Aragog

First of all I need to apologise for my long absense. I'm okay. I've been rather busy trying to catch up with my OU studies whilst starting my post grad studies at Newcastle University. In the past 10 days I've done six and a half weeks worth of OU work and written one and a half assignments. I've still a lot to do, but I'm getting there now.

So anyway, I realise that I owe you a story about a spider. It's from when I was in hospital the time before last.

The night before the spider event occurred I had a strange experience. I woke up several times through the night, and on each occasion I checked the time. The first time it was 1am. The second time it was 4am. The third time it was 6am. The fourth time it was 5.30am :oO Weird. The next night I told one of the nurses - R - about it and she said, 'Nooo, don't tell me that. I won't be able to come back in here now - it's too scary.' She then told me of several strange things that she's seen in the hospital over the years and that they all freaked her out.

A couple of hours later, when most were asleep but I hadn't been able to, R came rushing into my room.
'There's an enormous spider in the corridor and we don't know what to do!'
'You're not too scared to be in my room?'
'No. The spider is scarier. It's enoooooormous. We don't know what to do.'
'Um, put a cup over it, slide a piece of paper underneath the cup, scoop it up and put it out of the window.'
'We've put a cup over it, but we can't put any paper underneath.'
'Why not?'
'I'm can't touch it, D's too scared, and L isn't going anywhere near it.'

They were stuck. I was still attached to the aminophylline infusion and the oxygen, but all the same I could see that I was their only hope, so I gathered up my oxygen tubing and unpluged the infusion pump (it can run on battery for a couple of hours). I made it a couple of feet from the door before being stopped in my tracks by reaching the end of the oxygen tubing. I had no option but to do without the oxygen in order to save the nurses from the enormous spider that was terrorising them in the corridor.

I steeled myself for the encounter with Aragog that awaited me. I stepped out into the corridor, whereupon I saw the upturned cup concealing Aragog between my room and the nurses' station. I asked for a sheet of paper, then approached the cup brandishing the 'weapon'. I carefully slid the paper underneath the cup, stood up, and then wondered how I was going to carry the spider-containing cup to the window whilst still attached to the drip as I needed one hand to pull that along. I asked R for help.
'Noooo. I'm not going near the spider.
'I can't get rid of the spider if I can't get to the window.'
R conceded, although kept at full stretch of the drip line, and we made our way back to my room and to the window. After R flung the window open at arm's length, with a look of utter fear at seeing the enormous spider again, I removed the cup. I was faced with Aragog. I'd been expecting something of giant proportions. Aragog turned out to be about the size of a £1 coin.
'Honestly, R, that's not enormous.'
'Yes it is. Get rid of it. Please get rid of it.'
I shook the cup and paper and out fell Aragog.
'You do realise that we're on the 4th floor, R, don't you? The spider's probably just fallen to it's death.'
'I don't care. At least it's gone.'
I was getting rather out of breath by this stage due to the activity and lack of supplimental oxygen. R suddenly realised this and went back from terrified spider-hater to nurse. I was shuffled back to bed and had the oxygen put back on my face, whereupon I handed the cup and paper back to R, who was very reluctant to touch anything that Aragog had been near, but she did eventually take them from me, albeit holding them very tentatively.

A little while letter I was settling back down and not far from sleep when R came rushing back into the room.
'Oh no! I've just thought; the spider will probably come to haunt you!'
'What?'
'The spider's probably dead. Your room must be haunted because of what happened with the clock last night. The spider will come back!'
'I doubt it. I don't think spiders haunt people.'
'How do you know? I bet they do. I'm not coming back in here.
'Um. Okay...'
R left. I went to sleep. I never was haunted by Aragog.

