Sometimes I Hate the NHS

Don't get me wrong, I'm ecstatic that we have free healthcare. I've heard enough horror stories of other countries to be damned grateful for what we have. But having said that - it could be so much better. I mean, it may not be free in other countries but they also don't have to wait six months to see a specialist.

Anyhow. I eventually managed to get to an appointment with my GP for the first time since seeing Snowdon. Although it wasn't technically my GP, just the locum who was on duty. Turns out that although Snowdon talked with me about seeing physios at his hospital and we discussed occupational therapy and talked about how I should probably be referred to Dr Ho's new clinic at the Manchester Royal Infirmary as she was more of an EDS specialist...he'd not actually referred me to any of these places. I asked my GP if he could refer me and he just didn't seem sure about any of it. Sent me away with a 'scrip for Nortryptiline, as Snowdon suggested, and that was that.

Then this morning I got a Choose & Book letter through. Now, I'm sure we all know that Choose & Book doesn't actually mean Choose, but it usually means I at least get to see what's available before picking the only available appointment. Not so this time. This time I have a 'selected clinic' and these instructions:

'Your selected clinic has been notified of your need to book an appointment with them. They will contact you to agree an appropriate date and time for your appointment.'

Wonderful. Now I get to wait around for them to call. Which they'll probably do whilst I'm asleep as I can't anticipate when they'll call and can't force myself to stay awake all day everyday with my sleep schedule so fucked. Or quite possibly I'll be awake but too much of a bundle of nerves to answer the phone - most times when it rings I ignore it.

I like these things to be on my terms, dammit.

But that's not even what I'm mad about. What I'm mad about is the 'selected clinic'. It's for physiotherapy, but not the physios at Dr Ho's clinic, where I was meant to be referred, or the physios at Snowdon's clinic, who I was meant to be seeing 'in the meantime'. No, I get to go see physios at the mobile care unit.

I've been to this mobile care unit before. It's basically a bunch of portacabins. The 'wrist doctor' I saw there had no idea what he was doing, put me in a bunch of pain moving my wrists around (which subluxed, but he didn't know the word and laughed at me when I tried to explain), didn't listen to a word I said and had never heard of EDS. He sent me for utterly useless tests and bloodwork. I then spent three hours having three nurses - and finally that doctor again - poking me with needles trying to get some blood. I came home with holes in both arms and both hands, a lovely colourful array of bruises, and they managed to get no blood out of me.

Okay so I didn't see any of the physiotherapists there, but I'm not holding my breath that they'll actually know anything about EDS seeing as this is not in any way a rheumatologist or connective tissue disorder clinic. And sending bendies to physios who don't know about bendies is a bad bad BAD plan that has done so many of my bendy friends permanent damage.

Smugness:

That feeling you get when you call your dog once and she comes over to you and sits patiently while you put her lead on, whilst the people who've been trying to get ahold of their dogs for 20 minutes stare at you in amazement and jealousy.

Exhaustion

I've not had this level of exhaustion since my schooldays, where I dealt with insomnia every night and was then woken up after roughly three hours of sleep in order to get to school.

What would happen was me forcing myself to open my eyes, despite how heavy they were feeling, forcing myself to get up and switch the light on, then forcing myself to get dressed, all despite my utter exhaustion because I knew I had to go to school and I had no choice about it and if I stayed in bed any longer I would be late.

That all sounds fairly normal, until five minutes later when I realised I was actually still lying in bed and had either dreamt or hallucinated the whole thing. Then I would start the whole process all over.

Repeat until the mother came in to shout at me. Then I felt incredibly guilty and doubled my efforts. To no avail. Plus I'm feeling even more exhausted at this point because as far as I'm concerned I've already forced myself to get up and do things, going through each meticulous detail, about twenty times. And felt the exhaustion of each one.

Eventually this would end with the mother actually physically dragging me out of bed, forcing clothes on me and dragging me to the car. Usually after throwing heavy things at me (she never hit me with her actual hands). At that point I would be actually properly awake so my attempts at explaining to her what had happened got laughed at.

I'd then get in trouble at school for being late, then fall asleep later and get in trouble for that, usually to shouts from teachers of 'oh I'm sorry, am I boring you?!'

Anyhow, to cut a long story short, Rambo came home today to find me still in bed, was quite surprised (and annoyed) at this and when he woke me up to ask me what I was still doing in bed I just looked at him through bleary eyes then burst into tears and fell all over myself apologising.

