot express my gratitude., you guys have seen something in me that
I would like to appreciate, but can’t. Next, myexisting friends and
family, who have stuck with me through this despite the fact that this
has virtually taken away everything that is me.
Anyone else who
has ignored or turned their back on me can f*ck off, it is because of you that I have thought I'm now worthless. I have often been
told ‘You sound like the angriest man in the world’, and that is
because I often have been. I used to not care what other people thought, I am now racked with worry about what I think they think. I now understand why every opposition
politician in the world goes into an election with the slogan ‘change’. That is what life for me lacks now – every bloody morning waking up and feeling that you haven't slept, I'm pretty sure that dealing with this will make me a different and BETTER person which is why the doctors appointment I had on Tuesday evening might make all the difference. Remember a few posts ago, I talked about anti-seizure medication maybe being useful -well, I got referred to this neurologist that bizarrely I knew because when I'd played in the Oxford golf team, he'd been in the Cambridge golf team. He is probably in his early forties now and he had apparently been one of the doctors who had looked after me back in 2005/early 2006 when I'd first had the stroke (I was in a coma), a bizarre coincidence that he happened to be the neurologist of some random bloke I bump into at a comedy event. Anyway, the long and the short is that his name is Omar Malik and him knowing me got me an appointment in one day! When we went to see him he said some encouraging things and has prescribed me some medication that has had some encouraging results, At times like these I remember how giddy I got when I was prescribed Ritalin in summer 2009 and that turned out to be a disaster so fingers crossed that the drug, Keppra does something useful. If it makes a dent in the fatigue it will change everything. I don't want to get my hopes up when disappointment is the order of the day. That said, my walking practice continues, setting another record time for 1 lap of my garden, I'm sure helped by my 'a little too shiny' Asics trainers which arrived this morning recommended by Jose, my personal trainer (he says so I can look at least as chavvy as him) although I suspect he wants me to help direct local air traffic. That aside, I've knocked ~15 secs off my quickest fast time to 1:38, I think between me and Ian we both agree that anything under 2 minutes is a sign that I'm putting in the effort. I'm just a little sad it's taken such a bizarre coincidence to get things happening, rather than it be the way the system works. I'll keep you updated.

24 Oct 2010

Post 249:Take the smooth, sod the rough

So, I have just got back from a lovely Sunday roast with a couple of my great college mates Mel and Becky and Mel's charming new Canadian boyfriend Lucas sadly forgetting to take my camera. Like all Canadians, he is revelling in the fact that people instantly like him because he's not American!This has come at a good time because I am feeling particularly friendless at the moment and I feel I am plumbing the depths of attracting new friends and keeping existing ones largely because of a message I got from someone who's never met me. This is an occupational hazard of being a lapsed internet dater. My profile is still up on some of these sites despite not having visited them for months. Obviously, in my profile I talk about the fact I've had a stroke and most messages I therefore get are pretty kind if they're not from time wasters. If they've got the right combination of lexicographical correctness, geographical proximity, shared interests and the right look I almost always write back usually with a link to this to show people I can string a sentence together and that since my stroke I'm not a waste of space, that was until I received a reply to one of my replies containing the words 'cut the crap about your stroke, why should I read your blog? Just from the title it sounds pitiful and depressing. I know I should just ignore this as the comment of one lousy person but it's hard these days.
My physical rehab program is so difficult. At least I've introduced timing of my garden walks so we can all see if I'm getting quicker. There's nothing quite like cold, hard numbers to focus the mind. The score is I do 10 ups and downs of the garden with a crutch and Ian balancing me/shouting at me, 20 lengths in a session where 2 lengths = 1lap, and of the 10 laps, I do 5 at smooth walking pace and the other 5 as fast as I can, and when I started this new torture regime on the 12th October, my slow lap took 5.28 and my fast lap took 2.46, yesterday, my slow lap took me 3.12 and my fast lap took 1.53. Apparently this is progress! Perhaps I should focus on this and being taken to lunch rather than the opinion of one bunny boiler and the fact I couldn't go to the one gig I had tickets for this week, the Charlatans, another band from my schooldays will have to wait because both people I'd asked were unavoidably detained. Maybe I should focus on the fact that I took 5 of my friends to the Soho Theatre last Saturday to see Aussie comedian Adam Hills, by virtue of being in a wheelchair the theatre had reserved the entire front row for my friends. Now Adam is a nice comedian, he isn't the type to rip the piss or victimise people, well, at least until my mate Nick when asked said he was a 'hedge fund manager' he then went on to reveal that his wife, Sally was at home looking after their two kids. The audience tasted blood, so the next thing we know is Adam is ringing up Sally on his iphone – she answers, Adam says 'Hi Sally, this is Adam Hills, the comedian your husband has come to see tonight'. Sally simply says 'Oh dear' and hangs up and then wisely turns off her phone. She wasn't to know that Hills is a thoroughly nice man who wouldn't have stitched her up like a kipper, and I'm not just saying this because I won £30 off him, that's another story. This photo was actually taken by him and lifted off his blog.