A quick visit

This is a quick visit to my blog during a quick visit to London. I'm visiting my brother and his family :o) I was supposed to have been at a one-day conference on 'Conflict in Children's Literature' at Roehampton University yesterday, but I knew that I wasn't going to have the energy for that so very reluctantly had to cancel my plans to attend. I'd been looking forward to it for months, but there's no way that I'd have managed with my energy levels as they are at the moment. However, I didn't want to cancel all my plans to come to London and stay with my brother, sister-in-law, and two gorgeous nephews, so that is where I am. It's my brother's 40th birthday on Monday, so we've had a bit of a celebratory day today with present time, and cake with candles at dinner time. My sister-in-law, N, and my older nephew, O, started making the cake yesterday, with the intention of making a car-shaped cake, but not being used to using wholemeal flour (to make the cake Aunty Becky-friendly), N didn't add quite enough liquid in the recipe and it all turned out a bit crumbly. Oops. Undeterred, the remains of the cake were put aside until today, when N and O had a go at adapting the car cake, mixed the crumbs with lots of whipped cream, put the remaining pieces of cake into a rough car-shape on top of the cream/crumb mix, piped freshly whipped cream onto the top to indicate wheels, lights, and windows, and hey presto, a scrummy car cake :o) It didn't taste anything like cars, though ... not that I've ever tried eating a car...

A couple of weeks ago, while I was in hospital, my older nephew, O, had chicken pox while the family were away in France. O is fine now, and it seemed as though my younger nephew, D, had somehow managed to escape catching chicken pox from his big brother. I had a bit of a dilemma before my visit as it could potentially be very dangerous for me to get chicken pox because of being on high dose prednisolone. I wasn't sure whether to risk coming or not, when it seemed that D would most likely get ill, even though he was so far okay. I spoke to a couple of friends who are GPs to ask for advice, and they both said that I should probably postpone my trip south. I was reluctant to do so, though knew that I would if it was really necessary, but first of all I decided to speak to my asthma consultant and see what he thought. I phoned his secretary on Wednesday, but it turned out that Dr H was away on annual leave last week, so explained my situation to the secretary who'd asked if any of the other consultants could help. Just as I was telling her about the chicken pox situation, one of the other consultants I know very well (in fact I've known him since he was a new registrar) came into the office so I spoke to Dr DS, who said that I should be safe enough as I had chicken pox as a child. Hurrah! The trip was on! And anyway, it seemed as though the M, N, O, and D household was chicken pox-free so it was all only precautionary in the first place :oD ... except that when we got up on Saturday morning it appeared that D hadn't escaped the affliction and was definitely a little bit spotty. Today there has been absolutely no doubt about it - he is a spot fest. He's mostly okay in himself, but he's very itchy and that gets him miserable. And now I feel a little, um, er, irresponsible. Perhaps I shouldn't have come. Even though I had reassurance from Dr DS that I ought to be okay, I do wonder if maybe I ought not to have put myself at potential risk :o/ I'm loving being here, and loving seeing all the family - especially the boys :o) - but have I done a stupid thing? I'm not sure. I don't know whether I should contact my GP when I get home or just wait and see if anything happens, which it probably won't, but I definitely don't want it to either. Hmmm. Am I daft? Have I been stupid? I fear the answer maybe yes ... It has been wonderful, though, to see O and D (and M and N too), and I don't want to go home tomorrow.

Take two

I'm home. I got home early evening on Monday. I'm going to try to stay at home for longer than a week this time. So far the signs are good :o) I'm tired, and I get tired easily, but that's only to be expected given how poorly I've been and that I've spent the best part of six weeks in bed in hospital. Of course, being me, I've tried to jump straight back into life, albeit at a slightly slower pace.

