A favourite quote and a way by which to approach life.

Today is the tomorrow that you worried about yesterday.

Thursday, 26 April 2012

Full of busy

Since I got back from Edinburgh I've had a very busy time, which is why I haven't been around on here, but I promise I will try to make time for blogging again.

Last week was my first week back at university after the Easter holidays, and this term I have three modules for my MA running concurrently.  Two of them only have a few weeks left, but they both then have assignments that need to be written.  One of these modules has two pieces of work, but the first is only a short piece of 750 words - a review of an event - and I've done that already.  However, I do need to seriously start working on the longer essay.  I do have a bit of time till it's due in - 6th June - so I'm trying not to get stressed out about it.  The problem is, though, that I can never be sure when I'm going to end up back in hospital, so I can't rely on having all the time until the essay's due in to actually write it.  Alongside that, there're are also the other two modules, and whilst I've done the first draft (and a couple of redrafts) of the piece I'm doing for the novel writing workshop module, there's still a bit to do for it, and there's the entire piece for the Writing for Children module.  I've only just started that module and as yet have only a very basic idea of what I'm going to do for it. I'm looking forward to getting stuck in to it, but it's going to be a challenge, I know that for sure.  The assignment for Writing for Children is due in on 11th June, so you can see that I have a lot to do at the moment.

So I had three classes last week, and each class is two hours.  That might not sound like much, but it's hard work when you're doing it alongside life with POTS and chronic severe brittle asthma, and although I find that writing and studying sustains me, the effort of going to classes can be exhausting.  Overall, it's a great thing, which is why I keep on doing it, but it also means that I'm constantly battling with the conflict of wanting and needing to study/go out, and wanting and needing to rest.  Last week was a week when I couldn't do as much resting as I needed, and consequently I spent a lot of the weekend recovering.

Aside from study, last week, I also had my assessment appointment with the health psychologist.  I was nervous because I didn't want it to end up with the same outcome as when I saw the psychologist at the difficult asthma clinic.  As I've said previously, that concluded with the psychologist giving me a verbal pat on the back for having come so far since I saw a psychologist in the department years ago, and then basically being sent on my way.  This time I needed the psychologist to understand that what I'm dealing with now is a whole lot of different things from what I was dealing with nine years ago.  I needed to get across that the issues I need help with at the moment are issues about now, issues to do with my health and how the lack of health is impacting on my life, the upset of that, and the difficulties of adapting to ever shifting boundaries of limitation that my health is imposing.

The psychologist I saw wasn't someone I recognised, but then it is nine years since I was last going to the department regularly so it's not surprising that some staff have changed.  However, as I've taken part in extensive therapy before I wasn't afraid of actually talking to the psychologist, and found that I was quite easily able to open up and talk to her freely.  I have to admit that I was very surprised at how emotional I got when I was talking to her.  Most of the time I try just to get on with my situation and my life, making the most of what I have, but having the opportunity to talk to someone impartial about all the upsetting things made me very tearful.

One of the things I want to have the chance to talk about is the loss of my hopes and dreams.  I had many.  I've lost most of them.  I've made new dreams and have different hopes, but they don't stop me from grieving the loss of those that I had, and those are things that I need to be able to share and come to terms with.

It was a productive appointment.  As far as a psychology appointment can be good, it was, and I really felt that psychologist I saw got a handle on the issues I'm dealing with and understood their far-reaching consequences.  All through the appointment, though, I was wondering if I was touching all these sensitive issues only to have the psychologist turn around to me at the end and say that she couldn't help.  However, much to my relief, she said that she thought the referral was completely appropriate and that she did think the department would be able to offer me some input.  It may not be with her, but if it was to be with one of her colleagues then she'd pass on everything I'd told her (she took notes while we talked), and it'd only be with her colleague if it was going to be quicker for me to start with them than with her.  Unfortunately all that can be offered is six to ten session, but she assured me that should I need more from them in the future then my GP could re-refer me.  It's a shame that there isn't any on-going support these days like there used to be, but this is a lot better than nothing and hopefully it'll give me a bit more emotional strength to deal with what I have to.

