Sunday, 31 May 2009

What's my age again?

I don't know if this is something that a lot of chronically sick young people feel or whether it's more me or the sort of person that I am, but inside I feel terribly old. About 80 or 90 I would guess. Part of it is physical, feeling stiff and achey, moving more slowly, thinking more slowly, part is lifestyle - my retired parents get around more than I do - spending so long in doctors' waiting rooms, listening to radio 4, knitting, taking so many pills, sitting in armchairs dozing gently.

This afternoon I was sitting in the garden in my folding canvas chair knitting while my dad gardened and I did feel so much like an old lady. Almost in a disembodied way, sitting in the early evening sunshine in my chair, while someone more active gardened, I felt like an old grandma.

It's also from feeling like I have been through so much and experienced so much and from so much time hanging out with people so much older than myself, mainly because they tend to have more time and do things more at my speed! I often feel quite cut off from people my own age, because I so rarely see anyone. Not meaning this to become another of those self-pitying "I'm so lonely" moans, but it's just how things are. I can't keep up with people my own age, not in walking down the street, not in doing things and not in the amount done per day.

But at the same time part of me periodically thinks, how did I become 24?! That's so old! It's mid-20s, not even early-20s anymore, heading towards 30, an adult. I'm not an adult. I'm not ready to be one of them yet. Confusing? You bet. And deep down inside there's still a small kid looking out at the world with big wondering eyes. Sometimes it feels like there's so many different identities in me.

So, I feel part 94, part 6, not much 24. Sometimes I get quite disorientated and can't remember what age I am, which group I belong to, can't understand why old ladies don't see me as one of them, when that's how I feel. Sometimes I see photos of what my old uni friends (or should that be people I used to know?) are getting up to and feel so sad at all the stuff I'm missing out on. I was looking forward to that first/second proper job and having fun at the weekend stage of life. Can't think about it too much or I get too down. Just have to keep trying to cope and survive and trust that someday, somehow things will get better. What else is there to do?

Friday, 29 May 2009

A few thoughts

First a poem:

Cat's Note
How often can you take a poem
and stroke it on your lap?

John Agard

Rather liked that, an amusing, intriguing little thought. The cat is of course, quite right, but then cats generally are right, they prefer it that way.

The major excitement in my life this week has been the opening of Waitrose in Croydon. For those not in the UK or not in the know this is a supermarket, generally seen as the "poshest", certainly it sells the best quality food and I am most excited and thrilled. I now have beautiful food for sale 10 minutes from my front door, I have a feeling this may make a slight dent in my finances. It is impressive how they have managed to make a formerly drab thoroughly depressing shop into a smart, classy little supermarket. It is the smallest Waitrose I've ever been in, but still stocks a good range of products. Their staff could do with a little more training, but no doubt that will come with time.

I've been a teeny bit less overwhelmingly exhausted today and no headache wooooooooo! Let's hope that continues tomorrow, I like being able to do something with my day, however small. Yet I'm starting to struggle with the heat, I'm beginning to conclude that my body simply does not have an optimum temperature, it is stuck in a permenant state of petulant disapproval and complaint, as hard to please as the Queen of Hearts in "Alice". Heigh-ho, can't get too fed up, or I'd never stop being fed up. Though sometimes that's how it feels. Yesterday I was so, so angry with feeling awful constantly, so sick of it, so fed up and yet there doesn't seem to be an end in sight, if nothing I get worse. I'm sure God knows what He's doing, it just all looks jolly odd from my perspective.

Thursday, 28 May 2009

Where to trust

Baths are wonderful places to talk to God and get things straightened out. I was reading some more of the Eric Gaudion book (see previous posts) about healing and faith and Jesus. About how it isn't how much faith you have (see Jesus and mustard seed, Matthew 13 I think), but where you put it. And it clicked. Yet again I've been trying to put my faith and my trust in people, in friends, to stop me feeling lonely and down. But only Jesus can really solve those problems, properly. Friends are great things, they are gifts from God, but they can't solve problems in the same way that Jesus can.

So I said sorry to God for not trusting Him (again) and for trying to put my trust in people and for getting down and wallowing and for failing again and again. And then I said thank you for understanding and being patient and bearing with me even though I go around in little circles making the same mistakes again and again. And thank you for helping me to understand. And I put the next few days into His care, because me worrying about it can't change anything. And now I feel a lot better, like a weight's been lifted.

