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29 Jun 2008

Post 52: Bon bloody Jovi

Yowser! I went to see Bon Jovi in concert at Twickenham last night and had a simply fantastic time. Let's get this straight, I'm not a massive Bon Jovi fan but I love stadium rock and if anyone can do stadium rock properly,it's Bon Jovi!
The evening was made up of great moments: The first of which was when they played 'blaze of glory', at school one of my favourite albums was 'young guns' so hearing the man himself play the main track from one of my favourite albums was a bit special. The music continued excellently and unrecognisable to my untrained ear but all with that distinctive stadium rock guitar sound that is so utterly hypnotic. The next thing that for some reason (!) stuck in my head is that about 10 yards away an incredibly beautiful girl started dancing in her bra! How rock and roll is that? The final thing that really stands out is how mental the place went for 'living on a prayer' including how it transformed Tanya from responsible carer temporarily into headbanging rock-chick. I think she must have still been high on the compliment she had received from a random chav/pikey/ne'er do well/local in the car park when he said ' I fink yaw gawjus' That made us both laugh. Anyway, like I said, I'm not much of a rock fan, but last nights gig was unrivallable (is that a word? It is now) as a spectacle and without a doubt Jon Bon Jovi is one of the worlds great performers, as well as one of the worlds better looking people, lucky bastard! It was also nice to see that they don't take themselves too seriously, slipping in some other material from time to time for a laugh. 'we will rock you' by queen, jumping Jack Flash' by the Stones and perhaps most unexpectedly 'shout' by Lulu and 'the Twist'. Unashamedly crowd pleasing. What have I done to deserve a friend like Tanya?

Post 51: 'a change in the weather' and Goldfrapp

One thing that really resonated with me from the latest audiobook I am listening too 'a change in the weather' by Mark Mcewen, a title on stroke brought to my attention by one of the comments on this blog and kindly bought for me by my great friend Simon Winstanley is how with stroke you have no frame of reference to explain what's wrong with you. If you lose a leg (horrific as that is) at least you can probably tell why you're having some trouble walking, whereas with stroke it's virtually impossible to understand why you can't do something you've been doing with ease for years especially when the leg that doesn't work properly on casual inspection looks fine (I would have expected it to have wasted away by now). For example with this damn fatigue. I used to have plenty of natural energy. I like to think it defined my personality in a positive way. Now, in my opinion that's all gone. Plenty of people (my family included) say to me 'it's still the same Dom' but I always disagree, the old Dom would never allow himself to feel like this or live like this for so long. That's why I'm so fed up, because it feels like there's nothing I can do. I was walking normally for years, surely my brain can't have just forgotten how to do it? Well apparently it can if the parts of the brain that used to control certain things just isn't there anymore. This is one of the reasons rehab's so hard and so boring. Its about re-teaching a completely new area of the brain to do something that a completely different area of the brain used to handle and apparently the key is repetition. Completely unlike Homer Simpsons brain then, where he is convinced that learning something new pushes something else out, he tries to illustrate this by saying 'you remember when I took that home winemaking course and I forgot how to drive?' Marge retorts by saying 'you were drunk Homer'. Since my stroke I have become quite the amateur neurologist but for my sins I've always been a Simpsons buff.
Anyway, I'm off to something a bit out of left field tonight. Tireless organizer, fearless driver, endlessly patient saintly friend Tanya is taking me to see Bon Jovi at Twickenham. Now I'm hardly a rocker unlike my friends Gary and Jo who I missed (quite rightly) earlier on in the week when they had donned tight leather trousers (at least I can imagine Gary did, Jo, his beautiful wife probably saved herself) to go to a whitesnake/def lepard gig at Wembley. Looks like I've got my hair dyed just in time for the 80s coming back! Just to get off the 80s theme (always a good thing) this will be my 2nd concert this week because on Wednesday I went to the Albert Hall (again courtesy of the saintly Tanya) to see Goldfrapp. Now, they are rather more contemporary and I was somewhat ashamed to say I knew the square root of FA about them. This didn't matter because in the RAH they were nothing short of sensational. The accoustics were amazing and Alison Goldfrapp's voice is spellbinding. I was utterly enraptured. While I'm here and waxing lyrical about musical occasions, may I heartily commend becomeone at Inigo in Clapham on August 2nd. Yes that's right, after the runaway success of the last one. Great friends Simon and Shaun are putting on another party to raise money for the Dom Pardey trust. I am virtually speechless with gratitude.