Now the other thing that I did last week, that is totally different from any of the other stuff, is that I had a birthday :o)  I have lived another year beyond my life expectancy, although it's been a challenge to get through at times, as you know.  My birthday was on Thursday, so a university day, and a full one at that with two classes - one in the morning and one in the early evening.  I took a cake into my first class of the day and shared it with everyone, which made it all very jolly, and everyone's papers very chocolatey ;oP  Between classes I met with W and we went to the cinema to see 'The Pirates: In an Adventure with Scientists'.  It was great fun, light-hearted, and just what was needed for an afternoon film showing on my birthday.

On the Friday evening I went to Gibside.  This is a National Trust property on the edge of Gateshead and County Durham.  It's a lovely place, and somewhere I enjoy going whatever the weather, which is just as well because the last couple of times I've visited it's either been snowing or raining.  It was raining on Friday, but it didn't matter.  Every Friday between 6pm and 9pm they keep the walled garden open while the rest of the grounds are closed, and in an area next to the walled garden they have picnic tables and log burning braziers in a beer garden.  They serve beers from a local brewery, Fentimans soft drinks (also made locally), cakes, snacks, and ice-creams.  They're all sold from a little hut, which unfortunately isn't directly wheelchair accessible, but when they saw that I was sitting out in the rain they came and said that if I wanted to go inside they'd open up the main shop as there's a way through that to the rest of the hut.  As it was I was fine because we were sitting under a huge picnic table parasol, and not far from one of the braziers so it wasn't too chilly.  The rain also eased off a fair bit while we were there and at one point we had a gorgeous double rainbow.  I'd post a photo of the rainbows except that I haven't actually downloaded them onto my computer yet.

I'd invited a fair few people to join me at Gibside, but I left it a bit late to ask, and actually a lot of folk were away at various different places.  However, several people were able to come and I think all had a good time.  I know I did :o)  I don't think any of those who came had been to the Gibside beer garden before, but I think it is somewhere we might all end up again, though perhaps on a slightly less soggy evening.

As I mentioned before, I didn't do a huge amount at the weekend as I was recovering from the busy week I'd had.  This week has so far seen me back at university, doing some of the homework I've had from university (I still have some to do), an appointment with the physiotherapist at the hand clinic, two trips to the dentist as I had a filling fall out on Friday afternoon, and a quick visit to ward 29 for a portacath flush.  Not exactly a relaxing or fun-filled time, but all necessary.  I still have another two classes at university to go, more homework before tomorrow afternoon's class, and a follow-up appointment with the surgeon at the hand clinic.  Thankfully, I have a nice day with W planned for Saturday, so that will redress the balance somewhat :o)

Right then, I'd better get myself to bed or I'll never manage to get myself up in the morning in time for my class, which this week is an hour earlier than usual as the tutor has to go and host an event at the Hexham Book Festival in the early afternoon.  I wish her luck, but I so wish I could have that extra hour in bed ;o)

Sunday, 15 April 2012

Time out

I'm still up in Edinburgh till tomorrow evening, but I've had a lovely break while I've been here.  I did a great deal of not very much over Easter weekend, except for a couple of trundles round the pond in the nearby park, and a slightly longer venture into the park and surrounding area last Sunday.  It's great to be able to go for a trundle and enjoy some time in the park with Mum and J, because there have been so many times over recent years when my lungs and the POTS have meant that I just haven't been up to it.  Taz makes it possible, so whilst it's not great that I need to use the wheelchair, it's great that I've got it and that it enables me to make the most of life.

Mum and J live in a lovely part of Edinburgh, and although it's only a couple of miles outside the city centre, it's very leafy and the local park is lovely.  They have a sizeable garden at the front of the house (not massive, but big enough to be called sizeable), and Mum likes to leave food out for all the little birds.  But while I've been here it hasn't just been the blackbirds, robins, wood pigeons, etc that have been visiting the garden, but also a tawny owl.  I've heard it in the area most nights, hooting its hooo-hooo-hoooooo, and its occasional ke-wick, sometimes in the distance, but often much closer.  At about 2.30am one night I was lying in bed unable to sleep when I heard it very close by, so I got up to peer out of the window and see if I could see it.  Sure enough, it was sitting in the copper birch tree just outside my bedroom at the end of the garden.  At first I wasn't sure if what I was seeing was the owl, but it was soon confirmed when it started to hoot and everytime it did it tossed its head up, as if it was saying, 'I'm a very proud owl.  Listen to what I have to say.'  Then it would ruffle its tail feathers before doing the whole thing again.  I watched it for several minutes before climbing back into bed, but the owl stayed where it was and hooted into the night.  I fell asleep soon after getting back into bed, nicely relaxed, smiling, and marvelling at the beauty of nature.

