I had a lovely afternoon. Yes folks, you read that right, me, having a good time. We had a knitting group meeting in Cafe Nero and there was yarn, there was knitting, chatter about knitting (and some about other subjects) and amazing ice drinks. First time I'd tried one of these. It was mango and passionfruit juice blended up with ice, incredible! Apparently it's called a Frappe. Apparently even my parents had heard of them and tried them, but the idea had somehow passed me by. It was wonderfully cooling, as good as an icecream, but less messy.
When I can suspend all the nasty things and forget about all the worries I can be quite content, calm, even verging on happy. But it's fragile and I suppose it is good to enjoy yourself sometimes, but I do worry that I'm just being an ostrich and burying my head in the sand. However, for now I'm going to try to stay positive and enjoy the little things like having company and amazing icy drinks.
Saturday, 2 May 2009
Friday, 1 May 2009
garbling
This evening I have been charmingly irritable, so I am typing this from behind the barricade I built to protect innocent bystanders from projectile rage. It's Les Miserables come to Croydon. Seriously, why do I get so irritable? I hate it. I even get irritable about me being irritable - vicious circle or what? I try to avoid people when I'm like this, though my poor parents can come in for some snapping, that said, they often put themselves in the line of fire. They can be slightly oblivious to hints, a pithy message in six foot high three dimensional letters might just get the message across, but little short of that.
Mercifully frantic knitting - the sort where if you look carefully you can actually see sparks coming off the needles and the yarn gently smokes afterwards - and properly belly-laugh comedy can melt away the nasty prickly feelings and coax me out from the barricade. Tonight it was 'Genius' on BBC2, though I still maintain it should never have left Radio 4, don't mind me, I get a little protective of radio as a medium. The hot bath and Adrian Plass that preceded the laughter-fest helped a little too.
Though when I was in the bath I realised that so far as the church seems from where I'm sitting I'm one of the worst combinations any church could be lumbered with, single female (there's already plenty of us in the church waiting to be made inferior by smug marrieds and pounced on for "singles ministry") and chronically ill and apparently stubbornly refusing to be healed and fit in with the neat and tidy comfortable conformity expected of church members. Hands up, I admit it, I'm exaggerating. Most of the married people I know are at very worst not intentionally smug, the majority are lovely. Likewise I haven't yet been pounced on about singleness, perhaps because 24 no longer counts as "on the shelf" yet or perhaps because most of the time I'm not well enough to be there? It does seem interesting to me that "singleness" should be considered a Christian issue, along side prayer and Bible study and cell groups and predestination and mission and quiche. Is it that not being married is seen as untidy or wrong somehow? Yet there seem to be as many issues (if not more) to being married as there are to not being married. So why is one state apparently beamed upon with utter approval while the other is treated as a vaguely embarrassing problem?
However, I think being single is the least of my 'offences'. I am young and chronically ill (illness seems to be better tolerated among the more elderly in the church, by which I mean people of at least 75). As yet there has been no 'getting better' (as all sick people are expected to play the game and do) nor has there been a miracle cure, not I hasten to add by choice, of course I want to be well! Instead I struggle through life, finding every day incredibly difficult and doing offensive things like being unable to be on rotas or committees, or even make it to church. Sometimes I feel about as welcome within the church as Banquo's ghost in MacBeth or swine flu on the underground.
I know I've gone on and on about all this lately but I am upset by it, more than that I'm angry, at the sheer injustice of how I am treated and how I see others treated. I am upset by the gulf that exists between the church I read about in the Bible and the church I see existing in the world in terms of the attitudes towards the 'untidy' and most especially the sick. We don't choose to be sick or disabled, we don't choose to be unable to take part in church activities and 'do our bit', we don't deliberately go out of our way to be difficult and uncomfortable, really, please believe me. I'm going on and on about this here, on my blog, as a way of getting some of how I feel out of my system, otherwise I'm going to explode, yell, shout, cause a massive scene, be insanely rude, part of me longs to do it. The more sane part of me knows this is a bad idea. But fellow Christians, brothers and sisters, I'm sick of being invisible. Sorry if I've somehow wandered off with the wrong idea about what the church is for, but I thought we were here to support one another? To encourage one another, teach one another and reach out into the world to share the priceless treasure we have been given. Not simply to attend meetings, be on rotas and prove how holy we are by how packed our diary is.
