Wow, the fabulous Cake tagged me with my first meme, I feel all excited and proper blogger like now!
So, The Magnificent Seven P's
Passion Life to me would be flat, dull and uninspired without passion. Passion makes the world go around, from the kind that inspires political arguments to the kind that's closer to home and causes slick wet excitement, I like passion to be a part of my life every day in some small way.
Purpose I'm very purposeful once I set my mind to things, even being described as single minded.
Pursuit Now that depends...on who's the pursuer or the pursued. Either can be exciting!
Position Always with the kink! There are few advantages to having EDS, but to me the most obvious come in the bedroom department...I weigh next to nothing, and go by the name Bendy Girl...you work the rest out!
Pummelling Life has handed me more than my fair share of pummellings...me, I like to be as kind to people as possible in response.
Progress I am happy and proud to be able to say I barely recognise the desperate, frightened and confused person I used to be only a few short years ago. It's been one hell of a fight to reach where I am now, but I am grateful for everything I am and everything I have.
Personality I'm still becoming the kind of person I want to be, but every day I smile, regardless of how bad a day.
I'm going to tag the fabulous Angela-la over at Fussy Bitch, because she's a fussy bitch, and I like her style!
Update: I did post this...I think, but it seemed to disappear, so now I'm reposting it, and hoping I've understood the tagging thing?!
I have hot water! Thanks to the nice man from British Gas who disturbingly remembers both the boiler and me from previous boiler mending incidents. Worrying, though less so than being remembered by the man who collects ballot papers from the previous year when I went to vote.
To celebrate I took myself and my once again refusing to go back into it's socket left shoulder into as hot a bath as I could stand. Yes at 1.30pm. I am jobless for a reason. One skin strippingly hot bath later I've still got a dislocated shoulder, but thanks to the spliff I took into the bathroom with me I care less than I did before. Still too much though. I call this being defeated by the pain and will inevitably find some form of physically damaging activity to engage in before the day is out. Others might just call that stupid. Take your pick depending on whether you work at an NHS funded pain clinic or not.
Spending the vast majority of my time alone means that it's something I'm able to cope with, probably better than most, but still there are times when I feel more isolated, or simply frustrated and left behind. Like now.
Toes and Fruitrock (who unfortunately as predicted have got back together) along with some other friends have gone off to a local open day, held every year. I'm feeling sorry for myself because I can't go. This is an annual event, is always massively crowded, and I simply won't be able to access it. I'm not missing anything I haven't seen in previous years, but the fact that I can't get there makes me feel that I am. Particularly in light of yesterday.
We all went to a food festival/farmer's market. Toes, Fruitrock, me, Jen (Toes's previous ex girlfriend) and her 'new' boyfriend (of several years) Peter. It was a big deal for me. An inaccessible venue, for the first time I hired a mobility scooter...the ride along, battery powered kind. As I've mentioned before I don't have my own wheelchair. I applied for one a couple of years back, fully supported by my GP when my mobility was far worse than it is now, and due to the nature of EDS, I had to apply for a powered wheelchair. Again, fully supported by my GP. I was turned down. The rules of our local wheelchair services state very clearly that unless you use a power wheelchair for a minimum of six months full time solely indoors, they will not even consider you for a powered wheelchair capable of outdoor use. That ruled me out straight away. I refused to give up the limited amount of mobility I did have, which at the time was pretty much crawling around the house anyway, knowing full well if I went into a wheelchair full time not only would I never regain any further function, but that it would be incredibly damaging to all my joints and overall condition. I also knew sitting in a wheelchair full time indoors would rapidly lead to hypothermia and pressure sores. I weighed all of 32 kilograms at the time. I felt being forced to comply with such a rule would probably kill me. So did the initial assessor at the wheelchair services. I was told that despite all this, despite them knowing that I was physically incapable of propelling myself in a manual wheelchair due to dislocating shoulders, elbows and wrists I could not have a powered wheelchair. I could however have a manual self propel wheelchair at any time I wanted. Or a wheelchair someone else could push me in. Although they were aware that at the time I did not have anyone to push me. Sorry. Those were the rules. Ridiculous though they may be.
