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

Today is the tomorrow that you worried about yesterday.

Thursday, 22 November 2012

What happened next?

I'm guessing that's the question you're asking after my last post, and my rather hasty exit.  Sorry about that.  I was taken rather by surprise if I'm honest.  Perhaps I should have been expecting to be going in to hospital, but I really wasn't.  I thought that I ought to take my GP's advice and phone my consultant for a plan of action, though I hadn't really thought through that the advice would be 'Go to hospital.  Go directly to hospital.  Do not pass go, and do not collect £200' ... not that I've ever collected £200 on my way to hospital ... although it is the kind of thing I would consider doing in an hypoxic brain muddle, isn't it?

Anyway, what happened is that I came to the ward in a more relaxed way to most previous admissions, ie, not in a life-threatening state, which was good, but also rather strange and I felt like something of a fraud.  However, when the Registrar came to see me she looked rather horrified when I said that my daytime peak flow (PEF) was averaging at around 150.  In fact, the look on her face made me think that perhaps I shouldn't admit that my night time peak flow was more like 90, so I kept that quiet, which really should have been enough to make me realise that I was far from fraudulent...  Then she listened to my lungs.  Again, afterwards she looked at me somewhat aghast and said, 'They sound very, very tight.'  The did feel tight, but as it had been creeping up on me for so long I'd been getting used to it so I didn't feel as tight as perhaps I would have done if my lungs had suddenly clamped down like that.  It's a known phenomenon of brittle asthmatics, and a rather dangerous one too, that sadly increases our risk of mortality.  Thankfully, this time I didn't die and I didn't slip in to crisis.

The main plan of attack (no pun intended) was an infusion of aminophylline to try to get things a bit steadier.  Aminophylline is my wonder drug, but it doesn't kick in straight away, which is often a worrying thing when I'm in crisis as time is something of which I don't necessarily have the luxury. This time it wasn't so much of an issue, except that I was generally exhausted and was desperate for a good night's sleep.  The first night here wasn't to be a good night and I had the same difficulties as I'd been having at home, although perhaps not to quite the same extent.  The second and third nights were slightly improved on the first, though still not great, but the fourth was easier, after which the aminophylline infusion rate was reduced.

I always get nervous at the time of aminophylline weaning because there have been so many times in the past when I've gone right back to square one after aminophylline reduction.  Of course, at these times I'm only just beginning to regain a smidgen of strength after the exhausting fight for life I've had, so then thought of having to begin that fight all over again is both utterly draining and terrifying.  I was still a little anxious about it this time, but not as much since things hadn't been so awful at the outset.

The infusion came down completely this morning and I've been okay.  Because of the scenario above, there's no way I could go home on the same day as coming off the infusion, but seeing as I've been okay today back on the oral preparation of the drug I should be able to go home tomorrow.  Excellent news!

It's been an odd admission for me, partly because I wasn't in such a crisis when I came in.  This is good, but it's very unusual.  Because I wasn't in a life-threatening state on admission I didn't have to be in a room right next to the nurses' station where they could keep an eye on me, so I've spent the past week in the last cubicle in the bit of corridor around the corner at the end of the ward.  I've never liked being round here.  It's lonely.  It's right of the way and you never actually see anybody unless they come specifically to see you.  Nobody passes the room on their way to anywhere else, and most of the time you barely know who's working on the ward except for the nurses immediately looking after you.  It's not that I want to be in the middle of everything - I don't - it's that I do get very lonely having to spend a week almost entirely on my own, and because I have this long-standing MRSA positive status I'm not allowed out of the room.

The trouble with getting lonely is that it makes me think, and I usually end up getting in to a negative frame of mind and thinking about all the difficult things that are going on.  Sometimes that's just the immediate situation and the recent asthma crisis, but when there are other things outside of that going on then they often pile in too.  Then I get in to a bit of a state - miserable, tearful, depressed even.  Unfortunately this is what happened on Sunday as there have been rather a lot of other things going on in recent times.  Some of things I'm not really at liberty to talk about here, but one that I will mention is that I've generally been a bit low, which you may well have picked up on in my post 'Identity'.  I've actually started seeing a clinical psychologist in the last few weeks.  This will only be for a short period as these days the NHS only offer between six to ten sessions as, sadly, there's an increasing demand for the service, but I've found the three I've had so far helpful, if difficult.  Actually, when I went to see my GP last week, the original purpose for the appointment was to ask if I could temporarily increase my antidepressant.  It's not that I'm really depressed, it's just that I felt like I was beginning to walk a tight-rope and I wanted to stop before I fell.  It was only as a passing, exhausted, thought that I asked about the asthma, which led me to be admitted.  So yes, things have been tricky recently and the isolation in here caused a bit of a meltdown on Sunday.  I was completely miserable, and then totally lost all composure when the nurse came in to tell me that from Monday I wouldn't be able to use the toilet (I would have to use the commode instead) because of my MRSA positive status and the toilet is communal.  Most of the other cubicles round here are only used through the week, either for sleep studies or for transplant assessment, so it had been okay to use the communal toilet during the weekend, but when Monday came it would be different.  It was the last straw for me on Sunday and I broke down.  I'm so lucky to have the care of such wonderful staff here though, and to have known them for so many years, because their response wasn't one of bewilderment, but one of gentle concern, an opportunity to talk for a bit about all the things going on for me, and a big hug.  As it turned out, the lovely nurse who had given me the news on Sunday felt so guilty for making me upset that on Monday she said that they'd swung it so that I could use the toilet and the other, more mobile (and transient) patients could use other toilets.

