Nearly Christmas!

How time flies when you're having fun... now it's nearly Christmas and nearly two months since I last posted, I am a bad blogger. For me I've been relatively cheery, Christmas has that effect on me.

My vine yoke cardigan from the wonderful Twist Collective continues apace, well apace for me anyhow. I've just started the left front, when I say started, I've done one row, but that counts in my book. I'm still worried that it won't fit or will be too short or won't suit me or will look silly, but even if they're all the case I've learnt a lot about knitting while working on it. Short row shaping now makes some sort of sense and it's made me look at garments again from a new angle, as anything knitted from side to side would I suppose.

I'm also doing some fun Christmassy socks in appropriately coloured yarn, though I have also fallen in love with this little effort from Drops.

Next job I suppose is to decorate a bit for Christmas, I keep running out of energy. I have about four times as many things I want to do, then some more I need to do, than I have energy for, such is life. I'm just hoping I don't feel too flat after Christmas. Anyhow, I should be getting my 40 (or 50) winks, so hopefully be back here soon, toodle pip!

Still life

I've just finished Still Life by A. S. Byatt and I think I'm in shock. Towards the end of this brilliant novel she delivers such an unexpected, sudden broadside to the plot that it has left me quite literally breath-taken. In order not to spoil the book for anyone else who wishes to read it I shall say no more on the exact circumstances and events. However, yet again I am astounded at the effect a novel, a world of people conjured out of the author's life and imagination, can have on a reader, who never meets any of this people, or enters into this world, except through the author's words. The reader never learns anything of this world and its people than what the author tells them and his or her knowledge is based on what the author chooses, consciously (and sub-consciously, some would argue) to tell the readers. Yet the people live and are passed from one imagination to another, to the extent that, over my reading of this and the previous work in the canon, the world she portrays currently feels more real than the world in which I live. I long to ask her, the author, the god of this paper universe, "why???" Why like that? It is incredible the effect a mere story can have.

Wow I haven't been here for a while. The socks are still on the go - just turning the heel of the second one.

Overall I feel blank, I don't know how I am, or what I'm thinking or how I'm feeling. Healthwise we seem to have hit a dead end, apparently my fibromyalgia is just getting worse. Where does that stop?

I've just got back from church group, so I should be feeling refreshed and fired up, pity feelings don't behave in the way they're supposed to eh? We were looking at John 4-5, two healings, so discussion was on healing. Yay. Just what I want to sit through. Yes, ok, I should have been joining in, I tried, but my brain feels so fogged up right now. There was an awful lot of theorising going on, which always annoys me. I know it shouldn't, but it does, it's easy to be dismissive of "suffering" in theory, but then it's easy for me to be a spaceman in theory, it doesn't mean I'd have a clue how to drive a spaceship. (Possibly a poor analogy? I plead brain fog). I didn't really have the words to defend myself, or put my point across. Though at one point I nearly cried. Particularly when one person kept trying to edge towards the sickness = you've sinned in some way argument. Yes I know I'm a sinner, but I'm also a forgiven sinner, through putting my trust in Jesus, who died for me, for us, to pay the price for our sins.

I just knitted (it was that or fall asleep). I did manage to forget my pattern but my amazing friend Fran texted me the details of the pattern I needed, now I just need to work out why I've got 4 more stitches on one side of my gusset than the other. Well done me!

Feel a bit better for "saying" all that anyhow, once upon a time Amy and I would have discussed it afterwards and I would have felt like I had an ally. Oh well, onwards, if not actually upwards.

Neon!!!

IMG_2136
Originally uploaded by foggyknitter

So I suppose this is why Opal call line of their yarn "Neon". It totally is, so cool! These are the latest pair of socks I started making, the ones I um... didn't quite mean to start. It just sort of happened. Yarn fumes.

For those with an interest in such matters, they are Broadripple from Knitty.com

Hoping when hope is in short supply

My parents have just got back from holiday, perhaps three hours ago. In that time the quiet tranquility of our home has descended into bag laden, hot, exhausted chaos and stress. Stress is back in the building ladies and gentlemen. It radiates in waves off my mother, breaking heavily against us, catching up everything in its path into its swell.

I've already reached a point of being too stressed to sleep, within about two hours of their return and am working hard on unwinding and chilling out. I dread tomorrow, I am already eyeing up coffee shops to disappear to for the morning and already feeling guilty for considering it and leaving my dad holding the baby as it were; feels like a coward's way out. We shall see.