After my cataract surgery my glasses prescription has changed quite significantly so that my current glasses are fairly useless. They're better than nothing, I suppose, but not terribly helpful, so the first thing I wanted to upon my escape from hospital was go to the optician for a sight test and to order new glasses. I went on Tuesday. While I was there I thought I'd ask the optician why the ophthalmologist had decided to make me short sighted in the left eye but keep me long sighted in the right eye - why not try to make my vision 20/20 (6/6)? The optician didn't know and couldn't explain. In fact, she seemed a little puzzled. She seemed even more puzzled that the ophthalmologist has not only made me short sighted in my left eye, but has made my overall vision worse with the lens implants he's put in. On the upside, as I no longer have natural lenses in my eyes then my glasses prescription is unlikely to change very much over the years, unless I develop fibrosis, which apparently is very likely because of the cataract surgery, although I was reassured that this is easily rectified with laser treatment. Anyway, I digress. Having had the sight test then began the awful process of having to choose new frames. I like having new glasses, but I hate the choosing of frames, partly because when you're trying the display frames on you can hardly see what it is you're trying on as they don't have prescription lenses in (of course!); partly because there's so much choice, yet often it's a case of finding what's nice amongst what I wouldn't be seen dead in; partly because whatever I choose is going to become part of my everyday appearance for at least the next year and probably longer; and partly because I'm often not very good at decision anyway. Dispensing opticians can be helpful in the decision making process, but they don't know you, and sometimes steer you towards frames they'd wear themselves rather than what you'd wear. Take the last time I was choosing glasses: I ended up having to gently ask if there was anyone else who could help me as the woman I had was 'suggesting' frames that were pink diamante things, which anyone who knows me will tell you is just not me - I don't 'do' pink, for starters - and most likely anyone who takes a minute to glance at me could probably tell as well. Thankfully, there were no such problems on this occasion, but it can be luck of the draw. So last time it took me two whole hours to choose frames! This time only an hour and a half ;o) I went for the two for one offer so that I can get one pair with reactor light lenses for driving, and also have two completely different styles to wear. The first pair I've chosen are these (in brown, not purple), and the second pair are these (in brown/green, not black/pink). Having bought them, I've now realised that one of my friends has the second pair in the black/pink combination, so that might be a bit odd, but I've warned her and we'll just have to live with it now. R, I'm not cloning you, honest ;oP I can't wait to get my new glasses because I soooo want to be able to see properly, and it won't be until I get the glasses that I'll realise the full benefit of the cataract surgery. I'm collecting them at 11.30 on Tuesday morning. The opticians can do single vision distance lenses in an hour, but I have varifocals, which take at least a week, usually ten days. I asked them if they could priorities my prescription given how useless my current glasses are to me, and they agreed to have them done by Tuesday - exactly a week :o)

The next thing I did was to test-drive a car! I have a motability car (no adaptations though), which means that I get a new car every three years. I can hardly believe that it'll be three years in January since I got my current car, but it will be so it's time to be looking for a new one and deciding if I want to stick with the same that I've had or go for a change. I've decided to go for a change. I've enjoyed the Nissan Note that I've got at the moment, but one thing that would be useful is a bigger boot as I can't actually fit my either wheelchair in the boot of this car. I can't afford a car that's big enough to take my electric wheelchair, but at the moment, even my manual/attendant assisted is having to go in the back behind the passenger seat.

I'm the kind of person who likes to do a lot of research into all the affordable possibilities before making a decision on a substantial purchase, often checking things out with Which? or their equivalent - in this case What Car? After a fair amount of deliberation and assessment of finances I decided that I'd like to have a closer look at the Vauxhall New Meriva so I booked a test-drive. I liked it. I liked it a lot. I ended up putting an order in. I've gone for the SE model 1.4litre 120bhp in Pepper Dust, with the 'sight and light' package (automatic lights and windscreen wipers). I'm also paying extra for a spare wheel because they don't come as standard (it comes with a tyre self-inflation kit instead) and after the tyre pop I had earlier this year I'm a little wary of not having a spare wheel. Those costs add up, but it's worth it. I won't get my new car until the end of January/beginning of February as that's when the lease on my current car runs out, but when the guy at the dealership looked at the computer he saw that there weren't actually any cars already built to my specifications so one is going to be built especially for me! How cool is that?! So now I have three months to get ridiculously excited about getting a new car, and I'll probably bore you silly with excitement between now and the end of January ;o)

Right-e-o, I'd better be off as W has just arrived and my step-mum is bringing my dad round imminently so that the three of us can go to a fireworks display at Segedunum. I like fireworks and didn't get to a display last year because I was in hospital, although W and I did our own display on the town moor earlier this year, which we'd postponed from last bonfire night. We had so much fun on the moor that we're actually going to do the same thing again, probably on 8th December after we've been to 'Wind in the Willows' at Northern Stage. It should be a fun day.

