A little bit of a few things

I'm far too aware that it's far, far too long that I wrote a proper post, any post at all in fact, but particularly a proper one.  I haven't even finished showing you photos of my holiday, but it's even longer since I actually wrote anything.  Part of my absence is because I've been trying to gather myself.  This year has been tough, very tough, in many different ways.  I've shared some of the depression here, and some of the physical illness, and some of the other stresses, but there's been a fair bit that I haven't shared.  Some of it I can't talk about here, not yet anyway, but I think it's enough for the moment just to say that there's more going on behind the scenes than most are aware of.

I've needed a bit of space.  My holiday helped, but there's always a certain amount of post-holiday gathering that needs to be done to get one back in to the real world.  That can be tough when the real world has been tough.

I still have a fair amount going on - difficult things/situations  to deal with - but I'm slowly beginning to feel a bit more ... more me.  I think the start of term has helped somewhat, not that I'm a student these days, but choir (Flotsam) only runs through term time, and it just feels like there's generally a bit more structure around with other things going on.  Having said that, I did sign up for a short writing course at Newcastle University again.  It's actually a course - Memoir Writing -  that I did as a module towards my MA, but the short modules are open to the public too.  After not having my brain function in the right way for 'proper writing' almost all year, I was feeling closed up, blocked, trapped, and I thought that the short course might help to open things up again.  It did.  Six weeks of prompting, encouragement, recapping on technical aspects, etc really helped, and I wrote close to 10,000 words towards my book.  After almost a year of practically zero words, that's a huge improvement.  I hope I can keep up the momentum, but finding motivation for anything is still challenging at times.

One major difference between now and a few months ago is that I am able to look forward to things.  I was trying to keep putting things in the diary before, but mustering up a sense of excited anticipation for anything I would ordinary have looked forward to wasn't happening.  I'm a way up that hole now and can enjoy the anticipation of good things ahead.  Last weekend I went over to a friend's for chocolate fondue with a few others to help R celebrate her birthday.  I had a lovely evening with lovely people, lovely fondue, and a fun game of Apples to Apples, which I'd never heard of before.

On Tuesday a couple of us went to a local fireworks display.  Twenty to thirty minutes or so of colourful explosions filling the dark November sky really does help to blow dust from the brain - that and friendship :o)

Tomorrow afternoon I'm joining some friends for a workshop in glass work.  I'm not quite sure what it's going to involve, but I'm really looking forward to it.  The anticipation of fun with others, learning something new, something creative, making something, it's all good, and I love that I can enjoy the anticipation.

There's been some health stuff going on over the past couple of weeks.  I don't really want to discuss it at the moment because I don't have firm answers yet.  I've had various blood tests, and have another - hopefully the last for a while - on Monday, after which I'm hoping my GP will give me some of those answers.  When he does I'll tell you about it, but to be honest, I've been finding it all rather overwhelming lately and haven't wanted to think about it too much while I still don't have a truly confirmed diagnosis, even though the doctor is 90% certain of his preliminary diagnosis.

Part of the process of gathering myself has been evaluating where I'm at in a slightly more general way than just the immediate present.  For quite some time I've had ideas of possibilities for myself and my life, but they all ground to a halt when I got trapped in the great pit of depression.  In reality, the possibilities never really disappeared, but I was so far down the pit that I couldn't see the possibilities over the top of the hole.  I'm climbing out of that pit now, and every so often I get a little glimpse of things that are waiting at the top.  I've caught sight of one of those possibilities, and after failing to believe it for a while, I'm now thinking that maybe it could happen - maybe I'll get out of the pit, climb over the edge, and have those possibilities become realities.  I'm digging a foothold in to the edge of this hole to give me more of a grasp to the edge.  I'm trying to climb up and eventually out, and one of the things I've done that I'm hoping will get me out is arrange a meeting.  I have a meeting next week with one of the professors in the English department at Newcastle University to informally discuss the possibilities of doing a PhD in creative writing.  There are a lot of things around it to discuss, with funding being a major issue, and my health not being insignificant either, but it's something I want to do.  I do.  I really want to do it.  You know, even ten years ago I didn't think I was intelligent enough even to do an undergraduate degree, but I got a First class honours in my BA.  I actually started my post graduate studies during my last year of my undergraduate degree so got my Post Graduate Certificate in creative writing within a month of undergrad degree ceremony.  A year later I got my MA.  I want to go further.  I want to do a PhD, and not just for the sake of it, or to prove anything to myself or anyone else.  I want to do it because I love learning, I know what my proposal would be, I know what I want to get out of it, and there might be possibilities for me once I've done it.  The earliest I could possibly start would be next September, but I know too what I would do between now and then - the book that I've been working on for a while.  The meeting next Wednesday is one huge mass of possibilities, and the outcome of it could have a huge impact on the rest of my life, even though it's informal.

This, all of this, the possibility of a PhD, the love of education, what I get from writing, what I hope I give through writing, my music, my singing, my health, my creativity, my friends, my friendships, fireworks, games, fondue, and words, these are the things that help make up me.  These are my possibilities.  These are all important in rediscovering myself.  Gathering them all together again, back in to the pot of me, takes time because they've been spilled out and scattered in dark corners of the pit, but I'm finding them again, and I'm more hopeful that before too long I'll be standing at the top of that deep hole and shouting, 'Hello folks, I'm me again.'

I am - I have been

I am a church – honest and spiritual.
I have been a shack - small and fallen to the ground.

I am an owl singing melody in the night.
I have been a mouse – shy, retreating and silent.

I am the greens of a forest on a hillside.
I have been the black of treacle in a jar.

I am an apple tree bearing fruit and in blossom.
I have been an oak – dying, all twisted and knotted.

I am a spring day, coming to life.
I have been a thunderstorm, scared of myself.

I am the iron of a girder – strong and upright.
I have been the porcelain of a cup, chipped and cracked.

I am an eagle soaring bold through the sky.
I have been a wren - tiny, hiding away.

A great night out

I had a fantastic evening on Sunday.  I went to The Sage on the Gateshead bank of the Tyne.  I love it at the The Sage - the building is magnificent, the views are wonderful, the atmosphere is welcoming, and I always feel a degree of sophistication whenever I go there, no matter what kind of concert I'm going to.  The concert I went to on Sunday was Ladysmith Black Mambazo.

Ladysmith Black Mambazo were formed back in 1960 by the same guy who leads them now - Joseph Shabalala - but they were brought to international fame in 1986 when they worked with Paul Simon on his album 'Gracelands'.  Those of you in the UK may also know their music from the old Heinz baked beans ads on telly.

I love their music and have done ever since I first heard them, but I've always had a love of traditional African music or music based upon traditional African music.  The close harmonies are fantastic, and sometimes a little unexpected; when they perform live LBM perform without instruments so musical texture is produced entirely through voice; the performances are always vibrant and energy-packed, with an awful lot of the guys kicking their height, something I haven't been able to do for years, but even Mr Shabalala can do it and he's probably about 70 years old now!

The tour Ladysmith Black Mambazo are doing at the moment is promoting their new album, 'Songs From a Zulu Farm', which they describe as 'Taking the many songs and stories of their youth and adding new lyrics.'  Of course, they did some of their older songs known by the audience as well, but much of their performance on Sunday was taken from the new album.

Just before the penultimate song they said that we might recognise what they were about to sing, and that if we did then we should join in.  No doubt about it, the audience did all recognise the song.  It was 'Old MacDonald had a farm'  :o)   Okay, as a largely British audience we didn't know it in Zulu, which is what LBM sang it in, but a chicken sounds pretty much like a chicken whichever part of the world you come from, so we duly sang along ... and some of us even did the actions.  How many concerts have you been to where a couple of thousand adults sing 'Old MacDonald had a farm' whilst flapping their arms like a chicken?  No, I didn't think it'd be many ;o)

Here are a couple more photos of LBM...

The bloke on the far right of the last photo is Muntu Valdo. 

He was the support act.  I'd never heard of him before (though isn't that often the way with support acts?), but really liked his stuff.  He was very different from Ladysmith Black Mambazo, in both style and presentation, and it took a while for him to relax and engage with the audience, but once he did he was great.  It was just him and his guitar, but he mixed sound on stage, building up layers of guitar lines and/or vocal lines so that it sounded as though he was playing with a group or with a backing CD.  Actually, the point at which he really seemed to relax was when he told us about his on-stage mixing and demonstrated it.  From that moment on he talked to us a lot more and had us joining in singing and clapping.

The whole evening was wonderful, and reminded me of how much I love to do these things; how much I love engaging with life and making it happen.  In keeping with the spirit of making life happen, I booked another concert today, this time at to see Nigel Kennedy at Newcastle City Hall.  Nigel Kennedy is very different again from Ladysmith Black Mambazo, but I have a rather eclectic taste in music and I'm greatly looking forward to this concert as well, although it's not until September.  There's a lot of life to make happen before then.