To someone on the outside it must seem like such a trivial thing - the use of a toilet - but believe me, commodes are demoralising, even when you're in a room of your own.  It is a big deal to be able to use a normal loo.  It is a big deal not to have to lie in bed and wait for someone to bring you a chair with a bedpan in the bottom, which may not arrive in time if you're suddenly desperate.  Sometimes the logistics of using a commode aren't easy if you have a sudden release from constipation (I'll let your imagination do the work), or what, if has happened to me before, there's a hole in the bottom of the bedpan that's in the commode?  No, it really is a horrible thing to have to use a commode and it really makes a big difference if you can use a proper toilet.

So Sunday was emotionally horrible, but Monday improved with a visit from my mum.  She came down from Edinburgh for two hours to see me and she didn't tell me she was coming until she was sitting on the train.  How lovely is that?  It was fab to see her, and wonderful to have a Mum-hug.  I had another visitor that day too, my friend O.  She had been coming down to Newcastle anyway (again, from Edinburgh) because we had been meant to go to a concert together in the evening.  O still went to the concert, I'm pleased to say, but she also came to the hospital to visit me.  By the time she left to make her way straight to the concert venue I was feeling very much chirpier despite missing the gig.

I've moment of being low since then, but due to something very specific that I'll write about in another post very soon, but I've otherwise managed to remain fairly positive since Monday.  I'm confident that tomorrow will be a positive day too since the thing that I'll write about in my next post has been dealt with (in as much as it can at this stage) and I'll be heading home.  This might be crazy, but regardless of how tired I am when I get home tomorrow, in the evening I'll be heading to Flotsam for a quick burst of normality at the end of a stressful seven days.

Thursday, 15 November 2012

All sorts

There's a lot going on at the moment, some of it good, some of it very good, some of it not so good at all.

One of the very good things is that I got the final results for my MA and I got a Merit.  Hurray!  If I'm honest, I was actually slightly disappointed with this at first, but that's only because I set the expectations for myself very high, and actually, when I'd had time to reflect on it, I'm still proud of myself.  It's been a tough year, and to get through the course has been difficult enough at times, so to get a high Merit is good going.  When I had a look at my marked dissertation/portfolio there were a few points where I felt I could come back to the markers with comments, but of course that's not possible.  All in all, a good thing.  A very good thing.  I'm looking forward to graduating on 6th December.

Another good thing is that I've been involved in setting up a choir.  I'm not running it, but I've been helping find the venue, set up the bank account, help with advertising, setting up and checking the email account, taking subs, etc.  Many years ago I was in a youth choir, Swing Bridge Singers - I've spoken about them before.  I loved it, and it was probably the one good thing in my teenage years. The conductor/musical director (Scottee) is one of my most favourite people, as he is for many of the 600 or so people who have now passed through Swing Bridge Singers.  After a lot of years of being asked by ex-SBSers and SBS parents, Scottee agreed to do an adult version of Swing Bridge Singers.  We are called Flotsam and had our first rehearsal last week.  There was no way of knowing how many people would turn up, and whether or not we would have a choir, but in the event thirty two folk came along!  Not a bad turn out for week one.  The second rehearsal is this evening, and we're hoping for a few more folk to come, especially men as we only had four last week.  The four we had were very good, but they were rather outnumbered.   I'm loving it though. I came out last week feeling a bit more alive and reconnected with the world :o)

Now one of the not so good things is that my lungs are playing up.  During the day I'm not too bad.  My peak flow isn't very good, at an average of around 150, but at night time things are going totally pear-shaped.  I cough.  I wheeze.  I'm breathless.  I use my nebuliser again and again, and eventually it settles, but not until around 5.30am, and I'm getting exhausted.  I went to my GP today, knowing that there's not really anything she can do, although she did say to increase my furosemide (diuretic) in case my lungs are filling with fluid at night.  Then she suggested I get in touch with my consultant.  I have done that, and eventually got past his gate-keeper secretary, who started off saying that I should see my own GP, but then listened when I said that actually I was phoning on the advice of my GP.  My consultant has been busy all day, but his Registrar phoned me.  When I explained what was happening, and explained what medication I'm on he said he wasn't sure what to do either, but would speak to 'The Boss' and get back to me.  He has just done so, as I've been typing this.  The upshot is that they want me to go into hospital :o(  They want me to have some IV aminophylline and to try to stabilise things.  They want me to go in tonight :o(  This means I'm going to miss tonight's Flotsam :o(  They haven't actually got a bed for me at the moment, but the Registrar said they're going to make one - perhaps literally - and he'll phone me when they've got one :o(  I said to him that, if they can't get a bed tonight, I could go in tomorrow instead.  I was trying not to sound too hopeful, but I really wanted to go to Flotsam.  The Reg said that they really want me in tonight in case tonight is the night that everything goes belly-up :o(  I completely understand, and my rational head agrees with him, but I don't like it.

There's a load of other stuff going on too.  Stuff I can't talk about here.  That's the very not good stuff.

Anyway, I'm going to have to go because the Registrar has just phoned me back to say they've got a bed :o(