For one night only

I've been away.  I went for one night to Arnside in Cumbria with W.  The plan was to go away on the Friday, spend the night in the youth hostel, and on the Saturday go to South Lakes Animal Park to meet the giraffe that W sponsored for me for my birthday.  Although the weather wasn't great we had a lovely drive over Hartside Pass, stopping at the top to picnic in the cafe car park, taking in what we could see of the view over to the Lake District.  There's something about W and I that seems to curse the weather, and on almost all of our days out it buckets down with rain, and Friday 8th July was no different, but as ever, we weren't going to let it spoil our fun.  Onwards to Arnside.

We arrived at the youth hostel at around 3pm, but couldn't book in until 5pm when reception would be open again, so we went for a wander down the path from the hostel to the 'prommenade'.  The grandly named promenade that's actually little more than a small pavement, runs along the edge of the Morcambe Bay estuary with its fast-changing tides and sinking sands.  Needless to say, we didn't venture onto the sands, but followed the promenade to the shops on the waterfront, where W bought an ice-cream (actually it was 2, because she had to have one for me as well ;oP ), and I bought a bottle of Peroni for later on as we planned to come back down to the waterfront later to watch the sunset while we had a drink in celebration of W passing her graduate diploma.

Taking a bit of time to relax and get into holiday mode, albeit for only one night, we sat on a damp bench on the 'pier', getting increasingly wet ourselves as the rain clouds rolled in, and we heard thunder rattle off the mountains to the north.  After I'd finished nebulising, we decided that maybe it'd be best to go back to the youth hostel and wait inside for reception to re-open, so off we toddled.  But it wasn't quite as easy as that, because the path up from the promenade to the youth hostel is really quite steep, and my rubbish old lungs aren't that good at 'steep', so I had to take it slowly, and breathlessly, and getting wetter as the rain got heavier.  In the end we both made it up the hill, stumbled out of the rain and waited in the youth hostel kitchen for an hour when reception opened again.

It seemed rather ironic that two severe asthmatics should be allocated a youth hostel room right at the top of the building, but so it was.  However, we did appear to have the seven-bedded room to ourselves, and there were great views on two sides of the estuary, so after making up our beds we rested a while, enjoying the views and taking time to relax some more before dinner.

When we went down to make dinner I decided that I'd take things with me to do in the lounge afterwards so that I wouldn't have to climb all the stairs again.  So after dinner, W and I sat in the lounge chatting, drinking Peroni (although W had champagne), and doing cross-stitch, while it rained rods outside.  It looked as though our plans to watch the sunset by the waterfront weren't going to happen, but then sod it, we decided that we'd go down to the estuary anyway and watch the rain go down instead of the sun.

Back we went down that steep path from the rear of the youth hostel, and along the prom the other way this time, not that we could go very far before the path disappeared into the sand.  We saw a couple of herons flying over the sands a little further out, and one flying from the tree tops, and then we realised that the thunder was getting louder, the storms were getting closer, and perhaps it'd be best to go back and dry out.

The path back to the hostel was more of a challenge this time, I think in part because I was tired, and in part because of the muggy, thundery air.  It was a real struggle, and I had to stop several times whilst W soldiered on ahead.  I could feel my lungs tighten and knew that some serious nebulising was going to have to happen when we got back inside, and indeed, by the time we got into the youth hostel I was wheezing well and knew that I'd be stupid to try to climb the stairs to the dormitory before nebbing, so we went into the lounge instead.  Thankfully it was quiet. 

I'm more than used to using my nebuliser in public, and it doesn't bother me, but I can't say that I like an audience, especially if I'm feeling ill, which I was beginning to confess to myself that I did.  More than anything, though, the overwhelming feeling was one of being pissed off.  I had come away for one night of fun and relaxation, and celebration of W's graduate diploma, and to meet a giraffe.  How dare my lungs play up now.  I was going to neb them into submission.  At least, I was going to try to.

An hour and a bit later, with five nebules of salbutamol, 500mcg of ipratropium, and an extra 25mg prednisolone on top of the 60mg I'd already taken in the morning (my current maintenance dose), I was only very slightly better ... or perhaps that should be, only a little less bad.  I was struggling and I'd run out of options.  W asked if we should go to hospital.  Speaking only a word or two at a time, I replied something along the lines of, 'The problem is that I'm in no state to drive, you're not insured to drive my car, and we don't know where A&E is.'  Then W pointed out that the NHS have their own transport services, and I realised with an explosion of expletives in my head that I was obviously losing all ability to think clearly - a very bad sign - and that I was most likely not going to meet my giraffe, but instead end up in the back of an ambulance.