I know I'm guilty of this too: I hold my hands up. Before I got too sick to continue and when I was a very new Christian I was a fully paid up member of the cult of busyness, I rarely saw my housemates, dashed from meeting to meeting, having I will admit a great time and acquiring a great deal of head knowledge. They say there's no more vehement opponent of smoking than an ex-smoker, likewise some of that phenomenon is true for me, I'm a human being. But I did run myself into the ground doing this, doing what I thought was right and was what a 'good Christian' did, what a holy Christian did. So I pushed myself and pushed myself through all the signs and symptoms my body used to try to put the breaks on me and I crashed headlong into the buffers. Please, I beg you, don't do the same.
Busyness is something I've noticed is prevalent in Christian jobs too, from the most humble volunteer or intern through to ministers (and no doubt bishops and archbishops) everyone is running from one meeting to another, one appointment to another. Starting work at 5am and finsihing at 11pm, constantly on the go. No doubt unintentionally it shuts anyone who is not physically up to keeping up from working for the church. I would have loved to have done a church internship but knew there was no point because I can't keep up. It's as though we're trying to prove to God and to one another how committed we are. It's also as though we don't believe that God can do without us, but He can, He chooses to use us, amazingly.* But the kingdom of God won't fall apart if we all slowed down, spent some more time "be[ing] still and knowing that I am God" (Psalm 46.10), spent some more time with one another, helping one another along the road with Jesus.
This stuff doesn't just go generally for "the church", it also goes for friendships. 'Busyness' has also robbed me of most of my friends. Being ill for a long time is immensly boring and immensly lonely. Yes I rely on Jesus, I do my best to maintain as close a relationship as I can with Him and He is a great comfort, but sometimes you long for more, some human contact, a voice, a face. I also long for the opportunity to give something to the church and to my friends, because the healthiest relationships are ones of more or less equal levels of give and take. This feels garbled and self indulgent, this whole post, I don't feel like I can quite get across exactly what I'm trying to say. Anyhow it is long past bedtime now so I shall have to return to it tomorrow
* (See Psalm 50 and another place I can't remember but will fill in later)
Mercifully frantic knitting - the sort where if you look carefully you can actually see sparks coming off the needles and the yarn gently smokes afterwards - and properly belly-laugh comedy can melt away the nasty prickly feelings and coax me out from the barricade. Tonight it was 'Genius' on BBC2, though I still maintain it should never have left Radio 4, don't mind me, I get a little protective of radio as a medium. The hot bath and Adrian Plass that preceded the laughter-fest helped a little too.
Though when I was in the bath I realised that so far as the church seems from where I'm sitting I'm one of the worst combinations any church could be lumbered with, single female (there's already plenty of us in the church waiting to be made inferior by smug marrieds and pounced on for "singles ministry") and chronically ill and apparently stubbornly refusing to be healed and fit in with the neat and tidy comfortable conformity expected of church members. Hands up, I admit it, I'm exaggerating. Most of the married people I know are at very worst not intentionally smug, the majority are lovely. Likewise I haven't yet been pounced on about singleness, perhaps because 24 no longer counts as "on the shelf" yet or perhaps because most of the time I'm not well enough to be there? It does seem interesting to me that "singleness" should be considered a Christian issue, along side prayer and Bible study and cell groups and predestination and mission and quiche. Is it that not being married is seen as untidy or wrong somehow? Yet there seem to be as many issues (if not more) to being married as there are to not being married. So why is one state apparently beamed upon with utter approval while the other is treated as a vaguely embarrassing problem?