Extreme wheelchairing

My dad has Lewy Body Dementia, but when I'm at the getting-lots-better stage of hospital admissions he often takes me out in my wheelchair for a breath of fresh air and general escape from the ward. However, this is quite an experience and something I've termed Extreme Wheelchairing.

On Thursday Dad took me to Paddy Freemans - the park directly opposite the hospital. I very nearly ended up in the pond. Dad was watching the ducks as he was pushing me along and he forgot not to steer me in the direction he was looking so I was rapidly heading towards the 'steps' that circle the pond. I was holding onto the oxygen cylinder so grabbing the breaks wasn't an easy task, and a certain amount of breath was used in raising my voice in a desperate kind of way until Dad realised where he was pushing me. I survived that only to have him nearly push me off the edge of the cliff into Jesmond Dene below. He was showing me the view, which was lovely (although I've seen it many times before I never tire of it), but I didn't want to become a part of that view. Again, there was a degree of desperation in my exclamation as my front wheels teetered over the edge of the cliff.

I went extreme wheelchairing again yesterday, but only within the hospital. We managed to take out a lady in the lift, which was rather mean as she had a chest drain in so can't have been feeling all that grand to start with. Dad then took me to the little coffee shop in the hospital W H Smith, which is the most wheelchair-unfriendly shop in the world with narrow aisles that the staff insist on making more impossibly narrow with boxes of things that ought to go on the shelves but they never get around to unpacking. It's horrendous. So we crashed into the crips aisle, ran over a woman in the random slippers and dog food (!!!) aisle, couldn't get down the magazine aisle, though that didn't stop Dad from trying, and smashed our way through to the till and coffee shop area, managing to swipe a hairbrush off the shelf with my wheel and not realising until I felt it as I tried to grab the breaks (almost dropping the oxygen cylinder in the process) as we crushed a bloke sitting at one of the coffee tables. Upon leaving, Dad tried to push me through a table and a chair until I suggested that he leave them in the shop and not push them all the way down the corridor in front of us - he just hadn't seen that they were there and attached to me. We came back to the ward relatively uneventfully, except for the close acquantance I made with the wall beside the huge double doors that were open but Dad still couldn't easily negotiate his way through, and a small crash into a porter with a wheelchair.

It really is quite an experience having someone with moderate dementia take you out in a wheelchair.

Hospital Use Only

I didn't last long at home. One week exactly, that's all, and a strange week it was too. I went to a concert by Northern Sinfonia at the Sage Gateshead on the Saturday after I was discharged and picked up a cold from one of the many congested people in the audience. I could feel it scratching away in my throat by Sunday evening. By Monday I was beginning to cough and felt the bugs clawing their way south to my lungs. on the Tuesday I had to go and have bloods done at the GP surgery to rule out diabetes or thyroid problems as the cause of the neuropathy in my hands. I had a rubbish night on Tuesday with coughing, but nonetheless went to RVI on Wednesday morning for cataract surgery on my left eye. I expected them to turn me away because of my cold and cough, but the surgeon just said, 'Let me know before you're going to cough so I have time to pull the instruments away'!! I duly obliged - I didn't want to be his first accidental brain surgery patient, however good an eye surgeon he is. Fifteen minutes out of surgery and back on the day ward, with hardly time to feel relief that the operation was over, I had a call on my mobile from my GP. The blood tests I'd had the previous day showed I was 'dangerously hypernatraemic' with a sodium level of 152.
'Okay ... what do I do?'
'I don't know. We don't usually see levels this high. I'm going to call the hospital for advice. Are you feeling ill in any other way?'
'Um, yes, well it's hard to say because I'm full of cold and it's going to my chest so my breathing isn't that great, and I'm literally just out of cataract surgery.'
A moment's silence.
'Right. Okay. I'm going to phone the hospital and I'll call back soon.'
'... Okay ... is there anything I should do with my diet?'
'No, that won't make any difference.'
End of call. Anxiety sets in. I come to the conclusion that it's not a good sign when your GP phones you in a panic with no real idea of what to do.