19 Oct 2010

Post 248: A new regime and some hope

It feels like ages since I've written anything because with my new physio regime I seem to rarely have the time or the energy anymore. My six hour-long sessions a week have been replaced by on average 5 sessions a day seven days a week, which are mostly shorter bar approx 4 hour-long walking sessions a week and two one hour training sessions a week. This rather terrifies me but I don't have a choice. Even though I am exhausted I should be motivated by wanting to get out of this wheelchair but instead I am motivated by avoiding fatigue. This is my cultural problem: Whenever you are genuinely ill, you stay in bed – you don't go to work, you sleep your illness off, the disjoint I'm having is I seem to be working harder. The real revelation has been Susan and Suzanne (my housekeeper and housemate) who have thrown themselves into helping most of the time. Both of them have overcome ailments which help them relate to what I'm going through so I can't tell anyone to ' just f*ck off'. I'm lucky to have them, I am touched by the way in which they put up with me!The other news is that I have a new great white hope in dealing with my fatigue, I hate to sound negative but I hope it comes to something! Investigating whether I was deficient in growth hormone was a red herring that might have fed the five thousand! That's six months of my life down the drain! This is about whether the brain damage I've had is causing unnoticeable seizures that are causing my fatigue. In which case the answer would be anti seizure medication so fingers crossed. What has helped triangulate this slightly in my mind was recently a friend of a friend emailed me about an online community that he had set up for other avm survivors and when they talked about curing fatigue it was all about anti-seizure medication. If this helps then I have a guy called Frank who I met at a comedy gig a few weeks ago (I knew it was worth going to these things!)
Last week I went to the awesome Brixton Academy to see Groove Armada with old college mate of mine Ben and his charming other half Tom. Not quite as good as Guns and Roses but noone is. It was still immense. I will always associate Groove Armada with chill-out music but it was far from it.

16 Oct 2010

Post 247: More Genius

Since my 'intervention' on Sunday (see last post) my time doesn't feel like my own anymore. I thought interventions were reserved for people like Amy Winehouse and Kerry Katona but clearly also for people like me, people who are in danger of messing up their messed up lives even more, but even if I don't feel grateful to them at this precise moment I'm lucky to have people who care about me enough to intervene. The program I have agreed too is daunting and slightly scares me but my housekeeper and housemate, (Susan and Suzanne) are mercilessly implementing it. Suzanne even went out and bought a white board so she could write out the program so I and other people can see it. Doing walking practice 4 times a week is what scares me, because even though I find it hellishly hard, the reason I cut back on it 6 months ago was I didn't feel I ever got any better at it. Doing hard work for nothing just doesn't compute in my mind but apparently if I continue as I am, it's a one-way ticket to the Dignitas clinic! It's like in the shawshank redemption 'get busy living, or get busy dying'. It's nothing like that dramatic though a dream of mine that I had thought I had to retire came true on Wednesday night when I saw the mighty Guns and Roses in concert at the Dome and even though I have seen a lot of great live shows this had been the best by a street –I took this video it may be 15 years since the height of their greatness when both 'Use your Illusion' CDs were easily my teenage favourites and everything about Slash screamed 'GOD' but to tell you the truth I hadn't even listened to their new album 'Chinese Democracy' because I thought it might sully the memory I had of their genius. Reviews of Chinese Democracy confused a mere simpleton like me e.g

