Everest

So, Manchester Ska Bar. Where to begin?

We wanted to buy some trading cards whilst we were in town, as we started playing with them again since The Music Man moved in. Made three stops trying to find some. Travelling Man - huge step to get in the shop, was quite difficult. They didn't have any of the cards we were after, told us to try Forbidden Planet. Forbidden Planet - huge step to get in the shop, was quite difficult, then the things we were after were downstairs so Rambo and TMM headed down, leaving me stranded in front of a Twilight stand. Thanks, guys. They didn't have any of the cards we were after but the guy downstairs said to try FanBoy3. FanBoy3 had an even bigger step to get in, and doors too tiny for the wheelchair to get through. More annoyingly, they had card tables set up inside, and a back room with a bunch of guys playing D&D. Apparently they have D&D games going roughly ten times a week. I've been looking for a D&D game to join, but that one just ain't gonna cut it.

Then we headed over to Ska Bar, Rambo and TMM slaloming me in and out of scaffolding and deliberating going up and down kerbs rather than ramps because they 'need practice'. Ugh. Ska Bar itself - huge step at the front entrance, tiny door; many steps at back entrance. Got out of the chair to get in there, and to walk down the two flights of stairs to the basement where the gig was. Didn't really mind at all at this point as I was actually capable of walking and had someone else to carry the chair down the stairs for me. If anything, felt guilty because I'm such a hassle and people have to carry chairs down stairs for me.

Met The Music Man's new band, they seemed pretty cool. Had a chat with them before gig actually started.

Rambo and The Music Man decided they were hungry, wandered off to Burger King, leaving me stranded and lonely watching over everyone's stuff. Came back without any food for me. What the fuck? Got shouted at a little bit as I'd expressly asked them for food before they left. Fuckers.

Gig starts. I try to sort of dance-where-I'm-sat, knee goes out. Won't go back in. I need the loo. Toilet is up three little steps but with a knee out I don't think I can handle those steps. Takes about half an hour to convey to Rambo that I need his help because he keeps buggering off or just plain ignoring me to talk to other people and I can't shout at him over the music and he's ignoring my puny attempts at poking and I can't poke any harder or hit him because my wrists are crying at me. Eventually get him to help me up the steps but wrench my shoulder out trying to lean on him because he's too damned tall. Get back to sit down, stretch my leg out carefully so my knee won't hurt, manage to pop the hip out doing that.

Now, as I'm sure I've explained before - when my hip is out, it can't take movement. No bouncing, no jiggling, no nothing. No fucking vibrations through the seat from ridiculously loud music at gigs. Slowly getting more and more excrutiatingly painful. No way to escape vibrations except two flights of stairs. Now I start to really, really, really hate the amount of stairs at the Ska Bar. Fighting back tears at this point but failing miserably - leaking quite consistantly down my face. Rambo eventually notices at about the point that I decide that the stairs will have to be mastered as I can't take these vibrations anymore and the gig's likely to go on for another three hours or so.

Takes me looooong time to get up those stairs. Many people passing me, keep having to stop while they do so as I'm leaning on both walls in order to get anywhere so take up the whole stairwell. Manage to thoroughly screw up both of my wrists by the time I reach the top.

Anyway, I then have to spend the next three hours upstairs by myself, bored out of my mind, listening to shite music whilst Rambo and TMM carry on having a good time downstairs. I'll remember to bring a book next time.

When the gig was over, Rambo and TMM refused to call a taxi because the taxi ramp at Piccadilly Station was 'right there', so we head over. Going up and down many kerbs and over cobblestone streets. With a dislocated hip. Taxi goes down bumpy roads.

I won't recount the Everest climb I had getting upstairs to bed when I got home. Needless to say, I had two dislocated wrists and the shoulder, hip, knee and ankle had all gone out on my right side. It took a long time, and much, much crying.

I really need a fucking bungalow. Or a flat. Or just a house with a downstairs toilet so I could have slept on the sofa and not had to go up the stairs at all. Or maybe even just some working painkillers.

...At least I didn't feel like a fraud for being in the chair yesterday though. It's a small upside to falling apart at the seams, but at least it's an upside.

Wheelchair and Manchester

Took the wheelchair for a test run in Manchester for the first time yesterday. Can't say I'm overly impressed. Every single pavement in Manchester is one giant slope towards the road, meaning my chair would quite happily throw me into traffic if The Music Man let go for a second. Not that he would, it's just that it was difficult for him trying to push the chair forwards in a straight line. Imagine a shopping trolley that always veers to the side. Imagine pushing that for about 4 hours, up and down kerbs, and trying to stop it rolling into traffic. Fun times, right? Poor guy.

Rambo would have come with us but he was at work. Going into town again on Sunday to see The Music Man play with his new band at the Manchester Ska Bar*, and then they can take it in turns pushing me around and maybe I won't feel like such a hassle.

On top of the sloping streets and bumps in the ground and cobblestone pavements and all that crap...most of the shops have steps to the doors. Half the pubs, too. Felt quite left out.

