I don't like receiving Disability Living Allowance (from here on in called DLA), due to the word which the D represents - Disability.
To those who see me out and about, they probably wouldn't realise I've got the things which mean I qualify for DLA. I hate the fact I have those things, but it is how things are.
My CPN, when doing her bit of the very lengthily form for my new allowance (currently pending, and has been for quite a while), said it was "compensation for how things are". I hate that. The way things are is basically due to my mucked up head, and how it has affected life. Not just my life, but my family's too.
20 years ago, as my parents were on day 11 of having a child of their own, did they really think that they would be still looking after the baby when it was 20? Probably not, it was probably a time full of little sleep, accommodating visiting relatives, and wondering quite how it would all work.
Anyway, the thing is, I'm still living at home. Bar a week at uni in which they visited every day, and the months in hospital (where they visited every day too), I've lived at home always. Some days, they have to wake me up, choose clothes for me as I can't function and make decisions, wake me up again as I've turned over and gone back to sleep, persuade me that out of bed is a better idea for the rest of the day... You get the idea. I'm not just being a stroppy ex-teenager who is difficult to wake up, I don't mean to make life difficult, but my parents hate mornings if I'm having a less-able-to-function day. Is that what DLA is for? Well, yeah, probably. Or persuading me that the outside isn't too scary, and I'll enjoy the thing when they've got me there? That too.
Sooo, my point is, when I have to face up to the fact I am considered disabled, that is bad enough. Add into the mix having to go to a medical that is either trying to catch me out, and make me say "Actually, I'm a very functioning human being", or going to result in proving that some person (with the horribly powerful right to tick a box to say "Yes" or "No" to an application) who met me for a medical thinks I'm disabled, and it will feel rubbish.
I would love to be able to say "I live alone, I function, I can look after myself, and enjoy everything" but I have a horrible feeling I've got too far to go before 2013. By which point, I hope to be doing my Masters (which dear Mr Osborne will probably make the funding of all the more difficult). I'd love to say "Actually I'm a very functioning human being", I really would. People at work probably don't understand what I am, but they see me for short bursts of time. Where the lovely line from Albert Camus "Nobody realises that some people expend tremendous energy merely to be normal." is vaguely the case [the "normal" needs to be replaced with "acceptably different" or something].
DLA is the bit of money which pays for petrol for me to be able to be taken to work, or orchestra, or something else which is considered "Living". It is in the name, in case you hadn't noticed. So, travelling to somewhere I've never been before to discus how crap I am at living, and how I need help, is horrible. And someone whose first job (according to Wikipedia, I'm not going to look further into it as I have better uses of my time, so this might be some bit of weird rumour) was "to provide data entry services to the National Health Service to record the names of people who had died in London", is right now not very liked by me. (is that non-explicitly negative enough? It is said in a grumpy way, if that helps.)
[And it also means that teaching VAT rates as a means of teaching percentages just got a bit too simple. Dividing by 5 is just, quite frankly, too simple. At least with 17.5% I could introduce the concept that 10% + 5% + 2.5% was quite a sensible way to calculate it, so using dividing by 10, then halving that, then halving that again, then adding them all up. Mr I've-got-lots-of-names-and-a-bit-too-much-power-for-my-own-good will thus be making real life applications different, so he can be also be blamed for the worsening rate of mathematical ability of children if it carries on at 20% for a long time.] (Disclaimer: obviously this isn't quite true. But still, it is slightly true.)
Tuesday 22 June 2010
Tuesday 1 June 2010
Medication
It is over a year since I took my anti-psychotic meds. Which means over 10 months ago people found out I had not been taking them. (I just nodded whenever the "And your parents deal with your meds, correct?" question came up in MH settings)
Since late last July, when I had a Care Meeting in which they admitted they couldn't all force me to take medication (I still had been cajoled into take my other meds as they were a different time of day), I haven't had any psych meds. I've had 2 ibuprofen since, and that is all the meds which I have had. Those 2 tablets weren't taken lightly, more suggested strongly as I sat clutching my head - and I gave in, and took them in some vague hope the headache might go.
Life minus medication is better for me. I had got to the point where my thoughts on meds were "I don't know the real me, there have been drugs in my body for too long for me to know the real me." I had been on medication since the age of 13, adding in more and more different types, taking dosages people didn't always agree were right for a child.
Turns out the real me is a more bubbly life. Even with the stuff like I described in my last post, I'm still more bubbly now than I was. I'm several dress sizes smaller, and 4 stone lighter than I was. Not so tired on the whole (even as I feel incredibly tired right now, it is nothing in comparison), not wanting to eat the whole kitchen worth of food (I wanted to eat the contents of those unidentified cans at the back of the cupboards as they might have been the food which would fill me up) and I know this is the un-medicated *real* version of my body.
Side effects are horrible. I put on weight because I was constantly hungry, I was too tired to exercise it off, I was binging because I needed to fill the immense hungriness, then purging (which is a horrible thing to feel you *have* to do, and a horrible thing to do). I was feeling horribly ashamed by this ever expanding body, which meant that the "body image issues" just got worse. The despair at the hideous body meant I didn't want to leave the house, so I did even less exercise... [you see the pattern emerging, I'm sure]
If I had not become so bloody minded and stubborn about it, I'd probably still be taking medication. I'd be even heavier than I was. I'd probably still be feeling rubbish about it all. Instead, I stopped taking them, one by one, without telling anyone. So when I did, I could say "I haven't taken them for X weeks, and you haven't noticed any difference, so I reckon I don't need to take them again."
