Christmas and all that jazz

In case you haven't noticed, it's Christmas time.  Well, it's been Christmas and now we're in that limbo time between Christmas and New Year, during which I have done a whole lot of nothing.  It's been prescribed nothingness because I've got some collapsed vertebrae (i.e. compression fractures in the spine) in my lower spine.  It's another side effect of the long-term high-dose steroids I take for my lungs.

I first had back pain in August/September, but didn't think much of it.  Then a couple of weeks ago I suddenly had excruciating pain that was making my legs feel weird - kind of tingly and achy all at once - and some weakness in left leg.  I thought maybe I'd pulled something so waiting until the next day to go to my GP, thinking that maybe a good night's sleep would help.  Only I didn't get a good night's sleep, and half way through the next day I decided that I probably should see my doc.  When I did at last see him he sent me straight up to A&E, which was rather a surprise because I hadn't thought that back pain would warrant an A&E trip.  X-rays apparently showed vertebral wedging and compressed vertebrae, and the A&E doc decided that I needed to have an urgent MRI, though thankfully not so urgent that I needed to be kept in.  It turns out that a request for an urgent MRI can take several weeks, but I got my appointment through the other day, weirdly for next Sunday at stupid o'clock in the morning.

So I've spent the majority of the festive season flat on my back dosed up on Tramadol.  Unfortunately Tramadol and alcohol are a bad combination, so I've had to skip the meds on the days I've wanted a drink, like Christmas Day.  I don't usually drink much alcohol, but I have to say that I did make an exception this Christmas, although it was spread throughout the day.

Despite essentially having a broken back, I had a lovely Christmas Day.  I've usually gone to my mum's in Edinburgh for Christmas, but this year she and my step-dad spent it with one of my brothers and his family down south, so I went to my good friends R and M.  Just to be clear, I was invited; I didn't just turn up and say, 'Hi, I'm spending the day with you, and by the way, happy Christmas' ;o)  R and M picked me up around 11am, and as previously arranged, we were all in our Christmas pyjamas for a truly comfortable Christmas Day :o)  When we arrived back at R and M's it wasn't long before we got stuck in to the enormous spread of cheese and biscuits and wine.  Mmmmmmmmm cheese.....  I think it's fair to say that we stuffed ourselves.

Once we could move again, or rather, once R could move again - about six hours later - she started on the Christmas dinner.  As my main contribution to the shared meal, I'd bought the turkey, but R did amazing things to it (nothing weird!  Just tasty things like soaking it in brine and spices for 24 hours prior to cooking, as per a Nigella recipe) to make it exceptionally tasty and succulent.  Ahh, it was delicious!  Oh yeah, we had all the usual turkey trimmings too, but it was an hour and half later that any of us were able to squeeze in a slither of my mum's Becky-friendly Christmas cake.  In fact, it probably would have been longer if time hadn't been an issue, but my taxi was due at 11pm, so it was then or never (or more likely, Boxing Day), and seeing as we hadn't opened the Baileys it seemed rude not to wash down the cake with a large glass of the creamy stuff each :o) hic!

So that's an outline of my Christmas Day.  A very relaxing day with friendship, food, alcohol, presents (yes, we had a time of presents too, obviously), chat, laughs, Doctor Who, cheese, santa hats, pyjamas, fun, and lying around on the sofa.  Yes, I'm rather afraid that I hogged one of their sofas (sorry R and M), but I was only obeying doctors' orders, and neither or them seemed to mind ... or at least, they didn't say they minded...

Anyway, Christmas Day was lovely.

I've had a very, very quiet time since then, having done very little indeed.  I've needed it to be like that, if I'm honest, although it's also a bit lonesome at times, and definitely boring.  I've caught up on some of my TiVo recordings, cuddled the cat a lot, slept a lot (thanks to the Tramadol), read a bit, tried not to think too much about most of the year that has been (although I will be doing so in the next day or two for my annual Review of the Year), and enjoyed the Christmas decorations.

My mum and step-dad are coming down to stay for a few days over New Year.  R and M are coming on New Year's Eve too :o)  It'll be another cheese fest with wine, chat, and maybe some games, but generally low-key.  I'm looking forward to seeing Mum.  For all that I had an excellent Christmas Day, I did miss Mum too.  She and J were only going to stay until Friday, but since I got my MRI appointment for Sunday, Mum's offered to stay until after that and come to it with me :o)  We won't get any results then - they'll take two to three weeks to get back to my GP (oh, and they're checking for disc, nerve, and spinal cord involvement) - but it'll still be good to have her support.

It's still early days for my back - I'm told it will take two to three months to repair itself - but the rest/lying down does seem to be helping.  Having said that, I will go completely mad if I'm not able to get up and do things soon, and I'm pretty sure it would be good for my back muscles to start having to do some work before long ... wouldn't it?  It's surprising how little information I've been given about these sorts of things actually.  Hmm.  Oh well, I guess the doc will tell me more when I go for a check up the week after next.

Well for now I think it's time I peel myself off the sofa, feed the cat, and go to bed.  The Tramadol (and nefopam and paracetamol) has really messed with my sleep pattern, but I don't care much if it means that I sleep through some of the pain.



Oh, and my blogosphere new year's resolution will be to post more often.  I've been rubbish at it this year.  Sorry.  It's been tough.