Reflections

I've been thinking about Nn's death, and whilst it's bound to have a significant impact on me I wonder if it's had more impact because it was suicide.  Death is a taboo subject in most of society, and suicide is even more so.  I'm going to talk about it here though, because not only has it raised itself in my life now, but it also had a significant presence in my life in the past. 

I suffered from disabling depression for many years.  I was drowning in an emotional sea of black treacle that sucked me down into its depths and so nearly suffocated the life out of me.  I spent a significant amount of time in my twenties in hospital with depression, and to be honest I didn't believe that I'd ever be free of it.  I wanted more than anything to be 'normal', to be happy, but the more I wanted these things the less achievable they seemed to become. 

I self-harmed.  Actually, I started to self-harm (si - self injure) when I was in sixth form, though I always hid it as much as I could, but as I got older and the si became worse it was impossible to hide from everyone, because it was too severe to patch up myself.  Very few people understand self harm and think of it as attention-seeking behaviour.  Perhaps it is for some, but not for me - I never wanted others to know, and I hid it as best as I could, but when the cuts wouldn't stop bleeding or were too severe and deep for me to manage I had no option but to go to A&E or my GP to get sewn up.  No, for me si was a huge mix of things.  To a certain extent it was about tantalising death - I didn't care much if I lived or died (and later I definitely wanted to die), and venturing that close to arteries, tendons, bones, ligaments, etc was almost like letting fate decide.  But ironically, si was often also about survival.  I hurt so much and so deeply in my soul.  The only thing that told me that I wasn't physically dead was the emotional pain I was in.  Oddly, I often didn't feel the physical hurt of cutting myself until sometime after I'd done it, and then it was almost a relief because it was a different kind of pain, a tangible pain, something I could see and was justifiable.  If I hadn't cut I would've imploded more entirely, I'm sure.  Contrary to the 'tantalising death' thing, si was also almost the opposite of death ... it let the edge off the agony and stopped me from killing myself ... a kind of letting off steam from the pressure cooker... 

I don't si now.  I haven't si-ed for 8 years.  The last time I cut/si-ed was 22nd April 2003, though of course I will always bear the scars.  There's nothing I can do about that, but I refuse to be ashamed of them, and whilst I hid the wounds at the time, I refuse to cover my scars for the sake of others now.  If people don't like what they see then they don't have to look, but I have to live with the scars everyday, and if I allow others to make me feel ashamed of them, then I'm allowing others to make me feel ashamed of myself.  There is a stigma to mental illness and depression, but there oughtn't be, and I won't, if at all possible, be ashamed because of the depression I've suffered from in the past, or the actions that depression led to.  Depression is horrendous enough without adding extra guilt into the mix.  So yes, I have the scars, and whilst I don't flaunt them (I'm not proud of them either - they're just a part of me), I don't hide them away unless I want to, and yes, there are some situations in which I will do that for myself, and sometimes for my mother as I know that she can sometimes find it difficult.

Self harm so nearly wasn't enough to keep me alive though, and for a long time I was intermittently suicidal.  For years, in fact.  It reached a head in 2002/2003, during which time I took several overdoses (very significant ones, far removed from any category of 'a cry for help'), and tried to hang myself.  That is where I feel a particular connection to Nn in his final act.  Unlike Nn, I was found just as everything was going black and disappearing into a haze somewhere beyond the sound of the familiar wheeze of constriction, this time from strangulation rather than asthma, but the same sound nonetheless.  Despite being in hospital with depression at the time, I hadn't expected to be found until after I'd succeeded, and I was distraught when I realised that I hadn't succeeded.  Nn was in a different physical situation from me and had no interruption, but I do know something of what he experienced in those last minutes of his life, and that has made me reflect a great deal on his death, his life, my life, my past depression, my subsequent fights for life through multiple asthma attacks, the whole complicated thing of 'life'.  It fills me with such huge sadness that Nn felt such despair that he chose to kill himself ... and I remember the despair I felt myself when I was suicidal.  I remind myself that this is remembered despair, not the feelings of today, and I remind myself of the fantastic moment of miraculous cure.

You may not have seen the list of 'Facts about me' near the bottom left of this page, but there's a fairly random list down there of snippets about me.  Third on the list is, 'at 4pm on Monday 5th May 2003, walking down one of the grimmest streets in Newcastle, I experienced a miracle.'  This was at the height of my suicidality.  My world had been the deepest, darkest shade of black imaginable for what seemed like forever.  I couldn't remember what it was like to live in a colourful world, or to feel that I was doing anything beyond existing.  I had no hope of anything ever changing.  At the time I was being desperately let down by the mental health services, who I believe were actually making my situation worse, and I was so nearly, so very nearly successful in my suicidal acts.  And then 4pm on Monday 5th May 2003 happened.  Nothing had happened to change my world; no event had taken place; nobody had said anything or done anything; no change had been made to medication; but suddenly everything changed.  I was walking down Westgate Hill in Newcastle, which several years earlier had been voted the 4th grimmest street in the country (what an accolade!), when I suddenly felt something I didn't recognise.  It worried me that I didn't recognise what I was feeling, and the worry caused me to glance up from my fixed focal point of the grey pavement just ahead of my feet.  The grim street was still shades of grey, but the grey buildings were topped with bright red tiles and looked over by an intensely blue sky.  My eyes hurt with the colour.  It was like regaining sight after years of darkness.  It was astounding, astonishing, amazing.  And that feeling, it was becoming more overwhelming.  What was it?  It was the feeling of being alive!  I wasn't just existing, and I wasn't in a monochrome world any more!  I was alive and living in technicolour!  I texted my mum.  I texted that for the first time in years I suddenly felt alive!  I have been alive ever since, never having returned to those depths of depression.  Sure there are low times, especially after near-death experiences, or other significant events, but they're different from depression - they're normal responses to difficult circumstances/situations/events, and they don't last.  Monday 5th May 2003 was my rebirthday, a miracle day.  I was a Christian before this wonderful event, for many years before the event, and I never stopped being a Christian throughout my depression, but I felt forgotten by God.  I felt as though I didn't matter, and questioned why I felt that I should matter as there were so many other, much more important things going on in the world, but it saddened me that I didn't matter even to God.  And then God showed me that He hadn't forgotten me, and that I was as important as anything else on His 'to do' list, and that He really is there even when we think He's busy with something else.  I don't think anyone ever expects a miracle to happen to them.  I certainly didn't.  I feel incredibly privaledged to have experienced a miracle, and for it to have been so completely life-changing ... life-giving.  I wish with all my heart that Nn could've had the same miraculous event occur in his life.  I am so thankful that God stuck his oar in when He did with me, saved me from myself, from my suicidality, and gave me colour and life again.  It's just over 8 years ago that it happened, but I remember it as clearly as if it happened today.  It still fills me with awe, I still get excited when I think about it, and I know that I am truly blessed.

Let's get positive

Okay, it's time for some positivity around here. Things have been tough for a while so it's time to spend a little while thinking about and appreciating the good things. Here goes:

+ Holidays and time away with family.
+ Baby cuddles with J, the newest member of the family who will be 12 weeks old tomorrow.
+ Nephew therapy - J, O, and D are all adorable and life-affirming.
+ The restorative qualities of the countryside.
+ Luxuriously long baths with easily controlled water temperature that's just perfect.
+ Friends. They're such special people who give so much, and are a true blessing. I am very lucky to have so many wonderful people in my life, and I thank every one of them for being the person they are.
+ A five minute break in the rain on a wet day when the sun peeps through the cloud and reminds you that the gloom will pass.
+ Cross-stitch and creativity. I love that I can be creative and relax with a little sewing. I'm working on a cross-stitch for baby J - a Mr Men height chart - and I did a little this evening before coming to bed.
+ The ability to consider various perspectives of an argument. I mention this in relation to my studies at the moment, rather than any actual argument. I'm slowly getting round to thinking about the final essay for my OU course, and while we were watching Bhaji on the Beach this evening (a set 'text' for my course) I was having interesting thoughts about it in relation to the essay.
+ Interesting people around me with whom I can have interesting conversations on a wide variety of subjects.
+ Meds that finally seem to be making a bit of an impact on the fluid retention :o) It hasn't gone yet, but progress has been made and I'm slowly deflating :oD
+ Blackbirds. I love their song. This year there's been one for the first time (or the first time that I've noticed) around my flat. There's also one that comes and sings in the courtyard outside the room I usually have in Ward 29, and it didn't let me down during this latest admission. I heard a cheery little blackbird this evening too as I went for a five minute wander with O and D before their bedtime.
+ Dongles and mobile broadband! It is by the power of such things that I come to you now, and through which I'm able to keep up with my online friends even while I'm away or when I'm in hospital.
+ Werther's Originals. A sweet that I'm not allergic to, and that I particularly enjoy, although I usually only have them when I'm in hospital as I seem to forget about them the rest of the time.
+ Good quality sleep. There's nothing quite like a restful night.

Speaking of sleep, I think it's about time that I got on with getting some. I feel better for having done my list of positive things though :o) It can really help to concentrate on the good things sometimes, and to remind oneself of what they are and how lucky one is to have them.

What are the good things in your life right now?