Since then, I have now got a basic statement in my files along the lines of: "Don't give her medication. We tried most of them [and she point blank refused the lithium/sodium valproate option, which was what we might have gone across to if she accepted] and none worked. So don't bother, and work out what it the current issue before doing the "throw meds at her" option." And I am sooo soo soo so so glad that they have realised that medication isn't for me. Talking is hard, yeah, but giving me meds which don't help and come with the side effects is worse.
I did my college exams being unable to speak due to a swollen tongue, and unable to focus my eyes due to very very slow reactions. I was having a mild allergic reaction to the meds, and they were monitoring it, but not taking me off the medication. (I was in a psych ward) Not exactly the way to get the grades you have worked hard for up until that point.
Anyway, here is to another year med free, a year in which I'll drink more wine, enjoy more music, not fall asleep constantly, lose more of the med-weight, and bounce around. Thus fitting into more of the clothes I left in boxes in my room in the hope I'd fit into them again. And guess what? I am. Pink trousers, bright green tops, more fitted clothes, and less stretchy material! *grins* I've become more of a normal shape, instead of huge in all directions - yep, I'll still have the stretch marks, I'll still have the days in which I wear my "fat clothes", but it is so much easier to live with.
Some people are helped by medication, and I'm happy for them. But I'm aware it is a relatively easy option for MH people to be giving out. I think when you have seen the horrible things it does in the cause of "helping", then you become more sceptical. If there is any place to put you off psych meds, it is a psych ward. Especially a psych ward at medication time.
Which is also something I plan to avoid, just as a matter of fact. Seeing 5 in the space of 13 months was enough. Eating their rubbish foods was enough to send me bonkers - one lunchtime meal choice was available at one place I was at for 10 weeks, so I had that every day when I couldn't persuade them to just not order me a meal/let my parents take me out/let me have some healthy stuff from home.
Since late last July, when I had a Care Meeting in which they admitted they couldn't all force me to take medication (I still had been cajoled into take my other meds as they were a different time of day), I haven't had any psych meds. I've had 2 ibuprofen since, and that is all the meds which I have had. Those 2 tablets weren't taken lightly, more suggested strongly as I sat clutching my head - and I gave in, and took them in some vague hope the headache might go.
Life minus medication is better for me. I had got to the point where my thoughts on meds were "I don't know the real me, there have been drugs in my body for too long for me to know the real me." I had been on medication since the age of 13, adding in more and more different types, taking dosages people didn't always agree were right for a child.
Turns out the real me is a more bubbly life. Even with the stuff like I described in my last post, I'm still more bubbly now than I was. I'm several dress sizes smaller, and 4 stone lighter than I was. Not so tired on the whole (even as I feel incredibly tired right now, it is nothing in comparison), not wanting to eat the whole kitchen worth of food (I wanted to eat the contents of those unidentified cans at the back of the cupboards as they might have been the food which would fill me up) and I know this is the un-medicated *real* version of my body.
Side effects are horrible. I put on weight because I was constantly hungry, I was too tired to exercise it off, I was binging because I needed to fill the immense hungriness, then purging (which is a horrible thing to feel you *have* to do, and a horrible thing to do). I was feeling horribly ashamed by this ever expanding body, which meant that the "body image issues" just got worse. The despair at the hideous body meant I didn't want to leave the house, so I did even less exercise... [you see the pattern emerging, I'm sure]
If I had not become so bloody minded and stubborn about it, I'd probably still be taking medication. I'd be even heavier than I was. I'd probably still be feeling rubbish about it all. Instead, I stopped taking them, one by one, without telling anyone. So when I did, I could say "I haven't taken them for X weeks, and you haven't noticed any difference, so I reckon I don't need to take them again."
Since then, I have now got a basic statement in my files along the lines of: "Don't give her medication. We tried most of them [and she point blank refused the lithium/sodium valproate option, which was what we might have gone across to if she accepted] and none worked. So don't bother, and work out what it the current issue before doing the "throw meds at her" option." And I am sooo soo soo so so glad that they have realised that medication isn't for me. Talking is hard, yeah, but giving me meds which don't help and come with the side effects is worse.
I did my college exams being unable to speak due to a swollen tongue, and unable to focus my eyes due to very very slow reactions. I was having a mild allergic reaction to the meds, and they were monitoring it, but not taking me off the medication. (I was in a psych ward) Not exactly the way to get the grades you have worked hard for up until that point.
Anyway, here is to another year med free, a year in which I'll drink more wine, enjoy more music, not fall asleep constantly, lose more of the med-weight, and bounce around. Thus fitting into more of the clothes I left in boxes in my room in the hope I'd fit into them again. And guess what? I am. Pink trousers, bright green tops, more fitted clothes, and less stretchy material! *grins* I've become more of a normal shape, instead of huge in all directions - yep, I'll still have the stretch marks, I'll still have the days in which I wear my "fat clothes", but it is so much easier to live with.
Some people are helped by medication, and I'm happy for them. But I'm aware it is a relatively easy option for MH people to be giving out. I think when you have seen the horrible things it does in the cause of "helping", then you become more sceptical. If there is any place to put you off psych meds, it is a psych ward. Especially a psych ward at medication time.
Which is also something I plan to avoid, just as a matter of fact. Seeing 5 in the space of 13 months was enough. Eating their rubbish foods was enough to send me bonkers - one lunchtime meal choice was available at one place I was at for 10 weeks, so I had that every day when I couldn't persuade them to just not order me a meal/let my parents take me out/let me have some healthy stuff from home.
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