Review of the year 2015

It's far too long since I last posted, and I left you all in a bit of limbo.  Sorry about that.  I'll come back to what happened with the rest of my Cambridge admission, and some of what has happened since, but it's a bit complicated to integrate into this post.

2015 was a difficult year in many, many ways with an awful lot of ill-health, but I will let my Review of the Year questions tell a bit more of the story - the ups and downs...

1. What has been your biggest achievement this year?
Probably getting onto the Patient Input Platform (PIP) for the RASP (UK) study into severe asthma.  I was asked to apply for a position on the PIP, but there was definitely no guarantee that I was would be successful and still had to fill in the application form (2000 words required) and be interviewed by someone from Asthma UK and someone already on the PIP.

2. What made you laugh most this year?
I think it was during a day of geocaching that I had with a my friend Ruth up at Bamburgh and Holy Island.  We had lots of fun and a huge amount of silliness, especially when it came to finding our last cache of the day, 'Cache and 'Tache' 

The biggest laughs were as we kept the 'taches on and made our way back to the car, but ended up causing some passers-by to stop their car and chat to us because they were laughing at us so much.

3. What unfulfilled hopes do you have for the past year?
I hardly wrote anything during 2015, either on my blog or otherwise, and I had been hoping to write a fair bit for both my book about my asthma and also my children's book.  I know this is a direct result of how difficult the year has been so I'm trying not to be too disappointed in myself.

4. What has been your favourite/most listened to piece of music this year?
There's a Peter, Paul, and Mary song we do at choir (Flotsam) called 'Jane Jane' that I absolutely love singing.  I particularly love the arrangement that we do (arranged by the MD, Andrew Scott - Scottee), but I have listened to the original version a lot too.

I have also listened to a lot of Bellowhead CDs both in the car and at home.  They're so enlivening, and I've needed a lot of that this past year.

5. What was your best holiday this year?
Well, as you know, my holiday didn't go as planned, but I did have an absolutely fantastic time in Wales before it all turned disastrous in Cambridge, so I will answer this with the Welsh part of my holiday.

6. What new skill, if any, have you acquired this year?
I don't think that I've actually acquired a new skill this year, but I have developed my crocheting skills, and crochet, of course, was my new skill for 2014.

7. What's the best book you've read this year?
My answer to this goes hand in hand with my answer to question two.  One of the things I need to be able to do to write is to be able to read, but I've hardly been able to read at all this year either.  My concentration for reading has been shot this year, partly because of events - particularly those early in the year - but also because of illness.  My diabetes has developed a lot over the past several months and has made me feel terrible, as well as affecting concentration.  Anyway, as a consequence, for the first time probably in my entire life, I have only read one book this year, and that book wasn't at all taxing.  It was Danny Wallace's 'Random Acts of Kindness'.  I am ashamed of this awful tally, although I know that like the writing, it is a symptom of my state of mind.  I am currently trying to adhere to a kind of reading programme agreed with my psychologist so that I can read a book that she is keen for me to read.  I am looking forward to being able to read again.

8. What has been the biggest challenge of this year?
My health.  It is always a challenge, but there have been more challenges this year, particularly with the development/worsening/instability of my diabetes.  I have also had a huge number of infections that have required something like thirteen or fourteen courses of antibiotics throughout the year.

9. What is your happiest/fondest memory of this year?
I have two that are of particular note.  The first was a moment with my younger brother, C, that I can't fully explain.  It was in the couple of days I had in Cambridgeshire after my Addenbrooke's hospital admission, and in my brother's back garden.  I can't really describe the moment adequately, but it was a moment of closeness with him ... a unity and togetherness.

The second happy memory was an afternoon I had a couple of weeks ago with my nephews O and D.  My brother, M, and his two children were visiting from London, primarily so that M could sort a few things around Dad's will/belongings.  He only had one full day to do this so I offered to look after the boys for the afternoon on that day.  I took them first to Vincenzos for lunch - they're big fans of pizza and have been to Vincenzos lots of time before with me and my brother, and in the past with Dad too.  After that we went to the Centre for Life where they had a brilliant time for the next four hours!  I hardly ever get to have my nephews to myself like this so it was a very special day for me, and I know that the boys enjoyed it too.  M had given O their emergency mobile so he could call if anything went wrong with me (health wise), and also if he just wanted to call.  O decided he did want to call his daddy while we sitting in the planetarium just so he could tell him what an excellent time he was having, and that he was very excited that he was about to watch a film about something called Hubble 25.  I had explained that Hubble is a big telescope and camera in space and it's been up there for 25 years, all of which really grabbed O's interest.

