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

Today is the tomorrow that you worried about yesterday.

Thursday 26 February 2009

Holiday

It's almost three years since I had a proper holiday, and it's getting on for two and a half years that I've been studying without a break - all my courses have overlapped. Consequently I'm flagging a little so I thought it time to book a holiday for the summer and after my current course has finished. My sister-in-law's parents have a second home in France, which my mother and step-father are renting from them for three weeks in June/July. I was asked if I'd like to join them for some of their time there so I've jumped at the chance and booked my flights two days ago. I'm so looking forward to it. The house, apparently, is pretty much on its own in the countryside, but it's not far from Fougeres, Brittany, and I'll be flying to Rennes. Having booked the flights I mustn't forget to do all the other preparatory things like getting a new passport (my last one expired in 2007); sorting out travel insurance as the airline's didn't cover pre-existing medical conditions; getting a doctor's letter to cover me having my EpiPens and nebuliser in my hand luggage; getting my hospital/treatment letters translated; getting translations of my allergies, which I think is something the Anaphylaxis Campaign can help with; and maybe getting hold of the international names of my drugs, as I think even generic drug names can vary a little from country to country. There's quite a lot to think about and make sure I get done, and hopefully I won't need to use most of it, but I know from experience that it's so much better to be prepared for all eventualities than to rely on hope. I know that my mother is quite anxious about managing my health while I'm away with them, and desperately hoping that all will go smoothly (as I am), but we also both know that life is for living and I have to take the risk of living if I'm to make the most of life. Risks are calculated though, and also need to be minimised so preparation is the key, and forward planning on how we might deal with a medical crisis if it were to happen is also important. The main difficulty with this is that I don't speak French (not that I can speak at all anyway when my lungs are bad), my mother is just learning French and my step-father's French is limited. This is in part why it's so necessary to have all my hospital and treatment letters translated, along with a clear list of all my allergies.

My brother, sister-in-law, and nephews are planning on coming out to stay in the house for some of the time I'm there, and that should be really good. I'm seeing them in a few weeks time at the boys' baptisms, but it's then unlikely that I'll get to see them until we're in France, so it'll be great to catch up and have some quality time with them all in June/July.

I think I recently mentioned that back in 2006 I went on a Great Camping Expedition around England on my own, and which I got a huge amount out of and greatly enjoyed. I don't think I can afford to do it on the same scale as last time, but I'd love to do something similar this August if at all possible, although it may well depend on how the weather looks on being, because camping in the rain really isn't so great. There's a huge amount of the UK that I haven't explored yet, so I'd like to set about rectifying that a bit more, and maybe catch up with some online friends in the process too. I don't yet know where I'm likely to end up, or even completely sure if it's going to be financially viable for this summer, but I'm mulling it over and starting to plot, scheme and plan.

One thing is for sure: I need a holiday. I need restoration after so much studying without a break, and I need to refresh myself for the next round of study that will begin in October. However, I mustn't get complacent in the run-up to my holiday as I still have three big pieces of work to do for my current course before it finishes at the end of May.

Bring on the holidays!

Monday 23 February 2009

I've got worms!

No, don't worry, they're not the digestive tract type worms; they're wormery composting worms. I just thought I'd go for the dramatic effect ;oP I was given these worms for Christmas, which I have to say is one of the most random Christmas presents I've been given for many years, and I'm not completely sure of their usefulness as I have a small patch of mud at the front of the flat that masquerades as a tiny garden (and which contains something as yet unidentified that I'm highly allergic to and therefore cannot do anything in the garden/patch of mud), and an enormous expanse of concrete in the back, which I share with the people in the upstairs flat. I do try to grow some things in pots in the back yard, and I have one of those small, tenty-greenhousey-things that constantly threatens to fall down, but it couldn't be said that I have the greenest of fingers. However, I have the worms now so I will see if they'll make me some compost, and then I'll try to find a use for it.