However, I think being single is the least of my 'offences'. I am young and chronically ill (illness seems to be better tolerated among the more elderly in the church, by which I mean people of at least 75). As yet there has been no 'getting better' (as all sick people are expected to play the game and do) nor has there been a miracle cure, not I hasten to add by choice, of course I want to be well! Instead I struggle through life, finding every day incredibly difficult and doing offensive things like being unable to be on rotas or committees, or even make it to church. Sometimes I feel about as welcome within the church as Banquo's ghost in MacBeth or swine flu on the underground.
I know I've gone on and on about all this lately but I am upset by it, more than that I'm angry, at the sheer injustice of how I am treated and how I see others treated. I am upset by the gulf that exists between the church I read about in the Bible and the church I see existing in the world in terms of the attitudes towards the 'untidy' and most especially the sick. We don't choose to be sick or disabled, we don't choose to be unable to take part in church activities and 'do our bit', we don't deliberately go out of our way to be difficult and uncomfortable, really, please believe me. I'm going on and on about this here, on my blog, as a way of getting some of how I feel out of my system, otherwise I'm going to explode, yell, shout, cause a massive scene, be insanely rude, part of me longs to do it. The more sane part of me knows this is a bad idea. But fellow Christians, brothers and sisters, I'm sick of being invisible. Sorry if I've somehow wandered off with the wrong idea about what the church is for, but I thought we were here to support one another? To encourage one another, teach one another and reach out into the world to share the priceless treasure we have been given. Not simply to attend meetings, be on rotas and prove how holy we are by how packed our diary is.
I know I'm guilty of this too: I hold my hands up. Before I got too sick to continue and when I was a very new Christian I was a fully paid up member of the cult of busyness, I rarely saw my housemates, dashed from meeting to meeting, having I will admit a great time and acquiring a great deal of head knowledge. They say there's no more vehement opponent of smoking than an ex-smoker, likewise some of that phenomenon is true for me, I'm a human being. But I did run myself into the ground doing this, doing what I thought was right and was what a 'good Christian' did, what a holy Christian did. So I pushed myself and pushed myself through all the signs and symptoms my body used to try to put the breaks on me and I crashed headlong into the buffers. Please, I beg you, don't do the same.
Busyness is something I've noticed is prevalent in Christian jobs too, from the most humble volunteer or intern through to ministers (and no doubt bishops and archbishops) everyone is running from one meeting to another, one appointment to another. Starting work at 5am and finsihing at 11pm, constantly on the go. No doubt unintentionally it shuts anyone who is not physically up to keeping up from working for the church. I would have loved to have done a church internship but knew there was no point because I can't keep up. It's as though we're trying to prove to God and to one another how committed we are. It's also as though we don't believe that God can do without us, but He can, He chooses to use us, amazingly.* But the kingdom of God won't fall apart if we all slowed down, spent some more time "be[ing] still and knowing that I am God" (Psalm 46.10), spent some more time with one another, helping one another along the road with Jesus.
This stuff doesn't just go generally for "the church", it also goes for friendships. 'Busyness' has also robbed me of most of my friends. Being ill for a long time is immensly boring and immensly lonely. Yes I rely on Jesus, I do my best to maintain as close a relationship as I can with Him and He is a great comfort, but sometimes you long for more, some human contact, a voice, a face. I also long for the opportunity to give something to the church and to my friends, because the healthiest relationships are ones of more or less equal levels of give and take. This feels garbled and self indulgent, this whole post, I don't feel like I can quite get across exactly what I'm trying to say. Anyhow it is long past bedtime now so I shall have to return to it tomorrow
* (See Psalm 50 and another place I can't remember but will fill in later)
Wednesday, 29 April 2009
to the pub, via Samaria
So today I've been pretty brain fogged and muddling up alsorts of things, to varying degrees of embarrassment. Front runners have to be confusing the amount discounted with the amount the yarn cost in a yarn store (thankfully online and via email - the wonderful Loop for those interested) and going to meet my friends at the wrong pub. Thankfully the correct pub was only a short walk away and Victoria helped sort me out. Time for more omega-3 oil!