10. Of what one creation of the past year are you most proud or pleased?
Hmm, this is tricky as I've made a few things that I've been really pleased with, but I guess one of the things that I was very pleased with was a Christmas present I made for my friend R - some planter labels I painted on small wooden spoons.

This isn't the best photo, but it's the only photo I have of them, and it was taken before they were varnished.  Mind you, the varnish was satin so it didn't make them particularly shiny.  It was more for protection of the paint than anything else.

11. What new hobby did you take up/old hobby did you reinstate this year?
I don't think I did take up a new hobby this year, and I didn't really reinstate an old hobby either.  However, there was quite a time over the summer and early autumn that I didn't do much crochet other than the blanket I've been working.  I started a 3-6-5 blanket on 1st January 2015, doing one hexagon a day every day of the year.  With times in hospital and other times of being ill at home I got very, very behind at points, and although I eventually managed to catch up with making the hexagons it took me until sometime in October (I think) to catch up with attaching all those hexagons onto the blanket.  I did manage to catch up, and I actually finished making and attaching the last hexagon at 11.30pm on 31st December 2015, and that was including the few extra hexagons that I had to do to make the blanket a finished shape.  I've spent a fair bit of today working on the border/edging of the blanket, but think I ought to finish it completely over the weekend :)

12. What one thing would you really like to do next year?
There are a few things I can answer to this.  First, I'd like to write more ... write something.  Second, I'd like to lose weight and get a bit fitter.  Third, I'd like to get a haircut with a new style.  The third one is most immediately achievable, and I'm planning on making an appointment at the hairdressers for next week.

13. What was the saddest thing this year?
This is an easy one to answer.  The death of my dad, and then this so immediately followed by my precious Isobel Artemis going missing and never returning.

14. What has been your best discovery of this year?
Two things - the beauty of the part of Wales that I went to in September.  I hadn't been to Wales since I was a child, and never to the southern part of West Wales that I went to this year.  I fell in love with that part of Wales, and it was a brilliant discovery.

The other excellent discovery of this year was a recipe for barbecue sauce that I can have (providing I use a Becky-friendly balsamic vinegar, which isn't easy to come by).  Oh, and this Becky-friendly barbecue sauce goes amazingly with the unlikely deliciousness that is barbecued gem lettuces.  Try them, they're amazing, and make lettuce into something that's actually exciting!

15. What news story of this year has had the biggest impact on you/do you most remember?
Gosh, there have been so many terrible things in the news this year, but I think it's probably been the European refugee crisis, and also the African Ebola crisis.  Both are/have been truly awful, and the migration/refugee situation shows no sign of abating.  I have also been appalled by the UK government's response.

16. What's the best film you've seen this year?
I've only been to the cinema twice this year.  The first time was just a few weeks ago when I tried to go and see 'The Lady in the Van', but it was sold out so ended up seeing 'Brooklyn' instead.  The second film I went to was a couple of days ago when I went to see 'Carol' with my mum and step-dad when I was up with them for Christmas. 'Brooklyn' and 'Carol' are very different films and difficult to compare, but perhaps 'Carol' just pips the other to the post.  Not sure.

17. What was your best buy this year?
No hesitation at all in answering this.  By far my best buy was my gorgeous and delightful kitten Katinka Manjulika.

She is gorgeous, nutty, and has brought me so many smiles and huge laughter.  My precious girl.

18. What has been your best day out this year?
I think probably the day out I mentioned before with my friend Ruth when we went geocaching up at Bamburgh and Holy Island.  It was a day of great fun, great friendship, great weather, great laughter, great silliness, and of pushing myself to do more than I would on my own.

19. If there's one thing you did this year that you'd do differently if you could, what would it be?
I've thought about this, and I'm not sure there's anything major major major that I would do differently, but to put a bit of a spin on the question, if I could have fallen differently on 30th July when I fell in the park whilst trying to show some young friends what fun geocaching could be then I would.  I would have fallen so that I just fell and got muddy rather than fallen and torn my ACL and MCL (in layman's terms, I badly hurt my knee), with which I'm still having problems and for which I'm still having physio.

20. Is there anywhere you'd like to visit next year?
I'd like to go back to Cambridge and not end up in hospital.  I'd like to see my brother C and his family again while I'm down there, catch up with some other friends who live in that direction, and also meet up with my older godson who's now at university in Cambridge.