She rang back five minutes later saying the hospital advise urgent repeat blood tests, and she'd made me an appointment for 4.30pm. so then I had to make sure I could leave the hospital to get to the GP surgery in time so had to tell the nurse on the day ward what was happening. That sent them into a bit of a spin, but also meant I got my eye drops prescription quickly and could leave. I'd texted my mum and step-dad (J) to tell them about the call from the doctor and then the appointment, and they came up to the hospital straight away. We went home and then a little under an hour later I was having my bloods redone. And then a bit of an anxious evening as I wondered what was going to happen.

...And then my cough changed to a really fruity rattle and rasp, and overnight the wheeze set in. It was a terrible night with very little sleep, and although I had an appointment booked with the GP for the following morning, I knew I wouldn't last that long so called the surgery, got an appointment for 10.10am that day (Thursday) and reluctantly checked and replenished supplies in my hospital suitcase. J drove me the four streets to the surgery and waited in the car.

The GP I saw has her room directly at the end of the corridor from the waiting room and she had her door open as I made my way towards her. She waved to me and gently said, 'Bad day?' I wheezed a yes, sat down and she closed the door behind me. She called the ambulance before she even got her stethoscope out, then stuck me on a nebuliser even though I'd just had one at home. I shed a few tears at her mention of hospital although I'd known it was coming. I just didn't have the mental or physical energy for this, and I hardly felt like I'd had any time free from hospital. She was gentle. She sympathised. There wasn't much more to be done. The rapid response paramedic came, closely followed by the ambulance crew. In the meantime I texted J to let him know what was happening, he phoned Mum then came into the surgery, and one of the other doctors - my usual - popped in to see what was happening and said, as if it were a normal occurrence (which it kind of is), 'Ah, you've got Becky G in here.' He gave me a gentle smile and left as the other GP came back in with a letter for the hospital and an update for the paramedics. We left the surgery and I was scooted off to A&E on blues and twos.

A&E was heaving. Mum said the waiting room was chock-a-block and people were lining the corridor on trolleys and chairs. I was in resus, where there were four beds but five patients - a RTC victim and another asthmatic having to take turns in the bed space next to me! Thirteen 5mg salbutamol nebs and several 500mcg ipratropium nebs later, and the starting of an aminophylline infusion, and I wasn't really any better, but after five hours I'd breached the four hour national treatment time target for A&E so was whisked off to the Emergency Assessment Unit (EAU) at RVI by two paramedics and a nurse escort.

EAU was heaving too, with a very disoriented and distressed old lady with dementia running around searching for someone called Maureen, and the nurses having to try to contain her when they were short-staffed to begin with. the doctors were busy too and really slow of the mark with me, so while the nurses were doing their best with the demented lady and seven other poorly patients in 'monitoring' (as well as other patients in the unit), they were also trying to keep a watchful eye on me and could see that I was deteriorating. They called ITU outreach to come and see me. Then the junior EAU doctor came to see me and he called the registrar, who came and put his stethoscope to my chest and immediately recoiled, exclaiming to no-one in particular, 'Oh dear.' He looked scared and didn't listen any more. The junior doctor called ITU. The nurse called the EAU consultant. The consultant said to call ITU again, get an urgent chest x-ray, and give me IV hydrocortisone. The nurse came and gave me half of the hydrocortisone injection then left, went to the nurses station where she promptly fell to the floor and had a fit! Another nurse gave me the rest of the injection and the ITU registrar came to assess me, immediately saying that I needed to go upstairs. My transfer to ITU was a little delayed by the nurse's fit, but not by too long, however it caused quite a stir as you may be able to imagine. As I was arriving on ITU the patient in the room next to mine was so disoriented through illness that they were getting aggressive, punched a nurse in the face and apparently broke her nose! The staff did well not to be too distracted, and I have to say that despite my previous negative experiences of RVI, this time ITU staff were very good and I had a very lovely nurse - Bonny - and a great student nurse - Kate - looking after me. I very narrowly missed being ventilated, but stayed in ITU for four days nonetheless before being shipped across the city again to Ward 29 at Freeman Hospital, where I am now. I was still pretty ill when I came here, the cold having turned into moraxella pneumonia, and then they also grew pseudomonas in my sputum. I've been and felt very ill and it's taken a heck of a long time to settle, needing to be on the aminophylline infusion for twelve days this time and only just feeling like I've really turned the corner yesterday. To be perfectly honest I wasn't convinced I was going to survive. in fact there was a point when I was in EAU when I suddenly became certain that I was going to get a little bit better before getting much worse and then die. It was an odd certainty, that clearly turned out to be wrong, but I think perhaps that certainty spurred me on to draw on every ounce of strength I could get from anything and everything. I texted friends and asked them to pray. They did. I survived. I feel lucky to be alive, very lucky. And I remember thinking, 'I'm damned if I'm going to die this close to getting my degree. I don't want the only letters after my name when I die to be R.I.P.'