Then we figured we'd head into the Arndale centre and have a look round, as at least the floor would be smooth and unslanted in there. All well and good, but at half the entrances to it we were faced with an escalator up and an escalator down, nothing else. Back out, find another entrance, try again, same problem. Back out, find another entrance, try again, get inside. Have a look 'round the ground floor. Get annoyed 'cause we can't find a lift to other floors. Find little information things that are low down enough for me to use in the chair but tilted upwards so I can't see anything on the screen and The Music Man has to use 'em. Fun. Oh, speaking of having trouble using things, have a buttload of fun trying to get money out of the ATM. Damn near wrenched my shoulder out of the socket reaching up to get my card in and out.

Anyway, we eventually found a lift up the food court, outside the actual centre, then found a lift down to the first floor from there. I'm sure that lift would have gone all the way down to the ground floor but we couldn't find it when we were down there. Maybe we just suck at finding things.

So yeah, things aren't exactly easy in a wheelchair, but we wandered around Manchester for four hours and I was only slightly hurting from all the bracing and flinching and catching myself when I got thrown out of the chair (only once, today). Fucking exhausting though, and I'm not sure why. I think it might be the mental stress of having to talk to strangers. A lot of people seem to handle the whole 'omg cripple, have to be nice and PC' thing by joking with me. I believe I got told by 10 different people yesterday to watch the speed limit. And they all thought they were being original.

That wasn't so bad though, I didn't really mind that. And I thought it quite amusing how everyone apologised to me whenever The Music Man bumped me into them. We even knocked some guy's bike over, and he apologised. Whoops.

The thing that got me was some guy handing out Christian pamphlets. I said 'no thanks' and he said 'don't you want Jesus to heal you?' Uhmmm, well, that would be great, but seeing as how this thing's genetic I'm thinking if your God does exist then he kind of made me this way.

Uhh, where was I? Oh yes, exhausting, being pushed around all day in a wheelchair. Not much physical breaking. Some aches of sitting still for so long (had to keep moving my legs around to stop my knees locking), but exhausing nonetheless. And then we're still getting The Music Man settled in. And I've just been so exhausted the last couple of days that I can't be bothered to do much on the computer. Have literally been logging on to check messages and then curling up in bed with a book. And then crying that holding the book hurts too much and making someone come play chess/monopoly/TCG with me to keep me entertained instead. And then not being able to focus much on that, knocking all the chess pieces over and sulking in front of the TV. Goddamn it must be annoying having to live with me! I pity Rambo and TMM. I really do.





*He's not even met the guys yet, auditioned over the phone and they were just like 'yeah, learn some songs, come play at our next gig!'

Speedy

The Music Man moved in today. Took him out to the nearest shops and everything to show him around, and uhhh...teach him to steer my chair. I swear, between the two of them, TMM and Rambo are gonna break it within a week. They can't touch it without feeling the need to run as fast as possible and jump on the back. Two problems with that; one - it's meant to carry 18 stone max, I weigh 13 and I doubt either of them weigh as low as 5; two - it seems to reach a breaking point around 10mph where it goes from running really smoothly to shaking like mad with no warning. Oh, and three, actually - they don't fucking slow down for kerbs. Gonna break me doing that, let alone the chair. Gone flying out of the chair three times already and I've had it for two fucking days.

It's quite fucking scary not being in control of your own movement, you know. I flinch at everything.

That's not to say I don't love my chair; I do. Really. It's fucking awesome being able to go outside the house for longer than 15 minutes without needing to sit down and without having to collapse and nap when I get home.

...I just really wish they could calm down and act normal for a little bit. I don't mind them fucking around occasionally, but the majority of the time it's just scary and annoying and often painful. On my wrists, that is. I keep bracing myself every time I get jolted. I fall on my wrists when I get knocked out of the chair. Etc etc. So all the pain I've avoided in my feet/ankles/knees/hips/back has just been transferred to my wrists, heh. Oh, I also got my toes hit a few times before I learned to hide my feet behind the footrests when things got scarily close.

Maybe they're doing it to avoid the embarrassment of pushing someone in a wheelchair? I don't know why that would be embarrassing, but Rambo at least seems to find it so. It's been pretty bad for me but I've been pushing through it, putting a happy face on, making jokes, laughing at myself, and just telling myself over and over that there's nothing wrong with me being in the chair - I need it. But it's still pretty damned difficult running into people who've not seen me in the chair before and don't really understand, and even more difficult when I get out of the chair for whatever reason. I feel like people are going to start screaming at me for being a fraud. Fuck, they don't even need to scream, just the idea of them thinking that is enough to freak me out. Stupid goddamn mental scars.

I AM NOT A FRAUD.

^Just repeating that for my own benefit, not yours. I need reminding at times. So many years of having it drilled into my head that I'm faking it and there's nothing wrong with me and it's all in my head...hard to shake.