21. Name one thing that you did this year that you'd like to do again?
I'd love to have my nephews for the day again.  I'd love to take them out somewhere else, perhaps for the full day, doing other fun things, and have another day on my own with those gorgeous boys.  I love being an aunty.

22. Who gave you the best advice this year?
Oh gosh, I don't know.  It was probably my psychologist who is great at giving advice.  Maybe it will turn out to have been the kind of reading programme I'm meant to be doing and before long I'll be back to being able to read.

23. What new skill would you like to acquire next year?
I think I want to learn to knit.  I love crochet, but you can do different things with knitting and I'd like to be able to do those different things.  I've bought a book from which I'm hoping to learn, and it's in the same series as the book from which I learnt to crochet, so I'm hoping it will work for me.  I have lots and lots of yarn, so the only thing stopping me from starting to learn now is the fact that I don't yet own any knitting needles.  Quite a stumbling block, come to think of it.  I'll have to do something about that in the next little while.

24. What was your favourite TV/radio programme this year?
Okay, this is where I have to confess to my guilty secret of the latter part of the year ... Hawaii Five-0.  It's much more violent than most things I watch, but it is also complete escapism, in part because they always catch the bad guy in the end.  Most of the time it takes itself a bit too seriously, but there are times when that slips and you see it almost mocking itself.  I've been watching all the episodes from all the modern series and loving them!  Also, the theme music is fabulous!

25. What would you like to make more time for next year?
Probably writing.  And reading.  I need to be able to write.  I desperately want to be able to write, and not just my blog, but the other things that I wish I'd been able to write last year.

I think I also need to make more time for time with friends.  I have seen friends this last year, definitely, but there have been great swathes of time when I haven't seen many friends, mainly because I've felt so poorly so much of the time and haven't had the energy to go out and meet up with folk.  And leading on from that, or perhaps incorporating it, I need to make more time for church.  Again, I haven't got there much over the past year because I've felt so ill so much of the time, so I'm hoping to be able to get back to church, and because many of my friends also go to church I will see them more too.

26. What has been the biggest disappointment this year?
Hmmm...this is a tricky one to answer.  I know what the answer is, but I'm not sure it's something I want to put into the public domain.  Let me see ... I guess it's the way a particular relationship turned out.

27. What was the best or most enjoyable concert you went to this year?
I went to two concerts of particular note.  The first was The Proclaimers, which was excellent, but it's the second that gets my vote for the best and that was Bellowhead.  They are the most excellent band who I have always loved seeing live.  They fill the place, whatever the place, with joy, and I have always come out of their gigs feeling, 'This is what living is about!'  Extremely sadly they are disbanding after something like thirteen years together, so the gig I went to at the end of November will be the last of their gigs that I ever go to, but it was absolutely fantabulously brilliant with dancing not just in the seats, not just in the aisles, but dancing around the aisles - folk doing the conga around the auditorium.  Such a brilliant atmosphere, and all the guys and gals on stage obviously loving it too.  As my seat (or rather, wheelchair space) was on the far side of the auditorium from the exit I had to wait until most folk had left before I could cross the auditorium to go.  However, while I waited for people to leave I noticed that a couple of the band members had come back onto the stage to clear away their things, so I took the opportunity to trundle over and ask if they'd sign the CD I'd bought in the interval.  They were lovely, friendly, chatty, full of the joy of the gig, and had no qualms at all about signing my CD :D

28. What do you think was the best thing you did for yourself during the last year?
To be a cryptic, I allowed myself to be honest with myself about something that has been surprisingly liberating.

Something completely different and about which I have no need to be cryptic, getting Katinka was definitely a brilliant thing to do for myself.  I know some folk have reservations about me having a cat because of my lungs, but sod it, I'm ill without a cat so I may as well be ill with a cat.  And most importantly, Katinka has brought back my smile and she gives me so much joy.  I was completely miserable after Dad died and Isobel went missing, and ever so lonely.  Katinka has renewed a life in me that was fizzling out and I love her to bits.

29. What is the biggest difference in yourself from this time last year?
Hmm, I'm not sure that I am terribly different in any very significant way ... unless I refer to my cryptic answer to number 28, and that's not actually a difference...

