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28 Dec 2008

Post 92: The typical (ish) family christmas

I have finally come back from Christmas after a week at my parents house (that is as close as I get to a holiday these days) and I have to say that I'm glad to be home because i'm back in my routine 9((exhausting but less exhausting than anywhere else)and because i missed pickle, erstwhile kitten, now fully grown cat. i am one of these pathetic people according to dour, negative bastard Frankie Boyle (therefore one of my favourite comedians,see post 88), seeing as I have so far failed to find love in my own species Pickle helps a bit, she really is a lovely cat .

It has now officially been three years since my stroke, almost three years during which every conscious moment has felt like I'm too exhausted to do anything, even open my eyes.
I was thinking about this on the way back, because people can't understand fatigue and the typical British way to deal with it is to 'just pull yourself together' or the equally unhelpful 'just forget about it' I have been trying to put it in terms that everyone will understand, well, I think I've got it; that feeling you get when you've just woken up and you decide to call in sick (genuinely) and you feel too grim to face anyone or do anything other than stay in bed. That's how I've felt everyday for the last three years, it's no small wonder that I don't come across as the most positive person!
So, back to Christmas, my parents have and do do everything possible to make my stay at home as comfortable and easy as possible but it doesn't seem to matter how hard they try because as long as I feel like this I will always find whatever situation I'm in incredibly difficult. In the amazing rebuilt house they have even made sure all the downstairs doors are 1m wide to make it easy for me to get from room to room without bashing the place up in my wheelchair but this doesn't stop my mum following me around, putting immense pressure on my wheelchair driving skills because making the slightest contact with doorframes/skirting boards/walls would 'spoil everything'. So whenever I go home I'm already under immense pressure. What made things even harder this year is that I'm supposed to be on a very strict (therefore boring) diet and seeing as my mother is one of the finest cooks/hostesses in the world Christmas lunch was bound to be tinged with barrel-loads of guilt, indeed it was but nonetheless it was superb! As was the company, as my whole Uncle Ians family were able to be there pictured at my older cousin Nicky's (now pregnant) wedding in Wales at the end of summer in 2007. I have no current photos as I managed to misplace my camera on day 1 of Christmas, bloody typical but at least it has shown up again, after everyone had left, Argh! My Uncle Ian
(as mentioned elsewhere) really is a character, we think of him as Basil Fawlty without the moustache with swearing. He had us all giggling at the dinner table when he told us that his 29 year old son Danny's main present was 'two hundredweight of coal for Danny's coal burning stove, we thought he was joking but he was serious! Always thinking that man. Scarily, Danny becomes more like him every year, not such a bad thing it may sound but I'll bet Dan is nervous!My other cousins are just great. Nicky has married a great lad and all seems well there,Julie, who is exactly my age, together with boyriend Luke is a great girl and both her and Nicky get more beautiful each time I see them. So Christmas day was enjoyable if a bit exhausting,loud and tinged with dietary guilt but one thing was to really spoil things for me, my Dads drinking. In the evening he must of snuck off for a couple of large whiskeys which he obviously drinks quickly by himself. Unfortunately after this he is completely incapacitated and if he's not comatose and snoring loudly on the sofa in front of a full blast TV then He is staggering around the house, impossible to get one iota of sense from or to get him to do anything safely, perhaps I never used to notice it before I needed his help so much. He'll hate me for this but the only reason I bring it up here is that whenever you call him up on it he swears at you (even when he's sober). This has been going on for years and is unfair on everyone (especially my mum who has put up with it like a saint for far too long), I only bring it up here and now because I need him to be responsible, this is no good for his health which hasn't been the best of late, and without him, our family's f*cked and I know that my mum and I couldn't cope without him, sheesh, am I glad to get that off my chest,I hope it does more help than harm. Thank you for reading this, Christmas is forever going to be tinged with sadness for me but for those that can enter into the spirit of it, for what it's worth, Happy Christmas!

