Still here

Apologies, all, for the lack of posts recently. I'm still here, but have been a bit busy trying to catch up with my OU studies whilst also writing my submission for the Postgrad Certificate Memoir Writing module I recently finished. In the end I did three short-ish pieces for the submission, which I'm reasonably happy with, but it's the tutor/marker that has to like them so I'm hoping she does. I did the commentary - self-critique of the pieces and process of writing them - on Wednesday, and although I wasn't brilliantly happy with it I decided that it'd do and I put the submission in this afternoon. It feels good to have got it done and out of the way, and it feels good to have confirmed with Newcastle University English Department that I'm going to go on and complete my PGCert this academic year ... and go onto the MA in October! I still have to finish my undergrad degree of course, but I've only got a very small amount of that left to do - one proper assignment; one small, reflective assignment; and the extended essay. I'm at the thinking stage of the proper assignment, with ideas floating around my head, so I should hopefully get it done in the next week.

OU studies have been delayed during this past week and bit not only because of the PGC submission, but also becasue I haven't been feeling too grand. My lungs aren't behaving very well and when I went to the ward last week for my portacath flush, J (Charge Nurse) offered to find a bed for me :o( I was tight and wheezy, but not awful so said I'd prefer not to have to stay if I could avoid it. He said okay, but also to email him when I think I need a bed reserving, which neither of us think will be too long :o( I'm wondering if part of it is due to a rise in pollen as I've been sneezing a bit and my eyes have been itchy, though I'm sure it's also just part of the pattern of things. It seems to be a fairly slow decline as I'm still not at the 'really struggling, but somehow managing' stage, despite having been slipping for ten days or so. It can stay slow for the moment, because I've got things I want to do, like go to my friend's graduation on 8th April... Hmm, I wonder if I'll last two weeks...I hope so, but I also hope that I'll still be well enough to enjoy the graduation, despite being on the slip... Hmmm.......

I've been very POTSy today as well as the lungs not playing properly. I had an awful night's sleep last night with the most horrendous, stabbing headache that somehow throbbed at the same time as being stabbing. It kept waking me up, and it sometimes felt like my head was literally going to split in half. It intermittently continued through the morning and early afternoon, and although it abated later in the day I've still been feeling fairly rubbish and completely wiped out. The wiped-out-ness has most likely been contributing to the POTSiness, and I've been good for nothing other than sofa surfing. The only thing I've done today is take my submission to the university (as I said before), and I only did that today because I didn't want it hanging over me through the weekend when Monday's the cut-off date and there's no saying whether Monday will be any better.

I'm off to bed now and hoping for a much better night.

Appointments

Last weekend I was approached by one of my neighbours while I was out shopping in the local small supermarket. She's someone I've seen around a lot, but never actually spoken to, but this is an area with a good sense of community so it wasn't much of a surprise that someone I frequently saw in the street should stop to speak to me. What was a little surprising was that she was asking me about my care needs and what care I currently get. It turns out that she used to be an occupational therapist, took a career break to have children, and now that they're all at school she wants to get back into work, but OT jobs seem to be a rarity so she's thinking of becoming a carer or PA for the time being. She was asking which agencies my carers come from, so I told her and explained that they're sub-contracted from Social Services. So then she asked about whether I'd ever considered getting direct payments so that I could choose my own carers, and I explained that it was something I'd recently been thinking about, but I don't think it's possible as my care is now paid for by the NHS after the Continuing Care Assessment I had last year. Anyway, she was lovely and I said I'd be happy to give her the phone numbers of the agencies that provide my carers in case she wanted to get in touch with them about employment. She popped round to my flat a little later that evening and we had another lovely chat, during which she asked if I'd consider employing her as my carer, and that she could supply references and get a CRB check etc. Although this might seem a bit odd given how quickly and unexpectedly this has all come about, she is actually someone I would consider appointing as a carer (providing she can cook! ;oP ) if I could get direct payments. I decided I'd enquire about the possibility of direct payments and found the address to email the right department. That was on Friday/Saturday night, and I had a phone call back from them on Monday morning, but unfortunately the news wasn't good, and it seems that because I now have my care paid for by the NHS then I can't get direct payments, which seems not only daft but somewhat unfair. Why shouldn't I be able to choose who my carer is just because of the funding body? The social services person who phoned me back (it may even have been a social worker) did give me the phone number of the 'nursing assessors', whoever they might be, who may be able to help, and a friend of mine who's a social worker has said that it may be that something akin to direct payments is an option, but with a different name. I've yet to contact the nursing assessors, but I will do when I've got a bit of time not taken up with study and hospital appointments.