30. What are you most looking forward to about next year?
Having fairly recently been started on insulin for my steroid induced diabetes, I am looking forward to feeling significantly better than I have for quite some time.  After a steady and steep progression in my diabetes, and several times ending up needing to go to A&E with very high blood glucose levels, my GP referred me to the diabetes centre at one of the city's hospitals.  It took several weeks for the referral to come through and for the appointment date to arrive, but once I got to see the consultant I was very impressed, and have continued to be extremely impressed with the service the diabetes nurses provide.  They are gradually titrating up my insulin dose (currently on 18 units of biphasic insulin) and I am in very regular contact with the diabetes nurses while they do this.  I will be seeing the consultant again in three months, by which time I'm hoping to be feeling a huge improvement.  I'm already feeling a lot better than I was, and it's only as I begin to feel this improvement that I realise quite how utterly dreadful I had been feeling the entire time before, so roll on the rest of the improvement!  I can't wait!

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)

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.

Wheels

This week has been a bit crazy, which is why I haven't been around these parts much.  It's daft because it's exhausting me, and so ultimately it's counterproductive, but sometimes it's just how things work out.  One of the things I've been doing this week is test-driving WAVs (Wheelchair Accessible Vehicles), doing three test-drives in two different models of car. 

On Tuesday I tried the Renault Kangoo.  The guy from the conversion company - Bill - took the car round the back of the house where my wheelchair access is and I met him in Taz.  He showed me how the ramp worked, and although it was light enough as it was power-assisted, I think it will be too much with the POTS because the bending and standing affects blood pressure, which I don't maintain well at all.  It was quickly decided that I'd need to apply for a grant to cover the cost of a powered ramp (£1200), so that was a very useful thing to discover and discuss.  When the ramp was in place I steered the chair up it and into the car, and then secured it down.  All very easy, especially as I don't need to be in the chair once I'm in the car so I can reverse the chair up the ramp without actually sitting in it, and there's loads of space for the chair both on the ramp and in the car.

Time for the test-drive itself and all started smoothly enough, but a few minutes down the dual carriageway I could hear a kind of clicky flappy sound that I mentioned to Bill.  He said he'd run over something in my street when he was driving the car round the back, and had hoped he'd avoided getting a flat tyre, but now he wasn't so sure.  Only minutes later, whilst caught up in the middle of a load of road works, the car was bouncing and making a pflp pflp pflp noise.  Yup, we had a flat tyre.  I pulled in amongst the road work cones, Bill got out, confirmed the flat tyre, and proceeded to get out the canister of foam stuff that is supposed to fill a flat tyre until you can get to a garage for a new one.  It seems that most new cars don't come with a spare wheel these days, and this was certainly the case with the Kangoo.  Unfortunately, it turned out that the canister didn't have enough foam in it to fill the Kangoo tyre either, so it seemed like we were a bit stuck.  The guys doing the road works (actually, they were gathering the cones in) reversed their truck up the road, parked behind us, and came to see if they could help, having thought that they might be able to change the tyre for us, but of course with no tyre to change they were left just standing looking at the flat tyre that was now partly filled with foam.

The two road works men and Bill stood around for a bit looking at the floppy tyre, and wondering what to do.  Bill then decided to phone his office, which is attached to the garage where they actually make the converted cars they sell.  It's only a few miles away from where we'd broken down, so he asked if someone could come along with a new wheel and fit it to the car.  However, the road work men needed to get on with collecting the cones in, so I had to move the car with it's flappy tyre a little way down the road into a bus stop.  This rather annoyed a bus driver a little later on who thought I'd just parked there for fun.

We waited for what seemed like ages, but it gave me the opportunity to think of questions about the car, try out the radio, discuss grant applications, have a little peek around the car (in a very limited kind of way as I wasn't about to get out and walk amongst the traffic), and then get bored of waiting.  Eventually the bloke from the converters garage arrived with the new wheel and a car-jack.  Bill got out of the car whilst I stayed in it and got tipped up sideways while the garage bloke got the car-jack into place.  This was not the most relaxing situation to be in as I was, by then, being tipped towards the traffic moving speedily past me at rather close quarters as the cones had now all been removed and speed restrictions lifted.  I don't recommend finding yourself in this position if you can help it.