Things to come

I'm getting impatient now. The whole family's getting impatient now. My younger brother, C, and his wife, S, are expecting a baby. It was due on 10th February so it's now six days late. We know it's a boy, but we want to meet him and get to know him. Mind you, it'll be a little while until I do get to meet him as C and S live in Cambridgeshire, so a bit of a trek from Newcastle. Of course, I don't mind travelling, but it's not like I can just pop down the road and drop by for half an hour, and C and S can't cope with my dietary requirements (especially not with a new baby - their first child - to look after) so I need to stay in a self-catering place nearby. There is actually a lovely, small place I stayed in when I went down for C and S's wedding last spring, though of course it needs to be available when I want to go down. Anyway, I digress. The baby hasn't even made it out of his cosy nest yet ... although I do appear to have bought it rather a lot of 'Welcome to the world' presents - lots of clothes and a few other bits. Come on baby, I'm waiting to meet you and welcome you!

It's quite amazing that C is going to be a daddy. C is quite amazing. He's the person I admire most in the world. I can't go into details of his life as I haven't asked him if I can share them with my blog readers (and I don't imagine he'd be all that keen on it, if I'm honest), but he has had the most extraordinary life of anyone I've known. More extraordinary than most I've even heard of or read about. Some of it almost unbelievable. So all I will say is that he was adopted (as I told you in a recent post); has some learning difficulties; was expelled from school at one point; got back into the education system in the end and managed to get some qualifications; got some employment, but was very unsettled and flitted about somewhat; went off the rails and involved in some quite heavy stuff; got out of that, only to fall back into it again a while later; found an ingenious way out; and is now completely out of all of that, working in a responsible job, gaining more and more qualifications as he goes, lives in a picture-perfect cottage in a picture-perfect village, with his wife who's a consultant pathologist, and a son six days overdue. When he was about nine none of us really expected that he'd ever be able to live independently, let alone get to where he is today. He is a marvel! He is inspiration itself! He can be as infuriating as he ever was ;oP

On a completely different subject, I'm already thinking ahead to next academic year. I know that I still have three to four months till I finish this last course for my undergraduate degree, and that I'm only on the second module of my postgraduate certificate, but I need to be thinking about what's next. I know what I want to do next, and that's the MA in creative writing at Newcastle University. The other day I found out that if I do well enough in the PGCert then I will get automatic admission onto the MA! Hurrah! Of course, first of all I have to 'do well enough', and I'm yet to get my EMA back from my first module, so I've no idea if I'm on track for 'well enough'. Oh, and I have another EMA to do in a month or so for my current module (which I'm absolutely loving!). I'm doing the PGCert over two years so I have another module and a portfolio/dissertation to do for it next year, but each module is only six weeks long and that's not going to keep me adequately occupied over a year. I'm trying to find out if it'd be possible to top up my credits and do more towards the MA/start the MA in September, but I'm not sure how that would work or if it's possible. I'm waiting to hear back from them about this. The thing is, if I'm going to start the MA or top up postgrad credits then I'm going to have to look into funding. The MA is £4450. I've never had that much money in my bank account at any one time, let alone have a spare £4450 lying around to hand over to a university. I need to start looking at applying for grants from trusts and charities and educational councils - anything I can think of. I know there's a directory of grants etc so I'll check that out again when I can get to the library. I did so a while back and it looked like there may be a few places I could apply to, but from what I remember you have to have confirmation of a place on the specified course before you can submit an application. However, the problem with this is that when you accept a place on the course you're committing to the financial outlay, so you kind of need the money available before you accept the place. A difficult situation. Still, it's exciting to be thinking about the possibility of these things, and I'm sure that I'll work something out if it's meant to be. I suppose it comes back to 'It Couldn't be Done'. When the time comes I'll do it!

It couldn't be done

Last week was a bad week with POTS - lots of dizziness, unsteadiness, and passing out; racing heart; exhaustion; poor concentration; tinnitus; and host of other things, but these were the main ones last week. As a result of the POTS-iness I was finding study practically impossible, and although I had an extension for my End of Module Assessment (EMA) for my postgraduate certificate course in Writing for Young Adults, my new deadline was to be this coming Friday - 11th February. I couldn't see that I was going to be able to meet the deadline and thought I was probably going to have to ask for a further extension. I was reluctant to do this, though, as I still have a lot of OU study to catch up on (I'm an essay behind with them again, as of last Friday), and I can't start on that until I've done the PGCert submission. I was beginning to feel like I was chasing after myself.



Sunday came and although I wasn't great, I did find that I had more concentration than I'd had all week so I decided to make the most of it. I sat down and set to it, trying to write the first three chapters of my novel for young adults, of which I only had about 500 words. It took a long time to focus, to find direction, for my character to start to speak to me again and tell me what she was up to, what she was thinking, what she wanted, what she was feeling, and what was going on around her, but gradually she revealed herself, and bit by bit I was able to put her down onto paper. By the end of Sunday I had most of my three chapters! Monday was spent editing and then thinking about what I was going to write in the reflective commentary. This is basically where we discuss the process of writing and editing our work; how we have incorporated what we've learnt through the course into the work that we've produced and are submitting for the EMA; what feedback we've had from peers/others, and how we've responded to that feedback; and give any information that's vital for the understanding of the extract of the book we're presenting for submission. All in 1000 words. Not an easy task so it does take some contemplation. Although there were other things I wanted to do yesterday I made myself get down to work, and by the end of the day I had a little over 1000 words of commentary! To be honest I didn't spend much time editing the commentary, and perhaps it could be more concise in places, but I'm fairly happy with it, and I'm sure it's more than enough to get a pretty good pass. I went into town today, went to the university, submitted my EMA! I have surprised myself! I've also surprised several others who, like me, weren't convinced that I'd be able to meet Friday's deadline, let alone submit my piece early. Now that I've written the first three chapters I want to write the rest, but it's going to have to wait, because now I have all that OU work to catch up on, and last Thursday I started my second PGCert module - Memoir Writing. Maybe one day I'll be able to say that I'm on track and running to schedule, but my decrepitude keeps interfering with that, and it seems that whenever I'm on the cusp of achieving this goal I end up in hospital or almost in hospital or full of POTS-iness. Most frustrating. However, I've got this far so I'll press on.

There's an elderly woman from church, A, who comes to see me every few weeks. She's part of the pastoral care team and has been visiting me for a couple of years now. In name it's for my benefit; in practice it serves us both. We're quite different, not least in age as she's 81 (although extremely fit and sprightly), but A's lovely and we get on well. We chat, sometimes we have tea/coffee, we tell each other what we've been doing with ourselves, what we plan on doing, and how we feel. Basically it's friendship, and it's lovely. I was telling her today a little about my studies, how last week had been POTSy so I hadn't got anywhere with my studies, but that I'd worked my socks off since Sunday and had got my Newcastle University project done. She was not only pleased for me, but said that she didn't know how I did it. To be honest, I'm not sure how I do it ... except that it's self-belief that I can do it and the knowledge that I want to do it. I want finally to achieve my academic potential, and when I'm behind at the moment I remind myself that my OU course will be finishing in about three months time, and on 16th September I'll be graduating. Me! Me! The person who under-achieved all through school; the person who got ill with depression when at university studying nursing when she was 19/20; the person who became immobilised by depression for many years and didn't achieve anything much (or didn't feel like she did). Me, I am going to graduate! ...I just need to get to the end of this current Open University course, and the end is in sight. And the plan after that? To continue with post graduate studies at Newcastle - finish the PGCert in creative writing and go onto either an MA or MLitt. I never used to believe I could achieve anything like this, like that. These days I do. My teachers weren't ever very encouraging, and I never got the impression that they believed I'd achieve anything much, although none of them ever said this explicitly. My father didn't believe in my academic potential. So many, including myself, didn't think that it could be done. Here I am doing it.

I have a book of poetry called The Swallow, The Owl, & The Sandpiper. It's a fantastic poetry book, and is published by Finks Publishing in aid of The Sandpiper Trust. The following is taken from their website: 'The Sandpiper Trust aims to provide Scotland’s doctors and nurses, who have been highly trained in accident and emergency skills by BASICS ( The British Association of Immediate Care, Scotland), with appropriate emergency medical equipment known as the Sandpiper Bag.' That's a very small snippet of what they do, but it's a great cause and a fantastic book, which you can buy directly from their website. On page 56 of the book is a wonderful poem that my mum read out to me on the phone one day when I was in hospital and I'd come through another life-threatening asthma attack (Mum originally bought me the book as well as a copy for herself). The poem is 'It couldn't be done', by Edgar Guest:


It couldn't be done

Somebody said that it couldn't be done,
But, he with a chuckle replied
That, 'maybe it couldn't' but he would be one
Who wouldn't say no till he'd tried.

So he buckled right in with the trace of a grin
On his face. If he worried he hid it.
He started to sing as he tackled the thing
That couldn't be done, as he did it.

Somebody scoffed: 'Oh, you'll never do that;
At least no one we know has done it';
But he took off his coat and he took off his hat,
And the first thing we knew he'd begun it.

