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

Today is the tomorrow that you worried about yesterday.

Monday, 31 May 2010

Pushing it

Last time I wrote (far too long ago) I was in the final throes of my children's literature Open University course. I think I was doing the final assignment, but still had the ECA (End of Course Assessment - extended essay thing) to do ... or I might have been doing the ECA. Anyway, either way I was very busy and very tired and my lungs were going downhill. I managed to get both bits of work done, amazingly, although I have no idea how much sense my ECA makes as I was getting more and more poorly as time progressed and it was a real race against time. I didn't think I'd get the ECA done if I'm honest, but I did, and then I filled in an extenuating circumstances form, sent that off (with medical evidence to follow), and then went to hospital. On the Thursday, which I think was 20th May, I had to see my GP for a review of my newish med for the POTS, and he wasn't at all happy with my lungs. He wanted me in hospital that day, but I still had 1200 words of ECA to write at that time so I said that I couldn't go in. This was stupid, but at the time it was all I could think - I had to get the ECA done and sent in or I'd fail the course. Whether it was purely the POTS or a combination of POTS and worsening asthma, by the end of Thursday I couldn't stand up long enough to make a cup of tea without passing out, so things really were miserable and now I can see that they weren't safe either, but at the time I couldn't discern this. Well I got the essay done, and sent it off through the ether at something like 11:30 pm. I should've gone straight to hospital then, but I didn't. I knew that I couldn't go straight to Ward 29 at Freeman at that time of day and I didn't want to go to A&E if I could avoid it, so I hung on until Friday, which was really stupid, and as it turned out Ward 29 didn't have any beds so I had to go to A&E in the end after all. By this time I definitely wasn't thinking straight and was sitting at home wondering how I was going to get to hospital, and even considering going on the bus! Thankfully I had a moment of lucidity when I remembered about the existence of ambulances so called 999 and had the paramedics with me within 10 minutes. When I got to A&E the docs were very worried and I went straight into resus, where the consultant kept saying to the other doctors and nurses around me, 'Be airway alert! Be airway alert! We may lose it without a lot of warning. Be airway alert!' If I'd had the breath and the energy I might have pointed out that I was still conscious and this was doing nothing for my anxiety levels, but I had neither breath nor energy enough so just gasped my way through it as it was ascertained that I was now in respiratory failure with a pO2 of 6 (anything lower than 8 is respiratory failure) and a pCO2 also of 6, which is just about normal, but is not a good sign in conjunction with the low pO2. Basically I was desperately ill, and the docs were sure they were going to have to ventilate. They decided to hold off for half an hour, see if the aminophylline they were starting was going to have any effect, along with back-t0-back nebulisers, then repeat the blood gases and take it from there. In the meantime they decided to put in an arterial line so that they didn't have to keep stabbing me for gases, and I'd need one anyway if I was going to be vented. My arteries are so scarred from having had so many arterial lines that it took an hour to get one in, and ultimately they could only get it in my foot! The hour it took to get in was very hard work breathing wise (and fear wise), but it did give me just long enough for my gases to pick up enough to avoid immediate life support - an obvious relief in many ways, although also difficult as I was so tired I could've done with the rest really. Either way, I was still too poorly to be transferred from A&E to RVI, even to RVI ITU so I went to ITU at the General Hospital, where A&E is. I hadn't been in that ITU as a patient before, and hadn't been in there as a visitor since my close friend Carol died there at the end of 2005. It was difficult going there now as a patient. At least I wasn't in the same bed that Carol had had, although I was in the bed opposite so found myself looking over that way and remembering a lot.

It was touch and go for most of the night whether or not I would need to be vented or have BiPAP, but ultimately I got through without. I was hugely exhausted by the morning and still very poorly, but was able to be transferred to Ward 29 at Freeman by the middle of the afternoon. I'm still on Ward 29. I came off the aminophylline infusion on Friday, which is always a step in the right direction, and although I'm still on the oxygen (4l/m) I'm doing okay. However, for the first time I'm having horrendous problems with water retention. My whole body has been incredibly swollen, stretched, and bloated. For several days my legs were so full of fluid that I could barely bend my knees, and my hips are still incredibly swollen and tender. It's horrible. It's painful. It's been making me very miserable. Over the past few days the docs have prescribed furosemide for me, at first in tablet-form, but then by IV as the tablets weren't doing anything. I am gradually losing the fluid, but I've still a way to go and still very uncomfortable. I haven't had this problem before - a little oedema from inactivity, but nothing anywhere near like this - and I don't know why it's happened this time. I don't know if the docs know either...