So, how do you keep hope alive in hard times and hard situations like this? How to survive? Mercifully I bought Matt Redman's new album on itunes earlier today (how wonderful is internet retail? No longer need energy to shop!) and the God focussed lyrics are helping so much. I increasingly feel like God is the only sanity in this mad, mad world. When I was despairing at Him just now He gently reminded me that His grace is sufficient for each day, like Corrie ten Boom's railway ticket, He gives me the grace I need to survive each day when I need it, fresh each day, like the Manna in the desert.
"The steadfast love of the LORD never ceases;
his mercies never come to an end;
they are new every morning" Lamentations 3.22-3

Living with faith and trusting God seem to be a constant struggle and fight, each day, to believe and with God to get through the day somehow. This morning's verse from "Morning and Evening" (Spurgeon) was encouraging though:
"Nevertheless, I am continually with you;
you hold my right hand.
"You guide me with your counsel,
and afterward you will receive me to glory." Psalm 73.23-4

I leave you with the chorus of the last song on the Matt Redman album which has been calming me now, the verses of which are a new setting of "My hope is built on nothing less".

"When the mountains are falling,
When the waters are rising,
I shall be safe in you.
Though the nations are quaking
Every kingdom be shaken
Still I will rest in you."

A song truly worth singing.

Frustration

Tonight I'm feeling incredibly frustrated, that wanting to hit out, lash out, stamp, throw myself on the ground and kick and scream and beat my fists against the earth in an attempt to express some of the tsunami of feeling rushing over and through and out of me. None of it is helped by the feeling that it's all such stupid small stuff that is causing this huge volume of feeling. The new "pain killer" (lyrica/pregabalin for those interested in technicalities) is a) not doing anything for the pain and b) causing massive brain fog which means I'm struggling to understand anything, especially my knitting. As I am on a very low dose this may explain part a, I am prepared to increase the dose if that is what my GP considers wise, if it means that it deals with the pain levels. However, side effects without any intended effect is truly frustrating. Admittedly as one of the listed side effects is heart failure I could be said to be getting off lightly.

According to the friendly leaflet that accompanies the pills the side effects I am experiencing are "uncommon", in the "more than 1 person in 1000" category. Aren't I the lucky one? I do have to confess to being sceptical when my GP assured me that most people don't experience any side effects; my body is rarely this co-operative, if there are side effects it generally does its best to experience at least some of them.

I am feeling particularly frustrated because this is affecting my ability to knit and as knitting is one of my main coping mechanisms this is not good, not good at all. Today I spent most of the day recovering from how awful I felt when I woke up, a fun occupation. Yet again that burning pain in my neck and all around my head and the same pain in my legs and at times arms and across my shoulders. Distraction is the best ploy for when feeling like this, because the more I think about how much it hurts the more it seems to hurt. Oh and before any of the Christian mafia leap out and ask, I did pray, I cried out to God and all the cliches. Maybe the Sims, comedy on BBC radio 7 and my cuddly hot water bottle cover Frank (and more specifically the hot water bottle inside his tummy) were God's answer? Well let's just say I'm thankful for them.

As a Christian and knowing other Christians who don't own TVs and go on about how computer games are a waste of time and knowing that we're meant to use our time wisely (the parable of the talents in Matthew 25 and Jesus talking about the harvest is plentiful but the workers few Matthew 9 are the only references that come to mind right now) I struggle with the Sims2. I enjoy playing it, no question of that, but is it the wisest use of my time? In trying to answer this I come back to the general questions of what I am supposed to be doing now, to me it feels like I'm going nowhere, though I know God has His plans and knows what He is doing. But then if playing the Sims 2 (or watching tv or knitting or any other similar past-time) helps me to cope, mentally and with managing pain, is it so bad?

Sometimes I feel like I should be spending all my time growing in knowledge of God and pursuing Him. Certainly spending more time with Him would be no bad thing, but although I try to live in His presence (work in progress - believe me!) sometimes I just need some time off from life. It comes down to trying to survive in the time between now and Jesus' return/being healed/getting better/dying. But we all need recreation and rest, that's something it took me a while to re-learn after becoming a Christian and being incredibly intense about it all. Giving myself permission to relax, to stop, has taken a long time and in the meantime I did myself a lot of damage in terms of the ME and pushing myself.

Anyhow, yet again I feel better for 'talking' this all out; I haven't got many people around to talk to right now, hence a lovely long post. Time to fill another hot water bottle (yes in August), until next time.

spontaneity

Spontaneity is not a luxury I am able to afford; everyday life needs such careful planning and allocation of energy. It is something I am generally used to and generally manage fairly well, with of course the periodic "blow out" for special occasions. Today was one such occasion, as friends I had not seen in a year suddenly asked if they could come for a visit in the evening. It was truly lovely to see them and didn't throw me out too far - I haven't any plans for what is now today (it is currently early on Monday morning) and my only plans for Sunday evening had involved tv and knitting - much like any other evening.

We had a meal out, a good laugh, a good chat, a chance to feel 'normal' for a change. But when they left things did feel very flat. It was like when you shake a snow globe and all the little pieces of snow swirl up and around in the water and gradually settle again in different places to where they had started: I feel similarly shaken up. Things and people I hadn't thought about in a while re-remembered, realising how much I miss having close friends to talk to - especially without Amy around - a window on a different world, a different way of life, a world of doing, rather than of being. A time to count your blessings and try not to be too envious of other people's.