I think that was possibly on Tuesday, and that I hadn't been able to sleep because it'd been a rather mixed day.  It had been the funeral of my friend J in afternoon, but of course I hadn't been able to go to the funeral because of being up here.  I'd had some quiet time in the afternoon thinking about her and praying for her and her family and I'd felt a bit pensive and sad.  I'd also been concerned about my friend R who was having an operation in Newcastle that day, so I was very mindful of her and had been wondering how things had gone.  Thankfully all seems to have gone as well as could be expected, and while she's in some pain, she seems to be mending and is hoping to get home soon.

After a day of contemplation and thinking about my friends, in the evening Mum, J and I had gone to the theatre to see South Pacific.  It was great fun.  I've seen it once before many years ago in Newcastle, and this production possibly wasn't quite as vibrant as that one had been, but it was still well worth seeing, and some of the actors had fantastic singing voices.  The actress who played the part of Bloody Mary was particularly good and Mum and I both came home with Bloody Mary's song 'Bali Hai' (or however it's spelled) going round in our heads.  Actually, we still both keep breaking out into song with that one every so often.  Either that or 'I'm Going to Wash That Man Right Out of my Hair', which I don't think pleases J too much ;oP  (not that he has anything to worry about.  Mum and J were curled up on the sofa together yesterday evening, and next year they celebrate 20 years of marriage).

So I pretty sure that it was Wednesday afternoon that we got the bus all the way across town to the Scottish National Gallery of Modern Art to see the Edvard Munch exhibition.  If any of you are up in Edinburgh between now and the middle of September, and you like modern art, then this exhibition is definitely worth seeing.  It doesn't have many (if any) of Munch's paintings, but instead is largely comprised of his lithographs and woodblock prints, although a number of these were subjects that he also painted.  One of these - 'Meloncholy' - is a painting that I examined and commented on as part of the last End of Course of Assessment for the last module of my undergraduate degree, so I was particularly interested in seeing the woodblock print of this.  As the title suggests, it's not a cheery picture, but then Munch wasn't a cheery fellow, having lost both his parents when he was young and a beloved older sister not long after that.  Many of the pictures reflect a deep sadness, almost a depression, and certainly a mourning for those he loved who had died, but there is the occasional relief too when looking round the exhibition.  Yes, definitely worth seeing if you get the chance.

I had a quiet day on Thursday, and have spent many peaceful hours on this trip north sitting doing cross-stitch.  I'm working on one called 'Birds on Wisteria'
This image is taken from the website from where I bought the kit, rather than being the finished product of my work.  I haven't actually finished it yet, although I have done a huge amount while I've been here and don't suppose it'll be all that long until I do finish it.  I love cross-stitch.  It's so relaxing, totally absorbing, and very satisfying.  It hasn't been easy doing all the sewing I have with my hand still mending after last month's surgery, but as I'm mostly just holding the material and hoop with my left hand it's not too bad, although the scar is quite painful so I hope I'm not doing it any harm.  Anyway, I've been enjoying doing the cross-stitch, and pretty much the only thing I did on Thursday was go into town on the bus to get some more of one colour of thread for the cross-stitch as I'd made a major mistake and had had to unpick about eight hours worth of work!  This had been extremely annoying, but more than that, it had meant that I didn't have enough of that colour to finish the piece.  Thankfully I was able to find the right colour in town, so came back after that little adventure and set back to sewing.

I didn't actually do a huge amount of cross-stitch that evening as we had my friend O and her husband A round for dinner, which was lovely.  I met O through the Open University after we'd both studied the creative writing module A215.  O is fab, and I love spending time with her so it was great that she and A came round on Thursday evening, and so very kind of my mum to cook a fabulous meal for us all.  It was a very lovely evening with great food and lots of interesting and varied conversation.