Pub was a bit of a strain, it was noisy and cramped with chairs that made my legs ache horribly. Sitting on a chair shouldn't hurt, it just shouldn't. Hmm I should quit moaning really, it could be worse. But also talking to people I haven't seen in a while, well that's always difficult, especially when 'stuff' has happened. You just can't explain how you truly are in a noisy pub and I couldn't bring myself to talk about Amy there, it was just too much. Even in a quiet suitable environment the problems are twofold.
Firstly there is getting across how you are, finding words adequate to explain: trying to sort out the quagmire of confusion in your brain and make it into words and sentences. Then secondly there is the problem of their reaction, of going too far and producing profound shock. If you consistently downplay how bad things are, which I do, a lot, because it is simply easier, then when someone learns how things actually are they can react badly and find it hard to deal with. Another frustration is going through the painful process of finding words and bareing your soul, only for the person or people who have asked and pressed to know, to do nothing. To murmur things, make the odd unhelpful suggestion, pray some no doubt well intentioned prayer and then do nothing. The conversation or meeting or group or service will end, we'll all go home and nothing changes, the concern apparently melts away.
What's the point of asking someone how they are, and pressing them to tell you, learning that they are in pain (physically/emotionally/spiritually) and then walking away and doing nothing? Not even sending a text message or email or popping in to say hello or meeting up for twenty minutes, just maintaining radio silence until the next time. It's like going up to the man beaten on the road to Samaria and asking him how he feels, which bits hurt, how what has happened to him has made him feel, looking concerned, then crossing over to the other side and walking on. Masqueraded concern.
I know the church finds people like me hard to deal with, not healed, not getting better, not walking in triumphant victory, struggling this month and last month and this time last year. And if you find it boring, think how I feel?! I also know that this whole issue makes me very angry and that some of that is bad, nasty, bitter anger at how I am treated (or feel I am treated - I am aware that sometimes I don't see things quite right, depression does that unfortunately), it's not the good, powerful, righteous anger, like Jesus in the temple, that can be a power for enormous good. That's something I know I need to sort out, I talk to God about it, I repent, I'm repenting again now. Therefore I'm aware that some or maybe a lot of that anger is most likely coming through in this post and this blog and that I'm saying some hard things and that it might seem quite, I don't know, offensive? But I'm hurting so, so much, pain builds up on pain, life seems so black, I feel so alone and Jesus the only light left.
Relying on God is great, it is what I should be doing, I am doing my best. But as I've said before, we all need one another, Adam alone was not good, the Bible says it, go look at the beginning of Genesis. Even though he had perfect communion with God. So for we who have less than perfect communion with God helping one another becomes even more important.
Pub was a bit of a strain, it was noisy and cramped with chairs that made my legs ache horribly. Sitting on a chair shouldn't hurt, it just shouldn't. Hmm I should quit moaning really, it could be worse. But also talking to people I haven't seen in a while, well that's always difficult, especially when 'stuff' has happened. You just can't explain how you truly are in a noisy pub and I couldn't bring myself to talk about Amy there, it was just too much. Even in a quiet suitable environment the problems are twofold.
Firstly there is getting across how you are, finding words adequate to explain: trying to sort out the quagmire of confusion in your brain and make it into words and sentences. Then secondly there is the problem of their reaction, of going too far and producing profound shock. If you consistently downplay how bad things are, which I do, a lot, because it is simply easier, then when someone learns how things actually are they can react badly and find it hard to deal with. Another frustration is going through the painful process of finding words and bareing your soul, only for the person or people who have asked and pressed to know, to do nothing. To murmur things, make the odd unhelpful suggestion, pray some no doubt well intentioned prayer and then do nothing. The conversation or meeting or group or service will end, we'll all go home and nothing changes, the concern apparently melts away.
What's the point of asking someone how they are, and pressing them to tell you, learning that they are in pain (physically/emotionally/spiritually) and then walking away and doing nothing? Not even sending a text message or email or popping in to say hello or meeting up for twenty minutes, just maintaining radio silence until the next time. It's like going up to the man beaten on the road to Samaria and asking him how he feels, which bits hurt, how what has happened to him has made him feel, looking concerned, then crossing over to the other side and walking on. Masqueraded concern.