With a lift of his chin and a bit of a grin,
Without any doubting or quiddit,
He started to sing as he tackled the thing
That couldn't be done, as he did it.

There are thousands to tell you it cannot be done,
There are thousands to prophesy failure;
There are thousands to point out to you, one by one,
The dangers that wait to assail you.

But just buckle right in with a bit of a grin,
Just take off your coat and go to it;
Just start to sing as you tackle the thing
That cannot be done, and you'll do it.

- Edgar Guest

(1881-1959)

Coming together

I'm getting sorted. I've slightly decluttered the flat, not by actually getting rid of anything (God forbid! ;oP ), but by buying some more book shelves. I've had books piling up on tables, my desk, on top of other books on shelves, and doubling up on each other too. It's been annoying me for a while, and I thought I'd run out of space for new bookshelves, but I solved the problem by replacing some that I had with longer ones and giving the old ones to W. A rather wonderful friend and his oldest son came round to put the new shelves together for me, and after some sorting and re-organising I now have some spare shelf space on all my bookshelves even though all my books now have homes! Hurrah! I find that getting my physical surroundings straightened out often helps to get my head a little less cluttered too, so it's a good thing all round :oD

As you know, I was feeling a bit vulnerable and overwhelmed by the whole swine 'flu thing. Way back at the end of October/beginning of November I wrote to one of my GPs after a series of infections and admissions. I was worn out - physically, emotionally, spiritually - much as I have been recently. I wasn't asking for anything from the doc; I just needed to off-load. When I was writing it I wasn't sure if I was actually going to send the letter. I wanted to, but it was very much an emotional out-pouring, that didn't necessarily make sense in places to anyone but me ... or even me, but in the end I did send it and I'm glad that I did. I hadn't necessarily expected a reply, but when I was at the surgery picking up a prescription shortly before Christmas, the GP I'd written to popped into the reception area so I asked if she'd got my letter. She said, with a friendly smile, that she had and to make an appointment to see her sometime to talk through some of it. After having to cancel the first one I made because of being in hospital in Edinburgh, I eventually got to see Dr P last week. I knew that she wouldn't be able to do anything - to change my situation - and I wasn't expecting her to, and as I said before (and in my letter to her) I wasn't asking for anything in particular, but all the same the appointment was really helpful. I dunno, it helped by just talking through some of the mess in my head from the relentlessness of chronic illness and repeated life-threatening illness, with an opportunity to cry about it without being presented with 'there's always something in the pipeline' syndrome that negates my anxieties and upset, and really only serves to placate the person who's saying it, and they're only saying it because they can't cope with any thought of the reality of death. *Ramble over and takes a deep breath* So yes, it was helpful. Dr P listenend, and understood, and offered some advice, and talked, and was fairly aghast that the health psychologist hadn't been able/willing to offer me anything, and she gave me loads of time. Appointments are supposed to be ten minutes, but she must have given me maybe forty-five minutes. Okay, so this won't have pleased others waiting to see her, but it was the time I needed and she was happy to give it to me. She, like most of the doctors in the practice, has known me for a lot of years now and has seen me through a heck of a lot - including very severe depression through my twenties - so she knows me well. We talked a little about how things used to be and how things have changed on many different levels, and I was of course right that she can't change my situation now, but just having that time to verbally vomit was invaluable, and I came away feeling a lot more together. Dr P assured me that it had been more than okay to have written to her, and even said that I was very welcome to write again, anytime that I wanted to, or if I preferred then I could make a double appointment to see her again, whenever. She was lovely. She just gave me the time and the space that I needed, and the opportunity to cry and splurge and say, 'Sometimes it's crap and it's overwhelming and exhausting,' and even though she may not have the experience of it herself she appeared to truly understand. I feel somewhat emotionally refreshed by the appointment, and will definitely go and see her or write to her again if I feel I need to.

And then car-related things began to come together. They're a bit long and complicated to go into the nitty gritty of, but the upshot has been that despite work needing to be done on my old car after its bump, I got my new car on Monday. I love it! I'll get a photo of it sorted out at some point and put it up here, but that might not be for a day or two. In the meantime, here's a link to the website for the type of car I've got - Vauxhall New Meriva. I do like my new car very much, and it's such a relief to have all the worry about whether or not the crunch in Crotchet (the old car) would mess up timing of getting MacTavish (the new car), and all the hassle with insurance etc. No, that's all in hand, all been paid for, and all sorted out :o) The stress is gone and I can get on with enjoying MacTavish, and trying to learn my way around all the controls and buttons and different lights, which reminds me that I must get the instruction books out and have a look at them to familiarise myself with some of it.

The next thing is study. As you can probably imagine, I'm a long way behind with my studies again after my recent adventure with the flying pigs (swine 'flu). I had an assignment due in for my OU studies on 7th January, and the End of Module Assessment for my last postgrad module at Newcastle University was due in on 10th January. Obviously I missed both deadlines. My tutors have both been great, with my OU tutor telling me not to worry at all about any assignment deadlines apart from the last one and the ECA that are notoriously difficult to get extensions for from the OU; and my tutor at Newcastle just asking me to let her know when I was home so we could go from there. I contacted them last week and I have a new deadline of 11th February, which is only Friday next week, but I got the impression that it may be a fairly flexible deadline. I kind of hope so, because although I would have liked to have got a lot done during this past week I've felt rather brain-dead, and for the first little while I was concentrating on that OU assignment that had been due on 7th January. I re-read the course material related to that and continued on with the few notes I'd made for the essay when O and I were away, then I set to and got the thing written. As ever, one of the most challenging things was getting in all the info that was being ask for into the stupidly low word count. I did it as best as I could in the circumstances, sent the essay off, and a few days later had the marked one back - 82% Not bad. Not a First (with the OU a First starts at 85%), but I'm pleased with it :oD I'd been going to get down to my postgrad EMA for my last module (Writing for Young Adults) today, but I haven't been feeling too well - absolutely exhausted, thumping headache all day, sleepy tired as well as physically tired. I've glanced in the general direction of study instead, and I'll let it tick through my mind overnight so that maybe I can get a bit done tomorrow morning. Having said that, tomorrow is rather busy with pulmonary rehab in the afternoon, followed by a quick return home for a bath and change of clothes before heading out to the first class of my second postgrad modules (Memoir Writing). I'll just have to hope that I'm feeling okay at the weekend and work hard throughout.

All in all, things are coming together, I'm feeling more together (despite being a little off-colour for some reason), the new shelves have been put together, my physical surrounds feel a little more organised, all the car stuff is sorted, and I'm all together rather pleased with my new car. Things ain't bad :oD

Results!

Hurrah! I have good things to report! First off, I got the results for my latest OU course - children's literature - and I got a Distinction (a First) with 90% for the End of Course Assessment (the one I wrote when I was so desperately ill because I was refused an extension) and 86.5% for the continuous assessment. All but one of my continuous assessment essays were over 85%, but my OCA mark was brought down a little by the 78% I got for the second assignment Sooo, the Distinction I've got for this course adds to the other three I've got, and although I have one more course to do before I graduate I know now that I will come out with a First Class Honours degree, providing I pass the last course. As I'm doing things in my typical backwards way, this last course I have to do is only a foundation course so it's just pass or fail - no variation in pass levels - and as a foundation course it doesn't count towards my final class of degree, which is how come I know what degree classification I'll graduate with :oD It certainly takes the pressure off, and I can be extremely proud of myself achieving what I have, and against the odds with my health.

Continuing with the education theme, I've had my official acceptance from Newcastle University onto the Post Graduate Certificate in creative writing - an unconditional offer after a glowing reference from my latest OU tutor :oD I'm a very happy bunny and looking forward to starting my post grad studies ... even though I'll simultaneously be finishing my undergraduate degree...

Now you may remember that some time ago I asked if it'd be possible for me to have pulmonary rehab at the Freeman. Initially the physio had agreed, but then they got scared off by my regular passing out, which is understandable I suppose. So then, feeling rather despondent, I asked my GP if he could help, but he was then pushed from pillar to post and apparently ended up writing to Dr H (asthma consultant) to see what he could do. Then at the beginning of last week I had an appointment with the physio at the Falls and Syncope Service at RVI to see if they could help with the imbalance I have due to the POTS. The physio here, L, was great (as all the staff at the F&S clinic have been in all of my contact with them) and she's given me some balance exercises to do. Anyway, while I was there I spoke to L about the pulmonary rehab and the reticence of physios not used to POTS (fair enough considering the rarity of it) to take me on, and also whether she thought it'd be reasonable for me to take part in pulmonary rehab. After my assessment with her L thought pulmonary rehab would be great for me, and said that she'd discuss it with Prof N (one of my POTS consultants - for some reason I have 2 in the same department!). The next day I had a call from L saying that she'd discussed the pulmonary rehab option with Prof N and she also thought it would be of great benefit to me. Prof N had written a letter to the physios at Freeman to put forward my case, whilst acknowledging the justification for their anxieties, and L said that I should hear from the Freeman shortly, but to get back in touch with her if I hadn't heard anything in three weeks time. Well, that afternoon I received a phone call from the physio at the Freeman offering me an appointment for my pre-pulmonary rehab assessment! L must have faxed the letter through to Freeman. I'm so pleased. I can't wait to start getting some level of fitness back, and to get my confidence with it back too. I'll keep you posted with how the assessment goes and what happens in pulmonary rehab.