Uhmmm, I didn't mean for this to get depressing. This was all an aside. I was talking about The Music Man moving in. Yeah. Uhhh, what was I saying about that? Fibro fog distracted me. Fuck it, if it's important I'll remember it later.

Wheeeelchair

Postman brought me many things this morning. A bunch of clothes (including a set of pyjamas that had one top and two bottoms, tehfux?), a CD*, a zebra-stripe blanket and a wheelchair** to put it on! Immediately went out in the chair just to test it out, spent hours outside going all over the place and only got hurt due to Rambo's bad steering...but he's learning, bless him.

Was a tad confused as to what I was getting with the chair, as the item description said self propel and the picture was of an attendant chair, but they sent me a self propel so I, obviously, started trying to self propel in it as I couldn't resist the temptation. Hurt my shoulders more than my wrists to start with but I couldn't go more than say, 10 metres before I just couldn't take it anymore on my wrists, whereas the shoulders were only hurting as bad as they were when I started. Bit odd, that, but I don't really mean to go self-propelling it in so it's not really an issue. Just wanted to see if I could.

Despite being pushed around all day though, I am running severely low on spoons as The Music Man's moving up tomorrow and we've been in the process of moving rooms for the last few days as the Sister had the big room all to herself for some reason whilst Rambo and I squeezed into the smaller room (I may be exaggerating there, it wasn't really a squeeze.) Anyway, Rambo seems to feel the need to take an hour-long gaming break for every 10 minutes of work he does and when the cripple is doing more of the work than the perfectly-healthy boyfriend I think he might be taking the piss a little bit!

Still a little behind on FFM (two days, now) and tomorrow's challenge is a 'Celebrity Cameo' which is going to be awkward. I know shit all about celebrities. This is going to require research, no matter who I pick. Eww, research.





*Fighting Evil is Cool! - awesome ska band formed by some of my best friends, who made me pay for the CD as they've not made money to pay off printing costs yet. Boo. Friends should get free copies!

**Pictures will follow later, probably when I've dyed the blanket purple.

Sippy Cups

Got Ann Summers things in the mail this afternoon. Tried on new nightie before anything else, had it ripped off me, ended up with a dislocated hip again. Spur-of-the-moment sex is not good for me!

It's alright though, because it went back in a few hours later and I waited until it did before blogging so you didn't get me screaming curse words. That's never fun.

I was doubly pissed off at the time though 'cause Rambo broke me and then buggered off to work for a couple hours leaving me stranded in bed when I hadn't eaten anything in nearly 24 hours and was starving. Then he didn't even bring me home any comfort food. Fucker.

Oh, also, last night I made the silly mistake of thinking I was capable of getting myself tea. I made the tea, and I carried it upstairs, but then I spazzed out in my room and the cup fell on the floor and there was tea everywhere. As that's like, the tenth time that's happened to me in the last month or so it was decided that I am no longer to be trusted with open mugs. Started shopping for sippy cups. For some reason these come in two varieties - baby ones that hold bugger all liquid, and disability living aid ones that hold the same amount of liquid, but look uglier. My awesome button-operated kettle dispenses 250ml of hot water for my tea, and there's no way to adjust that, so I've been buying mugs and the like based on the fact that it needs to hold at least 300ml to compensate for milk and not overflowing, so both baby sippy cups and disability living aid 'spill proof cups' were out of the question as the largest I found held 200ml.

...Then I hit myself in the head for being so stupid and got myself a sports thermos. Seriously, what the hell was I thinking searching for spill-proof cups when I knew that sports-cap bottles always served me well in the past? I am such an idiot at times.

Wheelchair Access, Or Lack Of It

Bought a nice zebra-print* blanket to throw over my chair as I hate the black fabric on it. I shall dye the white bits purple and have purple zebra stripes on my chair. I'm a tad confused as to the actual dyeing of it though as my little pouch of dye says it will do 250g of fabric. The blanket is 160cmx200cm but has no weight on it whatsoever. Kind of hoping I can dye the blanket and some tubigrips** with that little pouch but I doubt it will happen.

So yeah, even more awesome things in the mail now. Seriously want some deliveries.

Also, been having a look at flights to Spain as I can finally afford a passport after not having one for three years and missing out on so many offers of free flights to Spain to visit family. Ridiculously difficult to get to the places in Spain I want to go to from the airports that are near me. Plus I'm not sure if I can bring the chair as Ryanair are apparently quite twattish about wheelchairs and it would be expensive to book it in as extra luggage. Gonna call them tomorrow and have a rant but their lines aren't open on Sunday so not much I can do about it tonight.

Was considering going to see Barenaked Ladies at Rock City in September, and visiting Derby friends whilst down there, but turns out Rock City has no wheelchair access and the last time I went there without the chair...well...it sucked balls. I was completely and utterly dead by the end of the night, would not have been able to get home if ND hadn't brought me extra-strength painkiller spliffs*** and even that wore out before I managed to get to sleep, so I stayed up all night in tears of agony. Reeeeaaally don't want to repeat that if I can find any other way around it.