21 Dec 2008

Post 91: The Dugdale bros and the mighty Boosh

Stop the press! A blog post on time,eh?Come again etc, etc, I can actually sit in front of my computer and write this for a change and I've already had a visit from my best mate Tony (pic in post 88) this morning! So this Sunday feels on track. Later today some mates of mine (Will and his brother Chris Dugdale are going to take me to see something (as yet undecided) at the cinema. Now Chris is one of the top close-up magicians in the country and has agreed to bring some magic, ostensibly for my neighbours six year old son Dylan (but I'll enjoy it too, as it's brilliant) which I thought he'd enjoy despite the fact he drives me nuts with the fact he is unable to do anything at a walking pace or not demand attention for anything he's doing. I'm sure I was probably the same at his age but over the last three years what was already a short fuse has well.... not exactly increased in length. I'll report back next week, but I have seen his magic a couple of times before and it is amazing! By standards it's been a busy weekend, yesterday I was taken out for lunch at the Bear (where else) by mates I met through DJing Shaun and his lovely wife Renae and my great mate Simon (See Post88 for their pictures incl a rather stupid one of Simon in a fake moustache). Simon and Shaun were partners in crime running a great event called becomeone that I played for a couple of times, happy days. Since my stroke they have been awesome, putting on two totally rammed fundraisers for the trust,yesterday they refused to let me pay,what great friends they have all been, and how could I forget 'bad influence Mernie
, who I understandably haven't seen much since she had a baby. She has calmed down a lot from the days when one bottle of wine would become two and midnight in front of a film would become 2am in the local bar, I'm probably just as much to blame but, happy days – no good lunch out would be complete without me lamenting the fun I used to have with this lot and can never have again.
Moving on, instead of being able to go out and do what I want with my friends, I now have to meticuosly plan to go to events with people who don't mind the (dis)pleasure of my company for an evening or mind loading my chair into my specially adapted van, I now go to events.
For example, the last event I went to was 'the mighty Boosh' at the O2 Arena (the former Dome) by my good mate and talented DJ Oli Cassidy. Luckily Oli is a big Boosh fan and so could appreciate the surreal humour of Boosh. I reckon if you'd never seen it you wouldn't understand what the hell was going on.Wierd and Bonkers as it was, I still enjoyed it more than Steve Coogan the week before that my old Uni mate Karen had taken me to see at the O2. OK, it was an enjoyable night because national treasure Alan Partridge was brilliant and Karen is a honey (bottom of post 88), but Coogans other characters in the first half were rubbish. His 'mea Culpa' song to the tune of 'its beginning to look a lot like christmas' at the end about rumours in his private life 'everbody's a bit of a c**t sometimes' was very funny and showed (to me at least) that his ego hadn't spiralled out of control.
Finally, in terms of my physio, I tried out that walking harness/gantry (pic at the end of post 83) and a treadmill that the NHS community physio had neglected to mention that they had until last week. When I had first thought about it, it had become my 'great white hope' for helping me to walk again. After having a go on it, it is no longer my 'great white hope'. Call me a dour, negative bastard but it was such hard work! I'm fed up with things that were once easy being so hard and concomitantly having to work so much harder than everyone else. Merry Bloody christmas.

Apologies to those who may have seen this before but this is what I sent to the whole trust membershp.

Well,well,well or should I say Ho, ho, ho or what I'm most likely to say which is 'bah,humbug'.I have decidedly mixed feelings about Christmas because Christmas day marks the anniversary of having my stroke, it will be three years this year and I would be lying if I said I was pleased with where life has left me. In truth I find things very difficult and often (always) wish this had never happened to me. Practically the only thing that has kept life worth living is my friends and family and this support is brought together through the trust. Sure, donations have done a lot to improve my quality of life and improve any recovery I make but more than that, it has provided a rallying point for all sorts of people who want to show their support. This has really helped me drag my mood up, often from the depths of utter despair.
Well, I hope this message hasn't spread too much darkness in what is supposed to be the season for being jolly. For what it's worth,Merry Christmas and a happy new year and sincerest thanks to you all!
Dom (and the trustees)