The pit and the monster

I think I've said before how, some time ago, I came to the understanding that depression is a monster that tells you lies.  I've used this analogy a lot in my psychology sessions, and it's come to represent depression itself as a beast.  I've described the experience of depression probably as many others have done - like being in a deep pit.  Whilst it's quite an easy and obvious metaphor, it's also quite useful, because emerging from depression isn't usually (unlike my previous miraculous experience) a change that happens in an instant.  Rather, there is a slow recovery, a gradual relief that can be difficult to see happening whilst you're in the experience.  Using the analogy of the pit kind of gives a scale to the depression ... it means you can sort of describe how far down or up the pit you are; whether or not there are any signs of life in the soil or above the hole; whether or not you can see light at the top of the pit; how muddy the pit is and whether or not it's sucking you down further; and whether or not there's anything around that you can use to get out of the pit.  I also imagine that the vicious beast - monster - of depression lives at the bottom of the pit, and the closer I am to the bottom, the louder and more numerous are the lies it is telling me about myself.

I was talking with my psychologist again during the last session about where in the pit I see myself as being at the moment.  A couple of weeks ago, when I wrote Away with it, I/we thought that I was maybe half way up - things were still very difficult, but there was a bit of light at the top of the pit, and perhaps there was a worm (a sign of life) wiggling a little way out of a hole in the side of the pit.  Talking in the last session, I said that I felt that I'd sunk a bit.  I'm not on the bottom, like I was when at my worst point, but there was no sign of any worms for company, no signs of external life.

I often talk with my psychologist about the things that make me sink in to the pit, how I ended up there, etc, but my homework this week is to think about those things that have perhaps helped me to get off the bottom of the pit; the things that have helped me to ignore/challenge/not listen to the lies the monster tell me; the things that helped me to get as far up the pit as I managed to get before slipping back.  It was suggested that perhaps I might write my thoughts about these things on my blog, and before the end of the session I'd decided that yes, I'd write about it here because, after all, I've shared with my blog readers much of my depression experience.  This might take me a while because I haven't actually thought about it a great deal since my psychology session on Friday as my mum's been staying with me over the weekend.  What follows will very much be me thinking out loud, so if it doesn't make a great deal of sense, that's why.

So, Things that have helped me so far in surviving/recovering from depression:

1.  My psychologist and the sessions with her

S has been a constant for me during all of the distress.  I have felt able to talk to her about anything and everything, sharing my darkest and most frightening thoughts, the true extent of my desperation.  I've cried a thousand tears in front of her, broken down in uncontrollable sobs, and known that I've been safe to do so.  I've trusted S with the most vulnerable and broken pieces of myself and known that none of it would be turned around and used against me (this is in contrast to someone else in an on-going situation, so has been a very pertinent point, and a significant trust).  Unlike the multiple faces of the Crisis Assessment and Treatment Team (CATT), and the unreliable presence of the CPN, S has been there throughout without sessions being cancelled or postponed, and she is one person with whom I haven't continually had to relate the origins of my distress.  Yes, S has been, and remains, vital in this process of defeating the beast and finding a way out of the pit.

2.  Friends

I was terribly afraid of telling my friends that I was in the bottom of the pit and being devoured by the monster (and that's not how I put it to them when I did tell them).  I was afraid because of all that I'd put them through during my previous severe (and very long) depression.  I thought that maybe they'd be too afraid to stick around, not so much afraid of depression, but afraid of what depression has done to me before and how difficult that was for them to watch.  So I tried to keep it from them this time.  I tried to separate myself from them to pre-empt the pain I would feel if they couldn't cope with the depression again and opted to separate themselves from me.  It turned out that all of that was one of the lies that the monster was telling me and got me to believe, because when I did ultimately 'come clean' to them about how desperate I was, they held me in their friendship.  My close friends came to me, sat with me, and took gentle care of the pieces of me that they came across.  They still do.  They text, email, tweet, talk to me on FB, and come round to my flat.  They encourage me to do things with them, to go places, and when I'm not physically well enough to do that, they come round.  One of them has started tidying up my huge back yard for me so that it's a nice area for me to sit in or just to trundle through as my wheelchair access is at the back of the house.  They encourage me to go out with them, meet them in the park for a trundle.  They suggest that maybe they come over to bake cupcakes, just because it's a nice thing to do.  They take me to shops I didn't know about to buy games for my Wii.  One of them has sometimes phoned me in the middle of the night when she knows that I'm likely to be at me lowest, and she has talked with me for five hours, six hours, all through the night, during which time we've cried, we've laughed, we've done the whole spectrum of emotions and covered every subject imaginable and some you might not think about.  They 'keep me safe' in all my insecurities about seeing mutual acquaintances in group situations that terrify me simply because I haven't seen others for so long and I dread the question, 'How are you?'  One or two of those friends occasionally read my blog, and if those friends happen to read this I would like to say a sincere and heart-felt thank you.  You are so very precious, and I hardly dare believe that I deserve such wonderful friends.  Thank you.

