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30 Aug 2008

Post 67: Never actually feeling any better


I'm not in a great place emotionally at the moment. I've just had another week where I put in loads of effort,energy and time and I don't feel any better, physically or mentally. It's one of the worst things about this and I know I've said it before, that regardless of what I do, I never feel any better and it didn't help being worn out by SW4, but I've got to do these things. A friend (Lizzie) said an extremely kind and poignant thing recently, that she wished a few of them could just take how I feel onto them for a few weeks/days just so I could have a holiday from this, if only.
The other thing I realized this morning is that I'm surprised if anyone still reads this given the infrequency with which I update it. I perhaps naively, almost vainly think people might treat this as something to occasionally look at but people are thirsty for new content and sadly I don't get much time to update it and when I do it's slow and exhausting.
What has been good this week is I had two really good visits and a friend of mine raised over £1000 for me by competing in an act of physical lunacy, a half triathlon. As far as I'm concerned the man's (Will Dugdale) a hero, details here http://www.weight-coach.org/dom-sponsor-triathlon.html , The same goes for my gorgeous friend Carly Evans, who recently raised £500 for me by competing in a crazy event called Tough Guy, the name itself fills me with dread.The great visits were onThursday from Simon and on friday from Ian. Simon had the week off so he came down here on Thursday afternoon to watch a film with me and cook me lunch, an incredibly nice thing to do. Not only was he good company but he's bloody funny too. The same goes for Ian, who doesn't get out much since having a son. Not only is he one of the funniest men I know he's also one of the finest DJs in the land. I should have scheduled things better on Friday though, because I coul barely speak for tiredness after I managed to organise three physio sessions in a day on friday. By the time Ian had arrived I was barely compos. Which reminds me of another thing I got told this week. In conversation with the community occupational therapist her theory for my tiredness is that I haven't given anything up. Of course I bloody have, I've been forced to give everything up! Her stance is that I have to learn to live with my new energy levels. I'm afraid I say bollocks to that,it's not bloody good enough. That's like trying to tell me to live without walking.It's not going to happen because I'm not going to let it happen because living in a chair is no way to live.
One thing that has been working out well has been my neighbour doing the role of morning carer. The fact that she only has to walk yards rather than struggle through the morning rush hour has given me more peace of mind, an incredibly valuable quantity whatever your situation. The only thing that has ever so slightly winds me up, as I crave peace and quiet in the mornings is that her 6 year old son, Dylan insists on helping in the mornings, now Dylan is a great kid but obviously the summer holidays have dragged on and he's bored because he's as likely to follow instructions as the US Marines were at Abu Graib so most mornings there is some sort of shouting match between Dylan and his mum with a half asleep yours truly stuck in the middle, I'm sure things will change when he goes back to school next week.

24 Aug 2008

Post 66: The SW4 Music Festival



So, on saturday I went to the SW4 dance music festival, something a few months ago I would never have imagined possible. It was a huge investment in energy but it was worth it to see quite a few of my friends, listen to superstar DJ John Digweed and see 10,000 people having the times of their lives. This was the 3rd time I'd been to SW4 and I'm convinced now that the organiser, an Aussie called Damo who I happen to know must have done some dodgy deal with Satan for the weather because if it rained the festival would be misery. The list of thanks is long and starts with one of my Saffa housemates Averil for driving me there and back and for somehow keeping herself entertained all afternoon when I just buggered off with my mates. I particularly want to thank Simon for then taking the lead in looking after me when the temptation to do ones own thing must have been there. I am particularly grateful to him for on a few occasions he trailblazed a path through a seemingly impassable ocean of people so I could get from A to B, the man is a legend. I also want to thank and re-say hello to all the people who made yesterday so special, Shaun and his lovely wife Renae, gorgeous girls, Lizzie, Sharon, Mernie, Leigh and Dee. Michael who I hadn't seen for ages, Gary and Jo, Paul and Sioban who looked after me for ages, Gaelle who as ever looked great and all the slightly mental randoms who looked after me on the disabled viewing platform especially fellow wheelchair user Steve who was having a determinedly good time and lovely Angel who talked to me when I could barely stay awake. SW4 has a special place in my heart. In 2004 it is where Tash and I got back together, I'll never forget Sasha playing 'Mr Brightside' as the sun went down on a glorious afternoon on Clapham Common and the walk home to my place in Brixton not being far unlike most festivals where you're several grim hours from getting home via various modes of transport with fellow casualties from the night before. In 2004, the sheer proximity of my flat to SW4 led to an epic impromptu party which seriously pissed off my neighbor, that'll never happen again!
In short, despite all the hard work, it was worth it although for the record I was dissapointed with DJ Erick Morillo, who I have seen several times before and he was masterful. Hopefully, when I've recovered from my stroke (in a few long years) these sorts of thing will still be happening and I hope I can enjoy some of them.

