31 May 2009

Post 129: At last something different (maybe)

I think I had a fairly pivotal hospital appointment yesterday. Most times I have seen fatigue specialists,neurologists and even an eye surgeon they have all either shaken their heads, proffered some platitude and done f*ck all, leaving me to think what a waste of space they and their so called 'expertise' are. Call me an ingrate I'm just bored of feeling like sh*t all the time and I guess for vanitys sake always looking like sh*t. Now, I am aware that I have sworn a few times in this already and you might say 'there's no need to swear', after watching Sean Lock on 'live at the Apollo' his answer to when people say this to you is genius. Simply say 'no, I think that's where you're wrong, swearing was invented for just this occasion'. I challenge anyone to say that to the officious call centre or customer services moron who bars you from doing something or makes a mistake and says those words ' there's no need to swear'. Right, gauntlet thrown down. I was all ready to be underwhelmed by my visit to the doc, a neurologist that when he actually prescribed me the stimulant Ritalin
to potentially help my fatigue I almost couldn't believe it. It may sound a bit counter-intuitive to be prescribed a drug that is famous for calming down hyperactive kids
with ADHD (attention deficit and hyperactivity disorder) but one of my better informed friends (there are a few) has informed me that it stimulates people to concentrate more, apparently it is like speed without any of the euphoric bits, I think my initial reaction to this was 'what's the point?' which I obviously said half jokingly. The doctor did say amphetamines might be a next step but there are two problems that (un) fortunately make him reluctant: Firstly, they are addictive; and speed has a crushing comedown which he wasn't prepared to risk on top of my obvious depression. It sounds like suicide Tuesday times a million, no thanks, I feel bad enough already! To make matters even worse I suppose you could surround my house with Burberry clad chavs listening to hardcore. I think I've dodged a bullet there.
One of my slight concerns about stimulants is that all stimulants (and some depressants eg.alcohol) raise your blood pressure so it stands to reason that taking Ritalin does increase the risk of me having another stroke, and according to a book I listened to some time ago by ex CNN anchorman and stroke survivor Mark Mcewen
the #1 risk factor for having another stroke is having a stroke in the first place so my eyes are open. Theoretically, that risk should have been lowered by having heinous Gamma-Knife radio surgery in September 2007 to obliterate the original cause of my stroke, a thing called an AVM , a tiny birth defect that I didn't know about until it blew up in my head. My original Neurologist described it as a 'ticking timebomb' that would likely have blown at some stage, I only survived because I was young. I've done a little research of my own on the internet and apparently 80% of people with AVMs either have a stroke or epilepsy.
[Source:], AVMs are apparently rare so on the one hand I feel f*cking unlucky to have had one while on the other given the location of my Haemmorrage (in the brain stem) I'm f*cking lucky to be alive, what's that there's no need to swear? this is one of those occasions which was invented for swearing. F*CK.
Anyway, another exhausting week of rehab, fatigue and boredom awaits and I haven't even started my writing course yet!I'll let you know if the Ritalin makes any difference to my health otherwise I'll slip them to the hyperactive seven year old next door and everyone's a winner. Later in the week I'm taking my parents to the Albert Hall for some 'la di da' classical Gala and then on to the Hackney Empire on friday to see my current favourite comedian (just edging Bill Bailey
) Stephen K Amos, lets hope the Ritalin helps and that I enjoy the end of the week, tune in next week for more lightweight redacted swearing and news about other stuff. Gosh, you almost can't feel the excitement!

25 May 2009

Post 128: Praise where it's due to my folks and seeing 80s legendJean-Michel Jarre