3.  Music

I've written a little about playing the piano again, and spending hours immersed in playing the violin again.  I haven't been physically well enough to do any of that for several weeks now, but those were things I was doing when I was a little further up the pit than I currently am.  But they haven't been the only musical things I've been doing.  The choir I helped get up and running last year - Flotsam - is very important to me.  Since being ill with the pyelonephritis again I've been too poorly to go to choir and I've found that really difficult.  Choir gives me time with people (very important when I spend so much time on my own, unable to work, unable to get out much because of chronic ill-health) without having to interact too much with many if I'm feeling fragile.  Choir gives me a place to belong, somewhere I can be a part of something good, a place where I'm the same as everyone else because we are all singing.  Okay, so I can't be the same when they all stand to sing, but I'm kind of used to that, and it doesn't change the fact that I'm still singing just as they are.  Flotsam's choir master is a dear friend who has known me (and I've known, obviously) since I was thirteen.  He has seen me through some of the toughest times of my life, and even if I don't tell him any details, I always feel able to tell him if I'm not doing too well, and that has made Flotsam a very safe place to be.  Of course, music itself can have an emotional effect, as I'm sure most of you have experienced for yourself, and the music we sing in Flotsam tends to be either uplifting or soothing.  Music is also a part of me, something that has always been in my life, and has sometimes been my only way of expressing anything at all.  It allows me to connect with the world - something in the world - that nothing else quite reaches, and it has been a creative outlet for me at a time when I've felt extremely stunted in my ability to creatively express myself in writing.  It's not the same, but it helps.

4.  Mum

During most of my previous deep depression I was largely unable to talk to my mum about any of my feelings.  For various reasons I was angry with Mum, and I closed myself off from her.  It was kind of necessary at the time, but there's been an enormous amount of healing that has gone on between us and we now have a wonderful relationship.  Mum's support throughout this horrible time of depression has been invaluable and constant.  She's phoned me often, but not intrusively so, and during the calls I've been able to tell her a lot of how I've been ... yes, at times I've held back from telling her everything, but in the end - maybe a few weeks down the line - I've been able to share most of those things too.  Mum's been down to visit a few times, which has been very supportive, great company, and has provided much-needed TLC.  Of course, there was also my trip up north to stay with her and J that unfortunately culminated in a hospital admission with pyelonephritis.  Before I took ill, I was having a lovely, relaxed, gentle time with Mum and J, which felt nurturing and lightly refreshing.  It was bad luck that I got so poorly and didn't really get over it while I was away so that it came back almost full-on shortly after getting home.  The goodness gained by staying with Mum was largely erased, unfortunately, except that it helped me with number 5...

5.  Making some decisions

Out of necessity, I'm going to be quite vague here.  Firstly, there has been an on-going situation that has caused me a lot of distress.  I'm not currently at liberty to expand on this for various reasons, but time with Mum, talking with Mum, and several in-depth conversations with my psychologist about the situation have led to me reaching a decision.  I've yet to act on the decision made, but I'm working on it, and even coming to the conclusion that I have has helped.

There is another decision that I'm going to be equally vague about, but concerns something I've thought about a little in the past.  I mentioned it to Mum when I was with her in Edinburgh, and since then have thought about a great deal.  It's probably something for the long-view rather than to implement immediately, but I am beginning more detailed thinking about it, and have decided that I will most likely follow it through at some point.  I think it's a good decision to have made, but will take considerable work.  Anyway, enough of being vague.

6.  Getting out

I've been too unwell with the recurrent pyelonephritis since coming home from Edinburgh to go out much at all.  My days have been pain-filled and isolated as I've lain in bed or on the sofa trying to rest, trying to get/keep my temperature down, watching the clock for when the next antibiotic is due or pain killer can be taken, cuddling the cat whenever he's wanted and sometimes when he hasn't been too keen on it, watching daytime telly, and whiling away time on FaceBook.  Before that I was trying really hard to make sure that I got out at least once a day.  It might just have been to the shop, the park, a trundle around the local streets, or it might have been to town for some window shopping, or a wander along the quayside.  I was avoiding driving anywhere because my concentration was so poor that I didn't trust myself to be safe, which meant that I couldn't take myself off to the coast - a place I usually manage to find some solace.

7.  FaceBook

Okay, so this might sound strange to some, but I've found the contact with others through FaceBook valuable.  At my very worst, when I wasn't able to tell my friends how I was, I didn't go there - I found it very, very difficult to interact with anyone in case I let it slip how I was - but when I did tell folk what was happening, FaceBook helped a lot.  While I was isolated in my depression and by my difficulties in mixing effectively with others, I could roam around FB in the ethereal presence of others online.  I have wasted many, many hours playing Bejeweled Blitz (sic) and Scrabble, clicking on links to You Tube videos posted by others, reading every status update of everyone on my friends list, and looking at millions of pictures of cats.  To those of you who have never experienced depression and have busy, active lives may see all that time on FB as a total waste, but actually it's kept me connected to the world and reminded me of all people I know who are out there.  It's given me something to do, and 'somewhere' to be.


I'm finding it very difficult now to think of other things that have helped.  I'm sure there are more things, but I've been trying to write this list for three hours now and I'm brain-dead.  Perhaps more will come to mind in the coming days, but I have more 'homework' to do ... and it's difficult, so it may be a while until I get back to you.