Fast forward a couple of years, through times so difficult I've yet to consider blogging about them, and thankfully an additional 10 kilos in weight, and I now have friends around me willing and happy to tip me out of so they can play with it, sorry, push me around in a wheelchair, but still no wheelchair. I've just reapplied for a second time through my GP, hopefully with more success as I'm going for the manual chair option, though with my size requirements it could still be difficult. I'm not going to be able to fit into any of the standard adult chairs, and I very much doubt the NHS wheelchair services will be sensible enough to allow a peadiatric chair to be given to an adult.
So, that's why, on Bank Holiday Monday, I'm sat here on my own blogging about missing out, when all my friends have been able to go out and have another great day. The NHS is great. I would hate to see us move in the direction of a fully privatised health care system. I don't have the answers to how we should fund health care, though in all honesty I'm not sure that we do have a funding problem, just a massive management and political interference problem coupled with total disrespect and abuse from the general public, but, but, but. The United Kingdom is far from a third world country. Or it's supposed to be. So, why am I sat here, missing out again for the sake of a wheelchair. Not exactly a luxury medical treatment. Like say breast implants for psychological distress.
I'm currently without hot water and heating. The boiler decided to stop working at some point on friday. There was hot water in the morning, then later on in the afternoon, nothing. Flashing lights, intermittent loud banging noises and an arrow indicating lack of pressure were about as much as I could figure out. I swore a bit then called British Gas. My landlord pays for one of those agreement things so they said an engineer would be out in the morning. Great, bank holiday weekend with no hot water. What is with this boilers uncanny psychic ability to blow up only at weekend's, high days and holidays? It blew up the day before New Year's Eve once leaving me without heating or hot water for 48 hours in freezing weather. A fairly major concern when the temperature is dipping low enough this evening for me to need the heating on. Anyone else might be sweating but typically I'll be shivering. Maybe I need better fat reserves. Maybe not. For the good of my sanity an all. Better to freeze than be fat in these strange days.
Despite being tipped out of bed at 6am by neighbour, I still had to get up at 8am in case the boiler man arrived. Anytime between 8 and 1. Apparently. Thank god for blogging and sofa's to lie on. I left neighbour in bed. The boiler man turns up around 10 am, does a great deal of umm'ing and ahh'ing, and immediately asks why I don't get a new boiler. Er, because it's a rented house, I'm not made of money, and despite the fact the boiler is a pile of crap unable to get through a season without breaking down its a constant amusement to me that my landlord spent £3000 on a boiler worth £300, and besides, isn't that sort of your job...to fix it? Hmm, perhaps not.
I offer the boiler man a cup of tea while he mutters darkly about never having seen anything like it, no access anywhere and stupid systems. I am wise to this and know this means sending off for 'parts' and that I will be without water and heat for days. I leave boiler man to it. He's happy in that way men excited by such things get when presented with problems they do not immediately understand. Who can't relate to that? Or maybe I've just had too many boyfriends like that. The anorak did after all send me a text to say 'someone's written anorak on my special Mr Fussy car polish, all fingers pointing at you curly!' The fact that I had a boyfriend we both called anorak speaks volumes. Ah well. I find something about men like that deeply comforting. Probably that they are the polar opposite of my father.
So, it's Saturday morning. The boiler man is in my bathroom muttering away. I'm blogging in the lounge in my vaguely could perhaps be sexy in the right context shorty pj's, with very definitely not sexy under any circumstances pink fluffy dressing gown over the top having hoped I might have a bath after the boiler man had gone. I have a neighbour in my spare bed wearing nothing but panties and vest top. Poor boiler man. I realise I'm going to have to do something before my neighbour falls downstairs and shocks the boiler man into leaving. I make neighbour some tea, and take it upstairs, pushing the mug up one stair at at time ahead of me as I go. Crude but effective.