26 Jun 2008

Post 50: 'The Diving Bell and the Butterfly'

Well, it's been a little while since my last proper blog post so I need to make up for it. So, it's thursday morning and the day didn't start too well when my carer didn't show up on time. I knew my regular carer, Rocio, a lovely spanish 30 something couldn't make it because she had told me she couldn't yesterday and that she had arranged a replacement for the morning with the agency, when 8:15 had come and gone and mum was still the word I heard Caroline (one of my awesome saffa housemates) frantically calling the agency/ her work trying to establish what was going on. Damn, I have been lucky with my housemates, Caroline was essentially refusing to leave the house until the carer showed up (thus making her late for work). How nice is that? I reiterate how lucky I've been. Here are two ladies (Caroline and Averill) who because of positive discrimination have been unable to find work in South Africa, have come over here and seem to be able to put up with me! They're both good cooks and good company and seem to be willing to go above and beyond the call of duty to make sure I'm OK. My agency carer Rocio is also tremendous, if you remember from elsewhere on this blog getting a lousy agency carer was one of my biggest fears. Instead, she is lovely. She shows up on time, does everything she needs to do and importantly she is more than able to find and get on with things herself, I don't have the energy to micromanage, It was the same at work before all this. Everyone is always much happier left to their own devices to get on with it. This is how nice she is. She sat down the other day and said that if I ever needed to talk she understood how I must be feeling because she, herself, a few years back had spent 5 years in a wheelchair as a result of breaking her back in a diving accident. You wouldn't know it to look at her. She is tall and elegant, stands up straight and walks perfectly, but because of continuous pain still goes to torturous physio sessions (to which I can certainly relate). I have been bloody lucky to be given someone so nice.
Fatigue is still the worst thing. The door to the growth hormone treatment was essentially slammed in my face last week, when an endochronologist at Surrey hospital told me that the myriad tests showed that an injection of growth hormone was 'not justified' as my growth hormone levels were 'normal. It's taken them 7 months to work that out! I would have thought taking one look at the size of me would have told them that, I'm hardly a midget! So there goes my great white hope! The local OT has got me doing 'a fatigue diary' to try and find out when I am most fatigued and what particular things make me most fatigued. I'm not sure how 'all the time' and 'everything' will sound. In a previous life I used to occasionally dabble in recreational stimulants(the operative words here are occasionally, dabble and recreational) which acted quickly and made you feel great. I refuse to believe there's nothing thtat medical science can give me that'd make me feel less sh*t but apparently normal stimulants raise your blood pressure and would increase my chances of having another stroke. A risk I'm not prepared to take having come this far. One of the Neurologists (at Kings I believe) said that I would be unlikely to survive another stroke or worse I could do more damage. Having seen 'the diving bell and the butterfly' A movie that made me cry more than once, it made me realise how much worse my stroke could have been. When I was in Drapers ward at the RHN there was a patient with 'locked in' syndrome. If anyone needs evidence for the non-existence of god, this condition is surely it. The patients mind is active but you are unable to move or speak and the only means of communication is by blinking your eyelid. Noone deserves that,I can think of nothing crueler and there is nothing I am more afraid of. Despite his condition being a lot more serious in 'diving bell' there is one parallel I can draw between the main character John-Dominique and myself: sheer self-disgust at the inability of the stroke patient to help themselves.