A bit of a mix

I'm home. I got home on Tuesday evening after a lengthy wait for some of my meds that had inadvertently been left by the pharmacy hatch rather than being sent up to the ward. They'd been ready for three hours when they were finally located and then collected. Oh well, such is life. I never expect a quick getaway from hospital so I just get on with the wait and while away the time (or should that be 'wile'?). Anyway, I got home in the end and it's great to be here. The cat has been ever so cuddly >^..^< It's wonderful to be in my own surroundings with my own things and no hospital clatter :o) The only thing is that I'm exhausted and finding it hard work being at home too. My lungs aren't fairing too badly given how recently I've been discharged. The main problem is the anaemia and the iron. It's wonderful that the pharmacist managed to find a preparation of iron that I'm not allergic to, but I am having other side-effects - gastrointestinal effects that are getting me quite dehydrated, even though I'm trying to drink loads of water. I'm told these effects should wear off fairly soon, but in the meantime it's not pleasant and isn't helping me achieve a general feeling of wellness. And there's the anaemia itself. My Hb was still around 8 when I was discharged, which was a bit controversial, but as I have a suppressed immune system, and I'm a sitting target for infection the longer I'm in hospital, it was thought that I'd probably be better off at home. I agree, except that I don't feel great and I can't do very much of anything ... even staying upright is a bit of a challenge at times so I'm spending a lot of time sofa surfing and thinking about doing some study to catch up, but I don't have the mental energy to concentrate :o( I must get my head around some study at some point though, because I'm getting quite behind with my course now. I'm hoping that the gastro effects of the iron will soon sort themselves out, and that then I'll feel a bit better in that respect. The iron will take several weeks to have full effect on my Hb (so I'm told), but I should hopefully begin to feel some benefit much before then. I have to go for blood tests at my GP surgery the week after next to check that my Hb is starting to come up, and if it isn't then they're to look closer into the cause of my anaemia, but I sincerely hope that things are significantly improved.

One of the very disappointing things of this whole situation is that there's no way that I'm going to be up to doing my gym marathon on 25th. I know it was an (over) ambitious date to set in the first place, but I needed to set a new date when I did ... and now I'm going to need to set another one. This is something I desperately want to do, and I will do, but I'm not going to be stupid and do myself in in the process. I want to do it before Christmas, and I want to do it before the pre-Christmas craziness gets too crazy, so I'm now proposing to do it on 15th December. This gives me four and a half weeks from now to get back on track with health and fitness, and is hopefully more realistic than 25th November. I am disappointed, but I know that I'll do it, and in the end there'll be an even greater sense of achievement. Oh, and it gives people more time to sponsor me, or donate through my Just Giving page.

So yeah, a bit of a mix - it's great to be home. It's great to have my creature comforts and be with my little black creature (the cat). It's not so great feeling not so great and being so worn out. I'll press on and come through in the end, and while I wait I'll snuggle up in my cosy new slanket that I'm loving :o)

Standstill

Britain got snowed on. You'd think this was completely unheard of by the news coverage it had yesterday, and continues to get today. Okay, I understand that 'The South' doesn't see snow very often, but up here in northern England we do get it most years, and this isn't the first dump of the white stuff we've had this winter. I find it a bit pathetic that the country (or at least London, which by the news coverage you'd think was the only part of the country that mattered when it comes to these things) comes to a standstill when we get hit by 'up to a foot of snow'. Canada, Russia, Norway, Switzerland, and countless other countries get more snow than that and yet still manage to keep going, so how come 4cm of snow causes such havoc in Britain? It baffles me. All the snow's gone in Newcastle now, although I suspect there's still some up in Northumberland and over the North Pennines.

I haven't had much to do with today, and not because of anything to do with the weather, but rather because I'm not feeling too grand. I didn't sleep at all well last night, because my lungs were being grumpy, and they've still been overly stroppy today. My peak flow (see link under 'Asthma and Allergies' in the left hand column) is 130 post nebuliser, and that's not good. This may be the slippery slope down to a hospital admission, although I'm hoping not. Mind you, I can't complain as I've done pretty well not to have been in hospital since November, which is something of a record for me. We'll see what happens, but at the moment I am at a standstill as well as the country. I've been staying inside as much as possible over the last few days as the cold air doesn't help the whole breathing thing, but the flat's not that warm either. I've got the heating on, and at the moment the gas fire's on too, but the cost of it bothers me so I don't like to have either on too much. There are times though, when putting on several layers of clothes and wrapping yourself up in a blanket just isn't enough, and when the ability to move about is already hampered by ineffective breathing, the additional effort of carting around half the clothes you own and some of the bed doesn't help. It's hard work though, this breathing lark, and I wish I could do more than sofa surf, but right now I haven't got the energy, and in fact I didn't actually manage to get out of bed until 5.30pm. I'll be going back to bed fairly soon. I've ground to a halt once again, but need to rest if I'm to have a chance at staying out of hospital.

Couch potato

I have turned into a couch potato. Okay, it's through necessity, but it's frustrating. I want to be getting out and about, doing things ... I'm not sure what things ... just living. At least I should get to the medieval party tomorrow evening :o) which is a large part of my week or two of sofa surfing, although it is also because I'm still not doing a good job at breathing. Actually, I'm pretty certain that once the adrenaline of keeping myself going for tomorrow's party has disipated, I'll end up in hospital ... probably early next week :o( I'm not looking forward to it. Who would though? In a way it'll be a bit of a relief, because it's been (and continues to be) a struggle, but that fight, even the thought of it, is exhausting. I can hardly bear to think about it, and I don't want to, but I kind of have to, because I know it's coming and I have to gear myself for it. It's a strange thing knowing that you might die in a few days time. Of course I always hope that I'm going to get through, but it's been such a close call so many times, and there are no guarantees that I will survive. I don't give up though - I can't, because if I did then there'd be no reason to fight ... and life would be depressing the rest of the time. That doesn't stop it from being hard, and it's sometimes an effort to keep positive, especially as it's so relentless.