It's three weeks today since I had my first cataract op, and things are now much more settled with it. I'm still surprised by the brightness of colours and the fact that things have actual edges! My sight is still lopsided as I've yet to have the second eye done, and also get new glasses, but already things are so much better than before the op and it's all very exciting :oD I have one more lot of eye drops to do at midnight tonight before I can stop being ruled by the clock and having to remember to take the drops with me if I go out (ensuring too that they're kept cold as they're supposed to be refrigerated), and then I have my follow-up appointment at the hospital on Thursday next week. Two days before this I have to go to the optician to have a post-op eye test so that the surgeon has something to work on at my clinic appointment, so that's all booked in for Tuesday. I'm still having problems reading and doing any kind of close work, which is very frustrating, but I know that'll be sorted when I get new glasses after my second op. In the meantime I'm enjoying already improved sight.

Oh, the other thing is that I've had the super duper ventilation system from EnviroVent installed. The bulk of the work was done on Monday with the BBC news reporter here too doing lots of filming and interviewing in the morning - he was here for almost three hours! He came back a couple of hours later to do a bit more filming and to interview one of the directors from EnviroVent who had come up from their head office in Harrogate. He was lovely, and actually the person who had seen me on the initial news item a few weeks ago, and thus instigated the whole thing with EnviroVent. It's so very generous of them, and while only time will tell if it helps my asthma, I can already feel an improvement in the level of humidity in my flat. The installation was finished off this afternoon, with the last of the boxing-in of the piping being done and the new fan in the kitchen. The engineer was brilliant, friendly, efficient, hard working, and an all round good guy :o) Both of us were on the telly on Monday evening on both the 6.30pm programme and the 10.30pm programme, and I learnt from a friend today who had a visit from her social worker yesterday that, as a result of my appearance on the telly, the local social services are going to review their provision of services for severe asthmatics. Apparently they weren't really aware of the impact that severe asthma can have on an individual, learnt a lot from the news report I was in, and consequently think that they're not doing enough for people with asthma. I think this is an amazing result and more than I could have hoped for from the report, so I'm now more than ecstatic that I agreed to put my insecurities aside and take part in the TV publicity.

Results all round!

I spy with my little eye

It's a week since I had my first cataract op and I'm doing okay :o) I had to be at the hospital for 8.30am and was told that I was near the beginning of the list, and then they suddenly realised that I'm MRSA positive (it's been in my notes all along so I don't know why they only just realised) so they moved me to the next door ward, put me in a cubicle, and moved me to the end of the surgery list :o( Consequently I didn't go into theatre until 11.50am. I was in for about half an hour, was taken back down to the ward, told I'd be able to go after 1 to 2 hours so long as my prescription was up. My prescription got lost and I didn't leave the hospital until gone 4.30pm. It was a loooooong day.

So how was it? Um ... okay I guess. It started with some kind of test done on the ward where the nurse numbed my eyes and then put a sensor wotnotthingumyjig (that's technical terminology) onto my eye ball that supposedly detects the strength of implant lens that the surgeon should put in once he's removed the lens with the cataract. It was odd being poked in the eye and not feeling anything, though I have no complaints that I couldn't feel anything! Then the nurse took my glasses away for another check on the implant lens that would be needed (I don't know why they needed to this and the 'poking me in the eye with a sensor wotnotthingumyjig' test), and while they were having whatever check was being done she brought a sample implant lens for me to see. The slight problem was that without my glasses, and with my pupil dilated, I couldn't see a sodding thing. Add to this the fact that the lens was supposedly tiny, transparent and floating somewhere in some clear liquid, the chances of me seeing it were slim to start with. After several times of the nurse trying to point it out to me, and my explaining that I couldn't see it without my glasses, I gave up, lied, and said, 'Oh yes, there it is. It is tiny, isn't it? Amazing.' The nurse seemed satisfied, and she went and got my glasses.

The op itself was weird. By the time I'd done all the waiting around to go up to theatre I thought I was more bored than nervous, but the surgeon had to remind me to breathe at one point. LOL I guess I'm so used to not breathing so well that when I get nervous and hold my breath I don't notice, but once the surgeon asked me to 'take some deep breaths and then just breathe normally,' I heard the beep of the oxygen saturation sensor was down in the lower range of things, but gradually rising as I took some breaths. I don't know what my sats went down to, but they had a little way to come up. I was fine though, and it wasn't anything to do with my asthma; just nerves.

So anyway, the op. It started with a sticky thing being put on my eye to keep my lashes out of the way and a brace being put in it to keep it open. Then a variety of drops were put into my eye, which made me jump every time they went in, although aside from a slight sting from one of them they didn't hurt. At first I could see all the things coming at me, despite the almost blinding theatre lights, but as more of the drops and then I think an injection were put in everything went misty, and then completely white. I thought about what my dad would say and knew he'd say it was interesting, so I concentrated on that thought, took it as my mantra for the whole op, and was thankful that my total blindness was only temporary. Apart from the white I could see the odd shapes that the theatre lights were now making - something akin to butterfly shapes, but with kind of holes in them - and vague, shadowy shapes of things near/in my eye. I could feel pressure at times, but there wasn't any pain, for which I am immensly thankful! And then the surgeon got the hoover out. That's not actually what it's called, but it's basically what it is. There was a lot of swirling in my eye, which I could see and that was very odd, and a weird 'sort of sensation' that I can't really describe, a lot of water dribbling down the side of my face, and a slightly disconcerting sucking sound. After the eye hoovering the synthetic lens was implanted, which I'm told is slipped in folded up and unfolded once it's inside the eye. How amazing is that?! It was another of those 'sort of sensation' moments, but fine. All done, patched up, and doing a fine impersonation of a pirate I was then ready to be taken back to the ward, where I had a lot of frustrated attempts at using my Nintendo DS, but without actually being able to see what I was doing. I had my glasses, but I couldn't get them on with the big patch and eye guard on my right eye bo) As the anaesthetic wore off my eye got very stingy, but I wasn't offered any pain killers so I waited until I got home. The patch had to stay on for the rest of the day and that night, but I could take it off the next day, and I now only have to wear the guard at night for the next week (having already worn it at night for a week), just to make sure that I don't rub it in the night. Mornings seem to be worse for swelling and bruising, but there hasn't been toooooo much of either. At first there was a lot of black and white flickering and it kind of looked like water was boiling in my eye, but that was just everything settling down. I'm still getting some flickering in the mornings, but mostly it's settling well bo)

I have to wait until I've had the left eye done before I can get a new prescription for my glasses - should be about 6 weeks till the second op, but no date yet - so it'll be a while till I get the full benefit of all this, but already I can tell a difference. For starters, I have the central vision back in my right eye! That's amazing! Everything's brighter. Colours are so vivid and vibrant! I hadn't notice how dulled colours had become, probably because the colour was leeched out of my world slowly as the cataracts developed, but now half the world is alive in a romp of colour again bo) And even though I'm yet to have my glasses prescription sorted, things already have more defined edges. The world is made of crystal, not frosted glass! Mind you, now that my right eye is done (the worst of the two) I see how bad the left eye is and I can hardly wait until both eyes are cataract-free and my glasses sorted. At the moment the world's a bit lopsided, but it's already a lot better than it was.

One of the temporary downsides is that I'm not allowed to drive for three weeks from the op - so I have another two weeks to go - and I'm feeling rather cooped up. Until both eyes are done then it seems that I won't be able to read or do any close work bo( I'm getting bored. I want to be doing cross-stitch and reading the novel I started shortly before the op, and I also have some reading to do in preparation for my next OU course. I've ordered some magnifying sheets from an online company but they haven't arrived yet. I'm okay using the computer as I can enlarge the text on the screen, but doing anything else much is proving very difficult and frustrating. The other thing is that I'm not allowed to get water in my eye for two weeks after the op, which isn't generally a problem except for when it comes to washing my hair. I don't have a shower, just a shower hose that attaches to the bath taps, but I can't easily use that backwards. My mum and step-dad stayed with me and looked after me from the day before the op until Sunday (and a marvellous job they did too!), so Mum helped me to wash my hair (leaning backwards over the side of the bath. That is, I was leaning backwards over the side of the bath, not Mum!) while she was here. Since Sunday though I've been to the hair dressers for a wash and blow dry, and have booked in for three more between now and next Wednesday, when I should be okay to do my hair myself again. I have to say that I was surprised at how expensive it is just to have a wash and blow dry (£13), so I'm just thinking of it as post-operative pampering ... or at least trying to.