21 Aug 2008

Post 65: Getting stuck in a lift

Not the best week sadly, the only good news is that my lovely neighbour has taken over caring duties because she is considerably better value than the agency although I will miss the carer, my neighbour's also a mate so it works out pretty well – it means that I no longer have to worry about the carer getting stuck in traffic etc, the rest of the week has been bloody awful.
My other neighbour said that he had a friend who had a stroke who is now walking without a stick and he was at pains to tell me he had done it without half the chances I've had including the access I've had to 'facilities and equipment' and for good measure added 'make some effort'.
This destroyed me, here is a guy I don't know all that well and the opinion that he's formed of me is that I'm lazy and slothful – this was a classic case of someone not understanding how this stroke has knocked me sideways and done all but robbed me of my life. Effort? It's a f****** effort to do anything, the only thing that would constitute a lack of effort would be to decide to not to continue living and to make matters worse the local psychologists have effectively called time on coming to see me which is great timing wheb I'm feeling this low and worthless. Shame, because the assisstant psychologist was lovely.
The other thing that has been preying on my mind is that it's been two years and eight months since my stroke and my inability to walk or use my left hand properly is still total and I still feel terrible every second I'm awake. The feeling of utter helplessness was really brought home to me yesterday. For a change I actually went to my great physio, Natalie's, surgery in Putney, Ostensibly because there's a long(ish) corridor that I can practice walking down with my frame with Natalie and my brothers support,I managed 4 lengths (about 100m total) and apparently it's the best walking she's ever seen me do (it felt about as far removed from normal walking as you could imagine plus it was exhausting, something that really depresses me as I never understand why.
The thing that really ruined yesterday was getting stuck in the lift on the way down. For some reason the lift jarred to a halt after a yardleaving me just able to see daylight from the 2nd floor through the tiny crack in the lift doors – an engineer was called and he apparently went to the motor room to try and get the lift moving again. Every time he did it moved down a foot and jarred again and virtually gave me whiplash. He did this several times. I was getting progressively more terrified. I was alone and claustrophobic, things couldn't have been worse if I'd been in a wheelchair... All sorts of terrible thoughts were going through my head. Eventually, the lift guy got on top of the lift and was able to manually lower the lift to the ground floor. Not an uplifting experience I ever want to repeat!

