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

Today is the tomorrow that you worried about yesterday.

Monday, 28 November 2011


I started keeping a hospital case packed and ready for any emergencies several years ago.  It was a big acknowledgement of where things had got to - that I need to be prepared for sudden hospital admissions - but it has made that aspect of admission so much easier.  There's no frantic rushing around (as best as one can frantically rush when one can't breathe) looking for pyjamas or toiletries, or even trying to remember what might be useful in hospital.  Okay, there are still things I need to gather in those last few minutes before the ambulance arrives, and I more often than not misjudge what might be useful, but at least that's only the extras, not the essentials.  Although there have also been times when I've completely misjudged the whole situation, gone to my GP, knowing somewhere inside me that I'd be going from the surgery to hospital, but have still failed to take my hospital case with me, instead taking only a rucksack full of children's books, teabags, and cross-stitch.  It's not that I'm in total denial at these times, but rather that my brain is addled by high levels of carbon dioxide and low levels of oxygen.  Anyway, keeping a case pre-packed means that the essentials are ready to pick up and take with me, should I remember to do so.

Over the past couple of days I've at last been replenishing supplies in my hospital case.  It's not a physically demanding task, but it is surprisingly emotionally taxing.  Repacking is an acknowledgement that I'm going to need the case again, that I'm going to be desperately ill again, that I'm going to need to be in hospital again.  Repacking reminds me of all my previous admissions, and those fights to stay alive.  It reminds me of the temporary nature of life, of my life, and the certainty of death ... and the likelihood of my own death being through asthma.  Most people don't think about their own death, and most people with asthma rightly don't have to consider dying from their disease, but such is the nature of chronic severe brittle asthma that these are realities in my life.

It took me a long time to get around to repacking after my last-admission-but-one simply because of the emotional strain of doing so.  However, this meant that when I did repack it was when another admission was imminent.  All the while I was packing I was hating what I was doing, because I hated what it represented, but in the forefront of my mind were the constant thoughts, 'Is this going to be the last time I ever repack my case?  Is this attack going to be the last?  Is my asthma about to kill me?'  It made the whole thing even more difficult and reminded me that, should I survive, I definitely need to make sure I replenish supplies before the crisis looms, so that's what I've been doing.  It's still stressful, and it still stirs up all those thoughts, but I can distract myself with other aspects of life that are going on, and I can remember that there are aspects of my life that aren't all about asthma.

Friday, 18 November 2011


It's taken me a while to get back into life after my most recent hospital admission, probably because it was such a long one, but I'm getting there now.  When I first came home I was feeling quite overwhelmed by the world, having spent most of the previous four weeks in one small room because of being MRSA positive.  I found that almost everytime I left my flat I'd begin to feel very emotional, and on several occasions was almost in tears simply because I was doing something normal.  I was alive.  I'd survived the asthma attacks (somewhat surprisingly), and was back in the world where people try not to think about being ill or death.  One day last week I was in Tesco when I suddenly felt really tearful at the normality of checking a box of eggs for broken ones.  It was almost too much, and part of me wanted to abandon my shopping and come home.  I didn't.  I moved on to the milk and instead nearly cried over the bottles as I considered the normality of checking expiration dates.

It's odd how emotional it can be to come home from hospital after a long admission.  I suppose it's partly the relief of having survived another severe attack, and this time there were various complications along the way that added to that relief.  Coming home can be exhausting as well, though, so perhaps some of the emotion comes from that too.  I mean, when you're in hospital you don't have to do anything except the hard task of get well (or relatively well) and then stay stable.  When you get home you have to maintain what stability of wellness you've achieved, hopefully improve further, and do all the day-to-day living things like meal-planning and prep, getting drinks, getting dressed, shopping, maintaining the home.  It's wonderful to be able to do these things, and to have the freedom of being home, but it is also exhausting and takes a fair amount of getting used to again.

I tend to throw myself back into life when I get home from hospital, often to the dismay of friends and family.  In part this is because I have so many hospital admissions, and so little time between them, that if I had 'recuperation time' then I'd only ever have that and time in hospital without any proper time for living a life.  It's also the way I've learnt to deal with the trauma of being in hospital, and yes, each admission is traumatic even though I'm used to it.  I am used to the routine.  I know what to expect in terms of treatment and procedures.  I know all too well what ITU and HDU are like.  I know the usual course of my attacks.  But I never get used to the uncertainty of my survival, the possibility that each attack may kill me.  I never get used to the fear and sensation of suffocation.  Each attack is physically and emotionally draining.  Jumping straight back into things when I'm home is my way of making the most of life while I have it, and reaffirming that there is more to my life than illness.