And now I'm recovering. Still in hospital, but mending. However, it's been an awful time, and fast on the heels of my previous admission with a stressful, ill week between them, and I've felt very much like what is emblazoned on the hospital gowns I'm put in when I'm admitted and wear for several days until I can be bothered with my own pyjamas - 'Hospital Use Only.'





By the way, my sodium levels came back down to normal - high normal at 143, but normal - on their own. That's all a bit of a mystery, but it certainly caused some anxiety.

Briefly

Very briefly dropping by to say that I'm home :oD I was discharged on Thursday late afternoon, despite feeling as though I may have been starting with a chest infection. The CT1 (SHO as was) said that I could stay if I wanted to, but I was determined to come home if at all possible, so I have been allowed to escape providing I got in touch with either them or my GP if the chest infection warning signs got at all worse. I promised I would. And first thing on Friday morning I was phoning my GP surgery for an appointment as I was producing pondlife :o( I'm okay, but I'm lurgified, and that seems grossly unfair. However, I now have PLECs - Pond Life Extermination Capsules - aka antibiotics, so I'm hoping they'll do the trick. While I was seeing the GP I asked about a short course of furosemide to help the water retention, and she was okay with that. I have to have my bloods done anyway (to check thyroid function and a diabetes screen, because of the possible carpal tunnel syndrome), so she's going to add on a renal function screening, although she could see from tests I had done in hospital that they appear to be okay. She was lovely. I hate my body, and I hate having it examined, but I knew she had to assess the oedema for herself so I let her and she put me at ease, and I was able to show her that although I'm far too big anyway, the *huge* pockets of fluid are not normal. She agreed. She was gentle while she examined me, but she could also see how tender I am, so she has given me a week's course of furosemide to help alleviate things. I have to go back to see her next week, partly to see how things are regarding the fluid retention, and partly regarding the chest infection. I hate that I seem to spend most of my life in hospital and doctor waiting rooms, but it really helps when the medics I encouter are so lovely.



By the way, I have a story to tell about a spider, but I'll get back to you with that next time.