16 Aug 2008

Post 64: Dads 72nd birthday in Sevenoaks

After a rather glum couple of posts this one better be more light – hearted. I consider myself told off and warned. Having a stern word with ones self is actually quite therapeutic even though it is the first sign of madness. I think it would be quite odd if I were not a little mad by now, you can probably tell by the way my mind has unravelled over the course of this blog and I haven't even been at the wacky baccy! Actually that would be counterproductive, for a start it would make me sleepier, the last thing I need and I could do without choking on my own vomit, that really would be an undignified way to go and after all this hardship and all the effort made mainly by other people, it would be a criminal waste and worthy of a Darwin!
On Tuesday evening I went to my dads 72nd birthday in Sevenoaks. It made a few things clear, firstly, that my old man is no longer as young as he used to be, secondly how much he loves it when the whole family are there and thirdly,that my grandparents (on my mothers side) house where my parents are currently staying as they wait for their burnt down house to be rebuilt could have been built to make things purposely difficult for wheelchairs. There are steps up to every access point, the driveway feels like it is about 1 in 1 uphill, all the doors are narrow,in fact an outside doorway up to the back door is too narrow for even my manual wheelchair which means I had to be taken in through the garage, lifted (in my manual chair up a huge step out of the side of the garage then taken out onto the back terrace to be wheeled up a ramp through some French doors into the sitting room. How my barely mobile grandmother lived here till her death at the grand old age of 97 last year is testament to her fortitude. I don't know how she did it? So having survived the mission impassable just to get in the house, dinner was hilarious and bloody tasty (my mum easily regains her cookery crown)! I was sat between my two comedy uncles , Ian ( who as a family we often consider to be a clean shaven Basil Fawlty) and Alistair (my mothers youngest brother who is often thought of as the sensible one but I know better, he's the amusingly shrewd bastard, you don't get to be a partner at PWC just by being sensible. Now, Ian and Alistair had grown up in this house and were busy recounting allsorts of amusing stories including one that particularly tickled me about how my Dad had first turned up to meet the parents of his new girlfriend in about 1960.Ian and Alistair being my mothers younger brothers and two mischievous young men watched Dad coming up the front garden path from behind the dining room curtains just feet from where we were sitting. Dad had obviously been a tad overdressed, eliciting Ian to whisper to Alistair 'he's wearing a f****** hat!'. Indeed Dad then told us he was rather proud of the Trilby he had selected. The recounting of this story made me erupt, damn it was a very different era!
This was by no means the only hilarious story, there were plenty involving my grandfather, a dour Scot, legendary for his temper and his tightness, his legacy is that the whole of the mother's side of my family get ultra-stressed about anything to do with money. I have touched on this subject elsewhere in this blog, the stress has rubbed off on me but none of the skill. The story that made me laugh was that after the war, they used to have a lot of fish for breakfast because meat was expensive and Grandpa bein Grandpa would only ever allow anyone one rasher of bacon per person and as finance director of Marley Tiles he would always leave the office last and he would go around the whole place and turn out the lights! Classic Scottishness. In fact it reminds me of my favourite person I met on this epic journey, Derek, the hilarious Glaswegian male nurse in the transitional living unit at the Royal Hospital. I would compare his sense of humour and style directly with 'mock the week' Scottish comedian Frankie Boyle but less angry. Derek was funnier and used to take the piss out of Scotland as much as Boyle, particularly the awful weather in Scotland, I remember one time Derek was incredulous that Al Quaida had tried to fire bomb Glasgow airport, he said 'why bother, the rain would just put it out'. The gag that Boyle made that caused me to laugh most was 'the most Scottish thing I ever saw was when I was driving through a village near Glasgow and I saw this guy taking a piss against this door, when he had finished he took his keys out and went in!'. That's my heritage that is!