Well, better late than never although I sometimes think never would represent an improvement; the reason I'm a day late -there is a reason, not an excuse - was that on Sunday (my writing day), I was having Sunday roast with my parents. It was also a glorious day so it was a good opportunity to actually drive my chair on the flatter bits of the garden
which is looking incredible
thanks to endless TLC from my mother.
I'm sure if she could, she'd legally adopt the garden as her fourth (and favourite) child. She does all the jobs involving beautifying it (pruning, planting etc..) and Dad does all the 'Manly' stuff (mowing, strimming etc.) and me and my brother just sit back and take the piss about how the Garden runs her life. This was actually my second visit home this week. Luckily, Adrienne (my carer) drives my van and was able to take me both times, firstly, because the garden looks so spectacular at this time of year, my folks put on a midweek buffet lunch for a bunch of old farts that my dad used to work with, many of whom my parents have known for over 40 years. It is a jolly occasion and gives my mum a chance to show off the fact she is one of the finest cooks/hostesses in the world. The new house is perfect for it, Mums dream kitchen provides the perfect setting for proceedings to start with a glorious view of the garden. The only problem being (for me) is that my room adjoins the kitchen so trying to grab some rest (as is my post-stroke wont) was next to impossible because of the noise, such is life. All in all the occasion was a bit special for my parents because this was the first time they have been able to put on anything like that since the house burnt down.
I think it meant a lot to them that I was there as well, even if I do find those sorts of occasions the most exhausting things in the world. Indeed, the house seems to be the one silver lining in two years that saw me lose everything that made me me (almost including my life), my parents lose everything bar the clothes on their backs. Bloody Hell, sod the Queens 'annus horriblis', that's childs play. Anyway, scooting forward to Sunday, it was nice to go home and as usual mums roast lamb was amazing and thinking of my waistline I passed up the Roast potatoes so I could have a 'wafer thin' bit of homeade Strawberry ice cream, good decision I thought, I hadn't had ice cream for months.
Apart from my parental shenanigans I also, on tuesday had an unexpected visit from my sister who was over from the states on business. I don't see her that often because she's over the pond but I did see her and her family as recently as easter but it is rare that I get her undivided attention because of her three monsters, er,angels. She tackles problems in a very level headed and dispassionate way which I find very helpful. Completely unlike my parents, lord knows where she gets it from!
Later in the week, on Friday, I did something completely different, friends Shaun and Renae took me to see progressive 80s Electronic Europop Synthesizer laser overlord Jean Michel Jarre at Wembley Arena. Quite why I decided to see this genre-bending Frenchman is beyond me, probably because I've always been a big fan of the big show, for example I'll go and watch a football match at a big stadium despite the fact I hate the game because I like the visual spectacle of 30,000 people in one place even if I think the world would be a better place if NATO were 'accidentally' given the coordinates of the stadium as somewhere to test their latest smart bomb. I also knew one or two of Jean-Michels tunes, Shauns wife, Renae had also made some positive noises about how someone in her family had loved JMJ's music. I knew that Shaun being my former musical partner in crime when we were both small time trance Djs (at least I was), I've managed to find a picture of us Djing together.
Those were the days. Anyway, despite arriving just in time for the encore because of appalling traffic, luckily the encore lasted an hour because JMJ thinks he's a bit special.

It ended up being a rather good evening made hilarious by Shaun's on the money observation 'that this would be the kind of music Alan Partridge would be dancing around his caravan to.


24 May 2009

No post will appear till Tuesday first thing because I'm not at home till monday.

17 May 2009

Post 127:Dom and Pams 'shotgun' wedding and some thoughts on 'talking therapy'

Things have conspired against me on sunday so a post about Dom Ellis' wedding and some other things won't be appearing till late monday if anybody cares. I hope you've all had good weekends. here goes:

A couple of things of major interest this week which for once don't include going to big events/concerts largely because everything was on last week it seems.
The first thing I want to mention was the 'shotgun wedding' on friday of an old mate of mine from college, yet another Dom, Dominic Ellis. I say shotgun because that's the way Dom described it when I first heard about it in an e-mail from him on Monday last week. The other hallmark of a shotgun wedding is that yes, the bride may have been pregnant (which you couldn't tell by the way) but Dom & Pam have been together quite some time. The sheer disorganisation and last minuteness of the wedding is down to Dom being something of a bufoon. The success and turnout on the day was down to the kind of loyalty he has inspired in his friends. For starters I don't think I've ever met a man who relies so much on the principle of 'it'll be ok in the end', I don't think it's an accident that this coincides with Dom being the smoothest, most charming bloke I know. I think that this shows that things'll work out if you're as smooth and charming as Dom. As I said, unorthodox and as last minute as it was it was a great success. The turnout from my year at college was sterling considering that we all found out on monday. The church (next to Spitalfields market was suitably Grandiose and the reception in a nearby tearoom which consisted of champagne and Sushi worked really well especially with my diet apart from a piece of black forest gateaux which somehow slipped through. Both bride and groom looked great and showed me that I'm far from getting right my photograph face, some of my post stroke pictures are a disgrace. This seems to be an occupational hazard of having incomplete control and feeling in my facial muscles, particularly trying to smile or keeping my eyes open.
The other thing that was nice about the wedding was it gave me a chance to see almost all my college friends. The preponderance of small children,
apart from making the church service much more entertaining reminded me of how far behind I am in the 'normal life' stakes. Maybe I ought to just accept that I'm years behind and that this is one particular ship I have missed, but there will be others. It's just hard to accept that. Especially when almost all my exs' are either married or engaged.
Anyway, the time for morbid introspection is never so I'll quickly just slot in something positive that my physical therapist told me to include. On my special exercise bike that I can use in my wheelchair

there's a screen that shows how much effort each limb(arms or legs is contributing. As you can imagine my left side has consistently been down on my right side and I have to really concentrate to get the left side to contribute much but on Monday I was able to maintain symmetry for noticeably longer than usual. Apparently, this is progress,