All in all, it went okay. I was nervous, and it's not an experience I'd suggest putting on your 'Things To Do When Bored' list, but it's going to be fab when I've had both eyes done ... and when I don't have to put eye drops in four times a day ... or take other anitbiotics three times a day for the chest infection that I've managed to pick up along the way. Yes, another one! Still, on the bright side (that'll be the right side, now that the cataract from that eye is gone ;oP ), the driving restriction from the eye op is making me rest up, sofa surf and generally take things easy so my lungs might have more chance of clearing the infection.

In the news

Last Thursday Asthma UK published a new report on severe asthma, and more specifically about the discrimination faced by many with severe asthma and their specific needs. The report is called Fighting for Breath and you can read it here. It's an important document because so little is understood by the general population about severe asthma, so anything that highlights the condition is a good thing. With this need for publicity in mind, Asthma UK put out a call for people with severe asthma to contact them if they'd be willing to help the cause. I responded to this call, was then asked to tell them a little more about my 'story', and consequently they phoned me, and asked if I'd be willing to speak to the media. They'd sent out a press release to various places around the country and in the north east they'd had responses of interested from BBC Look North (local TV news programme), BBC Radio Newcastle, and BBC Radio Teeside. At first I wasn't all that keen about doing TV as I'm so self-conscious about my weight, but I had to remind myself that the cause is the important thing, so I put my insecurities aside and agreed to do both the TV and radio programmes. Radio Teeside never got back to me, but I was on the 'Alfie and Charlie at Breakfast' show on BBC Radio Newcastle at 8.25am on Thursday, and on BBC Look North on the 6.30pm programme. I have to say that the Alfie and Charlie at Breakfast programme was rather early for me, so unbeknown to the listeners I did the phone interview lying in bed in my pyjamas. Tee hee hee. I think it went okay for the most part, although I kept losing my train of thought and at the end I kind of petered out, but I think I got over what I wanted to say ... mostly. Mind you, it would've been helpful if they'd kept to the questions they'd said they were going to ask me and had sent me on Wednesday. It was, however, helpful to think through all they asked in these questions, and I was able to incorporate some of my thoughts on these into answers to the questions they ended up asking me.

At 10.30am on Thursday the reporter/interviewer from BBC Look North came round. Joanne was lovely and helped me to relax and lose some of my nervousness. We started off with a chat about my asthma, how it effects me, experiences in hospital, how my daily life is effected, my need for carers, the rubbishness of the benefits system and their lack of understanding of severe asthma and my experience of that (I had an horrendous experience with the benefits system a few years ago). She then set up the camera, sat behind it and asked me some of the same questions again while the film was rolling. That was a bit weird, because my response then wasn't spontaneous so oddly wasn't as coherent as first time round. Overall it went okay though, and in the final cut they had some of what I said as voice over as they showed me around the house, because after we'd done the interview bit Joanne spent a while getting visual shots without sound. We went into my bedroom first and she filmed me opening my drawer of medicines by my bed, taking out the box of prednisolone and popping three of the tablets onto the bedside cabinet. Then she wanted a shot of me using my nebuliser, but as I'd already had my morning dose she was afraid that if I put any medication into it then I'd overdose (I thought this was quite amusing given how much salbutamol I have when I'm ill, and I was aptly having a fairly rubbish morning with my lungs too) so we didn't actually run the nebuliser - I just put the mask on and sat there looking at the machine ;o) After that, Joanne wanted some film of me using my wheelchair so I spent a while going in and out of the flat as she filmed from different angles. When she was behind me she saw the stickers I've put on the back of Taz (electric wheelchair), one of which says, 'Chaos. Panic. Disorder. My work here is done.' The other says, '0-60 in 15 minutes.' She liked them a lot, filmed them and they ended up on the telly, as did Zach (the cat) because she took a liking to him >^..^< Tee hee. When I was outside she wanted me to run my fingers through the fresh herbs and then pick some of the basil. She took a while filming this and I was a little anxious that I was going to end up with no basil plant left ;o) Thankfully there was plenty left, but I also had plenty to go with my tomatoes and mozzarella for lunch :o) So that was pretty much it, and an hour after Joanne had arrived she went as she had to have a snippet back for the lunchtime programme at 1.30pm, with the longer version ready for 6.30pm. It was awful seeing myself on telly, and watching it I couldn't really concentrate on what was being said, but I think it was okay...

While my carers were here on Thursday and I was in the bath I missed a call from a guy in the Look North news room, but he left a message and I got back to him this morning. He'd had a call from a company in Harrogate - EnviroVent - who'd seen me on the telly. They make air filter machines that are supposed to combat humidity, condensation, dampness, and ultimately dust mites, and they think that their products might help me, so they're offering to install one of their machines into my flat for free! Apparently it usually costs around £800!! This is an amazingly generous offer of them, and anything that has potential to help has to be tried, so I've jumped at the chance. Of course, EnviroVent want some publicity, which is likely foremost in their mind when offering this to me, but that's fine by me. So John from the BBC Look North news room got back in touch with EnviroVent after he'd spoken to me, and within half an hour I had a call from them to talk through it. As I live in a property owned by the council then we may have to get permission to have the machine installed, but since I don't know who to get in touch with then EnviroVent are contacting them on my behalf, and I'll get in touch with the council then if I need to, guided by EnviroVent on who I need to speak to. Apparently EnviroVent have put one of their machines to one side for me, and can fit it almost immediately when they get the go-ahead. The only delaying factor, after the engineer has been to see where would be best to have it, and any other products that might be helpful, is that Look North want to come and film the machine being installed so that they can do a follow-up item. I guess this is dependent upon it being helpful to me, but it could mean that I end up on the telly again, which isn't good for my insecurities, but is brilliant for publicity about severe asthma. Both EnviroVent and John from the news room have told me that the machines are endorsed by Asthma UK and have also had recommendation by some hospitals/NHS Trusts, so this definitely isn't a gimmick or untested. How exciting! Okay, it may not help me, but there's a chance that it might, and it's a very long time since there's been any suggestion of anything that might help.

I'll let you know what happens.

Ten

It's only ten days until my first cataract removal operation. I'm a little nervous, but I'm also excited at the prospect of being able to see properly again. I was at the garden centre with my mum earlier today (she came down from Edinburgh for the weekend) and I found it very difficult indeed to read the labels on the plants I was looking at. It's all slightly complicated by the Holmes-Adies Pupil in my left eye, because the bright sunlight was blinding me in that eye as it doesn't accommodate, but when I closed that eye to stop the pain, the dazzle, and to protect it I was left with pretty much only peripheral vision in my right eye due to the cataract. Reading doesn't happen very well with no/very little central vision.

When I went for the assessment for surgery with the ophthalmologist they (there were two of them) were very keen that I know that there's a one in two hundred chance of my vision being worse after the cataract removal op, and a one in one thousand chance of losing my vision in that eye all together. Obviously this is a consideration, a slight concern - particularly the possibility of losing vision entirely - but without the op there is absolute certainty that I will go blind, so the decision was a no-brainer. You may remember that originally the ophthalmologist had said that they'd never operate on my cataracts because of my lungs and the risk of anaesthetic complications, even with a local anaaesthetic. I know there are risks, but I had discussed the ophthalmologist's concerns with Dr H (asthma consultant) and he'd reassured me that I ought to be fine with a local anaesthetic, so I was able to pass this on to the ophthalmologists when I saw them for surgery assessment, and was also able to say that Dr H would be happy to discuss things lung-related with them if they wanted. The possibility of this, and the conversation I'd had with Dr H that I was able to tell them about seemed to be enough to reassure them at this time, and they agreed to do the surgery. Well, they agreed that the surgery can happen, but they've made sure that the consultant is going to do it in case of any complications with my asthma. I'm sure there won't be. I'm sure I'll be fine. In fact, that side of things isn't really concerning me at all ... it's the prospect of someone stabbing me in the eye with a sharp knife while I'm awake that's making me apprehensive. I just have to keep focussing on the end result - central vision returned, and most likely better sight in general :o)

I wish I knew how long I'm going to have to wait between the op a week on Wednesday and the same op on my left eye. I'm told that they're usually done in fairly quick succession - two or three weeks - but I don't know for sure. There's going to be an odd time between the ops when my sight it different from how it is now and my glasses prescription is different from what it's going to need to be. There's no point in getting new glasses in that interim period (aside from it being stupidly expensive as well as pointless for such a short time) so I'm not expecting to be able appreciate the full benefits of having the cataracts removed until after both ops have been done and I get new glasses. The other thing is that I wear varifocals and these usually take about a week to get from the opticians, so even after both ops have been done, the second eye has settled after the op, and I've been to the optician to see what my new glasses prescription will be, I've still got a bit of a wait until I can see better. I also doubt that I should drive during this time, which is going to be very restrictive. Still, I will hold on to the longer-term positives.