13 Aug 2008

Post 63: Always feeling inferior to others


One of the things that I am finding so hard about this is never feeling like anyones equal. It's simple stuff like being able to talk to my housemates on the same level or nip out for a quick pint and chat with them just on spec without having to plan it with military precision. The same is true of my friends and family. For the foreseeable future everybody I come into contact with is going to have to make some sort of allowance for me. I'm grateful that people do but I hate that people have too. I hate being a high maintenance person. People don't have limitless time and patience, people are busy, especially in london, and have finite time to deal with their own problems. Sure, in the short term people are willing to set aside some of their precious time and energy but I feel as though I've got a long-term problem here and call it what you want, I prefer the term 'charity fatigue' because that is often how I feel, a charity case, which is tough to come to terms with when I used to pride myself on my self sufficiency and independence, don't get me wrong, I am so grateful to every kindness, allowance and act of charity that has been shown to me, be it the nurse who gave me that extra blanket, the friend who has run a marathon to raise money for the trust, the person I haven't seen for years who's come to see me, the friend who's made me laugh.
I guess what I'm trying to say is that I'm terrified of losing all this because I feel I've lost such a lot of myself in the blink of an eye. I'm already seeing evidence of 'charity fatigue'. Certainly less people are coming to see me, but I'm sure that has a lot to do with where I'm now located even though I think it's as easy and inexpensive to get to as the hospital in Putney ever was, in my opinion but what would I know? It's not like I'm the one who's ever had to make the journey, not that I could! Also I think these are nicer environs than the hospital, at least I think so, I certainly hope so although I'll obviously do my best to trash the place. My housemates are far too tidy to ever let me make a mess. I hope this gives people a pretty good idea of what is keeping me awake at night at the moment apart from my latest addittion,Pickle, the psycho kitten. :-)
While I'm here,after my rant in the last post about mobile phones, I've finally got my act together and found one for partially sighted people courtesy of the RNIB shop. A giant brick of a thing it is, but my days of liking miniature gadgets are behind me. My number is the same but email is still the best way to contact me.

8 Aug 2008

Post 62: Having to rest

I really don't get to do this much these days, mainly because between doing my exercises and my fatigue management (a fancy term for bed rest recommended to me by the local occupational therapists) The idea is that if I take my rests at the same time everyday, I'm supposed to feel less tired and I'm supposed to feel more energetic for my therapy and other things. Call me selfish but the reason I thought I took these rests was to try and feel less like crap but sadly it hasn't done that at all. I still feel terrible. It's so depressing always feeling the same no matter what, it's terrible. Also, being completely honest i've got a serious case of writers block. Yesterday I realized how little understanding there was of the world of disability. To be clear I can only use one arm so the only way I could charge something as mundane as a mobile phone would be if I could place the phone (one handed) in some sort of cradle. Is there a single mobile with a cradle easily available at the biggest mobile phone retailer in the country, the carphone warehouse, ask a silly question, of course they don't! I even asked if they did some sort of car cradle which I could fashion for in-house rather than in-car use? Surely at a place called the 'Carphone' Warehouse that's not to much to ask?. Maybe I'm too sarcastic but the sales assistant looked at me like I was some sort of wheelchair bound alien. Not an unusual reaction for the sales automatons in the 'carphone warehouse' if you ask them anything! After my frustrating and unsuccessful shopping trip I dropped in on the Royal Hospital up the road to see how my remarkable friend Carlie was getting along. She is fine and so brave and positive with none of the cynicism I exhibit, I don't know how she does it. She is an example to us all. It is hard to imagine I spent two miserable years in that place and made me realise how much better off I am to be out of there. It really is an awful place but as hospitals go, I suppose it's not that bad.
Changing the subject, I have just watched the opening ceremony of the olympics, I say watched, I think endure would be a more accurate word, god, it is soul crushingly boring. At least the Chinese are good at fireworks!