The other thing I have really decided to focus on is trying to do something, ANYTHING about my fatigue

which is the thing that is destroying my life and everything I try to do. It consumes my every waking moment, it makes me negative,depressed and tetchy. It knocks on into everything such that I don't even like being with myself. How anyone else can stand me I don't know, already I can feel some people losing patience with me and I'm not surprised, what's worse is I still don't feel confident there's a way out of this for the rest of my life. To that end, several people saw a thing in the papers called The Lightning Process which I have found to my horror is hypnosis
(because I'm a sceptic) although I do hold out some hope because back in 2004 hypnosis helped me quit smoking. At the time this was virtually a miracle because I was a 30 a day addict or as my friend Nick once said 'Dom, I don't know anyone who smokes as much as you', I didn't know whether to be ashamed or proud! As it happens quitting probably saved my life and meant I was able to fight off a serious lung infection when I was in intensive care. So fingers crossed this does something although I've always been unsure that 'talking therapy' actually does anything. I've always treated talking therapists as kind people who listen well and are there to moan too, which definitely helps but someone sitting there and actively trying to change the way you feel/think, nah, never believed it works, I've always believed that medication and operations are the only serious way you can make changes because I honestly believe that giving up smoking might have been a fluke, as absurd as it sounds.
But, I had what I think was a bit of a pivotal conversation with Vicki, my psychologist, actually she's a psychology student who comes to see me once a week out of the goodness of her heart, she simply said that 'with talking therapy, you have to believe it's going to help you, rather than automatically believing it won't'. Not rocket science but good point.
Finally, there are those that say that this blog and the fact that I like going to events is proof enough that I have plenty of time and energy on my hands. This is something I couldn't feel more strongly about.
I use my scarce time and pathetic reserves of energy to do as much of a balance between rest, activity and rehabilitation as I can and know that I sometimes get it wrong. Life is practically unbearable but somehow I just get through it, apologies.

10 May 2009

Post 126: Am I doing too much?

I am in a bit of a quandry. In the old world work would take precedence because it paid the bills. Once, I even binned the chance to go to Glastonbury because my boss (before John Lewis) wouldn't let me go. In fairness we had a big project on and I couldn't have coherently presented to some fairly senior bods after a couple of sleepless nights and a headful of god knows what. Obviously, I was gutted because at the time I really felt this was my last and best ever chance to go to the 'king of all festivals'[Bill Bailey from one of my all-time favourite comedy DVDs 'Part Troll' or was it one of his others, blast, forgotten?] Anyway, before I fly off on that tangent my point was that work was that universal constant that made you get up in the morning and cancel stuff that might hinder your performance or made you rest so you didn't make a tit out of yourself and fall asleep in meetings (too often, ok)Well I am faced with this issue at the moment. Going to events, gigs etc is the thing I enjoy doing: It gets me out of the house; it allows me to see, take out and treat my friends;see some great shows but (there's always a but) despite usually getting one free ticket shows are a little expensive and given my chronic fatigue are exhausting. Maybe I should be spending my limited funds on more rehab rather than relying on the unbelievable kindness of the 'Dom Pardey Trust' and those who have raised and given funds that pay for my continued therapy? Basically I wouldn't be able to live or recover without this.
The reason I bring this up now is that for not the first time going to events has been impinging on my rehab (ie I get exhausted and sometimes events are on weekdays). My first reaction has been 'so what?' because even though I see my rehab as my job these days, it has got to be the worst job in the world!
It is unpaid; I always feel too ill/tired to do it; nothing ever seems to change; Even though I like my main therapist (Ian, who has undoubtedly changed my life), it doesn't stop me wanting to rip his head off sometimes when he suggests new exercises or he wants me to do one more circuit of the hall or when he tells me that the only way I'm going to get better is to 'work harder' when all I can think of is sleep. I'm really on the edge here and feel I'm working as hard as I can for nothing, or at least nothing I can appreciate. All I know is that everyone I know can get on with their lives and I can't. Events or seeing friends are the only real downtime I get from the daily nightmares of fatigue and therapy and to me events are the priority while the payback from my 'job' is so utterly intangible. This week has been dominated by music and culture (I say culture) but I would have had something to go to every evening if my lift on Tuesday hadn't quarantined himself with suspected 'Swine-flu'. Thankfully Shaun is fine, it turned out to be the far less virulent 'man-flu' but better be safe than sorry. Foul-Mouthed Aussie comedian and Australian cultural envoy Brendon Burns can wait for another day, his high-brow show 'an hour of bullsh*t with jokes and sh*t' is bound to keep. The start of the weeks culture came on Wednesday where I cancelled my physio so Jackie and Selwyn could take me to the Minerva theatre in Chichester to see an excellent play called 'taking sides'. Basically the plot centered on the interviews an American WW2 major was giving high ranking society Germans to find out if they had been in league with the Nazis. Throw into the mix the fact that the major is traumatised by seeing the horrors of Belsen In my opinion the concentration camp that yielded the most horrific images of the holocaust, where bulldozers pushed piles of emaciated bodies into mass graves when the Germans had just let the inmates starve to death. Truly some of the worst images of all time. With this in mind the American major seems determined to find anyone guilty. The major is currently interviewing the entire Berlin Philarmonic Orchestra who are all desperately trying to protect their conductor, Dr Wilhelm Furtwangler, their 'Maestro'. The play pans out with the major aggressively questioning Dr Furtwangler whilst the major takes statements from various other witnesses that were in a position to verify or shun Dr Furtwanglers solid denials.
I enjoyed it much more than I thought I would. It was beautifully and passionately acted and you found yourself thinking how hard it must have been to prove anything about anyone in post-war germany. Even who you were or whether 'disappeared' people ever existed. I'm no theatre critic but I think I can judge good from bad and this definitely goes in the former box. So that was Wedensday. I had been the youngest person there by um, about 30 years and by no means the only person in a wheelchair. Chichester theatre matinees are clearly Mecca for OAP's, so I was hoping for something a little different on Wednesday. It couldn't have been more different because I went to see modern rockers Razorlight at the Dome.
I was so impressed, I've obviously heard of them but I wouldn't call myself a fan. I know very few of their songs but I have heard that their frontman Jonny Borrell has a reputation for being arrogant. But my has he got something to be arrogant about! He sings well, plays the guitar well and despite being a bit of an oompah-loompah is passably good looking, ie men hate him and women have a bit of a crush on him, being honest and from where I'm sitting I can see that. Concerts in the Dome are always good and our seats were excellent, just off to the side of the stage where the sound was crystal clear and deafening. Perfect. It made all chatting with my two accomplices for the evening impossible but luckily they'd taken me out for an amazing dinner at the Dome branch of the Gaucho Grill beforehand. Diet, who cares when you've got a rare fillet steak in front of you! My incredibly kind and competent accomplices for the evening were (Simon) Champ and Eleanor. I had got to know Eleanor back in 99 when we were both graduate trainees at HSBC Securities (We both wanted to be stockbrokers for our sins) Eleanor was much better at it than me, and Champ was her then boyfriend. Since then, they have both married other people and Champ has recently just become a dad. I have been on a few awesome holidays with them