Turns out that whilst wheelchair is going to be incredibly useful and pain-relieving for me, it's also going to get in the way. A lot. Stupid people not catering to the disabled.

Also, three days behind on FFM now. Catching up slowly. Will be there by the end of the month I think. Although, I did write three poems as well as all that flash fic this month (totally accidentally - was trying to write prose but my head wouldn't stop rhyming), so I might just count that as me being right on track...

Oh, also also, forgot to mention that I got a DLA letter through the other day. They re-assessed me as I was on a yearly claim and the year had run out, and decided once again that I require nothing but low-rate care. Most of the reasons they cited were wrong so obviously I failed at filling out the form****. *sigh* Will call them tomorrow as well and see what I can do about it but I don't think it'll change anything.






*If you didn't know, zebras are the mascots of EDS, due to our condition being so rare and under-diagnosed due to med students being taught 'if you hear hooves, think horses, not zebras'. Is great for most people, but seriously screws over us zebras. They were investigating symptoms of my EDS when I was a goddamn baby, but it took until I was 21 to figure out what was wrong.

**Plan to hide tubigrips = dye tubigrips purple, get black lace/fishnet/mesh/something armwarmers to go over the top. Am currently just using normal armwarmers to hide my tubigrips and it gets ridiculously hot sometimes compared to just the 'grips.

***We've worked out that five times what he normally puts in a spliff is enough to crack my drug-resistant barriers and actually give me pain relief.

****Seriously, you people crying about fraudulent claims: It's ridiculously difficult to get the benefits legitimately, let alone fraudulently. I call bullshit!

Grammar Rant No. 3 - Past Tenses

We've not had a grammar rant in a while. That's a good thing, because it means I've not been pissed off enough with someone's terrible grammar for a while. Today though, I got an email. I should probably explain this. Y'see, I'm on a mailing list of an author who writes little pieces of advice to people writing novels, it's called 'Daily Kick in the Pants' and is usually filled with useful advice, but usually quite useless to me as it all seems rather common sense-ical*. But today, he tried to explain that we shouldn't overuse the word 'was'. One of his reasons for this was as follows:

'The second problem with “was” is that it is often used unnecessarily. As far as the image that is conjured in the reader’s mind, there isn’t much difference between saying “Sheila was singing under the starlight,” and “Sheila sang under the starlight.” However, the second sentence uses one syllable “sang” instead of three, “was singing.” So in the interest of brevity, usually we try to get rid of the “to be” verb.'

NO. No no no no no no no. They are two different tenses, you do not fuck with your tenses for the simple reason of 'brevity'. You know what else is used for the interest of brevity? Chatspeak. 'i r kl lol', etc.

'Sheila sang' is perfect tense. This is your basic tense for storytelling** as we tell stories in the past. It denotes a completed action. If you say 'Sheila sang' then you're saying that she's now stopped singing in your story and can do other things.

'Sheila was singing' is imperfect tense. This is still past tense, but an ongoing action. Saying this means that Sheila is still singing in your story and if she does anything else she will either be singing whilst doing them or be interrupted.

It may not sound like a huge difference in this particular case but can make a world of difference at times. Don't ever mess with your tenses just because one tense has less syllables. Jesus.

Other past tenses for storytelling, just in case you get confused:

'Sheila had sung [before]' is pluperfect. It denotes something that happened in the past of your story (which is already being told in the past).

'Sheila would sing [again]' is future perfect. It denotes something that will happen in the future of your story.

There are other mixes between them ('Sheila would have sung', 'Sheila had been singing') but these are your basic ones and you should be able to tell what's going on from the mix. ie - 'Sheila had been singing' has the 'had' from pluperfect and the 'ing' from imperfect, therefore an ongoing action that happened in the past of your story. If you know these basic ones you can work out any others you may need.

Unless you're telling stories in the present tense all the way through, you do not ever use present tenses ('Sheila sings', 'Sheila is singing') or future tenses ('Sheila will sing', 'Sheila will be singing', 'Sheila will have sung' etc etc).

Just in case you haven't got it by now - I really, really, really hate when people mess up their tenses in writing. Don't fucking do it.






*SO a word. Shut up.

**I have been known to write in the present tense, when it fits the piece, but generally past tenses are the way forward.

Awesome

Sister is goooone! Alright she still has quite a bit of stuff in my house but she's now basically living at Dad's and just popping over to grab more stuff every now and then. This does mean she keeps barging in without knocking as she still has a key and I can't wait for that to be over with but I don't have to live with her anymore! Yay! No more of her hogging the bathroom for hours at a time whilst my bladder's exploding!

She has been borrowing lots of money off me though in order to pay rent at Dad's as she just started a new job and gets paid in arrears, etc etc. You all know the hassle of starting new jobs and not having any money for the first month. Sucks as I really don't have spare money to be giving her but she promised she'd pay us back before rent's due so I'm just crossing my fingers she actually keeps her promise.

The Music Man's coming up on Thursday and although he doesn't have a job up here yet he can do all my housework and has already found a band to play with*, so that's all pretty awesome.