I saw O again on Friday as we'd booked in for a salty experience at The Salt Cave.  We went there together last summer, and while I don't know if its claims of being a successful treatment for lots of different medical conditions (including asthma) are true, it is certainly a very relaxing experience.  It also hasn't done me any harm, and to be fair, my nose has felt really clear after both times that I've been.  This time, O and I were the only people booked in for the four o'clock session so we had the place to ourselves.  Not long after we'd made ourselves comfortable, the lights were dimmed, the salty air machine (or whatever it is) was put on, and gentle music that combined the sound of waves lapping up onto a shore was played into the room.  We both fell asleep.  We also both came out rather salty, with a thin covering of white salt having to be dusted off the front of our clothes before we left the room, and my lips were still salty when I got home.

So then there was Saturday and Mum, J and I walked/trundled off through The Meadows in the afternoon for a relatively short visit to The National Museum of Scotland.  I hadn't known before I went there this time that they have a few pieces of Benin art, but when I read this on the back of the floorplan we were given as we went in I was particularly interested in seeing them as I'd studied some Benin art history in the last module for undergraduate degree.  Mum and J have obviously been to the museum several times, but apparently they haven't yet managed to get beyond the first or second floor.  The pieces of Benin art are on the fifth floor, so they hadn't seen these and were all up for rectifying this when I told them what I know about the history of them.  There's only one display case with Benin art in it, but it's amazing stuff, and the rest of the stuff in that room is fantastic too.  We took a slow wander around the displays in that room and the adjoining one, then went for a mooch around the museum shop before walking/trundling home again.  It was good to take our time over a small section of the museum and to come away feeling as though we'd had some focus on what we'd seen.  None of us felt overloaded with information or overwhelmed by too many artifacts, and it was such a pleasant day - crisp, but bright and not too chilly - that the walk/trundle either way had topped it off.

Finally, Saturday evening saw us going to the cinema to see 'The Artist'.  Mum and J had seen it before, but both quite wanted to see it again, and as I hadn't seen it I was up for it, especially after all the excellent reviews I've heard about it.  Oh, and of course it won all those Oscars too.  It's a great film!  I reckon Mum's right when she says that she thinks it'll become a classic.  It almost seems as though it already is, or ought to be, because its a silent film in black and white.

It's ages since I've been to the cinema, probably a year or maybe even longer.  I've wanted to go to things, but just when I've started to make plans to go I've got ill and ended up in hospital so I think the last thing I saw at the cinema was the final Harry Potter film.  It was either that or 'The King's Speech', whichever of those was the most recent.  Anyway, I got to 'The Artist' tonight/last night, and it was fab.  Mum and J go to a little independent cinema called The Dominion, for which they have Gold Membership.  This basically means that they pay an annual subscription and then get reduced tickets to all the films they go to through the year, and they also get extra comfy seats.  When I say 'extra comfy' you need to be thinking of reclining leather seats with foot rests, so it's like lying on a sofa.  Oh, and they get free drinks and crisps too with their membership.  It's brilliant.  I've been a few times with them and I love it every time I go.

So that's been my stay up north in Edinburgh.  Back home tomorrow evening/this evening (Sunday) and back to university next week, but hopefully I'll be going back feeling more refreshed than I have for a while.  My lungs are a little iffy, but they're manageable, and maybe the TLC and the time out that I've had over the past ten days will have built up my resilience a little.

Here's hoping for an easy journey home.

Sunday, 8 April 2012

A mixed bag

Once again I apologise for my absence.  It's far, far too long since I blogged, but I've actually needed a little bit of a break as quite a lot has been going on.  It's also been quite difficult to type comfortably while my hand has been recovering from the carpal tunnel release surgery.  The recovery hasn't been as straight forward with my left hand as it was with my right, and when I went back to clinic to have the stitches removed the wound fell open.  The nurse put an antiseptic dressing on it, steri-stripped the wound back together, and told me to come back this week to see how it was getting on.  Thankfully, when I went back on Wednesday the wound seemed a fair bit better - at least it was holding together - but it's a lot more painful/sensitive than the other one was, it's still very swollen (to be expected really), and there's a bit of an odd lump at the base of the wound that's very tender.  I've been told that I may need some ultrasound therapy on it from the physios, but to see how it goes over the next couple of weeks and get in touch for physio after that if it's still really sore.  One relief is that I now have the big bandages off, and whilst I still need to wear a tubigrip support bandage sometimes, I'm generally much more dexterous again, and typing isn't anywhere near as painful as it was.