“In truth, not a Guns N’ Roses album, but an Axl Rose and Friends production, as not another single member from the band’s original line-up is present here. In their place is a virtual militia of guitar players — often four to five at a time — and an extended crew of keyboardists, including Use Your Illusion-era Dizzy Reed. With all this firepower, Rose uses his surly, knowing howl to ID these hard rock tunes with his fervent, often imagined, sense of injustice and works his way into quite a tizzy. He’s raging against something that’s holding the world back in the title track and he’s stalking the stage with the gothic thrust of Iron Maiden’s Bruce Dickinson on “Better” and adopting the Robert Plant banshee scream throughout “Riad N’ the Bedouins.” While Rose spends much of his vocal range in a high anguished falsetto, his backing group use everything from prog-rock Mellotron and strings for “There Was a Time” to piano and orchestra for the Freddie Mercury-inspired power-ballad “Street of Dreams.” Rose doesn’t believe in small moves. An album that has taken 15 years to appear and has used 14 studios to create it could only be this grandiose: Larger than life in every conceivable way.”

When I had struggled to read this it didn't sound particularly good but live weaved in amongst almost all their classics it was majestic and in 'this I love' might even replace 'November Rain' as my favourite GnR epic track. It is genius. Axl Rose's voice is still incredible. Even though he has clearly gained a few pounds since cutting heroin out of his diet it is a miracle his vocal chords have not been reduced to sandpaper, but they have not and I was speechless at the power he can generate. I also really got the impression these guys are properly talented musicians as opposed to mere rock gods, as Axl introduced the band they each got a couple of minutes to show off the bottomless talent they clearly have. Slash's replacement on lead guitar, Richard Fortus, can play a bit too, I guess I just came away from the concert feeling I could tick one of the things I'd wanted to do in my life, this is what going to live events, even in my wheelchair, feels like to me and more importantly I get to take people, and yesterday I got to take two people, Oli, a keen concert goer, who has taken me to some great stuff, but I also got to take my housekeeper Susan, who despite hating crowds and is pretty agrophobic bravely decided to face the Dome because GnR were a bit too good an opportunity to miss but also because she was a massive fan of the warm up guy former Skid Row frontman Sebastian Bach who I thought was awesome – proper hard rock! Which sounds immense live. So full of energy and Bach, who must be in his 40s has such a powerful voice, with a rock n Roll Scream that matches Axl Rose. Guns and Roses are a treasure that needs to be enjoyed. The Dome is incredible. The sound is immense and I love going there. Also this week my counsellor set me a task,trying to describe what I offer and then trying to sell myself like a product. I hope I don't sound like an arrogant c*ck or worse, like one of those Apprentice Oxygen thiefs, I still think the show would be improved by lobbing a hand grenade into the boardroom! This was my first attempt at a sales pitch.

The way I have to do this is to describe what I have to offer People and that is the fact that I am a nice guy, an intelligent joker and cheeky git with my own house (in Oxshott, apparently a des res) and my own reasonable income and a big network of supportive mates. Unfortunately, I had a major stroke on christmas day 2005(ho-bloody-ho) caused by a vascular weakness I was probably born with but had no idea about that almost killed me. Since then I have been learning to cope with a new life -I want to meet someone who's in this for the long term, a female best friend to spend the rest of time loving and laughing. Educated, caring, pretty, a bit sexy and looking for love, to make things work it must be someone I respect. It will need to be someone willing to make allowances because I can't travel. Definitely someone who lives near me and can drive. I want to look after anyone who can look after me after what I have had to go through. I hope the rewards in the long run are substantial. Convalescence is dull on my own, I just need someone special to share life with, someone who doesn't think they're selling themselves short by going out with a disabled guy.(which appears to be a common theme)
If you drive it'll help! Same, if you live near-ish. I'm not a f*ckwit or a nonce but the wall of silence I get is enough to persuade me to virtually forget the online dating world because a stroke survivor like me won't be given a chance. I refuse to believe that nothing I've ever done in my life counts for anything.
Why would I be a product worth buying?
I have my own house
I have a stable income
I have a wide network of supportive friends
I put others first
I am tall
I can hold a proper, intelligent conversation with you
I try and find things in life to enjoy despite everything
I have a wide, articulate and interesting taste in music
I have good taste in comedy
I promise to make you laugh
I have good taste in red wine