Mercifully we spoke little about how I am and what is going on in my life, I'm bored enough of living it, let alone talking about it to everyone I meet. There's little point unless the person concerned is able to help or be constructive in some way - in sympathy, encouragement, advice or prayer. The jollity and companionship has also made me realise how much time I spend alone and how narrow and dull my life is. They commented on how lovely our house is, which is true, I do recognise that, but often it escapes my notice through repetition - I spend so long here it starts to feel like a prison. Although they did offer to have me to stay, though given the distance they live at and that their flat is up 4 flights of stairs this may be rather less than practical, though very kind nonetheless. I didn't like to expand on this, trying to get people to understand why travel exhausts and stairs hurt is hardly the most jovial of pasttimes.

Now I can't sleep, so I'm writing this. Sleep attempt no.2 coming up, here goes.

I'm feeling real low and hopeless and angry and wanting to cry and cry and cry and cry. Why can't depression ever just leave me alone? Why can't I just have a day of feeling ok? Of not sleeping weirdly and waking up hungover and staggering through the day and only waking up properly at bedtime? I had lunch with friends today and kept zoning out of the conversation, because my stupid knees hurt. Stupid knees, so much seems to be their fault. They stink (not literally, I do wash).

As you may have gathered I'm not feeling the greatest. I know I have a reason to hope. I know I have the greatest and most solid reason to hope there's ever been and deep down, somewhere in some little part of my brain that's still sane and not consumed by this choking blackness, I know this. I'm just not feeling it right now. And yes I'm praying. And I read the Bible. And I'm reaching out to Jesus.

Crying out to God the great Father and throwing myself on Him and crying on His shoulder and trying to let the anger and the storm inside to abate for long enough to let His love through. And I'm asking Him why? and when? and how long? and all those questions that plague us, plague me. Yeah I'm questioning God, but because I know He's the only one worth asking.

And so it goes on.

no answers?

I saw another doctor today, not my usual one as he, poor chap, has swine flu. There doesn't seem to be anything conclusive from the latest lot of blood tests, no rheumatoid things or autoimmune things. So why do I feel so awful? Why is my inflammation still up high? Why do my knees hurt and feel so weird?

Not knowing has been getting to me so much. Part of me is terrified, part of me desperately wants something that vindicates how awful I feel day in day out; all of me wants answers.

I know God knows what He's doing, I know all things work to good etc. (Romans 8.28) and believe me I'm trying to trust Him, so hard. I'm trying to find some peace, somewhere in the midst of all this.

It's so hard not to despair and give up. But then is fighting a good option anyway? And what am I fighting for? All of life seems like a fight to survive, like grimly hanging on by the tips of your fingers to some sort of normality. Maybe I should let go? But it's easy to do as an analogy, less easy to work out how to do that. I wish I had some wise person to talk things through with, or some guidance or someone to care, to be in the same room to talk to, who cares.

Suppose I'd better try to sleep now.

Nanny's shortbread

When I was little whenever we visited my grandmother (who we called Nanny) upon arriving we were allowed a piece of shortbread before lunch. A tremendous treat, it was an important part of each visit. Nanny's shortbread came in golden rectangles, with 3 lines along the top and lightly dusted with sugar, it was light and ever so slightly crumbly. Nanny was a superb cook and had been a professional cook, before her marriage for a family in London and later on as a much loved school cook in the days before 'Scholarest' and 'turkey twizzlers'.

One day when I was perhaps 11 or 12, I'm not entirely sure, I asked Nanny for the recipe and she dictated it to me from memory - a feat that much impressed me at the time. She called it Scotch Shortbread. Although noted in an exercise book I never got around to trying the recipe and it disappeared. From time to time I felt sad that Nanny's recipe seemed to have died with her - until - one day fairly recently I was sorting some things in the cupboard in my room and found the exercise book with the recipe still there. In order not to lose it again I typed it up and today I tried the recipe. Nanny's secret ingredient is ground rice, which gives it its crunch. Anyhow, here is the recipe for all to try.

Nanny Josie's Shortbread


-->Shortbread – Scotch (Nanny's recipe I think)

10 oz plain flour
2 oz ground rice
8 oz butter/margarine
4 oz castor sugar

1.Cream butter and sugar
2.Add ground rice and flour gradually to form a stiff dough
3.Knead and roll out
4.Shape into two round cakes or cut into shapes
5.Pinch the edges and prick the top
6.Bake in a moderate oven (325F or Gas 4 or c.160-80C)
7.Dust with sugar and mark into sections when cooled and still hot, remove from tin when cool

Brain fog and Velvet Elvis

We are back to brain fog, yet again. Today I excelled myself - yet again - by turning up to the doctor's in central London a day early. I am so annoyed with myself, all that happened was that I'd written it in the wrong day in my diary. But it's such a waste of energy. On the positive side I was at the right place, at the right time, just on the wrong day. Unfortunately the doctor wasn't in until 4pm that day either, so I couldn't be fitted in somewhere.