Rambo's still being incredibly awesome and making sure my spoon reserve stays fairly high, but now I feel like I'm taking advantage of that as I've been feeling fairly lazy the last couple of days, despite managing to bathe myself yesterday while he was at work! Yes, that does deserve an exclamation mark, it's an incredibly impressive feat for me that takes nearly half my daily spoons.

So yeah, all in all, things are awesome. Rambo's awesome. The Music Man's awesome. I shall have a vaguely clean house soon. And a wheelchair. And all kinds of other awesome crap in the mail. Benefits suck right now as my ESA's been stopped, so money's not great, but that's definitely outweighed by all the other awesome things and is hopefully fixable once I get my cognitive functions working enough to fix it.

Oh, kind of failing at FFM. Mega-bad wrists last couple days and I didn't want to type any more than I had to so am uhhh...four days behind now. But the 55x55 thing means I'm still about 50 stories ahead, even if I am days behind.





*Catch-It Kebabs, go check 'em out. Awesome ska band. Gonna go see 'em at the Manchester Ska Bar the sunday after The Music Man comes up and they're supporting Streetlight Manifesto** in August!

**Possibly my favourite band ever. I've travelled all across the country to see them on many occasions and it's always worth the crash after.

Feeling Very Happy

*WARNING - Post may contain mature content*

I eventually got around to making Rambo read The Spoon Theory last night. That's something I've wanted to do for a long time but I always feel as if that would constitute me whining about it, y'know? I hate complaining, and I try my hardest not to even mention it* unless I physically can't do something and have to ask for help. But uhh, we had a bit of an argument the night before about the fact that I seem to always be talking about it, which kind of felt like a slap in the face as, like I just said, I make a huge conscious effort to not complain or even mention it. I had a bit of a rant to the folks over at BYDLS about this and we came to the conclusion that the problem was that he just didn't understand that I can't just not talk about it ever because it's always there and it doesn't just take a break because he's sick of hearing about it.

So I linked him The Spoon Theory, along with some rather depressing writings of mine from the past year of me trying to come to terms with this, to try and let him know how I feel as I utterly suck at explaining things to people. I wrote those to no-one in particular, just for the sake of writing them, and therefore didn't have a problem writing them down. It was difficult even linking them to him, but I was upstairs on the laptop and just linked them over msn then went to bed so I wouldn't have to talk to him about it, heh.

Couple hours later, I'd still not managed to get to sleep due to worrying about how he was going to react and whether or not he was just going to get annoyed with me for whining and for making him read such depressing stuff, he comes up to bed...and tells me that he was going to bring all the spoons in the house up to bed for me but he thought that would maybe a bit over the top. Then I cried at him, because I was so happy that he would actually take the time to read all of that for me, and not tell me off for whining, and we stayed up talking until five in the morning, about everything. About the fact that I need a wheelchair, and screw all the people and the reasons that I'm feeling so freaked out and embarrassed and anxious and downright fraudulent about it. About the fact that a Tempur mattress would be incredibly awesome and pain-relieving for me, but they're ridiculously expensive. About the fact that sex hurts and quite often breaks me, and how much I fucking hate that because I hate having to say no to him and I hate not knowing whether or not it will be fine or if it will dislocate my hip and leave me in utter agony and unable to do anything for the whole next day and I hate the fact that I quite often get ridiculously horny when I'm too broken to do anything about it. He told me off for that, because he said that he should be able to do something about it even if my hips were too bad for actual sex, but I explained how that hurts as well and just leaves me sore due to the fibromyalgia problems and we talked about vibrators and why the hell I didn't have one (mainly due to feelings of guilt on my part that Rambo should be good enough for me and I shouldn't need one). Then we discussed various positions and how we could possibly do things without breaking me, which involved trying all of them out. Found a fairly good position, and had the best damned sex we've managed to have in years.

He also insisted I buy the wheelchair I've been looking at and agonising over whether or not I should buy it for the past couple weeks. So this morning I ordered myself an awesome purple wheelchair...and a vibrator for when I'm broken but still horny. Very eagerly anticipating deliveries now.





*I meant IRL, not here. Blogs were made for whining!

Fell Down - Feel Like An Old Lady Complaining About It.

I fell down in the kitchen yesterday. Falling over is pretty normal for me, but this was abnormal falling. Y'see, normally, I know I'm going to fall and can usually manage to collapse neatly into a lying down position and just relax for a bit. But nooooo, the kitchen floor was all wet 'cause the washing machine wouldn't drain properly and I didn't realise and slipped. Very fast falling over there, no time to prepare and lie down and brace myself or anything.

So yeah, popped a shoulder and hip out with the falling - wasn't actually so much of a big deal, popped 'em back in pretty much straight-away and diclofenac-gelled to pre-empt swelling. But the bruises...and the sore muscles. OH GOD THE SORE MUSCLES. I had a bath this morning and for once the relief of hot water on my muscles outweighed the pain of hot water on my joints. I didn't wanna get out of there. And now I'm stuck on the sofa and don't want to move. Oh, and I'm having to stay lying down 'cause I bruised my ass so badly I can't SIT down. Bleh.