14 Dec 2008

Post 90: a weekend away

I have been at my parents house this w/e so a post will appear by tuesday morning describing my trip to see Steve Coogan last week and my weekend away.
I must apologise for what it's worth once again for not having this ready first thing Monday but again I plead guilty on the grounds of diminished responsibility because I wasn't at home in front of my computer to be able to do a whole post, OK, so I managed to get to a computer but because of the difficulties I now face with my eyesight and the fact that it would have required superhuman stamina (normal stamina for anyone else) and me being more antisocial than normal ( that's pretty antisocial) I just couldn't manage it, so again I do offer my sincerest apologies to all two of the regular readers of this rubbish.
If there are more feel free to pleasantly surprise me by emailing me.
The reason I was away this weekend was to spend some time at my folks 'phoenix from the flames' house and to spend some time with my parents when they haven't had to drive for an hour and also treat a few of my more married friends to a relaxing weekend in the country in the middle of the silly season. In times gone by this sort of weekend would have been unthinkable (I'm talking way before my incarceration in this wheelchair), instead it would be about who was bringing what booze, identifying which comfy piece of floor I'd sleep on and which rooms were 'out of bounds' and being positive mum and Dad were out of the country. This time my six friends were all marrried couples, Mum was doing the food and everyone had beds except Nick and Sal who were stoically (heroically?) driving back to London after dinner because they feared their 11 month old son Oscar wouldn't sleep in an unfamiliar place thus sparing everyone the risk of being kept awake by a screaming child. It would make a pleasant change for me, actually having a reason to feel tired, but I salute their reasoning and thank them for being so considerate. Anyway, I'm sure you're getting the picture. Life is changing for me for two reasons:
1.Growing up – Where the concept of spending a weekend at my parents house actually involves my parents being there, the weekend actually ended up as much for them as anyone but it's nice that a lot of my friends feel so comfortable with my parents and vice versa, it meant that it felt that people had come to see them as much as they'd come to see me or anyone else plus my mum loves entertaining (It must be why I love doing it so much). I used to enjoy nothing more than having people round for one of my staple spag bols (the only thing I could do for big groups) and a bucketload of red wine.
2.Being disabled – has meant that the emphasis for all social gatherings has changed, now it's more about seeing other people and them making more of the running and me doing much more of the listening, listening is not one of my greatest talents having inherited Stoker genes from my mothers side of the family, people who know her/ The Stokers will probably allow themselves a wry smile should they read this! Seeing people at least used to be about talking/joking and laughing. Being clear it still is but I do a lot less of it because all I can think about now is how tired I feel and must look and how awful my voice sounds. God this is so painful, it's so nice spending time with my friends but it is hard feeling like I have been robbed of everything that made people friends with me in the first place! That's why I am so pathetically grateful to anyone who shows kindness towards me while I'm in this condition. I guess it's because I've always believed people have hard enough lives and people choose their friends based on who makes their life easier/better. At the moment I fail to understand how I can do this. I'm not cheerful, I'm not happy, I'm not full of energy, I didn't always used to be either! But I used to be able to turn on one good characteristic even at the worst of times. I can't do that anymore or at least I don't feel I can. Enough Self-loathing, I'll try and summarise my thoughts on Steve Coogan tomorrow. In the meantime some great news – those gluttons for punishment who have been reading this for a while may remember (back in post 77) me mentioning old friends Becky and Harry Morrison and how (after IVF) Becky was pregnant with twins after she was told she couldn't have kids, well, she had them the other day (Freya and Jasmine) and they look gorgeous. Sometimes, events of real significance put life in perspective. This is one of them and it's a happy one!

10 Dec 2008

Post 89: Dependency on others

It is very rare for me to write more than one blog post a week because I don't really have the time or energy or even that much to say but today has been different, sadly not in a good way.
You allow yourself to relaz for just one minute and bang, everything goes tits up. I had allowed myself to settle into my morning routine because that's what people do, they establish routines and get on with them. My routine is now slightly different from able bodied people because it is dependent on others. Because I can't walk (you would have thought thaat simplest of things) I need a carer to put my waterproof shower chair in place for me in the mornings and put my clothes on the bed for me to get dressed into after I have my shower. While I'm getting changed one handed independently which is apparently a skill (more an art!) she prepares my breakfast which I can't do myself because of extreme fatigue and lack of coordination, basically without my morning carer I can't really get out of bed and eat anything.
I regard independence and the ability to look after oneself as an attractive quality. Therefore by my standards I find myself deeply unattractive which isn't really a great way to start the day, welcome too my world. This morning was different because my carer couldn't make it, which automatically to me meant that I couldn't get out of bed, wash, dress and eat which is about as dire a way to start the day as you can, christ I'm already depressed. Luckily we have managed to cobble together a way of me managing to wash, dress and eat by making my housemate late for work (which can't happen regularly), asking my other neighbour for help (which also can't happen regularly). This morning has opened my eyes about how dependent I actually am and how easily things can actually fall apart.
I also had to write a difficult message yesterday to my lovely physiotherapist Natalie who I am very fond of, life is never simple these days:
Hi Nat
Of course I'll give you a glowing testimonial, I think you've been
wonderful for me and I think you're wonderful. There is however
something that I also need to say which may make you a bit less
cheerful. At this stage of my rehab I feel that I need a blunter
implement than just your walking sessions to achieve my physical
goals. Also coming up to Putney twice a week is an unacceptable
burden, particularly for my dad. As you know and have showed regular
antipathy towards, I see a sports physio for personal training twice a week at my
home in Oxshott, he is locally based , visits me at home and doesn't
charge for travel. He is also strong enough to not require additional
assistance when treating me and think him more than competent to
assist me to walk more regularly with the frame once we have secured
access to the local hall/sports club and found a suitable space to
walk. Rest assured, I believe that it is you who has got me this far
and I am so grateful and fortunate to have been treated by you, I have
utmost respect for your Neurophysio expertise and your cheerful manner
when treating me.
I hope this makes sense and I can still call on you in a consultative
capacity and we'll always be friends.
That was not easy, because nothing is these days.