I'm so angry with myself about it, energy is in such short supply and to manage to waste so much achieving nothing and only having to go in again next week, it's infuriating. I used to be so sharp and bright, now look at me. I suppose it's good for humility...?

In any other business I have started reading Rob Bell's book Velvet Elvis. A thought provoking and honest look at and grapple with what it means to follow Jesus. I especially liked his footnote to read everything John Piper has ever written, when he was discussing joy in God. I can see how if you took bits of what he is saying, alone and outside the context of his overall argument, it would seem that he is "unsound" (as many Christians I know would put it). However, he emphasises throughout that it is a book of ideas that are to be wrestled with, not a solid, finished, polished argument or doctrine, to be put into a glass case and considered finished. At first I was distinctly unsure about the book, particularly as I can find his "Nooma" dvds irritating, at times they seem very rooted in modern psychological ideas and I find the presentation style hard to concentrate on. Some of this is me, a large part of it is me, but sometimes they do seem to be in place of engaging with the Bible as a group, in fact in the way that he advocates in Velvet Elvis.

So far in my reading - I think I am in the second chapter - I have particularly liked the way he has explained some of the Jewish background to the Gospels and indeed to our faith. Despite the new Pauline theology we are rather inclined to view the New Testament through somewhat Lutheran eyes - by this I mean through the eyes of the sixteenth century Reformation and all that came after it. Some of the more bewildering bits, especially of Matthew, now make a little more sense, given their context.

Rob Bell's metaphor of choice for how he wants his faith to be is a trampoline, which I like. While of course the usual caveats surrounding analogies need to be borne in mind (i.e. they are only of limited utility to help understand an idea, they are not perfect images or explanations of the idea itself), a trampoline is still a trampoline in its essence and being, whether it is flat or flexing as people come into contact with it as they bounce. A similar way of putting this (or a slightly related idea) is as Adrian Plass describes towards the end of the second volume of his Sacred Diaries, to walk the narrowest possible path ourselves while trying to reach out as wide as we can to others. In the same way our faith is still in Jesus, even if the church, the way we do things, our interpretation of some aspects of the Bible, the tools we use (e.g. new technologies) and the way in which we relate to the society in which we live change and flex with the times and the circumstances. The Bible is a living book (see Hebrews 4.12) and as such we must relate to it and struggle and wrestle with what it says (much as Jacob did with the 'angel' in Genesis 32). Though as Rob Bell qualifies we need to do so with humility and the Holy Spirit. God is (Exodus 3) and we need to explore who He is, what He has said and what this means for us and how we live our lives, (not create our own impression of god).

While I was in the bath just now I was chewing over all these ideas, feeling quite excited at the intellectual stimulus, being able to think, having something to think about. Then I remembered (or was reminded?) that actually it is the faith I have in the living God, in Jesus on the cross dying for me, in the Holy Spirit living in me, that matters, more than anything intellectual. It's that still small voice (1 Samuel 19) that helps me through each day and helps me keep some sort of grip on life, that makes sense and says that one day it's going to be more than OK, to hold on, that's what matters. Humbling too, because enjoyable and absorbing as intellectual activity is, what Jesus has done is what is truly vital, in every sense of that word.

Promises

C H Spurgeon's "Evening" meditation last night, from his "Morning and Evening" readings (this is the edition I'm using) seemed so good and so encouraging in its exposition of Jesus' awesome promise from John 6.37 that I simply had to share it. Before your eyes glaze over or you stop reading because it isn't "your thing" all I can say is give Jesus a chance - find out what he really said, who he really was, before dismissing him out of hand on a few scraps of hearsay and misconceptions. Lecture over!

"Jesus declared, "I am the bread of life. He who comes to me will never go hungry, and he who believes in me will never be thirsty. But as I told you, you have seen me and still you do not believe. All that the Father gives me will come to me, and whoever comes to me I will never drive away. For I have come down from heaven not to do my will but to do the will of him who sent me. And this is the will of him who sent me, that I shall lose none of all that he has given me, but raise them up at the last day. For my Father's will is that everyone who looks to the Son and believes in him shall have eternal life, and I will raise him up at the last day." John 6.35-40 (NIV)

Spurgeon, Evening 30th July:

“Him that cometh to me I will in no wise cast out.” KJV

John 6.37

No limit is set to the duration of this promise. It does not merely say, “I will not cast out a sinner at his first coming,” but, “I will in no wise cast out.” The original reads, “I will not, not cast out,” or “I will never, never cast out.” The text means, that Christ will not at first reject a believer; and that as he will not do it at first, so he will not to the last.

But suppose the believer sins after coming? “If any man sin we have an advocate with the Father, Jesus Christ the righteous.” But suppose that believers backslide? “I will heal their backsliding, I will love them freely: for mine anger is turned away from him.” But believers may fall under temptation! “God is faithful, who will not suffer you to be tempted above that ye are able; but will with the temptation also make a way to escape, that ye may be able to bear it.” But the believer may fall into sin as David did! Yes, but he will “Purge them with hyssop, and they shall be clean; he will wash them and they shall be whiter than snow;” “From all their iniquities will I cleanse them.”