Therefore today's lesson is: I am a twit, God is good. I am also a slow learner, God is patient. Thank you God. (Lesson 3, I can't count because I've already listed two there... oops.)

Wednesday, 27 May 2009

I'm feeling rather fragile and vulnerable tonight. The parents have gone to visit a cousin and it seems like all my friends are someplace else. I haven't seen any friends since Thursday night, except for seeing Sheila from next door briefly today. Well that counts I suppose.

For some reason rather than being able to enjoy the time alone I'm feeling down and isolated and lonely. Lately I've been feeling very bored and generally fed up with life in general, not the sort of bored where you have nothing to do, but the sort where you have done everything you physically can do, and some things that stretched you quite a bit and now are fed up of all of them. This feeling has not helped mood and now having three empty days stretching before me seems like a miserable prospect. All the bad things, nasty thoughts, horrible things that have happened are coming back to haunt me. Suddenly I really miss Amy again, when I thought I was coping so well.

I'm feeling pretty alone and deserted and like everyone's gone away. I'm trying desperately hard not to feel sorry for myself, really I am, it might not sound like it. But I am. And before you ask, I'm praying too, or trying to, don't have many words to pray. Unless you count these ones, as a written prayer.

I've got to be able to cope by myself - my parents are going away again for most of next month and most of the month after. Perhaps things will look better in the morning? I do hope so.

Saturday, 23 May 2009

Friendship

Today I spent most of the day feeling appalling with a headache and trying not to take the magic migraine pills, I finally gave up in the late afternoon and soon felt a million times better. However, I did get a decent rest in the earlier part of the day which was what I needed, my body was starting to shout "Oi you, slow down!". I haven't even been doing that much... and they say I'm well enough to work. I ask you *rolls eyes*

But lying in bed, staring into space, gave me time to think and today it has been about friendship. I should preface this by saying that I value friendship very highly and see it as very important. I am prepared to put real work and effort into a friendship, it's such an important human relationship. Again thinking about how downright rubbish it is when you have "friends" who are too "busy" ever to see you, or even contact you, even for so long as it takes to send a text message or email. I've gone on about this one before, but I still hate it. Jesus always managed to have time for people and didn't rush around like a madman, He knew when to stop and when to rest and when to spend time with God.

Another aspect of friendship I had a chew over today was about "seasons" for friendship and whether this is valid or just a pathetic excuse for when people can't be bothered to keep up with people. When I left Durham and was sad about all the friends I seemed to be losing a number of people said to me that "sometimes friends are given to us for a season". I think sometimes this is true, when life circumstances mean that someone moves away, or if a friend dies. However, I think there is an element to which this is also used as a "get out of jail free" card by people who can't be bothered. There are only a certain number of times you can try to get in contact with people before you start to feel like a weird stalker and certainly in lots of cases it isn't because people aren't seen university people at all, or aren't coming to the city I live in, because they are having meet ups and parties and going places.

Mind you, before I start to sound too maudlin or allow myself to wallow in the poor-me swamp, reading some more of that book by Eric Gaudion (him again!) earlier helped to put some of it in perspective. Jesus cares about me and I do have friends who care and friends who make time, including people who are very busy. But if you are reading this and you are a busy person please think about how you use your time and what your mindset is. God can manage without us working sixteen hours a day and attending 42 meetings a week. Being sick can make you feel terribly marginalised and lonely.

The expectation that you be positive at all times doesn't help, it might make you feel more comfortable if I grin and say I'm fine and crack a joke, but what if inside I'm screaming and wishing someone cared?

None of this is particularly cogent tonight, need some sleep, but maybe something to think about? If I might edit for clarity tomorrow. Toodle pip

Thursday, 21 May 2009

Some poetry

Another of my loves, though one I have neglected often, is poetry. I was listening to and reading Parliament Hill Fields by Sylvia Plath just now on the Poetry Archive

She seems to be a very exact person, in the way she speaks and the way she writes, each word is there because she means it to be, there is no carelessness their choice. She expresses some emotions I have felt since Amy's death and especially as I have recovered - that sense of guilt as you turn back towards the world, continue to live, realise that while you have been grieving the world has continued to turn. It is a poem very rooted in place but also in person and in that juxtaposition where a person and their perception of place collide and come together to form an experience.