That is something I sometimes struggle with - knowing that there's more to my life than illness.  Sometimes I feel like I just bounce from one hospital appointment to another, to my GP, to my carers, to feeling ill, and back to hospital.  There's been a fair amount of that even during these past two weeks at home as it seems that I've developed some problems with my liver, most likely as a result of long-term high-dose steroids for my lungs.  Since coming home I've already been back to my GP once, had bloods taken by the surgery phlebotomist, been to the hospital for a scan, and been back to the surgery twice for blood results.  It's looking likely that I have (non-viral) hepatitis, so yet something else to contend with, and probably another referral to another hospital consultant and therefore yet more hospital appointments and 'life' as a patient, rather than life as BeckyG.  I'm hoping to get a better picture of things next week, and maybe find out a little more about diagnosis, prognosis, treatment (if any) etc.

All this liver stuff has certainly been making me feel rubbish, with pain and constant nausea, and more lethargy, and it might well be contributing to the water retention problems I've been having.  It's been more difficult to throw myself back into life, but I've been determined to do what I can so I actually managed to get to homegroup (bible study group) on Wednesday for the first time in a long time.  It was good to be there.  I was tired, but it was a small group of people who know me well, and I was able to share some of my worries and concerns with them, and pray about them, and that was all a relief. 

I also went to a Bellowhead concert on Monday night at The Sage.  I love Bellowhead, though I find it very difficult to describe their music ... perhaps you could call it funk folk...  Anyway, they're brill and they clearly enjoy themselves while they're performing.  I'll post some photos of the gig when I get around to taking them off my camera.  Actually, Monday night's Bellowhead gig went a long way towards helping me to feel alive again, like that kind of concert is what being alive is all about.  It was fantastic, and come to think about it, I've been a lot less suddenly tearful since then too :o)

So yes, I am gradually settling back into life outside of hospital, albeit with some (more) health complications, and I am re-engaging with the world :o)

Tuesday, 8 November 2011


I'm home and it's fantastic!  I got home on Saturday afternoon and didn't even have to wait long for my prescription as the fab doctor got it all requested on Friday :o)  W came and picked me up after lunch, and she said she was glad to be the one to bring me home as she'd gone in the ambulance with me, so she saw the circle through.  Bless her.

My lungs are so much better, but it turns out that my blood results are still showing a problem with my liver so I'm going to be sent an appointment for a scan as an out-patient.  Now I don't know if it's this thing with my liver or something else, but I feel sick almost all of the time.  Nausea's been a problem throughout this admission, and I've been taking extra meds for it, but the past couple of days I've been feeling more queasy than I was.  Maybe I'm just more aware of it because I'm at home and trying to get on with other things.  I could do without it though, especially as I'm hoping to get to my university class tonight and I'll have enough to think about just trying to catch up and have the energy to be there.

Speaking of university, while I was in hospital I got the results for my postgraduate certificate in creative writing.  I got a Distinction!  I hardly dared hope that I'd get a Distinction, even though I knew it was a possibility based on my coursework results.  It feels great!  I can hardly believe I've done it!  It gave me a boost while I was in hospital, and now that I'm home and thinking about going back to uni tonight, it's given me another boost to get stuck back in to study.  I just hope that I can catch up on all that I've missed.

Well I know this has been a short post, but I'm going to leave it here for now.  I'm tired.  I need to have a rest before I think about going out to univerisity.  I just wanted to let you know that I'm home, it's great, and the cat has turned into a limpit >^..^<

Saturday, 5 November 2011

Coming out of the hodpits

I sent a text to my mother this evening in which I somehow misspelled the word 'hospital' as 'hodpit.'  On reflection I thought this rather a good word that well describes the hospital-induced grumps, so I've decided to adopt it as such :o)  Today has been a better day as far as the grumps have been concerned, so it could be said that I'm coming out of the hodpits :o)

One of the cheerier things about today has been the registrar saying that, providing I feel well enough, I can go home tomorrow!  She initially said we'd see how I went over the weekend and think about it for Monday, but I then suggested Saturday.  It turns out that my liver function tests (LFTs) went somewhat awry when I was on antibiotics for the chest infection (the doc didn't explain any further than this, but I think I'll ask out of interest), so they took blood again today to check that things are back to normal with that before they give me the final okay for home tomorrow, so I have everything crossed.