11 Oct 2010

Post 246: Ambushed

Being told by anyone that you're not living your life right is a bitter pill to swallow especially when like me, you thought in the circumstances you were doing approximately the right things. Apparently I'm not. Yesterday, a group of 5 told me that if I continued as I was, I'd end up friendless and penniless in a care home or worse. To me this is a fate worse than death because the thing I've always valued above everything else is independence or what I have left of it. I'm a stubborn git, and even though I crave company, I can't bear to not be able to do things myself, which has made life such a f*cking nightmare since my stroke. One of the things I got in trouble for yesterday was 'pandering' to my depression and tiredness by sometimes not being 100% there when people kindly come to see me. Since I can barely think of one thing at once, it's small wonder I sometimes don't always seem 100% there, sometimes I'm thinking about an email I was just in the middle of writing! Secondly, I have often used my depression and tiredness as 'excuses' not to commit to physical therapy.
Apparently, what I have been most scared of is happening, people can't be bothered with me anymore because I am too miserable and negative. All I can say is that I'm trying everything I can to be the fun, interesting,positive, energetic person I used to be, who had plenty of friends and made people laugh – it's just not that easy these days, even if I couldn't walk if I didn't feel this exhausted I'd be able to face the world. If only some pretty girl took me on as a project, I reckon half the battle would be won. The other half is sadly money. Since my stroke my Dad (bless him) has been my power of attorney and so has had sight of everything I've spent money on and let's just say I might have overspent a couple of times. I'm definitely the type who deals with stress by spending, but it's always been my money , before my stroke, I'm ashamed to admit my folks baled me out a few times and since my stroke I have fortuitously ended up financially ok thanks to an amazing disability pension, support from friends who through The Dom Pardey trust have paid for my amazing wheelchair and most of my therapy, so a lot of yesterdays b*llocking was telling me that I need to be more grateful for what I've ended up with, which I constantly am but that the payback for all this luck and generosity is that I try and overcome feeling like sh*t and get better at getting better. I need your help.
Buying tickets for shows is never the answer. Even though it gives my life a purpose it is not a sustainable pursuit and might even deter people from donating to the trust – let me just assure people, every penny donated to the trust gets pored over by the trustees and is 100% committed to my rehab, which believe me is anything but fun, it's much more important!
This however wouldn't be my blog if I didn't have some gig or other to Yack about so after yesterday's b*llocking I was taken to the Dome to see 80s synthesiser frog Jean Michel Jarre by lovely couple Tim and Alex Grant. Seeing as I met these two clubbing they were appreciators of the trancey like music although they whole heartedly agreed with the comment 'we saw and heard similar/better things by a guy called k90 10 years ago. But JMJ has been milking this for 30 years. Bumping into clubbing mates of yesteryear was also a nice surprise, intrepid Kiwis, the improbably named Daegal Brain and Karl Alexander, f*cking legends!