Wednesday, 20 May 2009

A long day

Today has felt like a long day, partly because it has contained a lot of emotions, some of them almost uncontrollably strong ones. I woke feeling fairly cheery and not too bad, but unfortunately my mother hadn't. She has been in a bizarre, touchy mood all day and I have found this incredibly hard to deal with. You try to help and she bites your head off or lectures you. I've several times retreated to my room, with the door closed and the music on loud, bunkering down. Before I go on, let's get this clear, I do love my mother, I really do, deeply, I hate it when I see her hurting. I hate it even more when I see her hurting and not taking steps that could make a huge difference to this, like dealing with any mental health issues.

I wish she could understand that mental health isn't a taboo, or shouldn't be, that it isn't a sign of weakness, that it is often normal after trauma to the brain (she had a brain tumour ten years ago), that she doesn't have to hurt like she does, that it can get better. Even hurts from years and years ago, from her father, from her mother's death, can be dealt with, can be healed, can be acknowledged. Acknowledgement of problems is a huge issue in this house; she will not acknowledge the impact her illness had on her and on the rest of us, in the immediate family, the four of us, individually and as a unit. It's not her fault. I don't blame her for getting ill, none of us do, it happens, she didn't choose it. But I do feel angry that she's never allowed it to be voiced, that it was a difficult time for us all, that it has had difficult repercussions, made more difficult by their silence. I can understand not wanting to worry your children, especially when they are small, but I was part-adult - helping care for her - and treated as child - never told anything. But not being told is far more terrifying and uncertain.

Partly perhaps she doesn't want to admit her own weakness, that she, who is so proud of self-sufficiency, wasn't able to be, and isn't as able to be as she once was. No one is entirely comfortable facing their own mortality, especially when it becomes real for the first time. The echoes of her mother's illness and death must have been huge, terrifying, breaking like waves across her conciousness - she died aged 54 of a brain tumour that was discovered very suddenly. I have been aware for many years of the devastation her mother's death wrought on my mother and of how our relationship has never quite managed to recapture the closeness she enjoyed with her mother.

The word 'repression' is one you would associate the nineteenth century and with early twentieth century psychiatry, but it has resurfaced here. Nothing is acknowledged, nothing talked of openly, only ever in occasional snatched whispers, if at all. My mother's behaviour is at times erratic, she will begin things then forget them, move something then forget where she has put it, she shows signs of intense frustration with her physical limitations. It is something I understand deeply, but she never allows me to empathise. Instead any discussion of health becomes a competition - you have a doctor's appointment, she has those, lots; you ache, she aches more and more thoroughly. So I keep quiet. I say nothing. I pretend to be ok. The end result is that I find it incredibly hard to talk about how I am feeling, physically, emotionally, mentally. It is far easier with a blank page than a person, with doctors it is near impossible.

Another thing that frustrates me about her, because I love her, is the way that she rarely does anything to minimise her own suffering, it is almost as though she prefers to wallow in the feeling awful or the problem than to deal with it or face it. Often it takes very little - an ibuprofen - to help. There is an element of hopelessness in her sometimes, that there is no point taking an ibuprofen because it probably wouldn't help anyway.

There is a less pleasant side to all this, she is a master of the "poor mes", the sulk, the audible sigh, the posture, the flounce, even hysteria and tears. I have never known anyone sulk as she does, even thwarted toddlers in shopping centres could learn from her. She shares that same need to control, to dominate, to be in charge of every situation. There were seeds of this behaviour in her before she was ill - I remember particularly around map reading on holiday - but it has become far worse since. Personally I believe that some of this underlies her inability to get on with her own father, they were just too similar and vying for control. But her behaviour has deteriorated. The last counsellor I had could not see why we didn't just stand up to her, but this would be disastrous, it would push her further away, into the land where she believes that no one understands her or loves her, she would simply see it as a personal attack, no matter how tactfully or lovingly phrased. In fact I don't know what the answer is.

From all this you might be gathering that my mother is generally not a terribly pleasant person - she is, or can be, lively, with a real zest for life. She has many friends and when other people are around is a totally different person. And as I've said earlier, I do love her, very very much and I want her to be better and to be happier. She is a person who is hurting. I want my dad to have an easier time of it too, to be able to have his own opinions, his own life, his own interests. I want my sister to be less stressed by being at home, to be able to have a relationship with our parents again. I want to be less monumentally stressed by everyday living, or surviving. I want simple things like cooking a meal to stop being a huge emotional battle. But I don't know how.