An hour or so later I go back into my own house. The boiler man tells me he's tried everything. The boiler is a stupid system. No access. He can't fix it. Needs parts. He has to order parts. He'll be back on tuesday. Don't suppose I could wait 'til wednesday? No, I cannot wait 'til wednesday. I suspect that on tuesday someone else may come out, fulfil the terms of the home care agreement and be unable to fix the boiler because the parts have no arrived. Great. No wonder I slept the rest of the day away.
I try and wake neighbour. It's easier said than done. She moans and pulls the duvet over her head. I consider that fair enough. I leave the tea, tell her its there and tell her not to come downstairs as the boiler man is there. I go into my room pootle about and she starts to stir. Starts to panic. Starts to swear a bit. Really starts to panic when she wakes up enough to realise where she is. I go into the room as she's sitting up in bed realising she's got nothing on her bottom half except her knickers and is in my house instead of her own. I ask her what size clothes she wears, she tells me a size 10 and I go off to try and find something. Neighbour is the only person I've ever been able to share shoes with so I find her some flip flops but as I pull out a pair of tracksuit pants I think may fit her I realise this may be more difficult that I thought. I stare at the label. It says age 9. I thought they might fit her. I realise nothing I own is going to fit anyone that isn't me or a 10 year old girl. I remember I have a dressing gown from La Senza, give thanks neighbour is also a bit of a shorty and take her that. Its bright red, shiny satin. Poor boiler man. Poor neighbour.
We go downstairs and neighbour starts to properly panic. What happened? I don't know. I tell her I found her after waking up to the very faint noise. Thank god the window was open. She doesn't know what she was doing outside. Where are her keys? She doesn't know. The keys are lost. Where is her mobile phone. That she does know. It's with the friend she went out with last night. What is friend's phone number? She doesn't know. She just panics. Where is her dog? The dog is in her house. I knocked on the door to check earlier knowing it would bark, it did. She asks me over and over. Where's the dog? I knock again to appease her and the damn thing doesn't bark. She panics more and more. Where is the dog? Where is the dog? I don't know where the fucking dog has disappeared to in the past 30 minutes from a locked house. Stupid fucking dog won't bark when I again knock on the door to appease her panic. I know the damn thing is in there, taunting me with its doggy silence. Neighbour panics more. Where is her dog. Ah well I think. Better that she panic over the dog than why she was semi naked in the road at 6am.
She can't remember friends phone number, even after half an hour or so. Eventually she remembers her friends ex husband's number and phones him, telling him she's locked out. Within minutes, her friend is on the way, with spare keys to her house and her mobile. Her friend is shocked and horrified. They'd gone out for drinks, got drunk. Neighbour has hip problems, so her friend had walked her most of the way home, leaving her about 100 yards away from her front door. We live in a small, sleepy town not noted for its violent crime.
Friend arrives and we all go into neighbours house. We search, but despite that her shoes and jeans are missing. Another neighbour arrives, concerned. We discuss whether it would be a good idea to call the police. Neighbour says she has not been raped, all feels fine 'down below', but she does have bruises like someone grabbed her round the wrist. No-one can account for approximately six hours where neighbour was missing, before I found her half naked.
Neighbour is understandably stressed and freaked out. We start to joke about the situation instead, knowing that is what she wants. The other neighbour leaves, I follow shortly after, leaving neighbour to warm up in the bath.
Later I speak to her. Her jeans were under the bed. Shoes still not found. She takes various medications for problems with her joints. One of these has recently been changed. She went out and had a considerable amount to drink. Whilst taking these medications. We decide that must be the answer. Maybe she was sleepwalking. That seems the most comfortable answer. 'Thank god you found me' she keeps saying.
