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.