Child-Proofed

I swear these new painkillers are child-proof. I'm used to getting them in child-proof bottles (although I've learnt to ask them not to do that) but seriously, child-proof pills? These things are huge. The reason they're huge is that they have 500mg of Paracetamol and 30mg of Hydrocodeine. Now, we know full well that Paracetamol does bugger all to me, why can't I get tiny little 30mg Hydrocodeine pills? Those would be real easy to swallow. I know, I know, they have their reasons. I just really hate these giant pills. They have lines down the middle so I assume I'm meant to break them in half to swallow them (and I still find it difficult then), but I don't have the wrist-strength to do that, and I'm meant to be taking them 4 times a day and Rambo just isn't always there when I need to take them. *sigh*

They don't work, by the way. In case you were wondering. I wasn't. I never expected them to. Can I get some damned cannaboids yet?

Speaking of which, The Music Man's definitely coming to live with me now, planning on moving up on the 20th of this month, and he's agreed to let me grow painkillers in the loft. Sister wouldn't let me and I didn't want to do it without permission of everyone in the house. Will take a few weeks to set up and six-eight weeks to get a harvest but in a few months I should have a steady supply of working painkillers*.

He's also agreed to let me have a puppy - something the Sister would never do. Gonna need to buy a few rugs to cover the living room with as I've had dogs round here before and the poor things slip and slide all over the place, but when the floor's safely covered I shall be looking at puppies, yay! I shall train it not to jump up and hurt me like certain other dogs I know, and not to pull on the lead. Or maybe I shall train it to pull on the lead, teach it left and right, hook it on to my wheelchair** and have dog-powered mobility!





*Will give huge EDS-discount to anyone else who needs 'em and happens to live near me (Manchester).

**Found a really nice purple wheelchair*** on Ebay, £155. Not sure whether to buy it or wait to hear from Rheumy and get a diagnosis and then get a wheelchair from the GP. Problem is, still waiting (a month after supposedly getting Rheumy referral) for a letter from Choose & Book, then the appointment will take a long time, then I hear the waiting list for a wheelchair will take a loooooong time too. I kind of need the wheelchair for late August & September. Considering just buying the damn thing and then trying to convince the GP to get me an electric one when it finally comes to it...

***Funny story, apparently 'purple wheelchair' is a strain of cannabis. Didn't know this. Was trying to find a nice purple wheelchair via googling and it just did not work very well!

I Hate EDS

I hate that I can't concentrate,
And there are things I can't recall.
I hate the fact I can't walk straight,
- End up walking into walls.
I hate that my slow shambling gait
Makes me invariably fall.
I hate that when I medicate
It does completely bugger all.

I hate the fact I've put on weight
Despite watching what I eat.
I hate the fact my joints inflate
In this dreadful humid heat.
I hate the fact I fascinate
Every person on the street.
I hate having to educate
Every doctor that I meet.

I hate when ignorant people state
My only problem is being unfit.
I hate that I can't communicate
The problems I refuse to admit.
I hate the people who berate
And tell me not to quit.
I hate people saying I look great
When I feel like utter shit.

I hate when people discriminate
Because of things that I can't do.
I hate people who try to commiserate
- Say they know what I'm going through.
I hate religious types who speculate
That I'm only getting what I'm due.
I hate that I now alienate
The 'friends' that I once knew.

I hate that I infuriate
When the pain makes me rather terse.
I hate having to moderate
When all I want to do is curse.
I hate people thinking I exaggerate
When it's usually the reverse.
I hate knowing I'll deteriorate,
That this will get much worse.

I hate people who insinuate
That I am nothing but a fraud.
I hate people who implicate
That it's my will-power that's flawed.
I hate that I can't recreate
And am often extremely bored.
I hate that I could make the pain abate
But the things I need I can't afford.

I hate that I can't elaborate
When the fog descends on my brain.
I hate attempting to translate
But not being able to explain.
I hate having to estimate
What will cause too much strain.
I hate having to tolerate
This excruciating pain.

Tehfux?

So, got two letters through about ESA this morning, one a cheque of £150 for two weeks where they missed payment, the other a P45. Very confused, I rung up and asked, was told that my appeal (that I don't remember making?) was struck out and they're going to stop paying me, hence the P45, and they shouldn't have sent that cheque and someone made an error there, and if I want ESA I'm going to have to make a new claim and they won't pay me anything until they've given me a medical (which I'll probably have to appeal, as the main process of their medicals seem to be 'can you move your limb here?' which bendies don't really have a problem with).

Broke down and cried. Not sure I have the mental stamina to handle anything else today, let alone a long, drawn-out phone call to make a new ESA claim.

It took me 2 years to get to the point where they would give me any money, then after backdating 6 months worth I've had nothing. Except this cheque which I don't know whether I should cash as I don't know whether they'll insist on taking that money back off me as she said I shouldn't have it.