At last the wheel was changed and we could continue on with the test-drive, which only lasted another fifteen minutes or so, but it had taken over an hour and ten minutes to do a twenty five minute (if that) drive by the time we got back.  We sorted Taz, getting him out of the car, and I came back in the flat while Bill drove the car back round to the front.  Just as I was parking Taz back up in the living room I realised that while we were out, the cat had weirdly pooed on the living room floor.  He never does that, and there doesn't seem to have been any reason for him to do so this time either, but it really was not what I needed to come back to.  I swiftly cleared that up and then opened the front door for Bill to come in so we could both have a well-deserved cup of tea while we filled in the Motability assessment form.

Although I was due to test-drive a Citroen Berlingo with a different converter company on Friday, I arranged to do one in a Berlingo with Bill on Saturday as well.  Bill suggested that I speak to Motability in the meantime to discuss the possibility of grants.

So a guy called Phil came with a Berlingo on Friday.  At first glance it seems pretty similar to the Renault Kangoo, but when actually driving it felt different - better acceleration, less like a van and more like a car, a bit quieter, a bit more refined.  I went the same route on this test-drive as I had done on Tuesday.  This time there were no flat tyres, but at almost the exact same spot that Bill and I had got the flat tyre, we got caught up in the almost immediate aftermath of a crash between a car and a small truck, probably because the road works cones were out again and someone wasn't paying attention.  Thankfully the accident didn't look too awful, but several police cars and an ambulance quickly arrived on scene.  We got through the backed-up traffic eventually and continued on with the test-drive without any more events, but it hadn't been a very quick journey.  Anyway, the upshot was that I preferred the Berlingo to the Kangoo, although I didn't like the ramp provided by this converter company as is didn't fold so blocked most of the view out of the back windscreen.  Oh, and this conversion company said that they can't'/don't do powered ramps, so that kind of rules them out of the picture.  Not that I mind very much, because Bill's company is local and I like supporting local business.

Bill came back on Saturday with his Berlingo, which also had three back seats as opposed to only the one in the car that Phil had brought.  Phil had said that the XTR Berlingo (top of the range one that he brought) only came with the one back seat, but one of the things that had originally attracted me to the Berlingo was the possibility of having all three back seats if I wasn't taking Taz.  Well, Bill and I worked out that it would be possible for me to get Taz into the boot of the car and still have two back seats up and able to be used as I wouldn't need any leg space for the wheelchair as I won't be travelling in Taz.  This is a huge advantage.  Also, if the hospital could adapt the fitting of the control panel on Taz so that it swings sideways or slides out of its current position, then I'd be able to have all three back seats of the Berlingo available for passangers or for luggage storage whilst still having Taz in the boot.  It was a tight squeeze, but Taz fit snuggly and safely, and it would mean that on a long journey I could put luggage on the back seats and have really easy access to Taz at any service stations I stop at.  Bill also said that they could fit a bit of carpet onto the ramp for me to stop the metal ramp tapping against the metal back of the wheelchair.

The Berlingo Bill brought on Saturday was a VTR, so the model down from what Phil had brought, but also the model that I'd most likely get funding for as the XTR has an extra £700 advance payment.  Having said that, Bill said that his company are providing the VTR Plus at no extra cost until the end of March, and that has a few little extras which would be nice.

For once, the test-drive went ahead with no dramas - crashes or flat tyres or anything else - and I enjoyed the drive of the Berlingo again.  I think I'm also beginning to get a bit more used to the idea of needing a WAV, so am beginning to be able to enjoy the process of choosing the car.  I've pretty much made up my mind that the Berlingo is the car for me at this time, so the next step is to apply for grants.

I spoke to the grants department at Motability on Friday afternoon, at first, after an initial basic assessment, being told that I wouldn't qualify for financial assistance.  I thought I had explained what I needed, but I obviously wasn't clear enough, because the woman doing the assessment seemed to think that I was asking for assistance for a vehicle that would allow me to drive from my wheelchair.  I don't need that, and I'm not suprised that I don't qualify for financial help for a 'Drive-from' WAV.  After questionining my eligibility for a grant, and working out the misunderstanding, the woman did another initial assessment that indicated that I would most likely be eligible for financial help, although she couldn't give me a definitive answer.  I still have to make the official application, and she sent me the application forms straight away.

I've spent some of today filling in the grant application form, and printing off some of the required accompanying evidence, although I still need to get a letter from my GP and then sort some of the other paperwork.  However, once that's done then I'm pretty much ready to send the forms in, and Bill said that Motability are currently getting through applications quite quickly, so he reckons that I could be getting delivery of my new car by early/mid may.  Obviously I can't place an order for the car until I know what funding I have, but things are now getting sorted and a resurgence of my independence is in sight.