8 Dec 2008

Post 88: Xmas parties

Apologies this wasn't up first thing Monday. I spent all day Sunday writing it but didn't manage to finish before being taken to see self-styled 'Darkest man in comedy' Frankie Boyle at the Apollo. He certainly takes no prisoners, unlike dreadful comics like Bernhard Manning or Roy 'chubby' Brown who entertain(ed) (!) their audiences with bigotry by the bucketload and runaway racism as well as a smörgåsbord of chauvinism, misogyny, and cheap comedy, Frankie Boyle slightly more cerebrally takes a sledgehammer to Political Correctness or 'spastic gaytalk' as he calls it.Like all Scottish Comedians, he does swear a bit too much not that I have a problem with this but I agree with 'Dalai Farmer' Bill Bailey (see post 85) that swearing suffers from the law of diminishing returns!Seeing as going to see Boyle was the brainchild of former work colleague, incredible friend and support Simon Dawes. Good work fella!
The rest of this post will attempt to describe the short term happiness I felt on Thursday evening when the Dom Pardey trust put on a repeat of last years drinks at the Album bar and kitchen just off the Kings Road and also try and recount some quite different details from the harderfaster.net Christmas party in Holborn on Saturday night where they were kindly donating all proceeds to the trust.
First -Thursday -I don't get many opportunities for enjoyment these days but not a lot can compare to the feeling of seeing most of your friends together. Its a pretty special feeling I can tell you when you feel like death 99.9% of the time. I would like to be able to thank everyone who showed up or sent their apologies but I've got no chance of remembering so I do apologise if I mention some but not others!
The evening was the original brainchild of old college mates Victoria Denning (nee Smith) , Helen VJ , Alice Icely (nee Woolnough) and my best mate Tony Reid, they have all helped me so much since meeting them and particularly since my stroke! What is so sociable about these drinks is they are ideal for the generation up (that's pretty diplomatically put I think). Over the last three years my parents have got to know my friends pretty well and vice versa and my parents have had to deal with so much more than people at their stage of life should have too, the near death and disability of one of their sons, the hospitalisation across the Atlantic of their daughter with a potentially life threatening condition, Dad having his own health scares, mum having a couple of close friends/relatives develop life threatening/ending cancer and to cap it all off being left in the clothes they were standing in when their house burnt down. Its amazing they are still sane and a mystery that they go to church. If there was ever an example of god having forsaken someone then surely it is they. So I reckon Thursday was as much for them as for me. Jill and Richard, we salute you!What really took me by surprise was three things, Firstly, the turnout, slightly less than last year but enough to convince me that 'charity fatigue' hasn't set in too badly, secondly, people who had made a special effort to be there, the most important of which was a lovely girl called LindaP who had a stroke when she was 24 and now you wouldn't know it, she had got in touch a while back through facebook after reading online somewhere about my stroke and we met up when Vicky, PJ, Tony and Richard took me down to Sandwich in Kent for the weekend in September (Details in post 81). She really is lovely as was her companion Thomas I have found there to be a particularly strong empathy about our shared experience. Without exception I have always learnt something or been given hope from meeting fellow stroke survivors, and I was particularly grateful to Linda for coming all the way from Deal (nr Dover) for the evening. Travelling is a massive undertaking for the stroke survivor (I find it exhausting to get between the sitting room and my bathroom for example) so I was incredibly impressed and grateful for the effort she had made. Then there was James Pyemont < , a guy I used to go to school with who had visited me in Charing Cross hospital and at Kings in Camberwell (Conveniently and Curiously because the hospital was on his patch (since leaving school James has bravely joined the Police). Then of course there was John Maynard , my old master in charge of squash at school who had come to visit me in Charing Cross hospital, he regaled me with tales of what my old teachers were up to since I had left some 13 years previous! It's really been that long but it was so kind of him and his wife to make the effort! There was also Carole LeeP , recently retired as director of buying in furniture,textiles and lighting from John Lewis, a wonderfully eccentric lady ( her and her husband have recently returned from riding a motorbike around New Zealand ).Since my stroke she has been a great source of support as have John Lewis in general. I was also thrilled to see two figures from my working past, the former head of merchandise in Menswear at John Lewis, Now Director of planning at Fred Perry, a Champagne Socialist who I've had many a friendly row with over a conspiratorial