I tried to explain, but I'm not sure he understood. I mean, it certainly sounds crazy and not-entirely-plausible. Oh well. I'm awake now at least.

Bitterness, Or Just Feeling Constantly Left Out?

I hate being the bitter cynical bitchy person who ruins other people's conversations (the whole 'can't talk about that around <insert minority group/person here>) but you have no idea just how frequently things crop up in casual conversation that stops me from talking because I either just have no way of relating to what people are talking about or me attempting to would make other people uncomfortable. Or possibly result in me getting pissy at people, or me trying to not be pissy at them and them taking it as such anyway. So I stay quiet. And then people are all 'why are you so quiet?'

Okay so most of these people may not know about my problems, because I don't like constantly talking about them and having to explain about them. But everyone everywhere, both on the internet and in real life, inevitably winds up talking about things that I can't join in with and inadvertently insulting me. Not intentionally, but I feel bad when people are whining that they feel bad because they've spent all day sitting on their ass playing video games and only done half of their chores, when their list of chores that they've done is about four times what I can handle on a good day and I've done virtually nothing. Except sit on my ass half-assedly playing video games because I can't even play them properly.

Or when someone asks what they've got planned for the weekend and they reply by rattling off a huge (in my eyes) list of things, then round it up by saying 'not much actually, pretty slow weekend'

Or when they're talking about their jobs and how they moved from an office job into waitressing because it got them more exercise and they hated sitting on their asses all day.

Or when they're talking about uni and how hard it is. And then talking about how it's awesome and they just get drunk all the time. I think there might be some sort of correlation there.

Or when they're discussing exercise.

Or when they're discussing diets and 'healthy food'. (I'm meant to eat 10g of salt a day. I have problems with low blood pressure and low blood sugar. I basically need to eat junk.)

Or when they're discussing expensive things.

Or when they're whining about being 'poor' and therefore can't afford said expensive things. After buying said expensive things. 'I really shouldn't have but I just couldn't stop myself!'

Or when they're whining about how they can't write because they can't concentrate.

Or when they whine that they're in pain and I offer them painkillers and they're all 'it's not that bad, I'll just grin and bear it' (Hint: If it's not that bad, don't whine. If it's whine-worthy then it should be painkiller-worthy. Otherwise it comes off as you don't actually want to fix it, you just want sympathy.)

Or when they whine about 'insomnia', and I sympathise, and they say it only happens to them when they've had too much caffeine etc and start trying to tell me about good sleep hygiene to cure my insomnia. (Hint: That's not fucking insomnia. That's poor sleep hygiene. Big difference. Main difference being that good sleep hygiene will cure your bad sleep hygiene woes.)

(NB: These are all just examples from today. Many, many more happen on a daily basis. I don't usually write them down, I usually just sit there quietly waiting for it to get back to a topic I can actually talk about. But I am so bored right now.)

Evil Genius

Couldn't sleep last night. Too much pain. Went downstairs to get a snack but couldn't manage to make it back up the stairs. Tried curling up on the sofa with a book but Moxie wouldn't leave me alone. Took cushions, blankets, snacks and book into the hall where I could shut the door and hide from the dog. Made nest of blankets/cushions, read book until I was so exhausted I was dropping off. Managed to get back up the stairs and collapsed in bed.

Rambo woke up in bed with me, as he had been when he went to sleep. Went to work, on the way discovering a nest of cushions and blankets in the hall, with the door open and the books etc put away on a table.

He spent all day thinking Moxie was an evil genius who built herself a nest to sleep in. I was loathe to disillusion him.

Comments

I've had a (mostly*) overwhelming response to my OMBH post, but one of the comments I have to share with you all. It absolutely floored me. I just had no idea that there were places in the world where people who had no knowledge of disability (ie no disabled family or friends) could think this way about it:

Whenever I see our neighbour's wheelchair-bound daughter across the street being ferried somewhere in a taxi I know is paid for by mine (and others') taxes, it makes me proud to be living in a somewhat decently civilized country.

That's from someone in Finland. And I'm still floored by the fact that it floored me. Surely that should be a normal response? How the fuck did we manage to mess up our society so badly that that seems so abnormal to me?





*Surprisingly, only two trolls. One that didn't even read my post! Replied with 'tl;dr, what's your problem? You're ill? With what?' - I wasn't entirely sure how to respond to that.