W went off to reception to get help.  The man sitting on the sofa in the window opposite told me he was a district nurse.  He said he was impressed with how I coped with my illness, without a flicker of panic, but my primary reaction being one of pissed off-ness.  W came back, closely followed by the First Responder Unit (FRU) paramedic, who W had already genned up with my medical history and the course of the evening's events.  The paramedic was lovely, but there was something unconventional about her.  I couldn't work out what it was.  I sat, breathing in her oxygen-driven nebuliser with a pulse oximeter on my finger, while she asked W to phone ambulance control to make sure an ambulance was on its way, when it struck me - although the FRU paramedic had on her shiny, hi-vis, paramedic jacket, underneath that she was wearing pyjamas!  This was rural ambulancing, and she'd obviously been tucked up in bed when the emergency call had come through.  Bless her.

It was only a matter of five minutes or so before the paramedics arrived with an ambulance, into which I was quickly bundled.  They tried to get a cannula in, but my veins are so buggered from all the cannulations over the years (hence my portacath, but you have to be trained to use it) that they didn't have any success.  Instead of IV hydrocortisone, I was given an IM dose instead and then whizzed at great speed on sirens and blue lights along the country roads, and down the M6 to Lancaster, where upon I found myself in the A&E department of the Royal Lancaster Infirmary (RLI).

The doctor I saw in A&E seemed rather scared, not terribly confident, but also reluctant to ask any seniors to get involved.  He did okay, overall, although didn't actually get me any better in the three hours I was under his care.  To be fair, though, he did take on board my treatment protocol from my consultant that I carry with me, and he started the aminophylline infusion before sending me off to the Medical Admissions Unit (MAU).

I have to say that I was impressed with how they dealt with me in MAU, and also with how they treated W.  I was seen quickly by the junior doctor, who soon realised that he was going to need advice from his senior so got the registrar (SpR).  The SpR was a lovely man - ever so gentle - who made sure that W was okay, and asked if she had any questions.  He also recognised that I know my disease better than they do, and that W also knows how things go for me with attacks too, so he regularly checked in with us to see how we thought things were going.  He was also quick to get ITU on the case, and they were quick to assess that I needed BiPAP and transfer to ITU.  I definitely wasn't going to meet my giraffe.

W had work the following day so had to get back to Gateshead.  This meant that she'd first have to find her way from Lancaster back to Arnside, where they youth hostel team would hopefully let her get some sleep before booking out and trying to find her way from Arnside to Newcastle, where she'd left her car outside my flat.  Loathed as she was to leave me, she had to, and it was only a little while after she left that I was transferred to ITU.

The care I received in ITU was great.  They were lovely.  They were on the ball.  The consultant (Dr W) who was on over the weekend happened not only to be an ITU consultant, but also a respiratory consultant, and he was fantastic.  He immediately liaised with my care team here in Newcastle, and I had absolute confidence that I was very capable hands.  I stayed on BiPAP for about thirty six hours, and in ITU for four days before I was well enough to be moved to the respiratory ward, but Dr W said that he was more than happy to keep me under his care whilst I was in the hospital, given how ill I had been and how complicated, difficult and brittle my asthma is.  I think this was something of a relief to the doctors on the resp ward.

I'll blog more about the resp ward in my next post, but I'll leave this here for now.

Progress

It's far, far too long since I blogged.  Apologies.  I had my first meeting with my PGCert portfolio supervisor so I've been spending some time writing, and a lot of time fretting that I haven't written enough.  In the end I sent my supervisor the miserly 1254 words I had written, and ended up getting some good comments, although I did promise to write considerably more by the time we next meet.  I'd better get to it though, as our next meeting is on 21st July, which is approaching far too quickly :o/

Now then, back in May I blogged about how I can't get into my local pharmacy because they have no disabled access.  They assured me that they'd finally been given planning permission for a temporary ramp, and I speculated on what a 'temporary ramp' might be.  Weeeeeeeeell, I went to the pharmacy on Friday, and was pleasantly surprised to see that they had at last had a doorbell fitted so that wheelchair users could now attract the attention of the shop keepers without having to rattle the letterbox while the door automatically closes on our faces.  After pressing the new doorbell, I wasn't entirely sure that it was working because I didn't hear any tell-tale ringing, but a minute or so later one of the assistants came to the door, and then asked if I would like the ramp!  Would I like the ramp?!  Of course I would like the ramp!  I would love not to feel like a second-class citizen waiting out on the street next to the dog that's been tied to the bollard whilst its owner has gone inside the shop.  It turns out that a temporary ramp is a foldy-uppy ramp that, although apparently heavy, can be put into place when needed and then stored away inside again. 