It all starts ten days from now. The countdown to better vision has begun :o)

Bundles of memory

On a few occasions I've mentioned that my father is ill, but I haven't gone any further. I think that maybe now is the time to tell you that he has Alzheimer's. He was diagnosed about three or four years ago and, as is the case with the disease, he's been declining with time. He's not at the very severe end of the spectrum at the moment - he's still essentially himself, but there are significant differences in him and he's certainly not the same person he has been. I think it's hardest for my step-mum who had to take early retirement in order to care for Dad, and of course with this role she is in the situation most of the time with little respite. I try to do what I can, help out when I can, but as my own health has declined it's been increasingly difficult to do this. I hate that. I want to help out. I want to make the most of Dad while there's as much of him there as there is. It's so hard to see him gradually decline, and know that one day he'll disappear.

Dad and my step-mum, B, are moving from Northumberland where they've lived in a very lovely house for several years back to Newcastle. This is partly to be closer to me, but mainly for increased access to services. Whilst the services for people with Alzheimer's seem to be very joined up in Northumberland, the area is so vast that there just aren't the quantity needed, and Dad and B are hoping that things will be better in this respect in the city. They'd been thinking about the possibility of moving just as global finances collapsed so delayed the move until now, and things have progressed very quickly. It took hardly any time for people to become interested in their house and to find a buyer, and equally little time for them to find a house they like, so all being well it'll progress smoothly, all the paperwork will go through quickly and it won't be long until they're living just a couple of miles from me, rather than the 25 or so miles north that they currently live from me.

Of course, one of the nightmare things of any house sale and move is the sorting, endless tidying, rationalising of belongings, and keeping on top of it once it's been done. They've done a huge amount, but one job that hasn't been done is to sort through a massive box of random photos that Dad inherited from his parents when they died. They're pretty much all of family of one kind or another, and mostly in black and white, and yesterday Dad and I started going through them, sorting them, trying to identify who's who and where. We've only made a tiny dint in the enormous pile protruding from the top of the box so we've a long way to go yet, but it's really interesting. Dad's never really told me all that much about his side of the family - Mum has always been much better about passing on family history - but now, as we've been sorting through the photographs little anecdotes have been coming out, and he's been talking about people in the family I'd never heard of. It's taken a bit of coaxing to get some of the stories out of him, not because of any reluctance, but because he kept forgetting what he was talking about or where he was up to, but then every so often he'd get into a bubble of memory and story would come back to him. Sometimes he'd start on one story, get distracted by a fleeting reference to something else and then start on another story. It didn't matter though. It was interesting. It's a lovely thing to be doing. While we were going through the photos we had B's digital dictaphone on so that we could record any little anecdotes. Most of the recording will be irrelevant and boring, but there'll be snippets that are well-worth hearing again and writing down as a more permanent record. One of the last photos we came across last night before we went downstairs for dinner is, we think, of my great-grandmother with my grandmother (nanny) as very young child - perhaps two or three years old. It took us a while to work it out, so we may be wrong, but I think not, and it feels suprisingly exciting.

Then there's a photo of one of Nanny's Irish cousins - one of those family members I hadn't known existed, although I did know that we had an Irish branch to the family tree. Anyway, the thing that struck me about the photo of this smart young man was how much he resembled my younger brother. This brother, C, was actually my cousin when he was born, but my aunt died when C was two years old and we adopted him. His older, half-brother was already living with his father, but he wasn't exactly what could be called a 'responsible' adult and having C grow up under his 'care' wasn't ever considered ... not that K ever showed any interest in adopting C, so far as I know. So yes, my aunt was my dad's sister, my younger brother was my cousin, and he bears a strong resemblence to this distant relative. It's amazing. I've seen a photo of C's Birth-Father, and I was struck then by the resemblence of C to him, and never really considered that C would have such strong resemblence to anyone else in the family (although he obviously has some features of closer relatives), but at first glance at the photo we came across of my grandmother's cousin (what relative is that to me??? I can never work these things out) I immediately saw C's smile. Weird, isn't it?

I really enjoyed going through those photos, and I'm looking forward to doing more. I'm gathering info about my own family history. I'm discovering the existence of people I never knew existed. I'm seeing resemblences where I never expected to see any. I'm finding out about my dad and his life, and soaking it all up before the memories disappear along with his brain function.

Good things

While I'm having a rough time physically at the moment I think I need to spend a bit of time thinking about the good things and appreciating the positives. It can be all too easy to get trapped in the misery cycle, and sometimes making space to think about what's good in life is enough of a pick up to keep motivated, so here's a little list of some of the good things in life:

• Friends. They are a wonderful gift and friendship is one of the most valuable things you can be given. I'm very lucky to have the amazing friends that I do.
• My slanket. This is my new favourite possession and I now firmly believe that every household should have at least one.
• The cat - Zach. He's completely nuts so keeps me entertained; is very cuddley (when he's not eating me!); and is great company.
• A long lazy bath and freshly pumiced feet. Ah, the little things...
• Heinz baked beans - the tasty, nutritious, Becky-friendly standby when cooking is too much to think about (I had them for tea tonight).
• My nephews. The oldest one is three today and I spoke to him on the phone this evening. Both he and his brother (who's fourteen months old) never fail to make me smile :o)
• Books. They feel good; they smell good; and they're easy to get lost in.
• BBC Radio 4. It's an education. It's funny. It's interesting. It's dramatic. It's entertaining. Sometimes it can even be a little boring :oO but I listen to it anyway and often learn something.
• Pyjamas - sheer comfort.
• Music. I love listening to it and love making it. I managed to get to Christmas Choir practise last night and it was fantastic to be able to sing again for a bit. I was completely wiped out afterwards and today, but it was worth it.
• Wednesday mornings when my carer comes. Once I've let her in the flat she usually sends me back to bed either to sleep or to listen to the radio and drink the cup of coffee that she always makes me as soon as she arrives.
• Good neighbours. For many years I had horrendous neighbours in the flat above, but for the past three years or so I've had a lovely couple living above me, who keep an eye on me and always ask if there's anything they can do to help.
• Creativity. I love it that I can do arts and crafts, and get pleasure from making things for people. I made my nephew's birthday card the other night and was really pleased with the result, but the real joy was that he liked it too and made a point of thanking me for it (and 'all the lovely birthday parcels') on the phone this evening :o)
• An active mind. Sometimes when the body isn't up to much it can be frustrating to have such an active mind as I want to be doing all the stuff that I'm thinking about, but mostly it's good. It keeps me occupied. It keeps me interested in life, and life beyond myself. It gives me the ability to read and enjoy all sorts of things.
• Comedy. I love a good laugh. I should sort out another trip to the Hyena Comedy Cafe with friends. It's not exactly cheap, but it's good fun ... maybe something to do in the long, dark days after New Year to help us giggle our way towards spring.
• Better deals on utilities. I had a call from Virgin Mobile yesterday offering me a better package on my mobile phone than the one I already have with them - more minutes, more free texts, less money, and 3 months completely free as I was happy to keep the handset I've got. Hurrah!
• Hot chocolate. Mmmmmmmmmmmm.

Ya see? Life's okay really. Sure, my body's not working very well at the moment, but all in all I do okay, with the best of people and the best of things - both big and small - that keep me ticking over. I have a heck of a lot more than a lot of people in the world, and for that I'm grateful.

What are you thankful for in your life? Maybe we can remind each other of some of the things that we take for granted but really ought to take more notice of.

Taking action

After my latest bad attack I decided that I need to come up with a plan of action for future bad attacks that quickly spiral out of control and make my brain addled. I think I mentioned this before. I wrote a letter to my GP explaining how quickly I deteriorated this time and how rapidly I lost the ability to make sensible decisions (telling him the random things I'd put in my bag when I staggered to the surgery just before being admitted to hospital). I explained about some of the difficulties I've had in A&E and RVI in the past in terms of treatment and incredulity at some of my allergies, and anxieties about needing an advocate with me when I can't speak due to breathlessness. I explained how I know that 'can't breathe' should equal 'dial 999', but that in my state of hypoxia/hypercapnia I wasn't able to make this judgement and that the previous difficulties I've had in A&E etc fed into this inability to make sensible decisions. I asked if it'd be possible to think through this problem together, because whenever I try to think about it on my own I get in a tangled twist, which I is probably the stress of the attacks getting to me and I get into the same state of mind as when I'm in the attacks. However, I wasn't 100% sure that the doc would think this was within his remit, or if he might think I should be able to think about it on my own, so I was clear that I didn't want to take an appointment slot unnecessarily if he didn't think it appropriate, but that I would appreciate some feedback. I dropped the letter off at the surgery on Tuesday last week (the day after I got out of hospital) and received a reply through the post on Friday saying that he did think it would be appropriate to discuss these issues together, although he wasn't completely sure what the answer was as some of the difficulty seems to be my reluctance to go anywhere but ward 29 at Freeman, which of course isn't always possible. I had an appointment with the GP on Monday morning.