23 Jun 2008

Post 49: Housewarming Preamble

Todays post is going to be bit short on information because I don't have long before I have to head out. But next time around when I've got time I'll have plenty (I can hear the groans already) to go on about. The first of which was my housewarming which despite the best efforts of the British weather (it was just grey and dull and wasn't too cold and thankfully didn't rain), all in all a good result. Being a bit of an exhibitionist I had decided to do two (possibly unwise) things:
1. Dye my hair 'blonde' the day before
2.Give a speech to say thankyou for all the support I'd received since my stroke
Well, the first I think'blonde' or 'golden' would be the kindest way to describe the colour and as for style I think Tanya said it best with 'the 80s called and said they want their haircut back.' I hope it grows out soon!
As for 2, here is what I wrote but it probably sounded quite different because I did tend to stray off the beaten track er, once or twice. Many thanks to my sister for turning the pages and reigning me in.
'Hello everyone, I'm glad that so many people could make it out to the leafy shires. This place couldn't be more different from hospital or indeed where I used to live, in Brixton. I have certainly noticed less crackheads, junkies
and wierdos around here. Maybe that will come with time -anyway enough about hospital – it's nice to finally be out of there. 2 and a half years is a long time by anyones standards and it has been great to see how people have stuck by me despite my illness. This has been and continues to be the hardest thing I've ever had to endure and there is no way I could have done this alone. Friends, family and my former employer John Lewis have been amazing as have a lot of the hospital staff who've had to put up with me. I have by no means been the easiest patient to deal with. For starters I'm not the lightest or most patient person in the world so being an inpatient for so long has been an exercise in trial and error and just because this speech isn't littered with four letter words doesn;t mean my language wasn't back then..
So the house that you see before you today is down to the sheer good luck of having this property in the family - most other people wouldn't have had this chance, it was only in the latter part of last year when the hospital started talking about putting me in a home when the Pardey/Stoker machine kicked into action realising there had to be an alternative. Could you imagine me in a care home?
Anyway, it was my cousin Julie's suggestion to convert one of these houses to be a bit more wheelchair friendly and as luck would have it this house wad lying vacant ready to be renovated and then rented. I first saw this place in January this year and my heart sank - The house was basically a shell and it was impossible to imagine living here.
What you see before you now is testament to the skill and talent of my brother, Chris, so often the unsung hero. Some of you may have had the odd bathroom or Kitchen done by him but this place is testament to what he can really do. It really is amazing, and that is not the only amazing thing. Some, if not most of you will remember my 30th , I truly hope for everyones sakes that I have not or will not witter on for as long as I did then, but it was on that day that I believe the Dom Pardey Trust started. Those of you who aren't familiar with it must know that it is through the incredible generosity of friends that I have been able to put such fantastic things in this house. TV's that I can actually see, a computer I can actually use and an electric bed that mimics some of the features of a hospital bed without (thankfully being a hospital bed. The trust is also helping me pay for therapy,particularly all important physiotherapy which I otherwise wouldn't be able to afford. This to me is yet another example of how lucky I have been and how my convalescence could have been even harder than it is.
It remains to thank you all for being such an incredible support to me during the most difficult days of my life. I wish I could thank everyone by name individually but each and everyone of you knows what they have done for me in the last two and a half years, and know this – when I have recovered I will be there to return the favour, with interest. This experience has been profoundly humbling'

14 Jun 2008

Post 48: 'Running on Empty'