3 Aug 2008

Post 61: the 2nd becomeone fundraiser

So, last night was the 2nd becomeone event to raise money for the trust and it was rather good. The place was pretty full, the girls were hot and the music was suitably throbbing. Enough cheap innuendo, it was great to see so many familiar faces and a few unfamiliar ones. As usual I am taken aback by the mixture of people, which is testament to the wide cross section of people that becomeone appeals too and how many paths I have trodden (while I could walk). Big thanks must go to Simon and Shaun for mastermininding it, the venue (Inigo) for donating themselves for free and the Djs for playing for nothing. I also want to thank my great friend Simon Dawes for being on designated driver detail. Very noble of him indeed to be able to resist joining in the party. I also want to wish Miss Jackson happy birthday (for next Tuesday and thank her for inviting me along to her birthday festivities first in a pub close to Inigo. Going to both things has taught me to never overestimate my stamina. I was feeling destroyed when I left Inigo (at 11ish) and all I'd done is talk to a few people. One thing last night did teach me is how self conscious I am now. I am mortified about looking exhausted and being in a wheelchair and about my voice being so weak and weird and being difficult to hear. People can tell me until they're blue in the face that it makes no difference but I know it does. Anyway, watch this space to see how much we raised, and au revoir 'mostly harmless' Ben Davies, an antip who has made a huge impression on everyone he's met. He's a classic bloke who never ceases to amuse people, usually for the wrong reasons. London will be a duller place wuthout him.

1 Aug 2008

Post 60: The agency sends a new (clueless) carer every day!

Another difficult week I'm afraid and I can pinpoint the reason. Unfortunately my wonderful regular carer, who comes in in the morning has been off sick. The poor girl not only has to contend with me in the mornings (usually when I'm at my worst) but she's also pregnant, which caused her to faint last friday, so the poor girl has been signed off sick this week. The knock on effect for me has been that the agency has sent in a different carer every morning, This is a nightmare, they all arrive at different times, none of them know where anything is, none of them know me, none of them know how I like things to be done and none of them seems to understand that I am trying to keep costs down and being as independent as possible by having them stay here for as short a time as possible. To be clear, I have nothing against any of them individually, they are just doing their jobs but what I really hate is this feeling that I'm being unreasonable, I know that they're trying to help but since my stroke I have gotten rather particular about silly little things which I would be able to deal with in the blink of an eye in the old world. Things like: How I like my tea; which cup to put it in because it's the easiest to hold and it's not too hot to the touch etc;how and where my clothes are put on the bed for me to get changed into; how much assistance I require washing and dressing ; individually these are all pathetic little things but together they make up all I think about every morning and if they are different every morning I start that day badly and it's small wonder that it impacts into making it a dreadful week. This is such a shame because I've had some lovely visits and messages this week and some good friends of mine are putting on a party to raise money for me this Saturday which prompted me to send out this rather gushing message to all the members of the trust on facebook (apologies if you've seen this before, as you may have noticed I quite like reproducing things that don't require painstaking typing)
'I was just looking through the trust membership on facebook and I was really humbled and moved by the fact that so many people from so many walks of life have taken the time to say to themselves 'I give a toss'. Just that little gesture makes all the difference to me because knowing there's a large group of people that give a toss helps me get out of bed in the morning (which is no picnic), do my awful exercises and face up to what is left. I wish I could say that things are getting easier and this could be a happy go lucky message. Sadly, it's not that simple but it does make a difference to know there are real people behind every name on this list.
Now, enough of the melodramatic and sentimental stuff, the main reason I write to you all today (if you haven't been reminded already – you probably already have but because of my lack of tech savvy and decent sight) I want to draw everyones attention to a party http://www.new.facebook.com/event.php?eid=51931845426 that some good friends of mine ( Shaun Rowland and Simon Winstanley and a few others) are putting on for me this saturday (2/8) at Inigo in Clapham to raise much needed capital for my continued grueling rehab. Sadly, it appears that to get any real therapy once you've left hospital you have to pay for it and it's not affordable which is why (thank god) the trust exists. If it didn't I have little doubt I'd be confined to a wheelchair for the rest of my life. Anyway, that's plenty from me. I promise to be more cheery on Saturday.'
Well, that was me on Thursday. Rereading that makes me realise how changeable my mood has become since my stroke. In the old world it was much more constant which demonstrates to me how much your state of mind is linked to certainty about the future. I used to think I had it all figured out, now I know nothing,let me tell you. Ignorance is not bliss!Apologies if this is a bit downbeat. Lets hope the fundraiser is suitably restorative.

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