The appointment was incredibly useful, and I also think it was helpful to have written the letter and 'given' it to him in advance as it meant that he'd had a chance to think about it and discuss it with some of his colleagues too. It was useful too to have explained about the hypoxic/hypercapnic confusion, which he described as my 'being away with the fairies' ;oP and one of the ideas he suggested was coming up with some kind of repeatable mental challenge that friends can do with me (through text if necessary) to assess my level of 'away with fairies-ness'. There's one used by medics which involves repeated subtractions of seven from a hundred, and you have to get something like six or seven in a row right or you're deemed confused. Provisionally this test will do, but I'm trying to come up with something else as maths isn't my strong point at the best of times ;oP It's a starting point though and it might help. The point is that if I can't 'pass' the mental challenge - whatever it turns out to be - then the person doing it can take charge of the situation and make the decision for me to get help/call an ambulance.

The second thing the doc suggested was to see if the ward/hospital could supply me with a pulse oximeter so that I have a clear clinical marker too. The problem with this is that sometimes I can be hypercapnic yet still have acceptable oxygen levels (which is a bit odd, but then this is me ;oP ) so it may not be as useful as it first seems, and could potentially give a false sense of security. The other difficulty I wonder about is funding. Even the cheapest pulse oximeters are £200-300, and I know that the ward have had to fund buying most of the ones they have themselves, so I don't think it likely that they'd be able to supply me with one. However, my GP is going to write to my consultant - Dr H - so he may put the pulse oximeter suggestion to him in that.

The primary reason my GP is going to write to Dr H though is for something of huge potential use - arranging a meeting for me with one of the A&E consultants. Now I don't yet know if this meeting would be just by myself with the A&E doc or if Dr H or my GP would be there as well, but the purpose of the meeting would be to discuss past difficulties I've had in the department and how these have eroded some of my trust in some of the medics; to discuss my treatment protocol and get it put onto the computer system if possible; and to ensure that something similar happens regarding my allergies, highlighting that I can't have and should never be given magnesium sulphate (often given to people in A&E having a severe asthma attack). I expect it to take quite some time to organise this kind of meeting, but I think it has potential to be extremely useful and could help alleviate some of my anxieties. I made it clear both in my letter and in my GP appointment that all in A&E were fantastic this time, but all the same, because of some previous experiences, I never assume that it's always going to be this way, so I'm sure the meeting will be helpful when it happens.

I've mentioned before that I carry with me a laminated copy of a letter from Dr H addressed to any A&E doctor 'strongly suggesting' the course of treatment to take when I present with my asthma. I also carry a letter from Ward 29's Charge Nurse saying that I'm usually under their care and they're always happy to take me as soon as I don't need ITU/HDU care, but can they please be informed of my admission as soon as possible so that arrangements can get underway, especially as I'm MRSA positive so need a side room. Anyway, I'd mentioned both these letters in my own to the GP, not really realising that they weren't aware of them, and in my GP appointment he asked if he could see them. Not a problem at all, and he was impressed with them and their usefulness. He asked if they could take copies of them, and scan them into my records, not just because they're useful for them to have, but also so that they can print them off if ever they need to give them to paramedics etc. It wasn't something I'd thought of, but thought it a good idea.

We talked a little about my most recent attack and presentation at the surgery. I said how I was so away with the fairies that part of me was half expecting whichever doctor I saw to send me home. Dr R (GP) looked shocked, surprised and exclaimed, 'Really?! As soon as you phoned everyone scrambled into action and when you arrived we all jumped out of our seats!' He said that they know when I phone up/call in saying that I need to see a doctor that I'm not time-wasting or exaggerating, but one of the few patients who genuinely do need to see a doctor. They know that I don't and wouldn't abuse the system, and that whenever my name appears on any of their lists for the day it flags up. Actually, at this point in the conversation Dr R said that when my name appears on the list they get scared, and he threw his hands up with an expression of 'Oh no!' ;o) I'm not sure how great it is to have this effect on one's GP ... on all the GPs, nurses and receptionists in the GP practice ... LOL

All in all it was a very useful appointment, and I came away feeling very positive about it. It was good to be able to share a little more about what it's like actually being in the throes of an asthma attack and some of the fears that run alongside the event itself as well as anxieties about potential treatment errors in the emergency situation. Aside from the mental challenge (which I've yet to fully decide upon and then discuss with some friends who may be able to help do the 'assessment' in future attacks) nothing has been firmly put into place, but there is a plan and things are being thought about and implemented. It may very well be that I find myself in A&E again before the meeting with an A&E consultant is organised, but at least I know that things are in the pipeline, and I know too that my GP is now fully aware of my anxieties and previous difficulties. I also know that my GP is more aware of how confused and unable to make sensible and rational judgements I become, and how quickly this can occur.

There's very little I can do to help my health - nothing more than I already do, so far as I'm aware - so it feels good to have been pro-active in this instance. I knew I had to do something as my lack of judgement, and the influence of previous negative experience in A&E on decisions I made in my state of confusion, so nearly cost me my life this time.

Small things

There are lots of small things at the moment that are contributing to a general feeling of happiness :o) I thought I'd share some of them with you.

First off, the clocks have gone forward so we're into British Summer Time and the evenings are so much lighter. The sun has been out and actually quite warm (my car thermometer said it was 18C this afternoon!), so that I've actually dared to go out a couple of times without the armour of a fleecy coat.

I'm enjoying the photos I took of my nephew when I saw at the Easter weekend. I have many that make me smile, but this is one of them. He's such a happy little fellow and I think you can see that in this photo. I'll just mention that he doesn't usually have a flannel sitting on his head ;oP

Next up in the list of small things is that my young crab apple tree in the small patch of mud at the front of my flat that passes for a garden of sorts has new buds on it. It won't be long till they come out, and although I know they won't last long, the blossom is so pretty while it's there.

I went to the cinema this evening and saw an excellent film - 'The Diving Bell and the Butterfly' I read reviews for this when I was in hospital and decided then that I'd like to see it. Unfortunately it doesn't seem to be on general release so I had a job tracking down a cinema that was showing it in my area. The small independent cinema in Newcastle (though it's currently lodging in Gateshead) had two showings of it - last night and tonight. In case you can't be bothered to click on the link I'll tell you briefly what it's about, though I'm sure I can't do it justice. It's about Jean-Dominique Bauby who was the editor of Elle magazine in the 1990s. Quite out of the blue, and at a very young age for such things to occur, he had a massive stroke and was left with what's called 'locked-in syndrome', meaning that he was completely paralysed, unable to move or speak, but completely lucid and 'with it' mentally. The one part of himself he could move was his left eye, which he could also blink, and through blinking he was then helped to communicate. There was the 'usual' one blink for yes, two blinks for no, but then the physiotherapist (at least I'm fairly sure she was a physio) hit on the idea of running through the alphabet and watching for Jean-Do to blink when the right letter was reached. Through this method he was able to say what he wanted to, and ultimately dictated a book (which goes by the same name as the film). It was a fascinating film, done with sensitivity, insight and wit, and also managed to avoid sentimentality. One of the things I found very interesting also was how a significant portion of the film was presented from the first person point of view, which is unusual in a film, but one that I could relate to especially in its hospital setting. Yes, a great film and definitely worth seeing sometime if you get the chance ... or get it out on DVD when it's available.

My next thing on my smile list has been that I've been able to breathe enough to go swimming. I'm trying not to over do it, as I have a tendency to when I get any window in my health that's big enough to leap out of (and forget the parachute). We'll see how it goes, but I've loved being in the water again as it's something that I used to do a lot of as a child and a teenager (I actually used to represent the city). Last Friday evening I went to the community-owned pool not too far from me as they have a 'chill out' session between 9 - 10pm on Fridays. This is basically swimming, but they have the main lights off, under water lights on, 'easy listening' music on and use of the steam room and sauna are included in the price (£3.50). It was wonderful, and I'm going again tomorrow night.

I know it's some time now since the ban on public smoking came into force, but I'm loving it. I love that I can go to the pub with friends and not have to leave because I can't breathe, or not go in the first place because I know the smoke will start an asthma attack. I've been organising a group of friends from church to go to the pub this coming Saturday and I'm really looking forward to it. We sometimes go on a Sunday evening after the evening service, but it tends to be a small, select group who feel up to it, where as it's quite possible there may be quite a band of us on Saturday. I love spending time with my friends - they make me smile :o)

Ever since my last hospital admission I've been playing catch up with my Open University studies and have been feeling the pressure. Although I haven't had the time to take proper notes, which may cause problems when it comes to revising for the exam in October, I do appear to be back on track now. I've also, in the past week, managed to write an essay for the course on Charles Dickens' Great Expectations. I only had 1500 words to write what could easily amount to a thesis, so I didn't feel like I could get anywhere near everything said that I wanted to, but I was quite pleased with what I did. I guess time will tell whether it's actually what was wanted.

Oh, speaking of assignments, I got my last one back last week and I was very pleasantly surprised by the mark - 85%

Another very pleasing thing is that one of my friends whose been extremely unwell in hospital is now home. She's still not right, but she's a lot better than she was and, when speaking to her on the phone, she sounds stronger now. I was so worried about her so it's great that she's well enough to be home.

And two final pieces of smiley news are that my sister-in-law is pregnant again, and my friend H is also pregnant! :oD

I love it when the small things build into a big ball of happiness. I wonder, what's on your smile list?