The positive thing about being forced to spend so much time sitting still is that I've actually caught up on my work again and I've written my first assignment for my new course :o) It's a short story about a family who receive a letter from their son who's serving in the armed forces. The only thing is that the day they get the letter is the day of his funeral after he's been killed in combat. It's all very sad, and wasn't easy to write or research. I had to do quite a lot of research to get some of the details right and to make it seem authentic, but although sad, it was interesting. I sent the finished piece off last night, so now I have the nervous wait for the result. I always think it must be difficult marking a piece of creative writing as it's so subjective, and I don't much like being on the receiving end of that subjectivity ;o)

Right then, off to do some more sofa surfing, looking forward to the medieval party tomorrow and trying not to spend too much time thinking about the battle that's most likely ahead of me sometime next week.

Accidental decision

I'm not a whole lot better than yesterday, despite the slight increase in prednisolone, and this morning I was still umming and ahhing about whether or not to phone the ward, as instructed by the registrar yesterday. I decided that I'd see how things went a little longer and would make a decision by three o'clock. The plan was scuppered by falling asleep on the sofa for a few hours and not actually waking up until almost 5pm, so my decision was made by accident, because the docs would've left the ward/gone home by then. I will take things easy over the weekend and hope that things stabilise, or even improve, but obviously if they don't, or if they get worse, then I'll get myself to hospital. As I said yesterday, although my lungs are far from good, I don't actually feel as though I really need to be admitted ... at least not when I'm not doing anything - moving around is a different matter - and perhaps a little longer than 24 hours on increased pred will help. I guess I'll find out.

One of the difficult things about an unstable chronic illness is the interruption it causes in one's life. I can't make firm plans for anything. I can't guarantee that I'll physically be able to do something on a particular day or a particular time. I still make plans, and I really appreciate the things that I get to, but there's always the possibility that I won't be able to follow a plan through. Take tomorrow for example - my friend K and I have taken it upon ourselves to organise monthly social events for those 18+ at church. This month we're doing an evening of games and puddings, which is happening tomorrow evening at another friend's house. Obviously as one of the people organising it I've been wanting to go, and I'm going to be making a Becky-friendly and gluten-free chocolate cake (K has celiac disease), but I know that the way things are lung-wise that there's the possibility that I won't be well enough, although it's not going to be a particularly active night, it's not far away (and I can drive there if I need to), and at least one of the people going is a doctor. I'll be disappointed if I don't get to it, but I know that I need to be sensible so I will see how things go. There is though something I very much want to get to the following Saturday, and this is a friend's 40th birthday party with a medieval theme and compulsory costume. I've known about it for months, I've bought the outfit - a medieval queen's dress (not the genuine thing!) - and I've been looking forward to it for ages. I'm hoping above all hope that I get to this so I have to make sure that I'm well enough. It's so difficult when there are things that I really want to do, have planned to do, and then see the possibility that I might miss out. And it's not just that I miss out on one thing, but that plans are constantly scuppered and can only ever be provisional. Sometimes I find that I make it to whatever it is that's planned, even if I'm having a bad time in the run up to it, but then do a spectacular splat afterwards ... it's almost like adrenaline alone keeps me going, and then it runs out so my lungs give up. Although this sounds odd, I don't mind that so much, because at least I've done something enjoyable and the thing that I wanted to do, though obviously I wish that I didn't have the post-event splat. Only time will tell if I make it to the games and pudding evening tomorrow evening, the medieval party a week tomorrow, and if my lungs will do a post-event splat, but I'm hoping that I get to them both and that breathing improves. In the meantime I have to be careful and sensible. How boring ;o)

Tough day

Today has been really tough, and is continuing to be this evening. I didn't get any sleep last night, because every time I lay down my lungs decided to tighten up, and then even when I gave up on the lying down bit, my lungs refused to play nicely. Now I don't know why this should be, but here's a very strange thing I've noticed: a day or two before a bad spell (or major attack) my heart rate goes very low, particularly at night, and last night I noticed that it was going slowly so I counted it and it was only 49bpm. I'm sure there must be some medical explanation for this, even if it's not a common thing, but it is something I've noticed and is almost like a warning sign for me that things aren't good and they may well be about to get worse. Indeed, today has been a bad day.

First thing this morning I was able to go out briefly to the local post office, where I needed to go to post a parcel for baby Eleanor, but before I got home my lungs were beginning to hurt. By the time I got home I was exhausted, tight-chested and very much in need of a nebuliser. I sat on the sofa and nebbed my lungs into vague submission, and then stayed on the sofa for several hours unable to do anything much at all. I have been coughing a lot, wheezing intermittently, short of breath, exhausted and generally feeling rather unwell. At some point in the day I made the effort to read ten pages of my course text book, but I don't think I've taken much in, and since putting it down I've done a lot of nothing again.

I went briefly to the shop around the corner about an hour and a half ago to get some milk and I'm still suffering for the exertion. My peak flow is 140 post nebuliser, and my lungs just don't feel like they're doing this whole breathing thing as they should.

This evening I really don't feel very well. I will see how things go, but I have a feeling that if they go off (which I'm hoping they won't), then it's going to be very fast and I'll have to act very quickly. I am not parting from my community care alarm tonight.