I know the church finds people like me hard to deal with, not healed, not getting better, not walking in triumphant victory, struggling this month and last month and this time last year. And if you find it boring, think how I feel?! I also know that this whole issue makes me very angry and that some of that is bad, nasty, bitter anger at how I am treated (or feel I am treated - I am aware that sometimes I don't see things quite right, depression does that unfortunately), it's not the good, powerful, righteous anger, like Jesus in the temple, that can be a power for enormous good. That's something I know I need to sort out, I talk to God about it, I repent, I'm repenting again now. Therefore I'm aware that some or maybe a lot of that anger is most likely coming through in this post and this blog and that I'm saying some hard things and that it might seem quite, I don't know, offensive? But I'm hurting so, so much, pain builds up on pain, life seems so black, I feel so alone and Jesus the only light left.
Relying on God is great, it is what I should be doing, I am doing my best. But as I've said before, we all need one another, Adam alone was not good, the Bible says it, go look at the beginning of Genesis. Even though he had perfect communion with God. So for we who have less than perfect communion with God helping one another becomes even more important.
Tuesday, 28 April 2009
The second epistle to my friend
Dear Amy,
Hello again. I'm listening to "We must go/God of Justice" again. I never told you, but when I first heard this song at church one Sunday evening in Durham I loved it so much that I got up ridiculously early the next day and rushed to the cathedral shop to buy the cd before a doctor's appointment I had that morning. It was way out of my way, up a steep hill, but I had to have that song and it obviously wasn't on itunes music store or I didn't think of that. I must have been their first customer of the day and the sense of triumph when I found they had the cd. It was quite controversial in Durham, some people didn't like it, but revolutionary perhaps? I suppose Jesus always has been a revolutionary.
I saw your mum and dad (and Holly) yesterday, it was nice to see them. I'm now working on your red hoodie for you, finishing it. I couldn't bear the thought of it never being finished, after all that painstaking work you put into it, despite my pledge never to go near a boucle yarn! It is at once mindless and mindful knitting, each stitch needs a little attention and once I thought I'd dropped a stitch but it turned out just to be a spare squiggle from the row below. I remember all the times that happened to you, all the anxious stitch counting, the silence and the breath holding until we had ascertained whether it was a stitch or not. The yarn is so, so soft. Today I finished the sleeve increases, now I've got about 10 cm to do to get it to the length you wanted. Thank you for being so methodical, everything is written down, it's amazing.
My own projects aren't quite so brilliant. Well, the green jumper is finished, though I'm not convinced I'm that happy with it. Maybe it will grow on me? But the scarf I was making your mum, I can't decide if the yarn fits the pattern or not, and I can't find a pattern it does seem to fit or a gauge. It's all going wrong and feels wrong, I think it probably needs "time out" while I decide what to do. That marriage of the right yarn and the right pattern can be very tricky can't it?
On a totally other topic, not knitting related (yes, I can talk about other things!) I don't want you to be remembered as someone tragic or sad, because you really weren't, no, aren't (because the most important part of you still is, with Jesus). You were triumphant in your life here on earth, not I suspect in a way that many of those who go on about triumph and victory in the Christian life would recognise and understand, but in the true, real sense. You never gave in, never behaved like a victim, always tried to be as normal as possible and to make the most of everything. I know you hated it when people said how "brave" you were and all that, but it was true. You had true courage while you were here.
I miss you, not as much as the people who knew you longer I suspect, but no one else is ever going to replace you. For now our friendship is postponed, put on hold, and that hurts, but I'm glad that one day we'll both be friends again in the better place where we'll both be well. Then I'll challenge you to a race round and round the throne, in and out of the river of life, up and down the main street where all those trees are, the ones with the healing for the nations. I'm homesick and Amysick. When will my exile be over?
Hello again. I'm listening to "We must go/God of Justice" again. I never told you, but when I first heard this song at church one Sunday evening in Durham I loved it so much that I got up ridiculously early the next day and rushed to the cathedral shop to buy the cd before a doctor's appointment I had that morning. It was way out of my way, up a steep hill, but I had to have that song and it obviously wasn't on itunes music store or I didn't think of that. I must have been their first customer of the day and the sense of triumph when I found they had the cd. It was quite controversial in Durham, some people didn't like it, but revolutionary perhaps? I suppose Jesus always has been a revolutionary.