Part of me thinks that I can't change my mother, or my family, all I can do is learn to live with them and control my reactions to them. But then on days like today when I've ended up in tears and exhausted by the violence of my emotions (and I do find the violence in how I feel scary at times) I feel like that can never be the answer or even a useful way of surviving. Anyhow, surely life is about more than that?

Answers on a postcard.

Saturday, 16 May 2009

I don't feel like I've got a lot to say today, certainly very little that is uplifting. Feel blank, vacant, very very tired, achey, immensely bored. Part of the boredom is having little energy to do anything and let's be honest, even the most fervant knitter can get bored sometimes. And I'm bored of never doing anything and of watching dvds and listening to music and audiobooks and watching things on iplayer and reading and pretty much everything but don't have the energy for anything else.

I had a very enjoyable coffee with a friend yesterday but failed to register how much time I was out for and so stayed out too long and am paying for it today. Sitting in a comfortable chair talking should not take so much out of me, I don't care that it does, I think that it shouldn't. By everything that is decent.

The migraine meds I've been given are like a revolution in my life though, no longer do entire days have to be sacrificed to the tyranny of headache and all the accompanying malaise and nausea. Truly amazing, though i should probably continue to pay attention to the headaches as a sign of overdoing things and not just try to plough on.

Anyhow, that's me. If anyone has any entertainment ideas for the very short of energy I would be pleased to hear about them, if there's anyone out there. I would love to cook something but last time I tried (last Monday?) I was pretty much in bed all the next day and wiped out. This illness is horrible, I wish the doctors would start taking it seriously.

Thursday, 14 May 2009

Denial (and not an Egyptian in sight)

Continuing to read the book I mentioned earlier in the week (Storm Force) and a novel I picked up from the bookshelves today, Regeneration by Pat Barker. The latter book is about the first world war, about a psychiatrist treating soldiers, among them Siegfried Sassoon and Wilfred Owen. The thing that has struck me from both is the damaging effect that trying to forget bad things and burying emotions deep down inside yourself can have. In Regeneration the soldiers who attempt to bury what they have been through only have it come back to them in nightmares and hallucinations, it is only by facing it that they escape. This idea interests me, as I do get nightmares and anxious worried dreams a lot.

Sometimes I feel like I am full of sadness and I dare not let any of it out because I don't know that if I start I will be able to stop and I don't know what would happen. So I bury everything deep inside me, sometimes allowing a little bit of grief, particularly the more "acceptable" bits, like missing Amy, out. I know I should deal with this. But it's so hard. Where to start? Likewise I know therapy - the right therapy - will help, but finding the right therapy is so hard. Most "counsellors" seem, or at least the ones I have seen, have failed to grasp my problems and seen it all as intractable, they ended up making things worse rather than better. I should probably stop using that as an "excuse" for not taking any action?

Jesus is important in this sort of healing too though, but I don't know how to let Him in. I don't know what to do. Unlike the optimistic (or delusional?) psychiatrists I have seen lately, I don't believe that straight CBT will sort everything out and make me all well again. But then these doctors won't even listen to how I am feeling or dignify my feelings with belief. They add to the hurts, they don't do anything to help. Why should I keep having to prove myself constantly?

What I'd really like is to see a Christian psychiatrist, a really good psychiatrist mind, as well as being a Christian. The Christian bit is important because right now the people I am seeing see my faith as, well probably a further sign of insanity, whereas it's an important part of my life and there are things only Jesus can heal. I would love to see a psychiatrist who cared, who listened, who knew what they were doing (i.e. not giving you pot-luck new tablets) and could help me sort out what's going on inside my head. However, so far as I can find out Christian doctors only seem to exist inside Christian paperbacks and good psychiatrists...? Is there such a thing? If anyone knows of the whereabouts of either of these ellusive creatures do let me know - yes I'm serious, deadly serious.

I don't want to go through the rest of my life heaving around towering mental and emotional pain, with a deep dark well of sadness inside me. I know that there are some things I cannot change and need to learn to live with, but the right person could help with that too? Although I can be fairly happy on the surface and drift through each day carefully distracting myself from all the 'important' stressful things going on it is so fragile and such an uneasy peace. I want to be able to stop running.