“Once in Christ, in Christ forever, Nothing from his love can sever.”

“I give unto my sheep,” saith he, “eternal life; and they shall never perish, neither shall any man pluck them out of my hand.” What sayest thou to this, O trembling feeble mind? Is not this a precious mercy, that coming to Christ, thou dost not come to One who will treat thee well for a little while, and then send thee about thy business, but he will receive thee and make thee his bride, and thou shalt be his forever? Receive no longer the spirit of bondage again to fear, but the spirit of adoption whereby thou shalt cry, Abba, Father! Oh! the grace of these words: “I will in no wise cast out.”

Tonight we shall start with a little rant or moan, call it what you will. I am sick of healthy, able bodied, independent, if not overly wealthy, people moaning that they are bored, have nothing to do and can't think of what to do. If I were healthy and able bodied, even if I had no money, and I had an empty day, I would have so, so many things I would do. Go to the park, visit the library and learn something new, bake a cake, try out a new recipe and cook a lovely dinner, learn a new skill, go running, go for a long walk to see where I find on the way, call up a friend, write a letter or email to someone I haven't been in touch with lately, write, draw, create... so many ideas. But the difference for me is that I can't physically do it. Right now if I do pretty much any more than resting all day I'm so completely wiped and feel so appallingly awful. This isn't supposed to be a pity party. But I think having a zillion and one things you want to be doing, but can't physically do gives you a new perspective on boredom.

In the meantime I will do my best to cultivate patience with my fellow man, let's just say I'm a slow learner. Although according to an advert for a mobile phone I saw this evening, "impatience is a virtue". This slogan, along with the hedonistic lifestyle the advert advocated, made me think about the lies and false values that predominate in our society. In the Bible patience is highly commended - look at figures such as Joseph, Abraham and Job all men of faith and great patience, prepared to trust God against all the odds. Patience is also described as one of the "fruits of the Spirit" (Galations 5.22-3). I pray that as Christians we can stand out against this society and show that there is another way, show hedonism for the empty destruction that it is. I pray that we can show an attractive, positive alternative to our empty society, show Jesus' love. All too often I'm aware of how well adapted I am to this world, not to stand out, my instinct is always not to ruffle feathers or cause waves, sometimes this is a good thing - there is no point being outwardly and deliberately provocative and offensive in a negative manner. But I do want my life and my values to be very deliberately different and distinctive. I want to bring that aroma of Christ (see 2 Corinthians c. chapter 5) to those around me, to shine with His light, love like He does. Then maybe little by little you and I and Christ can change the world?

Some amazing music

Help me to want you - very much a prayer song

By your side - Tenth Avenue North - about how God is always there for us, despite us not always noticing

Wait and See - Brandon Heath - God does have a plan for our lives, despite how messed up it all seems from our perspective

Always - Building 429 Has the most amazing refrain:
"'Cuz I believe always always
Our Savior never fails
Even when all hope is gone
God knows our pain and His promise remains
He will be with you always"

Enjoy

Why should having a great evening make me feel down? How does that work? There's certainly no logic that I can recognise in it. I love being among people, in a warm, living, laughing, talking group of people. You can see why Jesus loved to sit down and eat with people, sharing, talking, conviviality, belonging, however briefly. It's very redolent of both his humanity and his divinity.

For me it's a rare occurrence. Aside from going to knitting group I've not seen anyone outside my family in a while, partly my own fault, I've not initiated any contact, partly circumstances - by the time I've finished dealing with my parents on a daily basis I don't have much "social" energy left; I simply want to be by myself and away from the world. I have a strong inner-hermit. Also lovely though it is to be invited to events such as bbqs I don't have the energy and that's that really. Not a lot you can do about it.

All this is on my mind because on Saturday two dear friends are getting married and although invited I'm not able to be there. This cuts me up inside. I know if I went I'd just be a nuisance (who wants a sick person who can't keep up and is tired all the time at their wedding?!), feel like the spectre at the feast and be so so sick both then and afterwards from overdoing it. I simply can't go and that's life, but it still hurts. My plan for dealing with this day had been to ask Amy if she wanted to do something, to be occupied instead of moping. But that can't happen for obvious reasons. It was her birthday last Sunday, made me very sad.

Re-reading some of my diaries I realised how much Amy and I saw of one another, she's mentioned almost daily in the time leading up to last Christmas, either seeing one another, or speaking to one another or something that she was doing that day.

On top of this I'm finding my mother very stressful right now, even to be around. She hasn't been managing her health well and I find that very frustrating, particularly as she then moans about the situation she's created. She has a strong vein of melodrama running through her that spills out into every circumstance at all times of day. Even things that should be simple, like making some lunch, can become long, drawn out and stressful. I need a way to cope with her. And with the anger inside me, pent up frustration, fury...