I've had two hospital appointments since Thursday. The first was with my asthma consultant, Dr H. I wasn't expecting anything much as there are never any new treatments on the horizon that'll be suitable for me, and sure enough, this is still the case. However, Dr H is unhappy at the huge dose of predisolone I'm on and have been on for well over a year now - for the past eighteen months I don't think I've managed to get my pred dose below 85mg, and at the moment I'm on 100mg! This is down from the 125mg I was on at the beginning of the year, but not by much and it's still an absolutely enormous dose. Now it should be that a corticosteroid is a corticosteroid is a corticosteroid, but Dr H is wondering if I may respond better to another one - not pred - so we're considering changing over to Kenalog. He said it's tricky to work out comparable doses of Kenalog to prednisolone, and he also explained that Kenalog is given as a depo-injection every few weeks, rather than by tablet. This would kind of be an advantage I suppose as it'd be one less medication (and a whole load of tablets) to have to think about, but I guess the disadvantage is that the dose can't be varied so if there's a brewing splat I don't know if I'd have to up my steroid intake with extra pred... I guess that'd be something to discuss with Dr H, but the final decision on Kenalog hasn't yet been made. We're both going to think about it over the next few weeks and then perhaps come to a decision when I next see him. I'm hoping that this will be in clinic in May, but I'm not convinced I'll make it that long without another splat. The old breathing bags are being quite grumbly and unpredictable at the moment, and my peak flows are more erratic than usual with an emphasis on being low :o( I'll keep you posted about all that.

Today I had an appointment at the Falls and Syncope Clinic, and again I wasn't expecting any miracle cures, and again I was right that there aren't any miracle cures. However, the doc does want to see if they can get me any better than I currently am, with less passing out, less falling about, less dizziness, less POTSiness and vasovagal syncope-ness all round. He said that the first thing to do is to get a 24-hour blood pressure monitoring, so he's put me down for that between now and my next clinic appointment. He said they monitors seem to be coming available quite quickly at the moment so I may not have to wait too long for that, which would be good, especially as he wants to see me back in clinic in six weeks time. After that there are a couple of possibilities primarily targeting my tendency for low blood pressure (and vasovagal syncope), the first of which is the mineralocorticoid Fludrocortisone. I think it works by causing retention of water and therefore raising blood pressure, but of course, as a steroid, it has all the possible side-effects of steroids too ... not that that's going to be increased very much from what I'm already on for my lungs. To be honest, I'm not thrilled with the thought of intentional water retention after my miserable experiences of unintentional water retention, so I'd prefer the second option - Midodrine. I don't yet know a huge amount about midodrine, other than it raises blood pressure (and a very little bit about how it does that), and that it's not currently licenced for raising blood pressure so it'd have to be prescribed off-licence. The doc explained some of the potential side-effects, the most notable being that it can reduce potassium levels, which may be a concern as my nebs can do that too and low potassium levels can be dangerous to heart function (and other organ systems too). The other side-effect he said that some people find intolerable is a kind of goosebumpy feeling as the med makes all your hairs stand on end. I'm not sure which of those two drug options I'd prefer. The doc said he'd prefer to try fludrocortisone first, but I think I'd be more inclined to try midodrine first, though I suspect that at the end of the day it'll come down to the doc's preference, not mine. Before a decision is made, though, we'll see what my 24-hour BP monitoring shows.