Like one of the comments on this blog said 'it looks as though you're running low on inspiration', charming I thought but dead right. As so much less happens in my life than anybody else it's difficult to know what to write about. In a dream I had the other night I thought it might be quite interesting to try and explain what I used to do. Unfortunately I imagined a few faces dropping and eyes glazing over. I then thought that the only people who might be remotely interested would be some of my former colleagues who were none the wiser, but honestly I used to work bloody hard doing whatever it was. I loved my job mainly because I loved the people I worked with. OK every so often the idiosyncracies of the John Lewis Partnership used to drive me crazy. For a start, because the place is a partnership (therefore everyone is a partner) means that many more people are involved in the decision making process – this inevitably meant that getting anything done quickly was a challenge but because of the slightly (ahem) old fashioned hierarchy sometimes the smallest little thing would find its way into the hands of someone very senior. It is this eye for detail that is often frustrating but sets the place aside from a lot of other retailers. God I miss the place. Since my stroke they have been so supportive. I used to love working for a retailer, particularly a fashion retailer. I used to take some pride in my appearance because of this, ie I used to iron a shirt and wear a suit but no tie. The thought of even ironing a shirt these days is anathema which demonstrates that after all, there may be some small advantages to this goddamned stroke! In the same way I am unlikely to ever do any washing up ever again. If I can my recovery will have been astounding or I need to have some serious words with myself! I used to sit pretty near the director and head of Merchandising for menswear who used to take the piss out of me every day. I actually used to love the banter. One of the things that Peter (the director of Menswear) used to particularly focus on was my collection of shirts. He'll be pleased to know that it might be a bit tricky to wear a proper shirt again and that my entire collection of shirts (amassed lovingly over several years) were completely destroyed in the fire at my parents house along with all my other possessions after my parents had taken all my stuff home for 'safe-keeping' just after I'd had my stroke. Talk about kicking a man when he's down, I digress, I think I'm just about over losing everything I own I'm just not quite over losing everything. I'm not in the best of states at the moment because I've just been transferred from the excellent NHS funded carers to an agency carer which we'll somehow have to fund. Things didn't start too well on handover day when no-one from the agency showed up till 10am. Things are now sorted out but it didn't exactly inspire confidence. Anyway today is a saturday and Tony is taking Carlie and I to the Stella Artois tennis. I'm hoping that we've handled the many logistical hurdles ( I think Carlies are even more substantial than mine) but she handles such things much better than I do. Hopefully we'll have a good day and the sun will shine. I will report back in my next blog entry which should also detail how the housewarming goes.