Then, just to top things off, last night I asked for the usual evening mug of hot chocolate (the last hot drink of the day at around 8pm is a milky one if you want it :o) ), but instead of the normal Cadbury's drinking chocolate that I'm okay with the student nurse gave me Ovaltine. I took one small sip, realised it wasn't the right stuff and proceeded to have an allergic reaction to the milk powder in the Ovaltine. I'm fine with fresh milk, but milk powder has preservatives in it that I can't have. So had a double dose of two different antihistamines, 2 double-dose nebulisers, and 2 epi-pens, and although I felt rubbish I have survived to tell the tale. The junior doc came to see me while I was in the throes of the reaction, and she called in the registrar, who's a bit of a chocolate teapot doctor so wasn't much use for anything, and the junior then ended up calling ITU just to make them aware of me and my situation, although I was fairly certain by that time that I was going to be okay. I was. The staff kept a close eye on me all through the night, and I made it through, albeit it feeling rotton, and miserable and grotty. I rather suspect that the student nurse spent a lot of the small hours of last night learning about anaphylaxis.

This is not the best start to my summer holidays after a hard 9 months of study.

Monday, 17 May 2010

Bullet point update

This is going to be very short and in note form as I'm snowed under at the moment, but also very aware that I need to update you all.

  • I'm working myself into the ground with essay writing
  • I'm on to the last hurdle of my current OU course - Children's Literature
  • Trying to write ECA (End of Course Assessment - like a short dissertation-type-thing) and it's resulting in ECA (Emerging Cranial Atrophy) ;oP
  • Not sleeping at all well and have had two nights this week with no sleep at all, and all other nights have been disturbed
  • Lungs are on the downward slide
  • I think when the essays are done and sent, and the adrenaline has subsided then I might be in for a lung-splat :o(
  • Peak flow currently around 150 post-neb, so while that's pants it isn't (yet) awful awful awful ... for me.
  • Lung grumpiness is contributing to lack of sleep
  • Lack of sleep has meant that I've listened to a lot of the World Service.
  • Heard a news story on WS a week or so ago about a British man in Spain (a Lord, or something ... can't remember) who's been issued with an eviction notice ... on his grave! He's been dead since the late 1960s, but the authorities are seriously considering exhuming him for not having his grave maintained, which isn't all that surprising as his wife died not long after him and they didn't have any children. Madness!
  • Heard another item on the news about the result of one of the local elections, but unfortunately I can't remember where it was. Anyway, the results of the two leading parties were exactly the same so they got out a pack of cards and drew for the highest - highest card won! Shockingly this is within the laws of election!
  • Missed cateract operation date last week because the first I knew about it was a phone call from a nurse on the eye ward asking me if I knew I was supposed to be there for surgery. No! I didn't! They'd forgotten to send me a letter! &*^£%! I've had to go back on the waiting list and can only hope that they tell me about it next time. Very, very annoyed!
  • My shoulder is still sore, but it's mending now
  • I've run out of milk and the cat is rubbish at shopping

Sunday, 9 May 2010

A backwards glance

Last week it was my mum's birthday and in celebration she had a week away, hiring two cottages in North Yorkshire for the family to congregate at. We all went - My brother M with his wife N and two boys O and D, my brother C and his new wife S (they were married only four weeks ago in Cambridgeshire - a very lovely time), my step-dad J, and myself. Everyone else went from Saturday to Saturday, but I knew that although it'd be lovely it'd also be tiring and it'd be daft to overdo things, so I only went from Wednesday to Saturday. I did indeed have a very lovely time, and it was great to be with everyone again, even though we had all recently been together at C and S's wedding. Weddings are busy and there's often little opportunity to spend quality time with those you'd like to, and although C and S's wedding was small it was typically busy. I only met S for the first time the day before the wedding as I'd been away in Somerset when she and C had been up to meet and stay with my dad and step-mum back in September, so it was lovely to get to know S a bit better at Mum's birthday week away.