It's taking me a while to bond with my worms. They're not the easiest creatures to feel warm and cuddly about, and I'm not all that keen on spending quality time with them. It has to be said, in fact, that I've had limited contact with them ... and I just can't get over the need to wear rubber gloves when I'm having to do stuff with/to them, though it's not like I take them to the park or play games with them. Now I'm not usually the squeamish type, and I wouldn't really say that's how I feel about the worms ... it's just, well, hmmm ... they didn't look all that appealing when they were clumped together in a squirming mass of wriggly bodies when they arrived in the post and I tipped them out of their worm-transporting bag and into the wormery. It kind of put me off. Having said that, I found myself concerned for their welfare when I was in hospital, and I even dreamt that lots of them escaped! My real concern for them was when the weather got very cold and snowy, which I think was one of the days I was in HDU so my concern may well have been heightened by hypoxia and the randomness that it can cause. I'd fed the worms a couple of days before I'd gone into hospital, and it was already pretty cold then, with a layer of ice covering the bubblewrap that I've put around the wormery box. When I'd opened the box to add the potato peelings that the lucky worms were going to be feasting upon, I'd noticed that the 'insulating' layer of dampened newspaper (as instructed by Wormcity) had become somewhat frosted. As I lay in HDU, before my dream about them escaping, I had visions of my worms knotted together in a lump of frozen spaghetti, having stuck to each other in the cold as they'd attempted to share body heat. It was a worry ... and quite possibly an attempt to find something to worry about other than my inability to breathe.

I wasn't really up to checking on the worms when I got back on Saturday evening - you can call me heartless if you like. I was a little bit afraid to look in on them on Sunday in case my fears of them turning into frozen spaghetti had come true. I took the plunge this afternoon, well not literally, because that'd be fairly horrid - to go plunging in with the worms - and a tight squeeze too as the box isn't all that big. No, what I mean, of course, is that I had a peek at the worms to see if they were okay, and much to my relief they were squiggling around (I think I just made that word up - 'squiggling' - but I'm liking it so it's staying), looking pink and relatively cheery. Er, not that I actually saw any of them smile, or that I could actually tell one end of the worms from the other, but they were moving and weren't tied in knots shivering themselves silly, so that was good enough for me. I still haven't bonded with the worms, but it has to be said that I did feel relieved that they were looking chirpier than they had done when it was so cold ... and it was also quite nice to put the lid back on the box and make sure that it fitted firmly ... and then wrapped the box back up in the bubblewrap ... and then closed the back door on them ... and then locked the back door ... and then stepped away from the back door ;oP

Sunday 22 February 2009

I'm back

Well I lasted about an hour after my last post before I really couldn't do anything except press my community care alarm for help. I did actually phone ward 29 at Freeman (my second home) first, but they had no beds so I knew that I'd have to go to A&E and then end up in the RVI, which isn't my favourite hospital in the world. Consequently I sat at home that little bit longer battling with myself about whether or not to hold on and see if I could last until the next day when ward 29 might have a bed, or if I'd be better off going to A&E all the same. Ultimately my choice was made by my peak flow becoming unrecordable (the lowest on the meter is 60 and I couldn't get that), so I contacted my friend W who was kind of expecting to hear that I was going in, and she met me at A&E. She actually got to A&E before me, because the ambulance took a little longer than usual to get to me and then they spent a bit of time trying to get me breathing a bit better before we set off. It was to no avail though, so I had a rather speedy, blue light trip to A&E, where the medics were all ready and waiting for me. The doc I saw was nice enough, cheery and had a fairly good bedside manner, but he was a bit remiss in forgetting to do any blood gases, and only remembering to get a chest x-ray as the paramedics were waiting to transfer me from A&E at the General to the Emergency Admissions Unit at RVI. Oops. It also wasn't great that he had a medical student try to get venous access in me, as my veins are so damaged and scarred from overuse that even the most experienced doctors have trouble getting access, and any veins I do have left need to be treated very gently so that they don't get damaged too quickly. Needless to say, the medical student wasn't successful, another vein was knacked (not her fault, just lack of experience) and the doc had to step in and give it a go so that they could give me the aminophylline I needed, but couldn't have until venous access was achieved.

After a while I was transferred, again by blue light ambulance, to EAU at RVI, where I was successfully ignored for quite some time (they're too busy there and not terribly organised so that everyone seems to be doing the same thing, meaning that not everything is done). The doc there did do my gases though, which he wasn't terribly impressed with so the anaesthetic team was called and I ended up on the High Dependency Unit again. Thankfully, one of the SpRs was someone I knew very well from her year spent working on ward 29 at Freeman, so I felt safe enough while she was there and knew that she knew what I needed and would give it to me. This is always a concern as I've had one or two experiences of 'doctor knows best' in which doctor didn't know best and I've ended up much more poorly than I would've done if they'd just done what I told them needed to be done. Ach well, such is life.

