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!