The cottages we stayed at were lovely. They were on a working farm not far from Thirsk, but with the feeling of being pretty much in the middle of nowhere. From the front of the cottages we had a great view of the Kilburn White Horse over the farm's sheep fields that were abound with joyful spring lambs. There were two lambs in a small pen in a barn just off one of the fields. One of them had been rejected by its mother; the mother of the other had died, so both were being hand-reared and the farmer had told us it was fine for us to take my nephews to see them, which resulted in 18 month old D acquiring the word lamb into his vocabulary, and very sweetly waving and saying, 'Bye bye lamb' when we left them. The whole place was very child-friendly with a huge field for kids to run around in, and also with a big climbing frame with slide, a set of swings, and an enormous trampoline. O and D particularly liked the trampoline, even distracting O from the slide, which he's usually a real fiend for. The cottages/farm also have an indoor swimming pool and sauna, which the boys loved, going for a swim every afternoon. I would have liked to join them and the others in the pool, but I didn't think it'd be terribly sensible while the POTS is so unstable and I'm still passing out so much; and the sauna would have been an even worse idea as the heat could affect my BP. I tried to make the most of the times when the others were at the pool though by doing some study on the Thursday afternoon (I had an assignment due), and having a very needed sleep on the Friday afternoon. Friday was my mum's actual birthday and we all went out to The Hare Inn - a 13th Century pub in nearby Scawton - for a meal. I had to take my own food, of course, but the pub were fine with that, and when it came to puddings we even found that there was one they did that was Becky-friendly - Lemon Possit. It was delicious, and it was wonderful to be able to enjoy eating out somewhere other than Peppy's (even though Peppy's are great and ever so good to me), although it did cause some anxiety for the rest of the afternoon in case I had a delayed reaction to it, but there was nothing in it that was likely to kill me, and all was well :o) After the meal Mum, J, C, S and I all went to Rievaulx Abbey. It's a place that W and I had tried to go to earlier in the year, but it was out of English Heritage season, so we'd ended up going to a nearby National Trust place instead. It was nice to get to have a look around Rievaulx Abbey at last, and it really is quite spectacular. I was, however, utterly exhausted afterwards and was grateful of the chance to have a fairly lengthy afternoon sleep back at the cottages while the others went swimming.

I think it was the Thursday afternoon when I was doing a bit of study when C came in for a chat. I don't get to see C very often, because he lives in Cambridgeshire and is very busy with work without much holiday. C's had a lot to contend with over the years, and has led the most bizarre life of anyone I've known. He's overcome a huge amount though, and has miraculously got his life back on track when it could so very easily have gone so very, very wrong. He's the person who I admire most in all the world, and it was great to have the opportunity to talk with him. He came into the cottage clearly knowing that I was alone and he wanted to talk a bit about our first step-mum K, who was a very odd lady and a very destructive force in our family. She died in March 1996 from skin cancer, and despite her complexities and the negativity that we all (my brothers and I) felt towards her, I was upset when she died and this is what C wanted to talk about. For all that he and S are now married, they've only actually been together for about a year, and C thinks that S is having difficulty in understanding why he is having trouble expressing the very complex relationship/situation/person that was K. He's not alone though - it is/was very complicated. K clearly had some mental health issues that weren't dealt with or even properly recognised by those immediately around her (or herself), and I've already mentioned that she was a destructive force ... but her extreme immaturity led to some fun times too, and that, for me, is where the confusion has been. How do you marry together the person who instigates holiday activities that feed the child's soul with the person who has inane jealousy of your mother for 'getting' your father first, confuses you with your mother and consequently frequently treats you atrociously, and who tears the family apart with hate and a degree of insanity? Very confusing for anyone, but especially when you're a child ... and for all that I was almost 22 when K died the confusion was unresolved, and maybe some of it always will be, although it matters less these days ... it has less immediate effect or reason to cause difficulty. C was younger though, and with other complicating factors for him I think it was even more difficult for him to comprehend, so it's not very surprising that he's having trouble expressing it to S. I've been pleased that he felt able to talk to me a little about it, and I've said that if it'd be helpful then I'm more than happy to talk through some of it with S there too. I'm not sure if he'll take me up on the offer, but it's there. I've found myself thinking about it all quite a lot since our chat though, and have talked about it myself with Mum too, who of course has a different perspective on the whole situation, so it's interesting discussing some of it with her too.

Families are weird things, aren't they? Kind of closed entities, yet so vulnerable to change too ... which can have both positive and negative consequences...