Tuesday, 12 May 2009

Legalism and positive thinking

These books by Eric Gaudion are superb, I'm now onto Storm Force, which is about the battle for the mind in suffering, something I could use some help on. One thing he mentioned towards the end of the first book ( Braving the Storm ) was legalism and attempting to lean on ourselves. Although I certainly don't believe that I can save myself by behaving better, thinking about it I have realised that I suffer from a subtler delusion, that "trying harder" will somehow make me better, be it physically, emotionally or spiritually.

It is never clear exactly what I should be trying harder at or how I should be going about this course of action. What does seem clear though is that it contains the idea of leaning on myself rather than God and it contains great potential for castigating myself for "failure". Of course we do not simply passively lean on God like a limp lettuce leaf, but He should be at the centre. I'm not entirely sure how to fix this right now, my instinctive reaction is to try harder at trusting God, a contradiction in terms in itself. However, I have prayed and will pray some more about this one.

Starting the second book today the main thing that has struck me so far, apart from the sheer amount of sense Mr (Pastor?) Gaudion has managed to get into every page, is what he has to say about "positive thinking". I have been bombarded with "think more positively" messages over the past few years, as though were I able to think more positively my problems would simply melt away. As this book says, a positive attitude can be helpful and certainly a negative attitude can be damaging, but it is not the answer, "it is simply not enough to guarantee survival in the appalling struggle with chronic pain or disability".*

I cannot express how liberating this statement is, it removes the horrible pressure to try to find something positive in even the most awful of situations, it allows room to say that sometimes life isn't a bed of roses, it allows room for the truth and for Jesus. Instead Eric Gaudion suggests letting Jesus into the darkest parts of us, praying for one another so that the Holy Spirit becomes more and more at work in our lives transforming us. And lastly:

"It is also about making a conscious decision not to fill our minds with horrible stuff that gets us down. There is enough distress and suffering around us without creating more for ourselves unnecessarily. We need to choose each day to fill our thoughts with wholesome and grateful things, so that God can get a look in."**

Does this mean in my case that it is OK not to think about the general situation I am in except when vitally necessary and to distract myself from it by a variety of means? These tend to include Jesus, knitting (hopefully in that order!), worship music, comedy, the birds and flowers in the garden, friends, creativity, writing etc. Sometimes I worry that I spend too much time running away.

Anyhow, a lot to think about. I promise that this blog will not just become the edited highlights of books by Eric Gaudion, though you might have to remind me of this promise. As you might have guessed by now I would definitely recommend these books.

*Storm Force, pg.16
** ibid. pg.17

Monday, 11 May 2009

Butterflies

Anyone who knows me well will know that I have quite a thing about butterflies, they fascinate me, they're so fragile, so beautiful, so gentle and trusting.

Therefore when I saw a post about this project on ravelry I had to share it here and urge everyone to join in - I'm going to try to be organised enough to. In short, the idea is to create a small butterfly to represent each of the 1.5m children who died in the Holocaust, they can be made of paper, string, paint, crocheted, sewn, knitted. The website linked to above has more details.

However, this project isn't just near to my heart because of being about butterflies, my grandfather and his family were Jewish and although he and his mother escaped the rest of his family died or disappeared, with the exception of a handful of cousins. This strikes me as such a lovely way to remember them, to remember the sorrows of the past in a way that also contains some hope for the future.

Anyone can make things, really, give it a try.

Sunday, 10 May 2009

Mood

Last week and the bit before it I felt like I was being physically held under water and couldn't breathe and couldn't get to the air or the light or see anything but blackness. I kept getting panic, especially around social occasions, at one point turning dizzy from panic in a cafe. Now I've been feeling better emotionally this weekend. Today I've even been fairly bouncy (for me). I'd say it was that sort of mood where you think you could fly.

And now at this immediate moment I'm fairly panicked again. I started thinking about "things", always a mistake. There's a wide range of subjects covered in "things", ME, fibro, doctors, psychiatrists, mental health, benefits, the future, Amy, should I be working? Am I lazy? Is it all in my head? Am I utterly mad?

I walk about the house singing "I'm a little tea pot", only ever the first line, I'm not sure I can remember much beyond the second line, though sometimes "tea pot" becomes some other item, "tea cup", "tea bag" etc. There are other little songs that get stuck in my head, generally childhood ones, sometimes Christmas ones. I also make noises, like "whoosh" like the sea pounding against the shore and retreating again and "neeeow", like the grand prix or an airplane. I pretend I'm an airplane or flying a lot, either zooming or gently flapping my arms like wings, almost without noticing it. Sometimes I'm a bird, sometimes a fairy or a butterfly, other times I'm Biggles. I think there's a strong element of wanting to escape in it - a bit like that bit about wings of a dove in the Psalms.