Sometime around 4.30am/5am things began to settle a little bit, so that by 4pm the following day I was well enough to be transferred to ward 29 at Freeman (they had a bed by this time), although I was still struggling and far from well. The problem was getting an ambulance as the city had been hit by a sudden onslaught of snow, and the hospitals had apparently received telephone calls from the met office giving severe weather warnings! Anyway, an ambulance eventually got through the snow and after a rather slippery journey across the city I arrived at my second home where I eventually managed to get my breath a bit better after several more hours of trying. Then I fell into that ever-welcome, all-consuming sleep that is restorative, yet somehow exhausting ... I'm not sure how that works, but it's how it feels.

There were one or two hairy moments when we lost venous access again, and on one particular occasion there was a real question of how they were going to get it back, because all my veins were either hiding or collapsing. I still needed the aminophylline infusion so it was imperative that a vein be found, and eventually one in my foot made an appearance long enough to be spotted, stabbed and maintained. Feet really don't like have needles in them, and it doesn't make standing easy (I wasn't doing much standing, but a certain amount is required to get onto a commode), but it's better to have a slightly sore foot than to be dead or not far off dead.

I seemed to need the aminophylline for quite a long time this time round, and was on it for about 7 or 8 days. I've had some difficulties with coming off IV aminophylline and onto oral theophylline before so it can be a rather anxious time trying to swap over, but thankfully there weren't any hitches this time and it all went smoothly. I came off the oxygen on Friday morning, and managed to get home yesterday afternoon.

I usually have a day or two in hospital when I feel a little overcome emotionally and have a bit cry. It didn't happen this time, but seems to be catching up with me today. I know it's just the fear of the attack catching up with me, and that I'll be fine tomorrow or the next day, but it puzzles me why it's come later than usual this time. I won't bother analysing it - it's not worth it - but it's curious. Anyway, I'll go to church this evening and I'm sure I'll feel better for seeing people.

It's so good to be home, but however many times I go through this it never stops surprising me just how exhausting it is to suddenly have to do everything for myself again. When I'm in hospital I don't have to do anything, so it's quite easy to think that I'll be perfectly fine when I'm home, which I am, except that even getting up to make a cup of tea is something I haven't had to do for 11 days and it takes more energy than I anticipate. I'll get my energy back eventually, but for now I'm just enjoying being home, being with the cat and having my own things around me again.

Wednesday 11 February 2009

It may be time

I've been struggling considerably with my asthma over the past week or so, and it may be time to give in and phone the ward. I haven't slept properly for days so I'm exhausted, and that's not a good state to be in before I start the fight for life. My peak flows have been dropping steadily, from 170 about 10-12 days ago, to this morning's 90. It could be worse, but not by much, and when you have a peak flow that low every fraction of a drop is noticable and significant.

I'll have a potter as I gather some things, and I'll have a think and try to get the side of me that knows it's just about time to give in to get the upper-hand. I hate this.

Saturday 7 February 2009

Yes, I know.

I have struggled one way or another with my weight since my mid-teens. To be honest, to begin with it was my mother who had more of a problem than I did, and looking back I see that I wasn't over-weight, it's just that my frame is bigger than my mothers. I was actually very fit - swimming everyday and spending most of Saturday trampolining - so what extra weight I did carry was muscle. All the same, my mother made me aware of my body and I think compounded insecurities about it that were already there.

When I was sixteen/seventeen the depression I'd had since I was a child (not officially diagnosed for many years) deepened for various reasons when I was sixteen/seventeen, and unable to express my distress (again for a myriad of reasons) I turned it back onto myself and it came out in the form of anorexia. This stayed with me for a number of years, but gradually developed into bulimia, which stayed with me for an awful lot longer ... until my late twenties. I am through all that, but now I am very over-weight and it bothers me. I know that I have to be careful not to get sucked into bulimia again, which is all too easy to do, but I do need to lose weight. I am self-conscious. I am embarrassed. I am ashamed. Okay, so I know that those who care about me probably don't care what I weigh (and I'm not about to tell you my weight!) or what my body-shape is, but I do, and the fact of the matter is that being over-weight won't be helping my asthma or my general health.