I saw your mum and dad (and Holly) yesterday, it was nice to see them. I'm now working on your red hoodie for you, finishing it. I couldn't bear the thought of it never being finished, after all that painstaking work you put into it, despite my pledge never to go near a boucle yarn! It is at once mindless and mindful knitting, each stitch needs a little attention and once I thought I'd dropped a stitch but it turned out just to be a spare squiggle from the row below. I remember all the times that happened to you, all the anxious stitch counting, the silence and the breath holding until we had ascertained whether it was a stitch or not. The yarn is so, so soft. Today I finished the sleeve increases, now I've got about 10 cm to do to get it to the length you wanted. Thank you for being so methodical, everything is written down, it's amazing.
My own projects aren't quite so brilliant. Well, the green jumper is finished, though I'm not convinced I'm that happy with it. Maybe it will grow on me? But the scarf I was making your mum, I can't decide if the yarn fits the pattern or not, and I can't find a pattern it does seem to fit or a gauge. It's all going wrong and feels wrong, I think it probably needs "time out" while I decide what to do. That marriage of the right yarn and the right pattern can be very tricky can't it?
On a totally other topic, not knitting related (yes, I can talk about other things!) I don't want you to be remembered as someone tragic or sad, because you really weren't, no, aren't (because the most important part of you still is, with Jesus). You were triumphant in your life here on earth, not I suspect in a way that many of those who go on about triumph and victory in the Christian life would recognise and understand, but in the true, real sense. You never gave in, never behaved like a victim, always tried to be as normal as possible and to make the most of everything. I know you hated it when people said how "brave" you were and all that, but it was true. You had true courage while you were here.
I miss you, not as much as the people who knew you longer I suspect, but no one else is ever going to replace you. For now our friendship is postponed, put on hold, and that hurts, but I'm glad that one day we'll both be friends again in the better place where we'll both be well. Then I'll challenge you to a race round and round the throne, in and out of the river of life, up and down the main street where all those trees are, the ones with the healing for the nations. I'm homesick and Amysick. When will my exile be over?
Monday, 27 April 2009
quarter to 1am
Yet again I'm up late unable to sleep, yet again my brain won't stop thinking alsorts of sad and nasty thoughts that I've carefully stopped myself from thinking about all day. Like how Amy is dead, I had forgotten again and then had to remember all over again, is that normal? How long will this keep happening?
Worries turn up late at night too, while you're trying to fall asleep. I've started thinking about how much worse I feel all the time, or seem to. Whenever I mention this to anyone, whether doctor or non-doctor, I get a fairly similar response along the lines that I am a neurotic hypochondriac (expressed in various different degrees of politeness and directness). But that is how I feel. Eighteen months ago I could do more than I can do now, it's fairly incontrovertable fact, I've looked through my diaries, seen what an average day and an average week was eighteen or so months ago. Back then I was cooking dinner on a regular, almost daily basis for the family, attending church at least every two weeks, going to life group and meeting up with friends at least once a week. I spent less time in bed, less time resting, I could routinely be out for two hours without exceptional payback.
Now I haven't been to church in a year, haven't made it to life group (church small/cell group) since January, can just about heat something ready made up and prepare a couple of vegetables on an occasional basis and I might make it to meet a friend once a week. If I am out for two hours I limp home and feel appalling afterwards, need a lie down or a nap at least three or four times a week just to make it through the day. I am spending far less time using a computer and far more on the sofa.
When's it going to stop? And how can I stop the tide from turning? How can I do anything when no doctor, or even friend, will listen to me? It's not in my head, honestly, despite what the DWP may say.
In terms of mental health I'm probably doing better than eighteen months ago, I still struggle but am better at coping with the struggles. That said I still get very black, very low, hopeless moods.