Although I haven't slept well for a few nights, with difficulty getting to sleep more than anything else, I had a slightly better night last night.  I didn't get to sleep any earlier, but I think I slept more deeply once asleep, and I was left to sleep on in the morning as well.  I suspect being a little less tired has helped me to come out of the hodpits too.

W and I had been planning to go to a fireworks display this evening, but of course I wasn't able to go in the end because of still being in hospital.  W almost didn't go herself, thinking it would upset me that she was able to do something she knew I wanted to do, but in the end she did go and I'm glad she did - there's little point us both missing out on the fun.  Anyway, W videoed most of the display on her camera and we watched it together on my laptop when she came to visit afterwards.  The other thing we did was light sparklers in the hospital garden.  I was sat there in my pyjamas and a blanket in my wheelchair, twizzling sparklers, waving them in the air, and calling out, 'hello' to all who passed by.  It was great fun.  Here's a very rare photo of me with sparkler in hand in the hospital grounds:

W also had sparklers, but she didn't join in the calling out of, 'hello' to strangers, though I think she enjoyed mine.  I certainly had fun, and it definitely got me out of the hodpits :o)

Thursday, 3 November 2011

Grumpy pants

When the cat gets stroppy, which happens quite a lot with Psycho Kitty, Zach, I often affectionately call him Mr Grumpy Pants.  The past couple of days I've been doing the typical 'pets reflecting their owners' thing and have been Miss Grumpy Pants.  I'm just sick of being in hospital now, and every little thing has been niggling me and making me tetchy.  Poor W has got the brunt of it, which she really doesn't deserve, but more than that, I just feel naff when I'm grumpy.  I get fed up with myself for being grumpy, and of course that makes me even more grumpy.  Okay, so there's plenty of valid reason for me to be fed up, but I don't like feeling negative and miserable, and stroppy.  I let a smidgen of it out much more appropriately earlier this evening by having a couple of dribbly tears on one of the nurses, but nothing very much.  They're so lovely here on Ward 29 - let me feel however I feel, are genuinely interested in whatever those feelings are, and know exactly how to handle each individual occasion.  So this evening I got a hug, a glass of milk, and chat time.

A little earlier I was talking with one of the other nurses about my desire (and need) to get home.  I'd told the junior doctor I saw yesterday that I was hoping to get home at the end of the week, but she'd been very non-committal because apparently my white cell count is still a little high, indicating there's some residual infection.  I've been so poorly this time, and had such a major set-back after an initial improvement, that the nurse today thought that maybe the doctors would be a little more cautious than usual about sending me home.  None of us want me to have another flare-up of infection and bounce right back, but personally I think I'll be fine to be going home as I'm not spiking any temps or anything.

In a bid to make headway home I came off the oxygen late this morning and have been pottering around the room a bit more than I had.  I've had one or two periods of puffiness, but nothing major and nothing that didn't settle easily enough.  Although I really want to get home as soon as possible now, I've resigned myself to being here tomorrow, but I'm hopeful for Saturday.  The nurse I spoke to about it this aftenoon thought that might be realistic enough, and hopefully the docs will think similarly when I see them in the morning.  I should be seeing the registrar and the consultant (not my consultant as he's away this week, but one of the others who I know very well), and they're usually guided by how ready I feel for home, so I'm gunning for discharge on Saturday - just in time for fireworks :o) although I won't mention that to the docs ;oP

Don't worry, I won't go pushing to get home if the doctors really don't think I'm up to it, but my white count wasn't massively high, and I'd go to my GP at the first sign of any reappearance of infection.  I do need to get home now though.  Even if I get home on Saturday, it'll be almost four weeks since I was admitted, and there's only so much getting better one can do in hospital.  A certain amount of recovery comes when you immerse yourself back into life, and anyway, hospitals are fantastic places for picking up more infections, even simple ones like the cold I got that caused the chest infection and set-back I had the other week.

Yes, I need to get home.  I need my own space and own surroundings, and I need my cat.  I need to be able to process all that's happened, get my head around how poorly I've been (the nurse I was talking to this evening said that she's been really scared for me this time, and have scared all the doctors too), and also have the opportunity to grieve for a friend who died last week.  Rachy was someone I'd initially met through the discussion boards on the Asthma UK website, but had got to know her well through another group and then through text contact.  We may never have met in person, but we were still friends, and I'm missing her.  I won't say anything more about that for now, because it's all a bit too raw and unprocessed, but I thought I'd let you know that it's something going on for me, and is contributing to my upset and general grumpiness.