Getting out

There's a good chance that I'll be going home tomorrow!  Hurrah!  On Saturday the SHO suggested that I aim for home on Monday, but then the registrar came in and said that if I didn't feel ready for home on Monday then I mustn't go.  I haven't felt ready so I haven't gone, and actually I started sneezing again yesterday :o(  I am desperately hoping that this isn't the start of yet another infection that's going to make me bounce back again.  Anyway, with this, and with general recovery, I wasn't right for home today, and when the reg saw me this morning he suggested tomorrow at the earliest.  Then my consultant came round and he clearly didn't think today was a good day for me to go home, and even seemed slightly surprised at the suggestion of tomorrow, but I'm hopeful.  Mind you, Dr H wants me to give another sputum sample before I go as he wasn't totally satisfied that the pneumonia bugs aren't creeping back from what he's seen that I'm coughing up.  I know that if I'm not right tomorrow then I mustn't go home despite how desperate I am to do so, but I think I should be okay.  I'm crossing everything.

I've been for a couple of trundles off the ward the last few evenings that W has been in.  Twice we've done a circuit of the outside of the hospital buildings (still within the hospital grounds), but this evening we got up to mischief.  This evening we went to the park across the road from the hospital, stopping on the way over at W's car where we picked up the fireworks we've been storing up since November :oD  We'd bought the more expensive ones this year, and we could really tell the difference from the cheap ones we've had in the past.  For starters they lit so much easier, but more importantly, the fireworks themselves were bigger, the bangs louder, and they were generally more impressive.

We positioned ourselves at the far end of the field directly opposite the hospital, but down the path that runs by the side of the field so that we didn't have all the lights from the passing cars shining directly onto us.  We then unpacked the first box of fireworks.

One by one, W set them off, and here are a few photos of some of them:

We, or rather W, soon learnt that she'd need to light the fireworks from a further distance than we've done with the cheaper ones in the past as we kept being hit by flying debris, but thankfully none of it was alight.  I had visions of us returning to the ward saying, 'So erm, we've been up to mischief, and whilst I can still breathe, we've both got third degree burns.  Anything you can do to help?' ;o)  Thankfully, the only thing we came away with was the giggle for having been up to so much mischief whilst I'm still a hospital in-patient.

Before we were ready to set off back to the hospital we had one big box of 24 fireworks - one fuse to light and the whole lot went off in a storm.  Here's W with the box just before taking it almost to the middle of the field.

It must have lasted only a matter of twenty seconds or so (if that), but it was spectacular. 

There were more than a few boxes and cartons to tidy away afterwards, and as you see in the second picture below, the box from the set of 24 on one fuse wouldn't fit in the bin.  We're wondering what on earth the council workers will think when they come across the dead fireworks box in the morning.

I wasn't sure whether or not I was going to tell the staff what W and I had been up to, thinking they might then blame any chest-tightness through the night on the fireworks.  I left it a while, but have since told the nurse looking after the patients on my end of the ward what I did on my excursion off the ward.  She thought it was great!  She also said that they could hear the fireworks on the ward and the health care assistant had asked if that was fireworks she could hear.  The nurse had apparently replied, 'I hope so, because otherwise it's a major gangland shooting going on!'  I showed her some of the photos of my and W's antics this evening and as she left my room she said that I'd really cheered her up :o)  The antics really cheered me up too :oD

Festivities

I seem to have entirely avoided talking about Christmas and New Year here, but I have been very much immersed in the festivities in reality.  I've actually been celebrating Christmas and it's joys since at least a couple of weeks before Christmas Day, so I thought I'd tell you a little about what I've been up to.

Back at the beginning of December, somewhere around the 8th, W and I had been planning on going to the Enchanted Parks event at Saltwell Park, Gateshead.  We'd booked our tickets a while back and were looking forward to it as we hadn't managed to get to it last year because the weather was so awful (deep snow and temperatures of -9C).  Unfortunately there were huge gales on 8th December and Gateshead council decided to cancel the Enchanted Parks event for that night.  We were disappointed, but the disappointment was short-lived as we were offered alternative tickets for the Saturday evening.

I met W outside the park, having gone in Taz on the bus.  This made much more sense than W traipsing all the way over to Newcastle and then coming on the bus with me as she lives not too far from the park.  I hadn't been sure how long it would take me to get there on the bus, and in fact I was a little early, but I sat chatting to the nice folk manning the gates while I waited.  You could see from the outside that something was going on in the park, and the sky above the big field was lit with searchlight-like strobes that made me think how things might have been during WWII ... perhaps made all the more evocative by my reading a book at the time set during WWII.