Future plans

I'm unexpectedly reconsidering the timing of things with my postgraduate studies. I started the postgrad certificate (PGC) in creative writing this academic year, planning to do it over two years and then go onto the MA in September 2012. The PGC is 60 credits made up of three modules each of 10 credits and a portfolio/dissertation of 30 credits. When doing it over two years you do one or two modules in the first year, and the remaining module(s) and the portfolio in the second year. I was planning on doing two modules this year - I'm coming to the end of my second module at the moment (last class tomorrow evening) - and then hoping to top up my credits towards the MA next academic year while I finish the PGC, but it turns out that you can't do that. Apparently if you do well enough on the PGC then you get automatic acceptance onto the MA and exemption from part of part 1 of the MA as well, but in order to do these things then you have first to pass the PGC. I was discussing all this with someone in the Newcastle University English department admin office (someone who knows everything about everything in the department) and she suggested that I consider finishing the PGC this year and go onto the MA this September. Part of my planning to do the PGC over two years was due to my on-going studies with the Open University and not wanting to push myself too hard, and this is still very much a consideration, particularly as the End of Module Assessment (EMA) for the OU course is due in on 28th May and the EMA for what would be the final module for the PGC would be due in on 5th June, so not a lot of space between them. Then there's the fact that the PGC portfolio/dissertation would be due in by the end of August, which is fine, except that I will need some kind of break over the summer. At the moment I'm veering towards finishing the PGC this year, but I haven't yet made my final decision, though I do need to do so in the next week or so.

Decisions such as this would be so much less difficult to make if I could depend on my breathing and be sure that I could stick to a study schedule, but my life isn't like that and I can't guarantee that any plans of any sort that I make will be stuck to. It's frustrating. All I can be sure of is that at some point life will be interrupted by my asthma and I'll end up in hospital, but I can't know when this will be so I can't make plans around it, so instead I have to make plans and try to accept that not all will go ahead. I hate that though. I end up feeling like I've missed out ... which I suppose I have in a way. I don't want to end up feeling like that with my studies... I hope I won't have reason to...

I'm currently wondering when I'm next going to end up in hospital as it's been several weeks now since I was last discharged and my lungs are being rather temperamental. They're not anywhere near awful, but they're twitchy, unstable (as ever), wheezier than they sometimes are, and waking me a lot at night. None of those are good signs, but there's not a great deal I can do about it. I have an appointment in the morning with my consultant, though I don't expect anything much from it as there's never anything that can be done to help, but Dr H keeps an eye on things and makes sure I'm not in dire straights at the time that I see him. If only I could predict when those times of dire straights would be, that bit of life would be easier ;o)

Well, we shall see what, if anything, Dr H has to say tomorrow, and over the next few days I'll keep mulling over my future education options.

Embrace the moment

Life is for living, wouldn't you agree? There are times when opportunities arise either to embrace moments of life or look all embarrassed and shirk away from them. Last night I was presented with one of these opportunities, and had one of the most surreal experiences of my life. I had come out of my PGC memoir writing class and was somewhat thoughtful after a couple of the exercises we'd done, but I was fairly cheery nonetheless, because I've been enjoying this module immensely and finding it very stimulating. I'd left the university grounds and was making my way down Northumberland Street - the main shopping street in Newcastle city centre - in my electric wheelchair, when I was challenged to a race. That would be an odd occurence in itself, but what made this particularly surreal was that my challenger was a man dressed as a nun driving a small, white grand piano, adorned with spiralled, blue rope lights, making it look quite magnificent as it came up the street in the dark, blasting out its variations of pop music (of sorts). It has to be said that I was a little bemused by the sight, but also thought it was wonderful with a particular kind of craziness. So having been challenged to a race by this 'nun' I had quickly to decide whether or not to embrace the silliness and possible embarrassment. I was on my own, but the street was still vibrant because the shops were still open, and it being 7.15 on a Thursday night in Newcastle there were more than a few who were already starting their weekend celebrations. They, and many others had heard the nun ask me if I'd like a race and there were guffaws all round, which then developed into whoops of incredulous pleasure when I decided to embrace the moment and accept the challenge. I had to do a little negotiation though as I'd been whizzing down the street and the nun had been driving his piano up the street. At first he was reluctant to go in the direction I wanted to go (I'm not sure why), but when I said that I needed to be heading vaguely towards my bus stop then he relented, and he did the race going backwards. I have to say that I've never before raced a man dressed as a nun who's driving a small grand piano blasting out pop music, but it was great fun. It was, I'm sorry to say, a very short race, but I won all the same :oD And the spectators cheered and laughed and enjoyed the sight of a nun driving a piano racing a woman in an electric wheelchair. And I've been smiling about it a great deal ever since, so I'm particularly pleased that I embraced the moment of silliness and lived that little moment of life, when it would've been so easy to give into the fear of embarrassment.

I've done a Google search on 'my nun' and I've found that he's called Sister Ruth, has her own website, and travels the country doing all sorts of gigs and parties. Great fun! Live life and embrace the moment!