Then there's all the confusion around my own health, bizarre blood test results, inflamed joints and doctors' appointments. I don't know if anything will come of any of it, in a way it's raising my hopes that we might find something that we can do something about and in another way leaving me plagued with fears and anxieties. No matter how hard one tries they still escape to haunt you occasionally, keeping the lid on the box is next to impossible.

I'm trying to trust Jesus. I know God knows what He has planned for me. I know that in the end it will be ok. I know that He will never leave me. But from here it all looks fairly bleak, empty, pointless even. What point is there to my life right now? What am I supposed to be doing?

Been listening to "Always" by Building 429, would recommend it
The chorus goes:

"But I believe always always
Our Savior never fails
Even when all hope is gone
God knows our pain and His promise remains
He will be with you always"

I know this, I want to trust Him, I want to walk with Him, take up my cross and follow Him, but I'm struggling.

A couple of poems I wrote a while ago

“All the world’s a stage,
And all the men and women merely players”
As You Like It, Shakespeare

Waiting in the wings of the world
Standing, watching, waiting for my turn to come:
Straining eagerly to hear my cue.
Yet it’s always the bridesmaid and never the bride
As I stand in the quiet and the dust,
Waiting in the wings of the world
For my time to come.

Once I too was out there on the stage of life,
Playing my part,
Taking for granted the bright, easy companionship in the limelight of being alive.
Now I stand alone in the shadows, a part-lit, part-life.

They are so near and yet my body cannot cross the gulf.
Life is close enough to touch and yet unreachable.
Yet my day must come, when I too will slip back onto the stage
And take my part once more?

For now I am waiting in the wings of the world
Surrounded by the ghosts of what once was
And what is to be.

(07/02/07)

And another from that same month:

Another minute another stitch
In another row of many other rows.

Another hour another row
While interminable indistinguishable tinned laughter
Accompanies indiscernible mediocre actors
On their futile adventures behind the dusty glass.

Another day and it’s the same
And so they silently slip past
Until another week sneaks away
Measurable only in inches of rows of stitches.

So I’ll sit and knit while the days drone by
And watch the repeat of a repeat
Of a programme first aired in 1972
But it’s better than silence.

(17/02/07)

Air on some familliar themes

First off, today has been a rather bad day for missing Amy. Had some bad dreams last night about her funeral, only not the one that actually happened, some other one, it was all very muddled and muddling. Some days I can't believe ever had a friend like Amy, a friendship that fantastic and I think "what did I ever have to moan about then, how lucky was I? To have a friend like Amy". Though to be fair to myself things were still hard, it's just she made hard times so much more bearable, enjoyable times so much more enjoyable.

Add to this ever increasing illness and debility, how many more diagnoses is it possible for one person to have??? Again to balance this out the heat this week has, for the first time ever, made me feel better, not worse. Moving is so much easier in the warm weather. Whereas any contact with cold (e.g. being near the chiller cabinets in the supermarket, my newly washed hair drying down my back etc.) causes pain. My previous plans for moving to the north of Scotland to avoid hot weather have been shelved and I'm currently mulling over plans to move somewhere hot, preferably with a non-humid heat. This is being weighed up against the fewer opportunities for knitting living in such a place would entail. Such questions, even when deeply hypothetical, are nonetheless important to consider.

Despite feeling a little better for the past few days I am still rather down about general circumstances and all the things that happen that rub my circumstances in still further. Like two of my dear friends who are getting married in a bit over a week. Predictably I'm not well enough to go (nor for that matter do I have the money but that's academic) and as the day approaches I'm feeling fairly down about it. There are loads of people I haven't seen since university who will be at the wedding so I'm not just missing my friends' big day, but a reunion with them too. That in turn reminds me how little I see of anybody and how isolated I feel and on it goes. And yes, before you ask, I am trying not to mope! I may not be succeeding too well, but I'm trying.

Story of my life that is, trying. Trying to cope, trying not to mope (rhyme unintentional), trying to trust Jesus, trying to keep in touch with people, trying to do as much as I can whilst not overdoing it etc. etc.

In other news our fish in the pond are doing well, growing nicely, eating their food with keen appetite. I've been working on a sunhat in gorgeous, gorgeous yarn - Nikkim by Vinni's Colours, bought from Purlescence It's a teals mix, just my perfect colours. Having had a good browse in Waterstones Croydon today I can vouch for the efficacy of their air conditioning, it was lovely. And I was good and didn't buy the dozen or so books I could easily have bought. I managed to wash my hair today, this counts as a major victory and achievement!

I'll finish with a verse from the Bible that I think is rather awesome:
"Praise be to the Lord, to God our Savior,
who daily bears our burdens" Psalm 68.19

Over and out.

The little things

It's always the little things that remind you of a person. This week it was Chinese ready meals in Waitrose. I started to think about how Amy and I had discussed the coming of our Waitrose, the availability of yummy food on the way home and how I could have got Chinese meals and taken them to Amy's house (Waitrose is on the way) on the bus and we could have had fun sharing out the goodies, laughing and trying not to get yarn muddled up in the food.