I thought I would finally be able to pay rent and pay off all my debts, and buy food that wasn't asda smartprice crap that's hell on my IBS, and buy an electric fucking wheelchair and have some fucking independence. But no. I'm not allowed any of that, obviously. Don't know why I thought differently.

EDIT: Considered asking CAB for help but I'm in no state to be making any phone calls, and they don't do email advice around here apparently, and there's no centres within walking distance (200m, roughly). Ha, I need their help to get a wheelchair so I can get to their centre and ask them for help. Godfuckingdammit.

Rambo's promised to call everywhere and shout at everyone on Monday for me. Is very lovely of him, but I'm going to be stressing out and crying all weekend.

New GP

New GP opened just down the road last week. Went for a 'new patient check-up' thing with the nurse last week and she goes 'ooh your blood pressure's a bit high, we need to keep an eye on that'. Yeah, fair enough, my blood pressure yo-yos up and down constantly. Anyhow, went to see my new GP today, he checked my blood pressure again and goes 'oooh that's ridiculously low that can't be right how are you still standing?' Well, I'm feeling rather faint and dizzy mister and leaning on Rambo to stop myself falling over, that's how. Explained to him about my POTS/POH and we left it a few minutes of me sitting down then tried it again and it was back to normal. Yay me. He's a bit worried and wants to keep an eye on it though, once a week or so. How I hate having my blood pressure taken...

Anyhow, about new GP...uhh, what can I say? He's lovely! Believed me when I explained about my problems, didn't try to argue at all or laugh me out of his office. I love that. All my mental problems of feeling like a fraud make talking to doctors extremely difficult for me usually, but this guy was alright. He gave me some new painkillers to try, which I'm not entirely happy about but at least he's trying, I guess. I just don't see how Co-Dydramol is going to be any help when we already know Co-Codamol does nothing. (Hey, Paracetamol and Codeine don't work, let's put them together in a slightly different way!) Even asked me about a wheelchair as he saw the difficulty I was having walking to his office. Can't give me one yet, as I'm still awaiting a formal diagnosis from the rheumatologist, but insisted that I tell him as soon as I have one so that he can give me a chair.

55 x 55 = 3025

80k told me off for not blogging, but I have an excuse! Flash Fiction Month was stealing all of my attention!

Someone challenged me to write 55 55-word stories. I think they were joking, but I have a hard time declining challenges. So I did it. In one day*. I am awesome. You guys all suck. Nyah.

In entirely unrelated news - my wrists hate me. Can't think why.

*Well, 24 hours. Same thing really, even if it was 8pm - 8pm.

Rambo is a Sweetheart

I complain too much about Rambo on here, and I fear you guys only ever see the bad side of him. So, as he was being incredibly sweet yesterday, I feel the need to share that with you now as well.

He was at work, as he always is on a Friday afternoon/evening*, but hanging around on msn for me to talk to him as he's been doing ever since I got him a smartphone a few weeks ago**. Which is very helpful when I'm feeling depressed and ranting, but not so helpful when I need food. Which, needless to say, isn't easy for me to make as the easy to make stuff disappears rather quickly. So anyway, Friday afternoon. I'd not had anything to eat all day as I couldn't make myself anything and he only woke up in time to go to work, not in time to make me food first. I was starving. Had a good hunt around in the kitchen for something I could make - found something. A tin of soup. Right at the top of the cupboard. I'm a short-arse, by the way. Just over five foot. Can't reach the top cupboards properly. But I thought I would try anyway as Rambo wouldn't be home for hours and I was starving. Reached up for it, fingers just barely brushing it, straining myself reaching this far as is, try harder, manage to move tin slightly, push it towards myself, meaning to catch it with my other hand, hand fails at catching. Tin of soup lands on the counter underneath the cupboard that is, rather inconveniently, covered in dirty dishes, which proceed to fall onto the floor and smash, some of them landing on my feet. Ow.

I run away and have a bit of a cry at this point as I get a bit overwhelmed and frustrated with myself when I fuck things up like that and I have no idea how I'm going to go about fixing it. Eventually decide 'fuck it, there's not much I can do about it' and figure I might as well get myself some food. Now, I don't know how many of you people reading this know me that well, but me walking around near broken glass is a sure-fire recipe for disaster. But I thought I could avoid it long enough to make a tin of soup. Oh how wrong I was. Cut my feet up a bit, despite my best efforts to avoid the glass, cut my fingers wiping off the glass that was stuck to my feet, managed to spill the tin of soup I was trying to cook all over the oven as I was having a bad wrist day and they were both weak and spasming and apparently not up to holding a tin of soup, let alone opening it.

At this point I give up, and run away crying again, to the laptop. Where I proceed to tell Rambo all about it and cry at him and tell him that I'm stupid and useless and can't do anything and everything I touch just goes horribly wrong and I don't even want to try fixing things because I'll just make it all worse.