Water balloon

I have swollen up with water retention again, pretty much as I did last time I was in, and like last time it's sore and uncomfortable and miserable. Unlike last time, the doc has been very reluctant to prescribe any meds to help relieve the water retention, so while I've been telling them for at least a week that I was starting to swell up, nothing has been done. I asked them for some furosemide, but I was told that nature would take its course. Nature refused to take its course. I asked again, but I was told to try to move around more and that would help. I moved around more, and walked on the spot in my room on my own for as long as I could comfortably go and for longer. Moving around more didn't help. I have continued to swell, and the fluid has gathered once again mostly around my hips and waist, and I feel like a balloon that's about to burst, and my skin is sore and stretched and nothing is comfortable. I asked again for some furosemide to help, but I was told that they were reluctant because I'm on so many meds already. I can understand that to a degree, but not when I'm so uncomfortable that I want to cry. And the stress built up, and the whole damn lot just got too much to contain, and the water burst out of my eyes in a torrent of tears and pleading, and desperation for something to help get rid of the swelling. I was told that in their opinion my feet looked a little better today. That's because it's all around my middle and my hips and my waist...except that actually it's all still there in my feet too, and I hurt and I'm bursting, and my body is going to pop and my skin is going to snap, and I'm sore, and I'm crying, and I don't understand why they won't give me something to help. I was given furosemide last time and it did me no harm; in fact it helped, as it ought. Why so different this time? What is the reluctance? What is the problem? Why don't they give me a reason? Apparently I have to understand that there's a hierarchy of doctors and that if the more senior doctor doesn't want to prescribe the meds I'm after (for whatever secret reason) then the junior doctor will not take any initiative in doing what is actually necessary for the patient's welfare. Okay, so I understand there's a hierarchy. I understand that junior medics have to play by the rules of their seniors. I don't have to accept the lack of reasoning for the 'action' being/not being taken. I don't have to agree with the decision. They don't seem to have to see it from the patient's point of view; and God forbid that they should see real patient distress in discomfort as reasonable. And no, this is not my usual experience, and no this is not my all-encompassing opinion of these people and their attitudes - it is my experience of them in this instance, in this situation, when I'm sore and stretched, and I'm tired and fed up, and I'm drained by the cycle of illness. It may 'only' be fluid retention, but it's just all a bit too much, and sometimes it's the seemingly small things that tip the balance from coping to emotional melt-down. Today I reached melt-down, and I cried, and I cried, and I lay in the darkened room, and I cried, and I hid under the sheets and I threw my dressing gown over my head, and I cried. Then I cried some more, and I felt wretched and I wanted the world to disappear, or me to disappear, and I wanted to stop hurting, and I still want to stop hurting. And I want illness not to be a part of my life, the major part of my life, the pivot of my life. I want to be normal, not NFB - Normal For Becky. And I'm fed up and miserable and wallowing in self-pity. And I cry and I weep and I feel lonely and miserable and as though nobody in the whole world possibly understands what any of it is like, particularly not these doctors who's knowledge of all these things is most likely through the pages of their text books rather than personal experience. And today I feel like an experiment that's gone wrong, but is still rather interesting to watch in some odd way. I don't want to be an experiment. And I have cried, and I have exhausted myself, and I have cried some more, and I have wept through cyberspace to some friends, and they've let it be okay to be miserable. And I've covered my face in snot because I haven't got any tissues, and my friends haven't been disgusted by the snot. No, they've found a use for it - use it as glue and throw glitter on it. Make the mess a pretty mess. And I'm still enormously full of water and feeling like I'm going to burst, and I'm hurting and I'm sore, but I'm loved by my friends, and I'm calmed by my friends, and I'm held by their cyber hugs in a real warmth and the glow of cyber glitter and cyber snot, and the mess is still as messy as ever, but it doesn't matter because I'm held by their love when everything has just got too much.

The nurse weighed me and it was found that I had eleven pounds of water retention, so now the doctor believes that I might actually be feeling as sore and uncomfortable as I was telling her I am. I was given one tablet of furosemide, but I don't know if this is just for today or if I will get it again tomorrow and some to take home. What I do know is that there's no way that I've got rid of 11lbs of oedema this afternoon, and I still hurt, and I'm still stretched, and I'm still a water balloon. But I hope that tomorrow I will get another pill to help wring the water from my over-stretched body ... and if I don't I will have to hope that the water in my body can somehow all be released through my tear ducts as that seems to be the only other way that any fluid is leaving my body.

And maybe this doesn't make any sense to anyone but me. And yes, it's a ramble and a mess, but today I am a ramble and a mess. And sometimes life is messy and it can't be written about in a neat and tidy way with pretty language and sentences that flow easily. Sometimes it's all too much. Sometimes bubbles burst.

And then my vicar came and he brought me communion, and it's so long since I had communion because it's so long since I've been to church, because so much of the time I feel too ill to get there or be there once I've got there. But each day I've been here I've curled up with God, snuggled under his blanket and poured out all my prayers of thanks and confession and supplication. So communion feels good. No, communion feels wonderful. Communion brings me a little peace and a message to 'be still and know that I am God,' so I am still and I know that He is God, and I rest with him a while. Then I do some cross-stitch to distract from the discomfort of my water-filled body and the discomfort of my crying mind, and it turns out that a combination of communion and cross-stitching Mr Tickle (and have one of your friends tell you that he's going to call you Polly from now on) can actually help emotional melt-down.