Why am I telling you all this stuff? My fingers can't stop, getting some of the thoughts that are crammed inside my brain and shoving against one another and racing around and around like a Scaletrix track.

The whole work thing worries me, my fear with it, which I think is a perfectly legitimate fear, not a paranoid or lazy one, is that I will make myself a whole lot worse if I push myself to work, like I did at university. It's not like I've not tried that strategy before and really it's not a strategy, it's a recipe for disaster. I'm sure I've said this before here.

On another note, I listened to a very interesting play (will only work for the next few days) on Radio 4 earlier called "Dos and Don'ts for the Mentally Interesting" based on a blog called The Secret Life of a Manic Depressive Lots of it rang true, especially the psychiatrist appointments and the way you go there hoping they can do something, expecting it, but they do nothing and say "come back in two/three/four months". And you walk out feeling crushed, exposed, humiliated, because you've just bared your soul (or done your best to remember what on earth's happened for the past five months and how you are) to an utter stranger who generally doesn't inspire confidence and then been sent away again. They don't ever seem to understand that I have memory problems, I can't remember every day things, I can remember the biological name for a killer whale (orcinus orca), most of the Latin declensions (puella, puella, puellam, puellae, puellae, puella etc.), the dress I got on my fifth birthday that was red velvet, my first year at school when I was three, but not what I did last Tuesday.

I really am trying to survive, not to become bitter and twisted, not to become utterly mad. But it does seem overwhelmingly hard. The latest is exploring a possible gynacological diagnosis (I'm not going to share details for the squeamish among you), which unsettles me a lot, because all that sort of "stuff" I'd rather not have there, have to acknowledge its existence. I want to be six again, life was so much simpler then. When I was about 16 the thought of being "grown up" terrified me, this has receded a bit, but I still reject that label. It's all a bit Peter Pan really.

Inside I'm just a small frightened child, sometimes I think that's alright, given what Jesus said about needing to become like little children to enter the kingdom of God (Matthew 18). I see it sometimes when I catch sight of myself in a mirror, in my eyes. For now I'm going to walk with Jesus because I don't know anywhere else to go, nowhere else is even remotely safe, nowhere else has any light and I'm lost on my own, walking with Him I might get to go home someday, which is where I want to be afterall.

Saturday, 9 May 2009

Forgiveness

I'm reading Braving the Storm by a chap called Eric Gaudion, a book about surviving suffering and illness. So far I would highly recommend it, clearly written, truthful and helpful.

The subject of forgiveness has come up, something I've been thinking about lately. He's actually defined forgiveness, which is something I hadn't thought to do. I was trying to do something without really understand what it was I was trying to do. Anyhow here is what he has written:

What is forgiveness? Here's a definition to think about. It is to treat the one who sinned as though they had not. And to choose never to remember the sin again. And as we remember how much God has forgiven us, then we will forgive others. But it's hard isn't it? Forgiveness is not natural. No; it is supernatural. Forgiveness is God's work and we need his help to be able to do it. Even if you forgive and fail, forgive and fail, you are still a forgiver.
Quite a bit to think about there. We can see at the cross just how hard it was for us to be forgiven, what Jesus suffered in order for us to be forgiven and also how important forgiveness is to God. For me forgiveness is going to mean trying and failing and falling flat on my face and getting back up and trying again and it can only happen by the grace of God and the Spirit of God in me. I don't take forgiveness lightly, it's a hard decision but ultimately it comes down to the sort of person I want to become. Do I want to become hard, bitter and twisted? Or grow in love, grace and closeness to God? Which one is going to bring me most peace?

The answer as to which I would prefer to be is a no-brainer. Facing up to the consequences of what these choices mean is somewhat harder. In a way it is not one choice, but hundreds and thousands of little choices, every time something happens that hurts me, what am I going to do? Spread grace or "ungrace" (as Philip Yancey calls it)? There is so much ungrace in this world, reverberating through families and communities for generations, I don't want to add to that. Lately when I've been at those "cross-roads" decisions that little question "grace or ungrace" has come into my mind and stopped me in my tracks. I pray that the Holy Spirit would keep helping me with these choices, because I can't do it on my own.