This next bit is the sweet bit, by the way:

He replies to that with 'and sometimes when you touch things you make them the best they've ever been', then proceeds to take his lunch-break from work early, and use it to come home, clean up the kitchen, make me food, get me a blanket and pillows to lie on the sofa with, and order me not to try and do things again tonight and he'll fix everything I want/need when he gets home again. Then goes back to work, without any food for himself.

*He got a part-time job so that he would be at home to look after me most of the time, but they shifted his hours around soon after him getting it and he's been working 1-8pm Thursday-Saturday. It may be part-time hours, but I can't cope with him being gone seven hours at a time! Need his hours to be a bit more spread out!

** £15/month for a free phone, unlimited internet, 300 minutes and 300 texts. And he's absolutely loving it. Best thing we've bought in a long time.

My Fondest Dream

My first flash fic of the month (don't worry, I won't be posting all of them here, just thought the ones relating to EDS might be entertaining to anyone reading this):

I wake up to the sunlight streaming through the open window, dappled across my face. A smile spreads on my lips as I stretch in the sun, utterly contented. Something feels off, but I'm far too relaxed and peaceful to worry too much about what it could be. Instead I doze happily, letting my consciousness slowly rise to the surface in its own time, watching the playful patterns the sun makes on the inside of my eyelids.

Eventually it dawns on me - the reason things feel off. There's no pain. No muscle-ache, no stomach-ache, no joint-ache, nothing has that horrible out-of-place feeling of dislocation. I don't even have a headache. My head feels clear - light, almost. There's no fog, no overwhelming tiredness, no disproportional weight for my neck to hold up, no desire to just put my head down and keep my eyes closed.

I open my eyes. They don't hurt, they're not aching trying to adjust, they're not straining themselves to focus. I can see everything I look at. I look out the window and smile at the sun. I don't have to squint at the light. It only hurts my eyes if I look directly at it, I can look out over the sunlit world without so much as a flinch. I look down at myself and smile again. I run my hands over my body in awe, testing things as I go. My skin's no longer a pale, translucent colour. My breasts are perky, the skin on them unable to stretch any further than the skin on the rest of my body. My knees are in the right place, my legs go straight out from them. My feet arch properly. I hunt with my eyes now, twisting and turning in odd directions to see everything possible, pleasantly surprised that the twisting doesn't evoke a single painful stab. I cannot find any stretchmarks or rashes, no matter how hard I look.

I leap out of bed, ecstatic with my newfound ability to do just that, revelling in the fact that it didn't take me five minutes of slow torture to drag myself upright. I walk around, gracefully; no falling over, no tilting to the side, no clumsily knocking things over and walking into things I should be able to avoid. I get dressed, marvelling at the way my hands work together, at the sheer dexterity they possess, at the fact that I can put my bra on without having to wake up my boyfriend and have to ask for his help.

I run downstairs when I'm done, taking the stairs in groups of two or three, leaping down them in a way I've not been able to do since I was a child, giddy with the feeling of happiness this gives me. I grab my favourite breakfast off the shelf - raisin wheats, untouched for months as I very rarely allow myself to eat them - and devour a bowlful, with wonderfully natural cow's milk, certain in the knowledge that neither the wheat nor the milk will make my digestive system declare war on me.

Breakfast goes down easily, leaving me full of energy and life. I jump straight up after eating and quickly wash my bowl, quietly amazed at my ability to lift the bowl without a twinge, let alone scrub it, and equally shocked that the hot water I wash it in doesn't cause my wrists to swell up instantaneously. I've been standing up the entire time I've been in the kitchen now and I only just realise that in all that time I haven't heard a single complaint from my feet.

A seemingly permanent grin fixed on my face and a feeling of euphoria in my heart, I grab a few supplies quickly and dash out of the house, eager to use up some energy. I run down the street, elated, euphoric, ecstatic, there aren't enough words to describe the feeling of being able to run without any pain. Without my knees collapsing, without my hips dislocating, without my ankles twisting, without falling over, without my chest feeling as if it's about to explode, without my lungs hurting. I run as I've not done in more years than I can count, feeling the rush of the ground being eaten up by my legs, of soaring across the ground, bemused and astonished at the weightlessness of this act. I'd forgotten about that.

I reach the park at the end of the road and almost fly through the gate, eager to get to my destination. I can see it now, on the other side of the field, without any glasses. I keep running until I reach it, without the need to stop and rest along the way. My energy has barely been depleted from my running and I have more than enough left for the rest of the day. I reach my tree, my old friend, and leap as high as I can to reach the branches, pulling myself up with ease. I've not been climbing in eight years. I thought I would never be able to do this again. God, how I've missed heights.

I find my old comfortable spot in the branches and settle down there. I pull out the notebook and pencil that I'd quickly grabbed on my way out of the house and get to work. My mind rushes with thoughts and ideas and I can't help but smile as I write faster and more confidently than I've been able to manage since I hit puberty. I relish in the ability to concentrate that I thought I'd lost long ago and for good.

I am cured.