Bagpipes

Today is a bad day for my lungs and they're doing a fine impression of a set of bagpipes. I haven't been too grand for a couple of days, which I think has been down to the warm, humid weather, but today the air is a little clearer so today's lung-tightness most likely isn't due to that. This evening I've wondered if I'm getting an infection of some kind, because I've got a very slight sore throat and a few sniffles, which could just be a cold, but colds more than often land me in hospital, because my lungs go into major protest. This is the down side of being on immuno-suppressants for my asthma - susceptibility to infection is greatly increased - and my immune system is fairly screwed up to start with. So yes, I've been struggling today and I'm not sure whether this is the beginnings of another downward spiral into hospital, or if it's a blip that is rescuable (is that a word?). My peak flow has fallen to 150 today and isn't picking up much or for long after nebs. This is a bad sign, but I'm really hoping that I can beat this blip and not end up having to fight for my life again in the very near future, especially as I have an exam for my OU course in about seven weeks time. I'd also just like not to have to do the exhausting fight.

I suppose the upside is that I'm forced to sofa surf, which means that I have more study possibility than if I was free to go out and enjoy myself ... Hmm, I have a feeling that this is sounding a little desperate in the attempt to find a positive. I am.

Mix-up

I was away earlier in the week, having a few days up in Bamburgh with some of my family for my dad's birthday week away, although it's not actually his birthday until next week. Anyway, I was with my dad, step-mother, brother, sister-in-law and nephew from Saturday until Tuesday. The weather was fantastic, the cottage Dad and step-mum had rented was lovely, and the time together was special. On Sunday we all went on a trip to the Farne Islands, which is one of my most favourite places in Northumberland, and we saw loads of seals, puffins and arctic terns. Actually we got dive-bombed by several arctic terns when we landed on Inner Farne, because some of them had chicks that had decided to take up residence on the public walkway. The parents hovered above, squawking at us and then diving at us in their efforts to get us away from the chicks. That's fine, except that you didn't always see the chicks on the path until you were being attacked by the parents. It was great all the same though, and I got some wonderful photos, although I have yet to download them onto the computer

Monday was spent largely on the beach ... and swimming in the sea! Dad came swimming too, and my nephew, O, came for a paddle. He's only 19 months old and when the waves splashed up on him they were up to his middle, but he wasn't at all phased by it, and seemed to enjoy himself greatly, laughing and giggling his little heart out. When I was drying off in the sun, I made lots of sandcastles for O to knock down. After I built them, he'd look at them, poke them, and then flap his hands to joyfully knock them down. I must have made at least 50 sandcastles that afternoon. After that I buried my feet in a big hole that the dog of a friend of my dad's had dug earlier on. O couldn't quite work out what had happened to my feet at first, so then we (me and my sister-in-law) sat O in the hole and buried him up to his middle. He thought this was great fun, especially when I then built a sandcastle on top of his sand-covered legs. Eventually we had to go back to the cottage - all of five or ten minutes walk away from the beach - to get O fed, bathed, and in bed, but he was very happy and the following day my brother said that he thought Monday had been O's best day of his whole life so far :o)

My brother and his family had to go home to London on Tuesday so that my sister-in-law, N, could go back to work on Wednesday. I stayed with Dad and my step-mum, B, until the early evening, and then slowly wended my way home, following the coastal route, and occasionally stopping off at some of the beaches along the way. It was still warm and sunny then (it's been raining most of the time since I got home), and lovely to take it easy as I made my way back.

It was a very lovely time, and quite a special time too, but also quite hard going on the lungs. There was something around that my lungs didn't like, particularly at night, so I didn't sleep well and had to use my nebuliser a fair bit more than the usual four times a day. I tried to keep from the others how much of a struggle things were, because I didn't want them to worry too much, but it's difficult to get the balance between that and making people aware that there's the possibility of needing further help. Luckily I didn't need emergency assistance, but it's been a bit of a struggle since I got home. Today has been particularly difficult with a sudden lung splat this afternoon when I was out getting my prescription from the doctors' surgery. I avoided having to see the doctor, but only a few minutes after I left the surgery, I ended up nearly collapsing at the pharmacy, and spent the next thirty to forty-five minutes sitting in their consultation room using my nebuliser. I managed to get to the point of being really quite unwell and on the verge of needing an ambulance (or rather, on the verge of agreeing to having an ambulance be called) to being still unwell, but able to get home. I've spent all my time since then sofa surfing, watching the telly, and using my nebuliser to keep/get things under control. I have my community care alarm to hand in case it all goes horribly wrong, but I'm hoping that things will continue to calm and I'll get through at home. Obviously I won't push myself beyond the realms of sense, but I really don't want to end up in hospital if I can help it.

So yes, it's been a bit of a mixed time, as the title suggests - a great time away for a few days with family, but alongside worsening breathing/lungs. Oh yeah, and I'm still trying to catch up with my OU studies, and desperately trying to get an overdue assignment done. I haven't been able to concentrate on study since I got back from the pharmacy/lung splat, hence the watching telly, but I did lots of reading for the assignment yesterday and earlier today, so at least I've done some.

Well now, I think it's time for me to move from the comfort of the sofa and my little nebuliser, to the comfort of the bed and my bigger nebuliser (they do the same thing, but the big one is noisy and not easily portable, so it lives next to my bed). I'll keep you posted with how things go.

Night all.

Bagpuss

When I was a child Bagpuss was my all-time favourite programme, and it was the theme music was the first tune I taught myself to pick out on the piano ... though that might have been helped by the fact that the piano was amazingly out of tune at that time as I don't remember it being very difficult to pick out the Bagpuss tune. Since then Bagpuss has always had a place in my heart and I was delighted when several years ago he was chosen as the Asthma UK mascot, although this is slightly ironic as many asthmatics are allergic to cats. Anyway, today I was pointed towards this highly amusing article about Bagpuss and can certainly recommend a read of it. It's very silly and appeals to my sense of humour so I hope you'll enjoy it too.