and they are two of my most fun friends, so seeing them was a real treat. Aside from the amazing dinner, Razorlight were brilliant, good enough to search out and download a couple of their albums. How did we make do before the internet?
From the sublime to the even more sublime, on friday, by way of returning them taking me to the Albert Hall at the beginning of April(Post 119), I took Jackie and Selwyn to Filmharmonic on friday at the Royal Albert Hall,
it was basically to hear the Royal Philharmonic Orchestra (the greatest orchestra in the world) play music from a number of films in the greatest venue for music in the world, what's not to like? I'm not going to go over the reasons why I love the Albert Hall because I've said them before although I might have noticed another one. It is the preponderance of pretty, polite, well-spoken brunette usherettes who all look so cute in their red Albert hall jackets. Apart from the great show they're reason enough to go to the Hall.
Apart from the lovely window dressing the performance was stunning and I left with one thought 'John Williams is a genius', The Music to Star Wars sent a shiver down my spine and the melancholy crying sound that the Violin makes in the theme to Schindlers List' practically made me weep.
Nice surprises were how enjoyable the themes to 'Dynasty' and 'Dallas' were. An honourable mention is due to Hans Zimmer for the magnificent music to Gladiator. It made me think how much music can add to films, Jaws without the music would just be a nature documentary about a big hungry plastic fish!
It doesn't end there! Last night I went to the Dome again with a legend from my Djing days, a chap called Paul Reeves and his lovely and incredibly sweet pregnant wife Yvonna to see 'Pub Landlord' Al Murray. When I've seen him on TV, he consistently makes me laugh. I'm clearly not alone because the event was 'sold out', which in a huge arena like the dome is impressive. I'm pretty open minded so it sometimes doesn't compute how Murray's jingoistic, xenophobic, misogynistic repertoire appeals to me, probably because deep down, lets face it, I'm a bit of a lad. Tonight, from right wing to left wing, two old workmates are taking me to see Mock the Weeks regular Andy Parsons in Epsom. Make your own mind up about whether I'm doing too much. Bear in mind that this is one of my only methods of enjoyment. Other suggestions always welcome!



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