A few years ago I lost a lot of weight without resorting to eating disorder 'habits', and I managed to keep it off for about three or four years, but over the past couple of years I've put it all back on again ... plus a little. It's upsetting. When I lost all that weight the nursing staff on my usual ward at the Freeman Hospital were so congratulatory and pleased for me, and that felt good too. Now here's a really stupid think that could well make you want to shout at me, and is actually a huge thing for me to admit 'out loud' ... a contributory factor in recent months' reluctance to go into hospital with my asthma is embarrassment and shame at having put back on all that weight. Yes, I know it's stupid, and yes, I know it's dangerous, and yes, I will (and have) ignored it when I've really needed to go in, but it's something that hangs over me.

It's time to do something about this. I mean, seriously get to work on this, and without falling into the trap of eating disorders, which is easier said than done as, in my opinion, these are things that are managed, not cured. In the past year I've tried losing weight on my own, but obviously unsuccessfully as I've actually put weight on, so I've thought about joining something like Weightwatchers or Slimming World, but I feel intimidated. I'm also not sure if these organisations would be able to work around my allergies as so much of their focus, as far as I'm aware, is around using their own-brand products. No, I need something that is a group approach, but that also gives me independence and a degree of privacy in it too, although I know that sounds ironic given that I'm writing about it here. So what's the answer? I didn't have a clue, but then I hit on the idea that there might be some computer software that could maybe give me the focus and even some kind of motivation/encouragement. Not ideal, but I decided to do a web search for something suitable. There doesn't seem to be much of this kind of thing out there, let alone anything with many positive reviews. However I did come across a couple of online support group things with goal-setting, progress tracking, and vibrant communities. I checked one or two of them out and have signed up with SparkPeople yesterday morning. It's free, which is a huge bonus, and seems really motivational, and I've already had some posts of welcome and encouragement. At the moment I'm very limited in what I can in terms of activity to help the weight loss process, which is one of the focuses of SparkPeople, but perhaps when I'm through this current period of inability to breathe sufficiently well I'll be able to get back to supervised exercise. I want to do so now, but there is absolutely no way that it's possible since I can hardly move around the flat without getting breathless, so for now I'm having to focus solely on food intake. This poses it's own difficulties as I know that if I start the whole calorie counting thing then I risk being drawn back into disordered eating, so I'm avoiding that and instead concentrating on general healthy eating (I know all the theory, of course, I'm just not always very good at putting it into practice) and portion size.

It's tough. All of it, not just the quest to lose weight, but all the shame and embarrassment at being over-weight to begin with. The stupid thing about it contributing to reluctance to go to hospital with my asthma (though I'm not quite at that stage yet with this current bought). It's all hard. I need to change it though, and I know that I'm the only person who can do anything about it, so here I am at the beginning of a new task. Wish me luck, strength and perseverance, because I'm going to need it.

Tuesday 3 February 2009

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.

Monday 2 February 2009

Rutland Water

After saying a little about my Great Camping Expedition in my last post I thought I'd put up a piece of writing that I did for my previous creative writing course. It's about a little boat trip I did on Rutland water on my first day in the county, and immediately prior to my visit to Burghley House. Actually, it's more about an elderly lady I met on the boat trip, than the boat trip itself. See what you think...