By the way, although my lungs have remained in a state of questionable instability over the past few days, I seem to be getting through with the help of a lot of sofa surfing. Aside from being frustrating, this does seem to be helping me get down to some study for my OU course (currently doing literature), though I still seem to have managed to get behind a little this week. It's a never ending chasing of my tail (not Bagpuss' ;oP ), but I'll get there.

On that note, I'd better go and do some work.

Lethargy

I've been tired today, It could be argued that this is because of all the simming, which I'm sure has contributed, but it's not the full explanation. I haven't been sleeping well for weeks, partly because of lungs misbehaving, but partly just because I can't sleep. I'd been hoping that swimming would help tire me out enough to sleep better, but it didn't work so last night I took half a sleeping tablet to knock me out. That did the trick, which was great, but it's left me a bit zonked today. In addition to that, my lungs haven't been up to much today, particularly this afternoon and evening, and tonight they're doing a grand impression of a set of bagpipes. This always makes me tired, I guess in part because I'm not getting as much oxygen into my system as I ought, and also because the effort of breathing is so much more, even when I'm not in an awful state. I'm okay, and I'm pretty sure that I'll be fine, though I do have to be aware that things always have the potential to go extremely wrong extremely quickly. My community care alarm wristband is on and is going next to my bed tonight just in case it all goes pear-shaped, even though I've fairly confident it'll be okay - better to be prepared.

Needless to say, I haven't been swimming today. In fact I haven't done very much of anything today, except for a lot of sofa surfing. I was going to go to Tescos as I'm rather rapidly running out of essentials, but I haven't had the energy or breath for that. If needs be I'll go out in my electric wheelchair tomorrow and get what I can from the local shops, though I'm hoping that things will have improved.

Well I think it's time I went and dosed myself up on the nebuliser and tried to beat this wheeze and chest-tightness into submission.

Night all, and take care.

Absence explained

If you're a regular reader and have been missing regular new posts I'd like to apologise for my long absence. After the bad night I wrote about in my last entry I had another bad night, with the lungs and also sickness, and I ended up in hospital again. The sickness had been going on for a few days before I went in, and this meant that I couldn't keep down the medication that keeps me breathing, which is how come my lungs went splat. The sickness continued for two weeks of my hospital admission, with me unable to keep any food down and only a few of my meds from the beginning of this week. It was only on Monday or Tuesday that I started to be able to keep down food, and Thursday when I was finally able to hold onto all my meds, so it's been a long and horrible haul.

So things went really wrong on the Tuesday (I think that was 5th February). I phoned the ward I usually go to, but they had no beds. However, just from talking to me (or rather, hearing me really struggle as I tried to say single words to them) the nurse could tell that I needed help quickly and called 999 for a blue-light ambulance, but even in the time it took for the ambulance to arrive I sunk fast and was very ill by the time the paramedics arrived. I was taken to A&E where they put me on the infusion of aminophylline (the drug that usually eventually works for me) I needed, and is recommended by my consultant in a letter from him that I carry with me at all times. There is another drug that many asthmatics having a severe attack have - magnesium - but it's a sulphate and I'm allergic to sulphates so cannot have this, which rather limits what the doctors can do for me. Anyway, they started the aminophylline, kept me in resus for a couple of hours and then transferred me to the EAU's (Emergency Admissions Unit) resus at one of the other hospitals. I stayed in that ward all night, fighting for breath, being sick, unable to sleep or relax or help my desperate battle to stay alive. I was exhausted, but not quite ill enough to be ventilated on ITU. I was though transferred to the EAU's HDU (High Dependency Unit) ward, where I had another long day, long, wakeful though exhausted night, and continued battle for breath. My breathing very gradually improved from critical to bad, although the sickness continued and as I was getting quite dehydrated another infusion of fluids was started. Half way through the Thursday a bed became available at my usual ward at one of the other hospitals in the city, and I was able to be transferred.

It's always a relief to get to my usual ward - 29 - because they know me so well, know the severity and unpredictability of my asthma and what helps. This isn't to say that other hospitals/wards/doctors/nurses can't treat me as well, but if they don't know me and my lungs, there can be difficulties, and that doesn't instill confidence. Because of the terrible state that I get into with my asthma, and the terrifyingly rapid decline that can occur, doctors who don't know me often get frightened, and this was the case at the EAU. I much prefer that I'm kept in the picture and medics tell me what they're thinking, but it's hard when they tell you that they're running out of options ... very hard ... and scary. The EAU consulatant told me this, and also that he was reluctant to put me on a ventilator because he wasn't convinced I'd manage to get off it alive. I had no choice but to fight on alone. It's such hard work and so very lonely, because, despite being constantly surrounded by doctors and nurses, I'm unable to breathe enough to speak. I can't tell them I'm frightened. I daren't cry out my fear with tears as this will only make breathing harder. I don't have the breath or the energy to react to pain when they do the painful arterial blood tests that check various things including my oxygen and carbon dioxide levels. I am a thing that's there to be fixed, and at the disposal of any medic who comes along, who will do what they need to keep me alive. I know they're trying to help. I don't resent them, but I sometimes resent my situation and the isolation within the company. I know what to expect and I'm used to the routine, but I don't think I'll ever get used to the possibility of imminent death and the fight to stay alive. This is probably where my fight comes from - a refusal to accept it as normal, even though it's a frequent occurance in my life - and I am a stronger person for it, I'm sure, but I don't like it and I dread each attack as I feel it coming on.