It was a real novelty to go inside the chemist shop.  While I was waiting for my prescription I had a little scoot around and looked at all the things I now had access to buy ... and then decided that there wasn't really anything that I particularly wanted to buy at that time.  At least I knew that for myself now.  How very pleasing  :o)

The ramp does look pretty heavy, and for some reason they keep it behind the counter at the far side of the shop.  I rather suspect that the pharmacists and shop assistants are going to get fed up with lugging it around all the time, and if this happens they might just push management for a permanent ramp.  Sooooo, my very basic plan is to go into the store as much as possible, which won't be difficult as I have to go there for my prescription very frequently, and they almost never have everything on my scripts, so I invariably have to go twice for each one.

Progress, definite progress, but my quest for equality of access isn't over yet.  I'll be back into Boots tomorrow for the rest of today's prescription, so I hope the pharmacists and shop assistants have had spinach for dinner tonight ;o)

Busy, busy

Sorry about the lack of postings over the past week.  I've been a tad busy.

I came up to Edinburgh on Saturday to stay with mum for a few days and to catch up with some friends from the Open University, one of whom I've previously only known online.  J and her husband A came up to stay with our mutual friend O, and on Sunday we all got together with another joint friend, F.  It can be odd meeting up with people 'in real life' when you've only ever met in the virtual world before, but as with all the other folk I've met up with from the OU, there was nothing awkward at all about meeting J, and we all had a fab time together.  So much so that we got together again the following day.

I'll write more about what we got up to when I'm back home, but I'd like to include a few photos and I stupidly forgot to bring the cable for my camera up to Edinburgh with me, so I can't transfer pics from the camera to the 'puter.

After a couple of days of jaunting off with friends I settled down yesterday to some study.  I've finished my OU studies now - Hurrah! - but I still have some work to do for my postgraduate certificate, the most pressing of which has been the end of module piece for the last module.  I've been gathering my thoughts for the piece over the last couple of weeks, and I really meant to have completed it by now, but somehow I got tied up with relaxing after finishing my undergraduate studies.  Anyway, I settled to work yesterday and managed to write the piece I needed to write.  All I need to do with it now is print it off and take it into the university for Monday.

Another thing that's been hanging over me is my application for the MA.  It's a natural progression from the PGCert, and should I do well enough on this course then I'll get excemption from the first year of the MA.  So far this is looking hopeful, but it depends a bit on what I get for the piece of work I did yesterday.  However, hopefully I'll get what I need and will be able to move on, but I still need to put in the official application, even if it does seem like something of a formality given that I was last week asked which modules I'd like to do in the MA so they can provide wheelchair accessible classrooms.

Most of the application form for the MA is fairly straight forward, but as on all other academic application forms I've come across, there's that awkward 'Personal Statement' bit.  I hate them.  I hate having to sell myself on paper.  To be honest, I didn't know what on earth I could write that was different from what I wrote on my PGC application last year, and when I mentioned this to someone in the department they said, 'Just put the same.  After all, it worked last time.' :oD  I liked that.  I decided that I'd read through what I'd written last year and probably cut and paste various bits of it, adding any new info that seemed appropriate.  The major flaw in the plan was that the computer seems to have scrambled and eaten the copy I'd kept of last year's personal statement :o(  I spent today coming up with ideas for the new personal statement and then writing it, although it took a lot longer than anticipated as I got terribly distracted by Wimbledon.  After the excitement of the Murray/Kamke match (which wasn't the only match I watched), I eventually got my head together and wrote what I needed to for the MA application.

The other thing that I really need to write is something for my PGC portfolio.  I have the first meeting with my supervisor next Thursday and I have to email her what I've written by next Wednesday evening, the trouble being that I haven't actually written anything yet.  Yes, I've still got time, but I'd prefer not to have made myself be doing it under pressure.  Although I'm going home tomorrow, I'm planning on at least doing some thinking in the morning about what I might write so that I can have it drifting around my head while I drive back to Newcastle in the afternoon/evening.

And when I haven't been writing, panicking about not writing, being distracted from writing by watching tennis on the telly, or meeting up with friends, I've been cross-stitching.  I bought a new one a few weeks ago, and for the first time in years I'm planning on keeping this one for myself once it's done.   I've only just started it, but here's what it's going to look like when it's done:

I love it, although there's a heck of a lot of work involved in it so I imagine it's going to take me a very long time.