One Month Before Heartbreak

If you guys were wondering why I hadn't blogged about this yet - it's because you're wrong. I have done. Just not here.

I posted a ginormically long journal on dA about it, as I figured posting here would be nothing more than preaching to the choir.

Response has been pretty good so far. Y'see, none of the people over there had any idea about any of this, and are quite frankly appalled that this could be happening in civilised society. Many petition-signings going on! Yay!

Short Update

My Aunt was diagnosed with breast cancer over a year ago. It was in early stages, responded to chemo and went into remission. Apparently she found another lump just before Christmas and it was confirmed that it had returned but she held off on telling anyone until after New Year's so she 'didn't ruin anyone's holiday'.

All I can think is how horrible her holiday must have been trying to deal with this all by herself. Suffering in silence sucks, big time, and I just wish she'd have told us when it happened so I could have given her a big spoonie cuddle and made sure her Christmas was extra-awesome.

I'm Going Crazy

OWWWWWWWWW.

+Yaaaaaaaaaaawn.

^Pain and fatigue. That is all my life is.

I missed a doctor's appointment this morning because I just could not make myself be awake for it. I'd care more if I thought there was any chance my doctor would have gotten me some painkillers but all I can think is 'At least I didn't hurt myself walking down there.'

When I DID wake up the first thing I did was read news and blogs and catch up on current politics, as I do most days. Then, as I do most days, I cried and settled into a slump of depression and was unable to do anything for hours.

My mental health can't take knowing what the government's doing, but I can't bear to NOT know. I don't want it just sprung on me all at once later, but the constant barrage of assaults on equality and justice are slowly eroding my sanity.

Quests, Insomnia and Diary-Novels.

Me and Rambo have a new system. I've been setting him quests to do housework, that turn in for shitloads of gold on warcraft.

My house isn't looking even slightly clean yet, but the laundry pile is slowly going down and I've not felt guilty for not doing things in days. In fact, I've spent the time he's been doing things making gold on WoW, and feeling like I'm actually doing something useful and productive as that gold will buy me more housework.

I'm also very nearly NOT acutely ill again, so things are looking up I guess. Yay.

Also, whilst lying in bed being all insomniac-y last night, I was thinking about my NaNo-novel and the horrible pacing problems I was having with it. May have a solution. The problem was I was trying to put an entire condensed lifespan into one novel, and the rush of years going by and then slowing down for a day or two for specific events was making the whole thing crazy and nonsensical. It sort of worked for the narrative voice, but the close third person when it slowed down just seemed like too much of a jumpy transition.

Possible solution: Diary.

Pros:

-The choppy nature of my pacing makes perfect sense with a diary. SO many people write in them for a few days then forget for a few months, or just make a habit of writing in them once a month. Easy simple solution for the passage of time.
-I get to be all comfort-zoney first person. Woo!
-I can go on for hours and hours about feelings without feeling like* I'm dragging the whole thing down and having to find a way to transition back to action. Big win for literary fiction!

Cons:

-No narrative voice. This sucks in early stages when main character is five years old and doesn't really understand what's going on. If she doesn't understand it I can't write it. I can just heavily imply.
-Again, for early stages, having to write from a child's perspective means figuring out what kind of a vocabulary and writing style a child would have at any given age. Then adjusting for extra intelligence and bookworminess.
-It's a fucking diary. How cliché and teenage-girly is that?

Pros and cons seem to be about even at this stage, but I honestly can't see another way around my pacing problem. Although I'm sure I've read books in the same vein that HAVE handled this problem. Well enough for me to not notice it was a problem, and therefore not remember how they handled it. I maybe need to dig up these books and re-read.




*Did it again. Not sorry.

Yay for being ill?

I'm actually sort of happy that I'm ill because it means I'm barely eating anything, which means the food in the house will last far longer, which means I don't have to spend money on groceries for a while.

^The fact that I can say that and be completely serious about it worries me.

I've worried myself a few times like that, actually. For instance - in order to go out Christmas shopping or get to the post office or go to the Goddamn CAB so I can get my benefits sorted out, I have to get a bus down to the precinct. I'm reluctant to do this because the bus fare is roughly 6 meals worth of money and it just doesn't seem worth it.

When you count money by how much food you can get with it, that's worrying. When you lose your appetite and are happy about it because it saves you money, that's worrying.

I reiterate, guys, welfare is NOT a lifestyle choice. This is not any kind of 'life'. This is existing, and struggling to do that.