Anyway, W arrived and we made our way into the park, which was far from war-like.  The main path up to the ticket office had its trees lit in multicolour, and there was a sense of party and celebration from all who headed up towards the event.

The event was a show of light and sound and sculpture, taking the viewer through the darkness of the park and surprising us with what was presented.  Here are few of the highlights:

These snakes were attached to a huge head made from a tree stump/root.  They were a kind of representation of Medussa, and there was some eerie music eminating from the surrounding area.

The old building in the middle of the park was opened up for refreshments.  We didn't make use of the refreshments, but we did watch as the projected kalaidescope lit the building outside, and the patterns changed as people queued up with their selection of shapes to be shone onto the walls.

The bandstand was dripping in lights and looking magical in the darkness.

A fabulous ice sculpture with changing colours.  When it was lit orange or red it felt wrong that it was cold to touch.  All my senses were expecting heat, even though I knew it was ice.  I loved this sculpture - probably my favourite piece in the event.

Although I did also very much like these bird cage-like sculptures hanging in the trees as well.

Time for a light tea, perhaps?

A selection of the lit trees and foliage from around the park.

It was a very enjoyable evening, and thankfully not too cold.  However, Taz hadn't been completely charged up when I'd set off as I'd gone out earlier in the day, so I almost didn't make it back.  Taz's battery indicator was flashing on one red bar by the time I got home and I nearly came to a stand-still before getting home.  Thankfully turning Taz off when on the bus allowed it enough of a break to see me home and parked up in the living room, but it was a very close call, and Taz only just crawled into place.

So that was the Enchanted Parks.

On 16th December W and I had Christmas together.  She came over to my house in the afternoon and we had Christmas dinner consisting of a vegetarian loaf thingumy I'd made with lots of sagey flavours, and of course we had all the roast dinner accompaniments - roast potatoes, roast parsnips, carrots, sprouts in sage and lemon butter, and homemade crab apple jelly.  This was followed by a time of present swapping and 'slump and grunt', before W prepared pudding in the slow cooker and we went out to Gibside in the evening.  Gibside is a National Trust property, and every friday night since the summer they've apparently been doing a beer tent and open fires between 6-9pm.  On 16th December they also had carol singers and had a stand for hog roast and mulled wine.  Neither W or I were up for the hog roast (I'm vegetarian, I'd probably have been allergic to it anyway, and both of us were stuffed after Christmas dinner), but we did have a drink - I had a Fentiman's lemonade whilst W had a half pint of Legless Santa :oD  We sat around one of the fire grates, warming ourselves from the icy cold (we had a white Christmas that day) as we drank our drinks and soaked up the atmosphere, listening to the carols.  We were only there for about an hour, but it was very festive and a lovely thing to do on our Christmas Day together.

When we got back to mine we had just enough space to squeeze in our chocolate puddings with melty middles.  That is that the chocolate puddings had melty middles, not us ... we had rather bloated middles from all the yummy food.  Unfortunately we had both forgotten to buy either cream or ice-cream to go with the puddings, but W had the fantastic idea of drenching the puddings with Bailey's instead.  Marvellous!  Delicious!  Very, very scrummy!

On 21st I came up to Edinburgh to have actual Christmas with my mum and step-dad.  I've been having a very lovely, very quiet, very relaxed time.  To be honest, I haven't been 100% well (when am I these days?) with some mild lurgies that I think I picked up at the carol service at church on 18th - which was fantastic, by the way.  My lungs haven't been very happy, and I've had very disturbed sleep with lots of coughing and wheezing every night, but I've been very well looked after and have thus far avoided needing any medical intervention.  I think I've got through the worst of it now, so hopefully I'll be able to stay out of hospital throughout this lurgification.

I'm going home today.  My train is at 9pm.  I'll be sad to go home as I've had such a lovely time here, but before I go I get the pleasure of seeing my older brother and his family as they are about to descend on my mum and J for five days and we have a few hours of cross-over time.  I'm sure it'll confuse O (5) and D (3) no end that I'm here, as they found it hilarious when I told them that I was their daddy's sister, so they'll probably find it difficult to comprehend that Grandma is also Aunty Becky's mummy.