So now I feel sad that we aren't going to do that. Things have reached a point (it will be 3 months this Friday since she died) when I think I'm expected to be ok and to have "got over it". Much of the time I'm fine, surprisingly fine, sometimes I worry too fine, that I never really cared enough or that I'm callous. But other times there is a tremendous feeling of loss and I realise that instead of talking to my best friend I'm talking to a computer. I also worry that I will forget Amy, I learnt so much from her. Even now at life group (church small group for those of you who don't speak Anglican) it feels strange that she's not there, that she'll never be there again.

All this gets to me most when I'm most vulnerable, generally when I'm alone and feeling lonely. I am trying not to mope, not to allow myself to wallow in the poor-mes, but it's hard, as I'm human and also because I'm feeling physically worse and worse, able to do less and less. It's not my imagination, I'm not being neurotic. I don't know where I'm going, what I'm supposed to be doing. I'm trying to cling onto Him, there doesn't feel like there's anything else left that makes any sense.

Bible Study and brain fog

Although there is much written about "suffering" and on associated topics there seems to be little on how to study the Bible while ill, exhausted and brain fogged. If the illness is of short duration, such as a cold or virus, it is not such an issue, certainly detailed Bible study can be set aside for a little and at most a few Psalms or some of the Gospels read instead. But what is one to do if the illness and exhaustion is long term or even potentially permanent? For it is inadvisable to suspend Bible study indefinitely, right now I am longing to get deeper into the Bible, like I used to before I became so indisposed. Yet I cannot think straight or concentrate and earlier today whilst trying to read the introduction to some study notes on Romans kept dozing off, not because of disinterest, but because of exhaustion.

There is little point deciding to do it later or another day when I am more awake or feeling better, because this time or day never arrives. It simply leads to Bible study being continually put off. So is there any solution to this problem?

The first one that comes to mind is prayer; asking for God's help when reading His word is always essential, but it is not just understanding and insight but also concentration, strength and energy I need to pray for.

Not being too ambitious and studying small amounts at a time can help too. As with anything I do (my memory not being too good) writing things down can help.

I would be grateful for any other suggestions, resources and strategies anyone can suggest. Getting any teaching or study at all can be a real challenge when ill, from the difficulties of making it to church or church group to struggling to focus on or remember anything of sermons I listen to and much else in between. My memory is shot away, memorising Scripture is something I would love to do, and I used to be fairly good on where things were in the Bible, but at times I struggle to remember what day of the week it is, let alone chapter and verse. It can lead to tremendous feelings of inadequacy and the feeling of being a "bad" Christian, especially when even praying is hard and I feel isolated from any kind of fellowship. None of my prayers are ever especially impressive, I don't pray for a long time in one go daily because I'm not really up to it.

Anyhow, input welcome, thank you!

Brain fog and knitting

Brain fog and knitting, as can easily be surmised, do not mix particularly well. Today I have started a project twice and have now reached an impasse of indecision whilst unable to work out what it is a) that I have done b) that I should have done and c) that I should do now. It's so insanely frustrating!!! It results in hours' worth of work coming to nothing and makes the day feel futile.

I know I should be resting more, but the truth is it is insanely boring.

In other news I am wondering what a moustache party is. My sister has got a 2.1 in her degree so I am very pleased for her and very proud of her. I am deeply confused by the weather, which apparently cannot make up its mind between bright sunshine and torrential rain. It makes getting dressed very difficult, especially when my body feels all the wrong temperature - whatever is happening my toes are usually icy cold for example, even if the rest of me is sweltering. From the tone of this post generally I suppose it is clear that I am fairly fed up with ME, fibro and all other associated illnesses, syndromes and random symptoms no one has thought to give a name to! I'm also fed up of my brain deciding to be depressed for no reason, or going off at a tangent and leaving me behind giggling madly. Being mildly manic might seem fun, but I don't find it so, I may seem happy, but I feel out of control and that is horrible.

In yet more other news I finished A S Byatt's "The Virgin in the Garden" today, a deeply interesting novel, though with a rather unsatisfactory, even peremptory ending, as though she had been forced to conclude before she was truly ready to. The characterisation, sense of place - geographically and in time, place and occasion - and manipulation of a wide cast of characters is masterful. In many novels with a large cast of protagonists I am liable to become deeply confused as to who is who (or should that be who is whom?), but A S Byatt's management of her novel solved this problem. Some of the more "scientific" or "mysterious" passages and chapters of the book were quite hard to get through at times and I do still think that the book could still function very well without the thread of the storyline concerning Marcus Potter and Lucas Simmonds. On the other hand it did resolve from an obsession into madness, although again this was somewhat peremptorially dealt with in the closing chapters of the book. Despite this I would recommend the book and am looking forward to reading its sequels.

Phew, sorry that sounds pretensious reading it back, almost a full blown book review. I do lack anyone much to discuss books with and sometimes it just comes out! I should head for bed now.