This time of absence has been very mixed aside from the slight anxieties of my hand not healing brilliantly.  Very sadly a friend from church died suddenly and unexpectedly at the end of March.  It's been quite a shock.  It doesn't matter that she was seventy years old - that's no age at all these days - she was a lovely person who always went out of her way to find out how I was doing, even though things weren't always straightforward in her own life.  It's her funeral on Tuesday, but I won't be able to go as I'm up in Edinburgh at my mum's for a bit of a break.  I'm sorry not to be going to celebrate J's life at her funeral, but I will have some quite time of contemplation and remembering her on my own on Tuesday afternoon, and if I get a chance to get to the cathedral sometimes while I'm here then I'll light a candle for her.  Rest in peace, J.

This past week has also seen the first anniversary of my step-brother's suicide.  It was a year ago last Tuesday that he went missing and killed himself and three days afterwards that he was found.  I've thought about him a lot.  I've missed him.  I've thought about my step-sister A and my step-brother N (Nn's sister and brother) a lot.  It's still all so very sad and tragic.  W came round for a bit on Tuesday evening to keep me company :o)  That was lovely.  We had a quiet evening doing cross-stitch and eating chip shop chips with baked beans added at home.  An evening of comfort food and comfort activity :o)  Just what I needed.

Not everything has been sad though.  There have been positives too, which is why I said that it's been a mixed time.  Firstly, there's been the positive of the clocks having gone forward, which means that we've made it through the winter and the long, dark nights that come with winter.  I've been enjoying the lighter evenings and going for trundles in the park to make the most of them.  I went to local park here by my mum's this evening with my step-dad, which was lovely, and it was fabulous that it was still light when we got back at 7pm.

The other excellent thing that has happened since I last blogged is that I have been granted funding by Motability for a wheelchair accessible vehicle (WAV) and a powered ramp for it.  They're not giving me funding for privacy glass in the rear windows as I said it was for security rather than privacy, but to be honest I'm not terribly surprised and I'm actually going to fund this myself.  At first they were being a bit iffy about giving me funding for a powered ramp, questioning why I couldn't manage a gas-assisted ramp, despite my GP having written a letter saying that bending down to deploy and lift a gas-assisted ramp requires a change in blood pressure which I cannot maintain and would very likely be frequently passing out.  One of the cars that I test-drove actually had a gas-assisted ramp, which I'd tried and couldn't manage, and Bill (the guy from the car converter company) had stated this in his report, along with a suggestion that I'd need a powered ramp.  However, Motability insisted that I try it again and laughably suggested that I flick the ramp back up with my foot.  As Bill said after he demonstrated this manoeuvre to me, 'It's nothing that no premier league footballer or professional athlete couldn't manage' ;oP  Again, he wrote on another report for Motability that I would need a powered ramp, and thankfully they saw sense and have granted me funding for it.  I have now ordered my new car - a Citroen Berlingo - and should get it in about six weeks time.  It may be a little longer (possibly up to ten weeks), but Bill was hopeful for about six weeks.  I'm looking forward to it, even though I hate what it stands for and I'm loathed to part with my Vauxhall Meriva, which I love.  The WAV Berlingo is going to open up my life again and that's invaluable.

The only other little bit of news is that I went to falls and syncope clinic again last week and my consultant doesn't think they can do anything for the POTS so I don't have to go back.  I'm not sure how I feel about this.  Yeah, it's good to be free of another hospital appointment, but it's not great that yet again I've reached the end of treatment possibilities ... not that there are many treatment possibilities for POTS.  I don't think I've actually been discharged, so to speak, but rather that there's not a lot of point in me going back at the moment, as the consultant said that I can get in touch with them if I feel I need to or if my GP thinks I need to be seen again.  I guess we'll just have to see how things go.

That's about all my news for now.  Hopefully I'll be back with you again in the next few days.  In the meantime, have a very happy Easter.