8 Jun 2008

Post 47:'Samsonesque' haircut or a collective sigh of relief

The subject of todays missive is going to be decidedly mixed. For starters I feel I've probably lost any of my scant remaining powers because I've forced a haircut on myself. This samsonesque happening has finally got rid of my highlights (for the uneducated my blond bits ( no, you don't say) ). OK so it's tidier, but does it really need to be tidier? I don't think so so I might just sod it and I might get them put back again. I'm sure no-one really cares. The interesting thing that has happened in the last week is I found a fellow young stroke survivor who has decided to share his thoughts via a blog too. He has a similarly acerbic sense of humour and he has told me he enjoyed reading this. I mean the poor guy enjoyed reading this stream of misery, what it demonstrates to me is how extraordinarily unhappy strokes can make people I know that this applies to Mat and I , His blog is at http://onehand.tumblr.com/ . The poor guy can relate to some of my tales,particularly around heartbreaking breakups and the exhaustion that simple stuff like morning routine's can create. Despite it being tragic what has happened to him he has regained being able to walk independently with a stick which is amazing, although he refers to himself as a 'wobbly person'. To be honest I have tried to imagine what it would be like to be steady on my feet again and it is very hard to imagine as is using my left arm properly again. It's pretty grim always having thoughts like these just below the surface but I was given a bit of heart on friday when I went back to the TLU (on the way back from the hairdresser) to primarily get weighed (as they've got special scales) but to catch up with some of the staff and patients, including my remarkable friend Carlie who's in the main hospital. It's always nice to see Carlie. She has this amazing calming influence and she always tells me I look better than I feel. She really is rather special. What gave me heart yesterday was seeing one of the TLU inmates, Yaya (the sarf London gangster) walking confidently without a stick. I also bumped into Chris (the fanatical Chelsea fan) who looked a lot better. He was genuinely pleased to see me and we even had time to trade playful insults about each others haircuts. Him that I'd finally got rid of my 'gay' blond bits and me about how his new haircut further accentuated his baldness. Touch̩ I thought. I suppose I do miss having other people to banter with and importantly having the inflection in my voice to carry it off. Since my stroke it has been rather hard to convey that it's only that rude if you take it literally and don't apply the requisite pinch of salt. People just see you as charmless and rude if you interpret everything in the same way as the average American would. OK so that's a tiny bit of a generalization but you get the point! The only thing that slightly marred my visit back to the RHN (apart from the fact that I will forever associate the place with the most miserable time in my life) was the story the weighing scales told. Unfortunately I appear to have put on weight yet again. It seems like a neverending futile battle which I can't seem to win. I'm not a fat bastard but the scales tell a different story. What really confuses me is that most who visit say that since leaving hospital I look like I've lost weight and I convince myself it must be because I'm no longer eating the RHN stodge. The south African ladies I live with always cook my evening meal with fresh stuff and the same can be said for Tanya's awesome cooking. I guess most of my troubles around my waistline can be laid at the door of inactivity, the thing I can't bear but with which I have no choice. As I have on an avenue Q (look them up if you haven't heard of them) mug Р'It sucks to be me'. Speaking of things getting worse, next week there will be a change of carer РI will be transferred from the excellent carers the NHS sent (excellent and ultra reliable local middle aged ladies who have been doing this for years) to a care agency which I will have to pay for and organise myself. I've got several problems with this the least of which is that I'm going to have to pay although I am a little disconcerted. For starters from my time in hospital I'm not tremendously positive about agency staff mainly because there seems to be little incentive for them to really try and make much of an effort, so I'm frankly scared. A social worker from the long term care team turned up at my house to meet me and my folks (they were here for the meeting because they share my concerns). Unfortunately the social worker appeared to be the kind of 'right on' middle class hating lady who seemed only too happy to wash her hands of me because I'm clearly the type bent on sucking the limited resources of the state dry bizarrely because I'm not destitute and the flat which I own in Brixton which I can no longer live in is over the asset threshold so I am disqualified from long term state care. My mum instantly wound her up by ploughing into a daily mail-esque rant about the iniquties of government policy on care for the disabled. Neither side was willing to budge Рthe social worker stuck to her guns as only she could whilst mum continued to rant about the unfairness of government policy.Obviously, the social worker could only follow her policies but these are not people you get on the wrong side of because they can make things considerably harder if they so choose. Anyway, we will have to see. I'll soon find out and let you know.

3 Jun 2008

Post 46: Trying to stay occupied

My, it feels like an age since I last wrote anything for this. It's not because I've been lazy mind ( well not that lazy). Living this independently has its advantages but it also has its challenges. The biggest of these is staying occupied in a way that isn't exhausting. Fatigue and always feeling terrible are my worst problems and prevent me doing most things. Even watching TV. I have also been guilty of running low on inspiration for this as this post probably demonstrates! There is definitely less stimulus at home but at least I don't feel like a small child subject to the rules, regulations and rigmarole of being an inpatient and being surrounded by people you couldn't escape from no matter how hard you try. I soon discovered that trying hard to get away from it was fruitless because it was too exhausting and made me feel worse. One of the reasons I think I get so tired is because I am constantly living in fear. You name it, now that I'm in a wheelchair, I can be scared of it. Believe me, always being terrified is exhausting! If anyone knows an antidote to feeling this way, please let me know and don't forget that I'm a cynical bastard (no really) so words don't often work (unfortunately). That said I'm still alive and no longer in hospital which is something to celebrate! I can't believe I've said or thought something so absurdly positive! I can think of a few people that might surprise! Of late my talent for self criticism has been particularly special and helpful to no-one. I seem to have this habit of torturing myself, not physically – I think I have drawn the line way before self harming (see stuff about fear). Anyway I digress, Do please brave the journey and the potential drivel to come and see my new place(if not me) or come to my housewarming BBQ (Please contact me if you should know the details and haven't heard anything). I'm afraid I did a 'proper job' on the invites and probably ended up inviting all sorts of poor unsuspecting people who've got far better things to do and forgot all the people I should really be inviting. Oh the joys of being unable to see or write properly.

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