New life

It's the end of February, which means that it's almost March, which means that it's nearly spring. There are buds on the crab apple tree in my small patch of mud (aka little front garden), and one or two flowers with plenty more buds on the winter jasmine in the back yard. As yet there aren't any daffodil buds (too early for that up here in the north), but there are shoots popping up here and there, and it won't be long until we see the bud heads, shortly followed by them blowing their trumpets :o) Spring is wonderful. A very welcome return of longer days, warmer weather, signs that nature has just been resting during the long winter months, and the return of life in the world around us.

For all that February has fewer days than any other month, it can be a long, long month to get through. It can be cold, and dark, and with long nights and short days, and a post-new year lethargy. This year February hasn't been so hard to get through , largely because of the anticipation of the arrival of my younger brother's first baby. It was due on 10th. Baby J eventually arrived in the evening of 23rd! Almost two weeks of suppressed excitement in the waiting, but at last he arrived. It wasn't an easy birth and ultimately he had to be born by cesarean section, but he's here and feeding well, and the whole family are doing well, so I'm told. They live down in Cambridgeshire, and although Mum has gone down to see them they've asked that they have a little bit of time to get used to being a family of three before they have lots of visitors. I want to respect that, even though I'm desperate to meet J, so it'll be a little while before I get down there, but in the meantime I have a small mountain of presents to send J, though I need to make a card for him to go with the gifts.

I love being an aunty to O and D - my older brother's boys - and I'm very much looking forward to being an aunty to J as well. My only wish is that they didn't all live so far away, but once my courses are finished then I should have considerably more time to go off visiting, although I'm definitely going to get to Cambridgeshire before then. Definitely.

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!

Books that saved your life

Last night I went to a talk/interview thing with Jeanette Winterson at Newcastle University. It was fascinating stuff. She was largely talking about the memoir that she's writing and is due for publication in October, I think. Obviously as it hasn't been published yet then none of the audience had been able to read the memoir, but Jackie Kay who was interviewing had had the privilege of doing so, and Jeanette Winterson read out the first chapter to us. I hadn't known that she had been adopted, and this is largely what the memoir seems to be about, in a similar way to Jackie Kay's own memoir Red Dust Road. My younger brother, C, was adopted (originally born as my cousin), so it's a subject that interests me from the position of a sibling, and I think I'll be getting Jeanette Winterson's book when it comes out later in the year.

During the course of the interview JW spoke about the effect of some of her adoptive family's home-life and parenting, and the effect of learning more about her birth mother, and finally meeting her. She spoke also about working through the feeling of not belonging anywhere solidly in the world when you're an adopted person, which resonated in me with something that my brother once said to my mother. He was very young, perhaps six - I'm not sure - and he said, 'I don't want to be a dopted. I want to be a boy.' That says so much about identity, and a small child's perception of who they are and who they're seen to be.

So Jeanette Winterson was talking about this time in her life when she was working her way through all this, and she told how she got terribly depressed and had a breakdown. She spoke about how she lost all her words; not just her ability to write, which is terrible enough when you're an author, but more her all-round ability/inability to express herself. She told how awful that was for her, but then how it was poetry that helped her find her words again - not writing poetry, but reading it. As she said, poetry often isn't taken seriously as a form of literature and emotional expression, but rather as something soft and insincere, or conversely hard and academic. She then went on to say that reading poetry, and particular books of poetry saved her life; not the self-help books on depression and surviving nervous breakdowns, but books of poetry, other books - books saved her life. I found myself being distracted by this for a while during the talk, and through the rest of the night at home, and all through today, and I've been thinking about what books would I say have saved my life.

As I've spoken about a little in the past (and realise I've mentioned several times in recent posts for one reason or another), I had terrible, terrible depression for many years. It was debilitating. It had me in hospital on several occasions, usually for at least a few weeks, and once for eight months. In retrospect I would say that I was depressed to some extent from fairly early childhood, getting worse in my teenage years, and then reaching desperate levels in my twenties. I was actively suicidal. I self-harmed extensively. I started self-harming when I was in sixth form, but at that time it was very superficial, and it stayed superficial (though that doesn't make it insignificant) for a lot of years. As time progressed, the depression got worse, my lack of self-worth increased, and I lost the desire to live, the self-harming got worse. I'm not going to go into detail, but just to say that I was told on several occasions in A&E that it was the worst self-harm the doctor had seen, and I became very well acquainted with the internal anatomy of my arms. It was a terrible, terrible time, that I didn't believe would ever end without my killing myself. Thank God I was wrong, and thank God He got me through the suicidality so that I had the opportunity to find out that the terrible time could end another way.