Well, yet again despite the odds I have survived, and now I am back home. My breathing is better than it was, although not fantastic, and although I haven't been sick for several days now I still have a fair bit of nausea and some abdominal pain. I don't think I'm as 'well' as I usually am when I get out of hospital, and my consultant would've preferred it if I'd stayed in over the weekend, but having got to this stage of betterness it was agreed that I could do the rest of my recuperation at home. After all, several of the medications I take for my lungs suppress my immune system, and while hospital is a good place to be when you need it, it's not a good place to be in terms of picking up nasty bugs. The longer I stay there, the more chance there is of getting an HAI (Hospital Acquired Infection), and when I do that I tend to do it in style. I will need to take things very easy and remember that while my mind may be willing (although it's surprisingly frazzled today), my body isn't. Two weeks of not being able to eat and having only 188 calories a day dripped into your veins over 10-12 hours does nothing for your energy levels, and three weeks lying in bed does nothing for muscle tone. Needless to say, I am very feak and weeble. However, being back at home, surrounded by my own things, getting cuddles from the cat, with peace and quite rather the constant busyness of a hospital ward is all great.

The one thing I have done today, other than sofa surfing, has been to go and buy a Nintendo DS. Often when I've been in hospital I've thought that it'd be good to have some mindless distraction when I'm at the stage of being able to concentrate on anything besides breathing or sleeping, but some how I've never quite got around to treating myself to the games system that might help provide this distraction and time-passing. In anticipation of this recovery time probably being longer than average I decided to go for it ... even though I nearly passed out from the effort while I was in the shop, which was an indicator that I needed to finish my trip and get home. I've had fun this evening lying here slobbed out on the sofa, with the cat on my knee, playing various games and then spending silly amounts online buying more games, most of which should arrive next week.

Now I think it's time to head towards bed ... but quite possibly with my new Nintendo in hand, and no doubt with the cat following as he seems to have velcroed himself to me since I got home yesterday evening >^..^<

Taking liberties

I was woken this morning by the sound of the television mumbling away in the living room. This is a little unnerving when you live alone and you know that you've been tucked up in bed asleep. Once I'd come round enough to realise that the TV was on and I hadn't fallen asleep in front of it, I staggered out of my pit and wandered into the living room, whereupon I discovered Imposter Cat lounged comfortably on the settee again. Obviously, feeling very much at home now, Imposter Cat had decided that a spot of breakfast news on the telly was just the thing for a Sunday morning. I disagreed, especially as this decision had been made by an uninvited guest. I reached over to get the remote control, which caused Imposter Cat to lose his concentration on the TV, and, I have to say, he looked most disgruntled when I turned it off. Then it was as if he'd suddenly remembered that he wasn't supposed to be looking quite so comfortable, and he slunk off the sofa and scurried out of the cat flap. I went back to bed. However, Imposter Cat was stretched out on the sofa again when I got up for the second time this morning, though he didn't look quite so comfortable to have been discovered slobbing out for the second time in one morning. He made a sharp exit, but stayed sat outside the cat flap while I fed Zach, looking as though he was wandering when he'd be able to come in and steal Zach's food. No more imposition as yet, but I'd lay bets on Imposter Cat making a reappearance before the day's out.

Sleepless night

I don't feel so grand today. My lungs were rather grumpy last night so I didn't get any sleep. In the scheme of things I wasn't too bad in that I wasn't desperately short of breath, but I couldn't stop coughing and was wheezy enough to keep myself awake with the noise. I'm scarily good (if 'good' is the right word) these days at sleeping through a very tight chest, but usually if it comes on whilst I'm actually asleep. Getting to sleep when you can't breathe to begin with is a whole different matter, especially when the old lungs are making so much noise that they wake you up at the slightest hint of nodding off. Needless to say I'm tired today. Most annoyingly, and as is often the way with these things, things picked up as the dawn approached, but by this time I was too mentally stimulated to sleep so I got up around 6:30am and went for a drive to the coast. St. Mary's Lighthouse is always beautiful, and to get there just as the sun was breaking through the morning cloud, giving a warm, golden hue to the sun and the sea was gorgeous. Unfortunately I was a little late with my camera to catch the sunrise on digital film as the best of it had past during my drive, but it was still lovely. Given that I wasn't feeling that great and was tired, I didn't go for much of a wander, but I did take a few photos of the sea. In the OU course that I'm trying to catch up on I've (supposedly) been learning about exposure and the different elements that can be adjusted to get correct exposure in different lighting conditions or to gain different effects. This morning I had a little play with ISO settings, though largely experimented with shutter speed. I haven't had a chance yet to see what the results were, but I'm not expecting anything great as I really was experimenting. I'll have a look in a bit and see what I got.

Since getting back home around 9:30am (it took ages to get back because of the work/school traffic) I've had a little nap, which has taken the edge of the tiredness. My friend JW came round for a bit this afternoon, and it was nice to have a bit of company, but I'm exhausted now and fit only for sofa surfing. I'm sincerely hoping that my lungs let me sleep tonight.

On the paragliding front, I'm still waiting to hear back from AirVentures to see if they can help me.