Seriously though, is it something about me? Is it me doing something wrong? Or thinking wrong or something? Is that why in the past 2-3 years my life has just been constantly hard, difficult, apparently simply one thing after another going wrong? Am I not thinking right? Not positive enough? Not the right sort of faith? Not any faith at all?!

It's such a cliche, but why? Why do I watch other people enjoy themselves and have lovely things happen while I have crap and crap and crap and crap? Why can't my knees get better instead of hurting more and more and more and feeling more and more damaged? And why will doctors never believe what you are saying or listen??? How hard is it to listen? And why always assume your patient is lying? Or neurotic? When are they going to listen?

And what do I say to people? People say who knew me at university, who seemed bored enough of me and all my problems then, people I know at the church I supposedly belong to, when I don't get better, keep saying I'm feeling worse. I'm not deliberately being ill, being difficult, being in pain, feeling like I'm getting worse, really, honestly. It's not a confidence trick, it's not me being work shy, it's not that I like being difficult, I'm not attention seeking, honestly. I don't want to be like this, I want to be well, I want to be able to fulfill dreams, follow Jesus energetically, dance, sing, jump, go on holiday, see my friends, help other people, be young.

That's one of the things that gets me, not feeling young, not doing any young people things. At 11.30 on a Saturday evening I should be out partying, not in creaking down the stairs to fill my hot water bottles and listening to radio 4. Or at a gig, or on holiday, or camping or away for the weekend or any one of a great number of more exciting possibilities.

I'm sick of this and the worst thing is none of it shows any signs of going away, if anything it's getting worse. And there aren't any answers, no magic wands, no fairy godmothers. Just blind trust in a man who lived 2000 years ago, because with Simon Peter all I can say is "Lord, to whom shall we go? You have the words of eternal life."

"Though the fig tree does not bud
and there are no grapes on the vines,
though the olive crop fails
and the fields produce no food,
though there are no sheep in the pen
and no cattle in the stalls,

"yet I will rejoice in the LORD,
I will be joyful in God my Savior." Habakkuk 3.17-8

pah.

Feeling a bit fed up with doctors, life, not being believed, not really understanding what is wrong with me, feeling left behind by life, missing out on things, not being able to work, not being able to earn money and support myself, my knees, pain, taking pills, boredom, tiredness, having to waste time taking naps, benefits, the dwp, ME and well, a lot of things. Pah.

That said I did have rather a nice (if exhausting) day today, saw my knitting group and had a lovely time knitting, laughing, admiring yarn and beautiful projects and casting on the wrong number of stitches for my knitting. (Never mind I'd only got about 2cm in).

I also finished my Ivor the Engine dvd which has left me feeling strangely bereft. What to watch now??? (Suggestions on a postcard or in the comments please).

Ah well... I'm going to try to stop worrying and being fed up out of boredom if nothing else. Plus it doesn't seem to achieve a great deal.

Talking too much

This evening at Life Group (what cell group or church small group is called at our church) I noticed myself talking far too much and at inappropriate moments - like when about to start praying etc. It felt so good finally to be among people and to have someone to talk to, that I couldn't stop! There are so many things I think or notice every day that I don't have anyone to share with, or there's just Mum and Dad here and they already know or wouldn't be interested.

This tendancy not to know when to stop talking and talking is something I have occasionally noticed in others, generally in lonely people; it hurts my pride to admit it, but I am one of them. I get horribly lonely, especially since Amy went, since a lot of my random chatter was done with her.

Why is loneliness so hard to own up to? Partly I suspect to do with perception, lonely people are "sad", "needy", regarded as a nusiance. Sometimes I think our attitude is that if you are lonely you have only yourself to blame, you should get off your backside and go find some people to be with, join a group, take up a 'hobby', change, become more interesting, make yourself popular. But the reality is more complicated, even if you make all the effort in the world and see lots of people you can still feel lonely because among all these people no one understands how you feel or what is happening. Illness can cause immense loneliness by robbing you of the ability to get out there and meet people, sometimes making seeing people intensely draining and even unbearably painful.

I'm sure I had another point to make, but I've forgotten it. - ah remembered - Loneliness isn't "cool", it is "sad", doesn't carry much "street cred". (too tired to continue editing now, will come back tomorrow) However, one thing I don't want to become is someone with really bad social skills who doesn't know when to shut her big mouth. So there's one to work on.

In other news, my sister finished her exams, go her! I've been watching Ivor the Engine, which although designed for people over twenty years younger than me, is amazing and great fun. I definitely recommend children's tv for when down, tired or bored, or just for when looking for something to do! Anyhow, bedtime, tomorrow I really need to do some thinking about appealing for benefits. I've been not thinking about it, it feels so overwhelming and I'm so tired and so sick of having to fight and defend myself.

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?

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.

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.)

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.

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

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.

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.

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.

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.

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

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.

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.

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/

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.

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!

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?

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.

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

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