Rutland Water

The captain welcomed me on board, taking my six pound fee and exchanging it for a small, grey ticket.
‘Is it sensible to get into a large metal box on a big expanse of water in the middle of a thunderstorm?’ I asked.
‘Yes, yes. We’re perfectly safe. The fools are the people out there in the sailing dinghies, with their masts pointing up to the sky inviting the lightning to knock them dead.’ He grinned.
I was a day into a month-long camping trip around England and had made it as far as Rutland - the smallest county in England. I was travelling alone, and although certain that I’d meet some interesting people along the way, I was a little anxious that I might get lonely on my journey, so I knew I had to make the effort to talk with people.
My first night in the tent had been dry, but this morning the sky had become black. Daggers of lightning had split the thick cloud every few minutes and the rain had crashed to the ground like an enormous waterfall. My tent had proved to be mostly waterproof, but a sturdier roof was required for a while, so I had opted for a trip on the Rutland Water pleasure boat.
The cabin was a large, damp space with slippery floor-boards, thick, scratched windows that quickly steamed up, and forty or so plastic, classroom chairs set out in rows. Many were already occupied by senescent women with tight perms peeking out from under plastic rain-hoods. I took a seat on the far side of the boat next to one of the elderly ladies who sat alone, asking if she minded if I joined her. On the contrary, she appeared pleased – her mouth cracking into a broad, welcoming smile, and she introduced herself as Nancy.
‘Have you come far?’ I asked, making polite conversation.
‘Ooo yes, quite far – from Stamford.’
‘Where’s that?’ I enquired, adding, ‘I’m visiting from Newcastle and don’t know my way around here.’
‘Stamford? It’s at least five miles away.’ Her sincerity left me in no doubt that this was a big trip out for her. I smiled and glanced out of the window just in time to notice that we were edging away from the jetty.
‘Now then ladies,’ one of the women had risen to her feet and was addressing her fellow passengers from the front. ‘Welcome to the Stamford Women’s Institute August day out. We’ve come for a lovely cruise on this beautiful reservoir, and afterwards we’ll have afternoon tea in the restaurant.’ A gentle ‘Ooo,’ resembling the moaning of a distant cow, reverberated amongst the women. ‘Settle back and enjoy the trip. I’m sure the captain will give us a fascinating tour of the lake.’
The captain did indeed make the trip as interesting as possible, informing us that the church on the lakeside – Normanton Church – had had to have its floor raised by three metres to avoid being flooded when the reservoir was created. This seemed ironic as the village it had served had been sacrificed for the creation of the reservoir. We were informed that on a bright day it was sometimes possible to see the remains of Nether Hambleton in the depths of the water, and I thought about all those whose homes had been submerged; of the ghosts wandering the bottom of the lake; of the sadness of a place gone forever. The dark waters of this day were to keep the secrets of the lost village to itself, and I felt the bleakness of the people who’d lost their homes was reflected in the area that was now flooded. There were few trees, few buildings, an expanse of grey water kept in place by expansive, grey walls, and it all appeared drabber in the dismal rain.
‘Isn’t this lovely?’ marvelled Nancy.
‘Great.’ I said, using the fact that I had a solid roof over my head in this miserable rain to instil some enthusiasm into my answer. ‘It’s good to get out sometimes, isn’t it?’ I added, sensing that Nancy wanted company and conversation.
‘Ooo yes,’ she crowed, and continued in her quivering, elderly voice, ‘Of course, when I was your age I was outside all the time ... I lived in a caravan. Harold was in the army and we decided we didn’t want to live in the barracks, not with the children, so we bought our caravan and drove it wherever Harold was posted.’
This was unexpected conversation, but Nancy’s eyes lit up as she spoke, some of her wrinkles seemed to drop out of her leathery skin, and I could see the vibrancy she once must have had before old age had crept upon her.
‘It must have been hard bringing up children while living in a caravan.’
‘It was hard work, but lovely. The children played outside all the time, and our Shirley – you should have seen how brown she was when we lived in Stranraer!’
I smiled at Nancy’s vivacity, ‘Should I?’
‘Oh yes, you should have! She was ever so brown ... Of course, when the children were babies I only had a single gas ring to cook on, but we got by. Although it wasn’t easy having to boil nappies and heat up bottles of milk all on the one ring. I had this huge pot,’ and Nancy gestured to indicate a pot of a foot wide and a foot and a half tall, ‘that I used for everything – milk, meals, nappies – the whole shebang.’ Nancy stopped talking and seemed to get lost in her memories, smiling with a fondness for times past.
‘Of course, Harold died ten years ago,’ and now she appeared to be lamenting the passage of time, the passing of her husband and possibly her now grown-up children’s independence.
I was suddenly struck by the importance of groups such as the Women’s Institute, and had a fresh awareness of how this trip on a boat on a man-made lake in a storm could be ‘lovely’. Nancy was not only given friendship by this band of spirited old women, but also a place to belong; people both to love and be loved by; an opportunity to keep living life even as the horizon approached.
As I contemplated Nancy’s worthy desire to head towards the end of her life with a beautiful sunset rather than a heavy fog, the boat pulled back up to the jetty from where we’d set out. The W.I. crowd were herded together by the woman who’d addressed them earlier, and a photographer from the local paper came aboard to catch a snap of this family of friends, who were delighted at this opportunity for twilight fame. I only narrowly avoided being rounded up into the group by the photographer, and once off the boat decided to head towards Stamford. The physical distance Nancy had covered between Stamford and Rutland Water may not have been great, but she had certainly travelled an emotional journey through her lifetime, and I felt honoured to have had some of this elderly lady’s story passed on to me. I wanted to see the place to where her journey had taken her.