So then, back home tomorrow, then a hospital appointment first thing on Friday, followed by a get together with a friend who I haven't seen nearly enough of over recent times, lots of PGC study over the weekend, and onwards into next week.

You're fired! You're hired!

You probably remember that my last hospital admission was triggered by an allergic reaction, and that the most likely cause of the reaction was vegetables not being cleaned thoroughly enough by the carer before cooking.  You may also remember that Social Services were having to conduct an investigation because of the seriousness of my situation.  The investigation turned into a bit of a farse, in my opinion.  'They' asked the carer in question for an account of what she'd done in preparing my meal that evening, which she described, also adding that she didn't think she could have done anything differently.  'They' then decided that I must have developed a new allergy.  Case closed.

I have eaten all the ingredients of the fated meal since then with no reaction.  I have not developed a new allergy.  Case not quite closed, if you ask me.  I made it clear to the social worker that, in my opinion, this is a cop-out, and that I definitely haven't developed a new allergy.  The social worker was apologetic, and acknowledged that 'they' didn't have the clinical expertise to diagnose the development of a new and non-existent allergy without clinical examination, i.e. they shouldn't have jumped to this conclusion simply because the carer said she thinks she washed the veg okay.

Actually, the social worker was lovely, and she came here (to my home) with one of the clinical nurse assessors.  After talking it all through, and discussing my on-going care needs, it was decided between the three of us that a different care agency would be found for me as the current one aren't providing the service they're being paid to provide to an adequate standard.  The social worker left saying that she'd give the agency their 28 days notice.  They're now working this notice.

The social worker told me about a relatively new care agency that allows the client to interview prospective carers, and what she'd heard so far about the agency all seemed to be positive, so I agreed that they might be a good choice.  I had the manager from that agency come round on Tuesday to discuss my care needs, and I was able to stress that whoever comes must be able to cook.  I described some of the experiences I've had with carers from the current agency, and after she picked up her jaw off the floor she agreed that the ability to cook something more technically demanding than a ready-meal was a definite must.

I had a call from the manager of the new agency today.  She's 'identified at least one suitable possibility in their carer pool,' and they're both coming round tomorrow afternoon.  The manager will go through the paperwork that she didn't bring on Tuesday, and the three of us will discuss my 'needs and expectations,' and then I think the carer said that she'll leave me and the prospective carer alone for a while so we can discuss things further and I can ask any questions I may have.

I currently get my domestic care (cleaning etc) provided by a different agency.  I'm not sure how it happened this way, but I've been thinking that it would make more sense to have all my care provided by one agency if possible, so on Tuesday I asked the manager of the new agency about the possibility of getting my domestic care through them as well.  Of course, it'd first have to go through the social worker so that she can discontinue the contract with the current agency, but there shouldn't be a problem, especially as it's a bit of a battle to get the person who comes for my domestic care to do a decent job.  The agency manager said they'd be happy to provide that service too, but maybe I'd want to see how they pan out with the other bit of the care package first, and that it wouldn't matter if it didn't all start at the same time.  This is looking promising. 

So far the new agency seem much more client-centred than the other agencies I've had, even to the point of asking me what time would be good for me to have them come!  No more having my main meal of the day being prepared at 4.30pm - hurrah!

I am - I have been

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

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

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

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

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

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

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

A great night out

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

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

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

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

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

Here are a couple more photos of LBM...

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

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

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

Sew relaxing

I love doing cross-stitch.  I find it relaxing and can get absorbed in it for hours.  It can be a bit of a strain because of the holmes-adie pupil in my left eye, and before the cataract surgery it was impossible for a while, because I simply couldn't see what I was trying to do.  Since then I've loved getting back to it and have spent many hours luxuriating in the peacefulness of the activity.

I've been working on a cross-stitch Mr Men height chart for my youngest nephew.  I'd been hoping to get it done before he was born in February, but studies and lack of breathing ability got in the way, and J was born on 23rd February without me having finished the cross-stitch.  I'd then been hoping to have it done in time to take the finished product to Yorkshire, but that didn't happen either.  However, I did eventually finish it last night.  Here it is:

I'm really pleased with it.  The stitching itself (and the rectification of mistakes along the way) took ages, but then I had to hem it, weight it, back it, and make it into a hanging thigumy.  There weren't any instructions for any of this so I've had to be creative in working out how to do it, which perhaps makes the finished product more satisfying.

I've already started on the next one, which is a sepia-toned harbour scene for my dad's birthday next month.  Hopefully I'll get it done and framed on time.