In my late teens I read Richard Bach's book Jonathan Livingston Seagull. I know it's kind of seen as a 'hippy' book, but it I loved it. I still love it. There's a hope in it; a hope that being different and alone doesn't make you worthless and hopeless or any less worthy than anyone else. Jonathan Livingston Seagull is a kindred spirit to the outsider. It's a book that saved my life. When I was in the deepest depression I had no concentration to read, but my friend S read the book onto tape for me and I listened to it again and again and again. I still have the tape. I lost myself in the imagery it induced, and my time flying around the lonely skies above the seas, taking dives closer and closer to the surface of the water, gave me some calm. Jonathan Seagull was playing with death, I suppose, as he made those dives seawards, and I was playing with death with my ever-worsening self-harm ... although it wasn't a game ... it was the deepest unhappiness in the world and I was trying to escape...

After thinking about Jonathan Livingston Seagull, I wondered if there other books that had given me a spider's-breath of hope, or something else that had saved my life. Like JW I'm not talking about self-help guides, and I also mean something other than the Bible. There probably are other books that gave me something positive, or helped me see things in a different way, but nothing I can really, truly identify. No published books anyway. However, there was one other book (or series of other books) that was highly significant to me, I carried with me constantly when I was in hospital, and called upon often when at home. My diaries. My diaries probably saved my life too, and I have my diaries going back to about twenty years, although I hardly ever read them as they're full of that horrendous depression. But I want to share with you just a small part of two diary entries from 2003:



Monday 24th March 2003 - 10.32pm


I don't feel safe to myself. I don't know why but I am very urgy. At the moment I'd say that I'm maybe 90% certain to cut. Wish I knew why I'm so urgy. Maybe it's the habit of it. Maybe it's because inside I'm crying, but can't on the outside. Maybe it's something familiar ... a very weird kind of comfort. It shows me that I'm real, despite not feeling it. It shows me that I'm alive, despite not feeling it. When it hurts some of the internal hurt goes. While I'm doing it I'm calm and everything else goes for a while.


Thursday 27th March 2003 - 3.34am

I've been looking at my arms whilst moisturising them, and I've realised that my scars will only ever remind me of bad times. I've known that somewhere for a long time, but I've only just fully realised it. I want to be able to stop cutting. I don't always want to be reminded of all the bad times. I am going to try my hardest not to cut. I think it's three years that you have to be si free before you can have plastic surgery done on them so I figure that if I can do that then it'll be 2006. It'll almost be my 32nd birthday. I could aim for that ... I shall make that my aim. I will try to find a way, and ask other people for ideas of ways to stop. I shall need a lot of support and I don't know how I'm going to achieve it, but I want to try. I want to be able to free myself from the past - from all the pain - and I don't think I'll ever be truly able to do that while I bear constant reminders of how terrible things have been (and are at the moment).

I will see if it's possible to buy Tubifast so that I can write on my arms without immediately having to wash it off so others don't see it. I will write 'NO' in big, black letters. I will write '32/2006' or something similar.

Seems weird talking about becoming 32 and the year 2006 because they're in a time-scale that doesn't yet exist for me. I can hardly comprehend Monday [...] let alone 3 years time ... I'll still try to aim for it though.

Need to find other coping strategies quickly!



I have only self-harmed once since making that diary entry, and that was on 22nd April that year - 2003. It was one of the toughest things I ever did - giving up si (self injury) - but I did it, and it's been several years now since I've had kind of urge to si. I never did go for plastic surgery and I'll always have the scars, but they're a part of me. I don't like them, but I don't hate them - they're just the way my arms are, and I long ago decided that if other people don't like what they see then they don't have to look. I, on the other hand, have to live with them everyday so if I hide them away and refuse to accept them, then I'm hiding myself away and refusing to accept a part of me. I won't do that. Harbouring that attitude will harbour an underlying self-hatred that has potential to develop into depression again, and I'm not doing that if I can help it. Life is for living, and I'm going to live it! My diary taught me that. My diary saved my life.

Are there any books that have saved your life?