What Eric Gaudion has said in that quotation, about "forgive and fail, forgive and fail" is similar to faith in general, that faith is the trying to believe, not necessarily dependent on whether you always succeed 100%. If we could succeed totally by ourselves we would have no need of Jesus.

P.S. Eric Gaudion has his own blog: http://ericgaudion.blogspot.com/

Friday, 8 May 2009

owl in a sweater


owl in a sweater
Originally uploaded by doctorhectic

Likewise, all baby 'wol's need a sweater. These are so clever, wish I could be this creative and inventive!

Cute overload


octopus wearing sweater
Originally uploaded by doctorhectic

Because every octopus needs a sweater. It's a fact.

Thursday, 7 May 2009

Second blog post of the day

Is that a sign of growing addiction? I've been looking at this benefits thing and not getting very far. I've done the "easy" part of the form - i.e. my name and where I live. Now what?

I've played silly games on facebook, chatted to my sister, fiddled, prayed, knitted, tried to find help and advice on at least half a dozen different websites, had a cry, had another pray, tried to stop crying and have now given up and decided to listen to Hancock's Half Hour. Comedy is always the solution, right?

And it's damp today and my legs ache. Pah.

Pointless

You know what I was saying about moods being fickle things? Well now we're back to fed up and rather down. Just had another utterly useless psychiatrist appointment. They keep saying "psychologists will help", but there's a long waiting list. If the psychologists are the ones who can help, rather than the psychiatrists, why not get rid of some of the psychiatrists to pay for more psychologists?! Or is that just too logical?

I wish they could at least pretend they cared or engage with you at any level; instead of asking disinterested questions and scribbling on bits of paper. It's horrible seeing a doctor who doesn't care less.

Now I've got to fill in the appeal form for benefits, oh joy. I am sick to death of having to justify myself and prove I'm ill. I'm not doing this for fun, if I could work I would be doing my best to be working.

Oh I'm fed up!!! I know I said last night that some good things do happen in my life, but there's an awful lot of rubbish in between!

Wednesday, 6 May 2009

mood!

Moods are such fickle beasts. So far today I've been peaceful, happy, sad, depressed, exhausted, elated, feeling like I could fly. I have to some extent moved out of the downness of last week (caused I think as a side effect of a short course of a different drug for something else - legal and prescribed for me I hasten to add!). Hopefully I'll be able to keep out of the slough of negativity and nastyness?

To some extent today has been like waking up from an alternative reality to find that I've written a whole lot of angry stuff and put it up on the internet. That was bright. On the other hand they're very real feelings, even if they aren't ones I'm feeling just this minute and I think getting it out of my system has helped. Cathartic, a bit like being sick, "better out than in", as they say.

Today I have enjoyed fellowship, I've seen Christians, I've been able to talk about Jesus and it's been refreshing. I'm seeing another sister tomorrow, God is good, please remind me of this next time I grumble about unanswered prayers! I've been to life (cell) group twice in two weeks, how good is that?

In fact good things do happen to me, they may be few and far between, they may not out-weigh the bad things, but they are there. For my own reference, for when I next feel inclined to wallow (a foul habit I wish I were well rid of):
  • knitting group last Thursday - fun and doughnuts
  • knitting group last Saturday - fun and frappes and a lovely time on a wonderfully chilled Saturday afternoon
  • seeing Hazel today who is simply wonderful, one of the greatest adverts for Jesus I know, always makes you feel better about yourself and like there is some hope, even for a useless worm like me
  • making it to lifegroup for the second week in a row and having a good laugh and being encouraged
  • seeing Becca tomorrow, even though that hasn't happened yet
  • Alex and Katherine coming at the end of the month (ditto)
  • Anthony Trollope finally coming up with the happy ending in Barchester Towers
Where from here? Taking things one day (or hour or minute) at a time (as needed), walking with God. Writing my benefit appeal (whoopee), going to the psychiatrist (ditto, let's hope they haven't cancelled it again) and seeing Becca (this time the whoopee is sincere). And working towards forgiveness and healing of hurts and banishing prickly nastiness. Think that's enough to be getting on with?

Tuesday, 5 May 2009

Some background

Was just doing some more thinking, I have far too much time to do that, but it did occur to me that there is back history to all this hurt, so if you're sitting comfortably, then I'll begin.