Actually, I'd probably better sign off before they arrive.  They're due almost imminently, so I shall brace myself for an invasion of boystrous energy.

Next stop, New Year's Eve at a friend's house.  I think it's going to be a relatively quiet and civilised evening ... far from what I expect of this evening before I head off home.

On the buses

W and I have been to Beamish Museum three times this summer, most recently on Wednesday.  It's a great day out - a 'living' open-air museum, covering a vast area, depicting life in the late 19th century/early 20th century in northern England.  It's a fascinating place, lots of fun and great for all ages.

The first time, W and I went in my car, taking my attendant-assisted wheelchair.  W pushed me around in it all day, and although she doesn't mind doing this, it is a heck of a lot of work, especially on the cobbles and up and down the hills at Beamish.  The second and third times we went, W drove and I got the bus so that I could go in Taz (my electric wheelchair) - much better all-round, although it did mean a pretty early start for me.

I think the first time I went to Beamish in Taz was in late July.  It means getting a bus from my house into town, and then a bus from town to Beamish, which is in County Durham and takes almost an hour on the bus.  When the bus from town (28) arrived at the bus station the driver informed me that I wouldn't be able to get on the bus because the ramp was broken, but then it transpired that because this bus service is advertised as accessible, and it was the bus company's fault that this particular bus wasn't accessible, they have a legal obligation to get me to my destination.  The bus company ended up paying for a taxi to take me from Newcastle to Beamish, costing them £28.80.  I was told that the same thing would probably happen on the way back.  The route is covered by the numbers 28 and 28A buses, both of which do a circular route, though ever so slightly different.  As it turned out that day the weather was atrocious so W and I abandoned our Beamish visit after 4 hours of getting soaked, and the first bus that came was the 28A, the ramp of which was working fine.

I thought that the ramp on the 28 would probably have been fixed by the time we went back to Beamish on Wednesday, but it turned out not to be.  Again the bus company paid for a taxi to take me from Newcastle to Beamish, this time costing them £15.50 (they used a different company).  After a fantastic day together (about which I'll do another post sometime soon with some photos), W and I headed for the exit and the last bus (W waited at the bus stop with me before she drove home).  It arrived, and it was the 28 with the broken ramp, so we had to go through the rigmarole of having the bus driver phone through to control to get them to sort out a taxi and to pass on my details so control could phone me back and let me know how long I'd have to wait.  The call took longer than usual to come through on my mobile and when it did, control were ever so apologetic, but they couldn't get me a taxi as it was rush hour and all the taxi companies they'd tried were busy.  Instead they were sending a bus from not-too-far-away Chester-le-Street to take me to Newcastle.  A whole bus just for me!

While W and I waited for this personal bus service to arrive, a family of three generations came to the bus stop to find that they'd missed the last bus back to Newcastle.  They weren't very happy.  I explained my own situation and said that if they were sending a whole bus just for me then it'd be really mean of the bus company to refuse to take them too, seeing as I was going exactly where they wanted to go.  We decided that we'd team up and they could chance it.

Then the bus arrived.  Not only did I have a whole bus to myself, but I had a whole, bright pink, double-decker bus!  All for me!  Just me (so far as control were concerned)!  Well the bus driver was a cheery fellow and he had no qualms at all about taking the additional passengers, and he let them all travel for free :o)  I get free travel on the buses anyway as a disabled passenger :o)

But the saga wasn't over.  No.  Just as I was getting on to the private, pink monster-bus, the 28A doing it's last journey for the day to Chester-le-Street pulled up at the bus stop and said that control had been on the radio saying that we may have to swap buses because they suddenly realised that the double-decker wouldn't be able to get under a low bridge on the 28's usual route.  It would've made sense to swap the buses over as there were only 7 of us on the pink monster-bus, whereas the single-decker 28A was jam-packed with people standing in the aisles.  However, it was decided that the pink monster-bus would divert from the usual route of the 28, at first going all round the houses and then onto the A1, so as to avoid the problem low bridge.

After setting off, the driver put some lights on for us inside the bus, then he started playing with them, flashing them on and off saying that it was party time and he thought we should have disco :o)  I was secretly glad when he didn't continue playing with the light switch as he drove us round some fairly twisty roads.  Then he said that we needed some music, but he didn't have a stereo so someone should sing.  Well the family of three generations had two very young children amongst their number, so they started off singing 'The wheels on the bus go round and round' :o)  It was all very jolly, and totally, totally mad.

:o)