One of my greatest fears is the ME just getting worse and worse and worse and ending up first house bound, then bed bound and gradually continuing to worsen. I don't fear death even a tiny fraction as much as this, I would rather die than live in a living death and I would hate the burden it would place on my family.
It's bad enough that they're already having to support me right now, 24 and living at home, asking your parents to buy you shampoo, lovely. I also can't bear the thought of a future spent wrestling with the Jobcentre and DWP, constantly being harrassed with forms, interviews, pointless schemes, stress and endless bureaucratic proceedures in a huge faceless system. It becomes the anvil that breaks the camel's back. The way the disabled are treated by these systems is beyond appalling, it is the equivalent of beating people savagely because they have the temerity to become ill or disabled.
Then there's all the smashed, crushed dreams, the pain of seeing contemporaries succeed and enjoy life and being unable to join in, even from the sidelines. We could add to this loneliness, feeling like a paraiah, like you don't belong - especially in the church, where everyone is supposed to be perfect and happy. I feel invisible. When people do see me it is often in the same way that we all feel a morbid curiosity about a road accident and simply have to stare, to see bad things happen to other people and watch vicariously. There's nothing Christians like more than hearing "everything's terrible but the Lord is great" stories; it's often true, it's not God's goodness in bad times I'm casting doubt on, if only we could grasp how much we can be Jesus to one another. We do need one another, just telling someone to rely on God, then walking away, is not a solution.
It's now five past one in the morning and I do feel a bit better for having got these worries out of me and onto the page. Sorry if you're offended by anything I've said, sorry for the self-pity of this post, I'm afraid sometimes you end up in a mood where you can only say how you truly feel, not just be polite and British like usual. Sorry I'm not being as positive as you would like me to be, sometimes I feel like people want me to be positive more for their comfort than for mine. Sometimes the freedom to admit that things are pretty terrible helps a lot, the trick is not to wallow (disclaimer: I have not wallowing 'L-plates' on).
Worries turn up late at night too, while you're trying to fall asleep. I've started thinking about how much worse I feel all the time, or seem to. Whenever I mention this to anyone, whether doctor or non-doctor, I get a fairly similar response along the lines that I am a neurotic hypochondriac (expressed in various different degrees of politeness and directness). But that is how I feel. Eighteen months ago I could do more than I can do now, it's fairly incontrovertable fact, I've looked through my diaries, seen what an average day and an average week was eighteen or so months ago. Back then I was cooking dinner on a regular, almost daily basis for the family, attending church at least every two weeks, going to life group and meeting up with friends at least once a week. I spent less time in bed, less time resting, I could routinely be out for two hours without exceptional payback.
Now I haven't been to church in a year, haven't made it to life group (church small/cell group) since January, can just about heat something ready made up and prepare a couple of vegetables on an occasional basis and I might make it to meet a friend once a week. If I am out for two hours I limp home and feel appalling afterwards, need a lie down or a nap at least three or four times a week just to make it through the day. I am spending far less time using a computer and far more on the sofa.
When's it going to stop? And how can I stop the tide from turning? How can I do anything when no doctor, or even friend, will listen to me? It's not in my head, honestly, despite what the DWP may say.
In terms of mental health I'm probably doing better than eighteen months ago, I still struggle but am better at coping with the struggles. That said I still get very black, very low, hopeless moods.
One of my greatest fears is the ME just getting worse and worse and worse and ending up first house bound, then bed bound and gradually continuing to worsen. I don't fear death even a tiny fraction as much as this, I would rather die than live in a living death and I would hate the burden it would place on my family.
It's bad enough that they're already having to support me right now, 24 and living at home, asking your parents to buy you shampoo, lovely. I also can't bear the thought of a future spent wrestling with the Jobcentre and DWP, constantly being harrassed with forms, interviews, pointless schemes, stress and endless bureaucratic proceedures in a huge faceless system. It becomes the anvil that breaks the camel's back. The way the disabled are treated by these systems is beyond appalling, it is the equivalent of beating people savagely because they have the temerity to become ill or disabled.