pint, Richard Gilmore (sadly no picture), whilst the chap I used to sit next to in my first job (in the city at HSBC) turned up, Jon Dann – we were able to wax lyrical about how mental the city had been back in 99-2000 when we were both telecoms analysts during the internet/telecoms bubble and how many hours we had had to work. Also contemporaries of mine from JL, Ed and Justine were there, Ed probably to see if he could repeat his success of last year when he copped off with some nameless,unsuspecting girl, actually he's seeing someone now so that couldn't be the reason, Justine to give me news of her first baby Last but not least were Jackie and Selwyn Kennard who have been great friends to my family and I since we've known them. I used to sit next to Jackie at John Lewis (she was my bosses secretary and she used to treat me like an errant son, fair enough, some might say
The third thing was of course, That I was struck by the number of beautiful girls there were, no post on this blog would be complete without an ode to beauty. I'm on dangerous ground here because I'm dead meat if I leave anyone out. For starters there was Leigh, a good friend of mines wifes maid of honour,old college friend, now actress Kath , old college mates, Sara and Claudia , great mate and former HSBC graduate trainee when we both started work Eleanor , My former Junior Common Room President (at Uni), Helen who was looking great,former colleague Harriet who I initially mistook for someone else, when said person showed up I dug deeper and introduced them and instead of letting them decide on their own helpfully proffered 'don't you two look alike?' word to the wise, never say this. Harriets charming 'lucky bastard' husband Chris turned up to get her, Former colleague Anna with 'laugh a minute brummy' boyfriend Paul (I somehow used to manage these two jokers at JL).Then there is of course Fi and Jo, P ( as in Jo and Gary see post 82 who I met through DJing/Clubbing) OK, so that's enough of that!
The comment that kept coming round was that I was looking much better than at last years drinks to which I would invariably reply 'I wish looking better would translate into feeling better', ok so that may not be the most positive response, but I sadly have got past the stage of positivity for positivity's sake, or happy-clappy positivity as I tend to think of it, unfortunately I'm far too cynical.
From the sublime to the ridiculous. After the rather refined activities of Thursday. A website that I used to spend far too much time on when I was Djing put on its Christmas bash yesterday in a pub in Holborn during the afternoon/evening/night kindly declaring that all proceeds would go to the trust. I was pretty chuffed that they did this but although it was nice to see a few old friends it reminded me of how I can't cope with these kinds of thing anymore not because I'm now too old for it but because my disabilities make it too hard. I can't cope with the noise and the sheer volume of people, talking is very hard and tiring,hearing and getting myself heard is very hard and to be honest, I've lost most of my enthusiasm for the music now. That does make me sad. Anyway, the event gave me a chance to catch up with people which beats sitting alone and watching telly on a saturday. First and foremost the man I have to thank for making this at all possible was Dom Icely (see post 69). My friend Simon , who used to moderate the forums on Harderfaster suggested Dom in the first place because he was just the type of guy who'd enjoy himself because he used to love that sort of music, an inspired choice, because when it was time to go, Simon had to go and find him and literally drag him off the dancefloor! Going gave me a great chance though to see friends like Shaun and Renae, Shaun even DJed with absolute smouldering mistress Leigh . They'd never played together before but it got my foot tapping and it wasn't a spasm! Seeing friends remains my biggest priority outside of finding love again and walking again obviously. On Friday I went for (yet another) appointment with a fatigue specialist at the swanky (thankyou private medical insurance) London Clinic, even though the bloke I saw is an Endochronolist (Hormone specialist) which gave me nightmares of a zillion bloodtests followed by them doing precisely nothing like last time this guy suggested that poor sleep/rest caused by poor breathing since the stroke may be partially responsible. Step 1 would be a sleep study,precisely the thing a friend of mine in the states suggested about a year ago. When I mentioned this to Putney hospital they made vague mutterings about how doing this sort of thing 'undermined thier expertise' blah, they just couldn't stand it that someone else had had an idea they hadn't. Pathetic, allow someones quality of life to be undermined so they can save face. In the same way Tash was never allowed to stay with me at the TLU Iin Putney because of 'Health and f*cking safety', as Stephen Fry would say 'the three worst words in the English Language, well four'. God,finishing this has knackered me, I need to rest before I head off to the Dome with Karen to see Steve Coogan.

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