Now I should probably try to sleep.  I haven't slept well for several nights with my mind working overtime, even though I've been really tired.  It won't be any good me trying to persuade the SpR and the consultant that I'm okay to go home if I'm both grumpy and looking exhuasted.

Wednesday, 2 November 2011

Three weeks and counting

I've made it back to you at last.  I'm still in hospital, and have been here for over three weeks now, but I do seem to be making much more steady progress now and I can see the possibility of discharge.

As you know, I had a slow decline this time round, and I was getting really tired with it, but things escalated quite rapidly on 10th October.  In the early afternoon I emailed the Charge Nurse (J) on Ward 29 at Freeman to say that I thought I'd be heading their way soon, and a couple of hours later I was in resus in A&E at RVI after phoning Ward 29 and finding that they had no beds.  As it turned out I wouldn't have lasted long on Ward 29 anyway as I went from resus in A&E to HDU in the Critical Care Unit at RVI, and was there from the Monday until the Friday.

I had a fairly horrendous time in HDU at RVI, which I can't say a whole lot about on here as those involved are being disciplined (albeit unofficially), but one night was particularly awful and caused me a great deal of stress.  I'm sure the stress has contributed at least a bit to my slower recovery, although things were slow anyway, most likely because the decline was slow.

So I made it to Ward 29 at Freeman on the afternoon of Friday 14th October, and although I was still on the aminophylline infusion I was kind of doing okay.  Saying that, though, something didn't feel right ... it didn't feel like a stable improvement, and although I was able to get off the aminophylline by the Tuesday (I think) I wasn't convinced of the improvement, and actually felt like I was getting a cold.

I was right.  I did get a cold and the cold rapidly headed south to my lungs, giving me a none-too-pleasant chest infection.  I had a barking cough, I was exhausted, I wasn't sleeping well, I was wheezing more and more, and by the next Friday I was in HDU in Freeman.  Thankfully I only had 24 hours down there and was able to come back to the ward, but I was far from well and still very wheezy.  It's taken a heck of a long time for the wheeze to settle and to begin to feel like I'm mending, but at last I think I'm getting there.

For the second time this admission the aminophylline is down - as of yesterday - and so far I'm doing okay.  I was a bit tighter again this morning, and ever so tired, but things settled after nebs and then I slept the morning away and was woken for lunch.  I'm still very tired, but it's been a long haul with a lot of stress and upset, and a big set-back in the middle that itself made me want to cry.  The trouble is that crying can make my lungs tighter so I have to push the upset and stress to one side until it's safe to express it, but then I think others can be confused when it does get expressed as there may not be any particularly apparent reason for the tears when they come.  For the most part the tears still haven't come yet for this admission, and I have a feeling that they won't until I get home.  There's almost too much to process while I'm here, even though I have my own room (the benefit of being MRSA positive) ... I'm kind of numb most of the time ... just getting on with it ... almost afraid of touching the miserable bits, but I know that I will have to in the end.

I know that even what I'm writing here is probably coming across as emotionally detached.  I also know that it wouldn't be so detached if I could write about what happened at the RVI, but I can't.  Though I will say that what happened has left me feeling like I'd rather take the risk in the future of waiting at home for Ward 29 to have a bed, than end up back in ITU/HDU at RVI, even if that means I don't survive.  However, the RVI ITU/HDU matron is on the case, has been as reassuring as she can be, and has told me that if/when I'm in her unit again I'm to have the staff tell her that I'm there.  W has also said that if at all possible (i.e. if she's not working the following day), she will not leave me alone in the unit again.  I think that's probably all I can say about it.  Sorry to be evasive, but I feel I should be at least a little cautious about how much I say.

The next step is to get off the oxygen.  It shouldn't be too difficult as I'm only on a trickle of 2 litres now, and as I've said, my progress does feel much steadier now.  I've even been out for a proper trundle in the park today, with Dad pushing the wheelchair.

Nobody has yet mentioned home, but providing things continue as they are then I'm anticipating discharge by the end of the week, maybe Friday.  In my head it's Friday, anyway, though I haven't mooted the idea with anyone yet either.  I might do tomorrow.  Actually, these days the medics tend to leave it to me to tell them when I'm ready for discharge, and at the moment I think Friday is probably realistic.  Also, I have to get home by Saturday because the cat is terrified by fireworks so I need to get home to comfort him and most likely spend a large proportion of Saturday evening with his head stuck in my armpit as he tries to hide from the noise >^..^<  Bless him.  I miss him so much and can't wait to get home to him.  Here's hoping Friday is doable.