9 Oct 2010

Post 245: There's never fun in a funeral

Another tough week but nonetheless one which may prove to be a bit of a turning point after my physio Ian presented me with an ultimatum on Tuesday. A few months ago I radically reduced the amount of physio I was doing, in particular my walking because I was getting too depressed about the fact I didn't feel I was getting anywhere, well Ian thought I was and he'd say I have been going backwards since then, I would say I've got less depressed (a matter of some opinion) but I've certainly faced the week with less dread. Anyway the effect of Ians ultimatum has been for me to agree to a more punishing 7 day a week physio schedule which I am nervous about at best, terrified about at worst. But, at the back of my mind, I know it has to be done, otherwise I'm spending the rest of my life in this f*cking wheelchair. I know it's going to be hideous but that's the choice, or lack of one, that I face – so the major focus of my life is to be physical recovery but my approach has been dare I say, holistic. My counsellor Cathy seems to be good news, Yoga and reflexology help me relax and I get on with both therapists and I occasionally attempt transcendental meditation, but I doubt I'm any good at it. With the rest of my resources I continue to look for live events that people can take me too. This week my old schoolmate and his wife Ellie took me to see the hilarious Sean Lock at the Hammersmith Apollo on Monday. Lock is on fire at the moment and the Comedian I find most likely to make me laugh out loud at the TV. He's quality. We had a good time, enough for me to see the funny side when James and Ellie (both police officers) leapt out of the car to breakup a drunken argument. Don't get me wrong, I think they're both incredibly brave, but I was sitting there thinking - 'I hope nothing happens to them because without them I'm stranded.
I've also got back in touch(via facebook) with one of the Rehab Assistants from Putney hospital who is going to come and visit me on a professional basis at least a couple of times a month, she's a good lass called Felicity who is pretty conversationally feisty. Luckily she doesn't live a long train journey away and she can drive me to some gigs, like 80s Scandinavian synthesizer bandits A-Ha at the Albert Hall last night. The last time I'd seen these guys was in November last year (post 165). They are the favourite band of my friend Chris Dugdale (the magician) the funeral of whose Dad, Ivor I'd been too on Monday. Even though it was a sad occasion (Ivor had succumbed to a brain tumour aged 68) it had been a fitting celebration of his life with both Chris and his younger brother Will (a great mate of mine from college) doing brilliant tributes that lesser folk would have struggled to hold together. Ivor was a lovely man and had even given a substantial donation to the trust whilst Will has run a sponsored triathlon for me. Chris was there last night because this is A-Ha's swansong London gig. After all their heyday was the 80s, even so, they have aged pretty well, the lead singer Morton Harket still hits the high notes and looks the part.
In fact the comedy high point of yesterday evening was when Felicity, the kind person who drove me said that Harket was looking great and had aged as well as Patrick Swayze – 'what', 'he's dead?' I said helpfully
But as per usual this isn't all I've been up to this week, on Sunday my mate Guy took me to see comedian Chris Addison in Epsom. He may look like he's in his mid-20s, but he's actually 38 – lucky man. His comedy is very much about mining that rich comedy seam – middle class guilt. i.e. the absurd intolerances of daily mail readers, a subject I see at first hand because of my dear mother. His way of confusing Mail readers is to tell them that Asylum Seekers are the natural predator of paedophiles. Guy and I thoroughly enjoyed ourselves and I found his stories about how his 3 year old son, Elias, had to be interviewed for a good local school hilarious. What do you ask a 3 year old? How's potty training going? According to Guy, it's a good achievement if his son doesn't sh*t himself. 'What could you possibly ask a three year old in an interview?'
Anyway, it took me a few days to stop chuckling about this until my spirits were raised by my old friend Gina visiting with her cute one year old Talia and just now (for it is saturday) I have just said goobye to Steve and Alexandra Joseph who came down to take me to lunch. I hadn't seen these two since their super wedding in May (post 207). Another 80s synthesizer bandit at the Dome tomorrow, Jean Michel Jarre.

1 Oct 2010

post 244: Support for an antihero

There are probably more reasons to dislike Russell Brand than to like him but I am doggedly determined to like anyone who the daily mail dislikes and I have to hand it to the man, he may have taken a roundabout route to happiness doing some 'morally questionable' things (at least that's what my mother thinkd)(which makes me like him even more!) I'm not saying it's great being a junkie but having a string of threesomes with beautiful women might be a laugh and I do find him quite funny. It might make him seem 'like the human embodiment of Hepatitis' according to Aussie comic Brendon Burns but Brand is marrying American singer Katie Perry – I think Brand is having the last laugh. He was certainly on form for the sold out launch of the 2nd instalment of his autobiography 'booky wook 2' at the Hackney Empire last night and I think I can safely say it was one of the funniest nights I've been to in ages. Particularly in the 2nd half when Jonathan Ross interviewed him on stage. They're clearly good mates and just sat on the stage and chatted, swearing like sailors, after Stephen Fry last week had said Peter Cook was the funniest man he'd ever worked with I instantly thought the unscripted banter of Ross and Brand was a decent rivalry to anything Pete and Dud had managed. I am aware this is a big call!
I have good mate and now superstar international DJ Tim Davison for doing the driving and even though he had to courier the keys to my van back this morning he hasn't let that overshadow last night. This has been another busy week, as on Monday, I went to a sold out Brixton Academy to see the brilliant Placebo. I actually took this video I had last seen them in December 2009 (post 171) at the Dome – they had been good then but not brilliant, this time the comparative intimacy of the Brixton Academy made the difference summed up by my friend and housemate Suze (who drove me) saying 'I love this place'.
In other news I think I have found a counsellor. Recommended to me by the consultant neuropsychologist in charge of the unit I was on at Putney hospital, I've got a good feeling about her. She's got big shoes to fill because I loved talking to Vicki but since she got a job it is entirely understandable that her 'pro bono' sessions couldn't continue. She is an angel and helped me so much. Trying to feel happier is utterly crucial in 2011. It is time for me to start thinking about the Christmas Drinks again. OMFG ALREADY!
Aside from this I stay in touch with my new friend Max who has been giving me some useful advice about travel in a wheelchair. I met him at the last night of the proms (Right with carer Justine)And someone the other day said they liked pictures of the cats!
I find it ironic I have to depend on so many people.

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