As many of you will know I became a Christian up in Durham at the end of my first year and in my second year I changed church for a variety of reasons, it just seemed to be the right place for me to be. And at first it was, I was comparatively well, especially in the first term and I was on top of the world (in hindsight I reckon I could well have been manic or hypomanic during this period, but that's another matter). I belonged to my church, I made loads of friends, attended cell group and both Sunday services, I was baptised, Sunday was the highlight of my week, especially the time of singing at the beginning of the meeting. Some Sundays I would be out all day at church and with church people. I really felt part of things and like I belonged.

Then I began to get sicker. By a few weeks into the first term of my third year I could no longer make it to church and only made it to cell group because it met in my living room. In hindsight this cell group was a massive blessing and I should have been more grateful for it being there, to my housemates for being ok with it using our living room, for the fellowship I received. However, I found that now I could no longer make it to the main church meeting and to events and lunch at the pub I no longer seemed to exist. It was as though I had never been there, in the church that previously I had felt such a part of. Through that year I felt more and more let down by the church, for simply not being there, for not bothering to get in touch, for shutting me out because I was ill.

Even when I made it to meetings I felt out of place. I wasn't energetic and rejoicing and dancing and singing, I wanted to worship God, but felt cut out sitting down and feeling tired and old and not happy. It felt like you had to leave your problems outside the door and fix on your perma-grin as you stepped inside. Sometimes the leader of the church would stand up and talk about how because we followed Jesus we helped one another and visited the sick - several times he actually mentioned visiting the sick - and I wanted to stand up and say, "When did you visit me then?" I wanted to walk out, so much hurt and anger.

It was like no one wanted to have anything to do with me because I was struggling and sick, like I was a momenta mori. Some friends did their best to help, some were wonderful. But a lot of people told me to "rely on God" when I was hoping for some fellowship or support. How did they think I got (and still get) through the day? Gin?! I was learning more and more about God, I was desparately clinging to Him because it honestly felt like He was the only one left. There was such a cult of busyness at Durham and I suffered because of this. I hope my life never becomes so busy I have no time for my friends and my brothers and sisters.

Anyhow, this isn't intended as a personal attack on any person or institution, it is simply to explain some of where I'm coming from. I have, over time, begun to deal with the hurts from this period from my life. Mercifully quite a lot of it I cannot remember, others have faded.

In an ideal world I would have less time to mull all this over, but although I do my best to stay as occupied as I can manage there is still a lot of empty silent time (with the best will in the world there are limits on how long you can think about knitting!) and that no doubt accounts to some extent to how I feel and how big it all feels. I want to move on and I want to have a positive impact on us, the body of Christ, because as an idea it is brilliant.

Monday, 4 May 2009

The good shepherd

I was reading an Adrian Plass piece earlier about the verse "I am the good shepherd" (see John 10) - the piece is from "View from a Bouncy Castle" for those interested in such things. He was talking about why Jesus chose the image of "sheep" to describe us and our need to belong and concluded with how we are all part of the same church, we all belong to Jesus and one another. So however we feel about one another, we still belong to one another through Jesus.

Given how I've been feeling about the church lately (see posts ad nauseam) this struck a chord. I hate how angry I feel, how hurt, how I want to say nasty mean things to make someone else hurt too in a sort of crazy lashing out. How I feel isn't helpful, it's not edifying, it's not glorifying to God in any way, it doesn't make me any better or make my life better in any way. I want to be able to forgive, help me Lord Jesus because I can't do it on my own. I am so very sorry.

Apart from praying I don't know what else to do. The likelihood is that I'm going to continue to be ignored and treated just the same and still hurt. I'm trying the best I can to cope and deal with all this. Life does seem very bleak though. It's not bad to want some fellowship with other Christians is it?

the wrong temperature

I spent ages trying to get warm after I went to bed tonight, must have slept some, but then woke up far too hot. Pulled some cover off to try to cool down a bit, was immediately far too cold. Put the covers back on, immediately far too hot.

It's maddening. I can't sleep and my fingers are icy but the rest of me too hot and I wish my body would get to the right temperature! My brain wasn't co-operating either, on the verge of lots of nasty dreams, which is why I got up and gave up trying to sleep for a while. You'd think that with something called "Chronic Fatigue Syndrome" you'd at least be able to sleep? Just goes to show that logic is over-rated.

May as well try for some more sleep. Toodle pip

Saturday, 2 May 2009

a smiley robot and the kindness of strangers

http://www.tweenbots.com/ check it out, it's awesome and very sweet. Put a smile on my dial

Some positivity

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.

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)