Then there's all the smashed, crushed dreams, the pain of seeing contemporaries succeed and enjoy life and being unable to join in, even from the sidelines. We could add to this loneliness, feeling like a paraiah, like you don't belong - especially in the church, where everyone is supposed to be perfect and happy. I feel invisible. When people do see me it is often in the same way that we all feel a morbid curiosity about a road accident and simply have to stare, to see bad things happen to other people and watch vicariously. There's nothing Christians like more than hearing "everything's terrible but the Lord is great" stories; it's often true, it's not God's goodness in bad times I'm casting doubt on, if only we could grasp how much we can be Jesus to one another. We do need one another, just telling someone to rely on God, then walking away, is not a solution.
It's now five past one in the morning and I do feel a bit better for having got these worries out of me and onto the page. Sorry if you're offended by anything I've said, sorry for the self-pity of this post, I'm afraid sometimes you end up in a mood where you can only say how you truly feel, not just be polite and British like usual. Sorry I'm not being as positive as you would like me to be, sometimes I feel like people want me to be positive more for their comfort than for mine. Sometimes the freedom to admit that things are pretty terrible helps a lot, the trick is not to wallow (disclaimer: I have not wallowing 'L-plates' on).
Saturday, 25 April 2009
1am
I can't sleep, my mind is too full of sad thoughts, quiet but insistent, for sleep. Inside I feel very small and sad. I don't quite know quite what else to say.
Just read Psalm 3, I like where it says "the LORD sustains me", not least because I know it is true and so is very comforting.
Just read Psalm 3, I like where it says "the LORD sustains me", not least because I know it is true and so is very comforting.
Thursday, 23 April 2009
The News
Tonight I briefly had the news on while I got a piece of knitting to a good stage to put it down for the night. Following yesterday's budget the discussion was largely about the impact the government's spending plans would have on public services. Quite frankly, as someone who is a user of quite a few NHS services, I found it terrifying. We have been used to twelve years of New Labour lavishing money on the public services; indeed I have grown up with little else. I am painfully aware that any services helping those with chronic or non-emergency conditions are likely to be hit, such as mental health services, which are already struggling.
I was this panicked after about two minutes of the news. However, then I remembered God, remembered that as the song goes, "He's got the whole world in His hands". Our Father owns "the cattle on a thousand hillsides" Psalm 50 and is more than able to look after His children. It is so good to be able to remember this, breathe a deep sigh of relief and thank God.
Of course this does not mean that we will automatically have worldly 'prosperity', or even enough to eat, but it does mean that we will have enough grace for everything that happens. It means that everything will be ok in the end, so I can stop panicking.
"Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? 26Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27Who of you by worrying can add a single hour to his life?
28"And why do you worry about clothes? See how the lilies of the field grow. They do not labor or spin. 29Yet I tell you that not even Solomon in all his splendor was dressed like one of these. 30If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you, O you of little faith? 31So do not worry, saying, 'What shall we eat?' or 'What shall we drink?' or 'What shall we wear?' 32For the pagans run after all these things, and your heavenly Father knows that you need them. 33But seek first his kingdom and his righteousness, and all these things will be given to you as well. 34Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6
I was this panicked after about two minutes of the news. However, then I remembered God, remembered that as the song goes, "He's got the whole world in His hands". Our Father owns "the cattle on a thousand hillsides" Psalm 50 and is more than able to look after His children. It is so good to be able to remember this, breathe a deep sigh of relief and thank God.
Of course this does not mean that we will automatically have worldly 'prosperity', or even enough to eat, but it does mean that we will have enough grace for everything that happens. It means that everything will be ok in the end, so I can stop panicking.
"Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? 26Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27Who of you by worrying can add a single hour to his life?
28"And why do you worry about clothes? See how the lilies of the field grow. They do not labor or spin. 29Yet I tell you that not even Solomon in all his splendor was dressed like one of these. 30If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you, O you of little faith? 31So do not worry, saying, 'What shall we eat?' or 'What shall we drink?' or 'What shall we wear?' 32For the pagans run after all these things, and your heavenly Father knows that you need them. 33But seek first his kingdom and his righteousness, and all these things will be given to you as well. 34Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6
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