Hard times

I'm struggling today, feeling very emotional. I'm physically exhausted and emotionally weary,  and I'm sick of being in hospital. It's not quite two weeks since I came in this time - though I've a way to go yet until I'm well enough to be discharged - but I had only been out of hospital for two weeks after a three week admission, and I never did get properly better between times. It takes its toll.

The week after I got out of hospital last time I had various blood tests done at the GP surgery, some of the results of which I'm still waiting. One result I did get was my haemoglobin (Hb) level, which was a surprisingly healthy 136, but since coming into hospital again this has fallen to an anaemic level of 95. This is quite a drop in a relatively short time, but not terribly surprising as, for some reason, I have had/been having a gastrointestinal bleed. There was one day last week - I think it was Thursday or Friday - when it was pretty bad and the doctor was quite concerned, but it has eased off now, so while it hasn't completely stopped it isn't as bad as it was. They had been thinking that I'd need an endoscopy or sigmoidoscopy as soon as I'm off the aminophylline, but today the doctor said that so long as there are no more bigger bleeds then it can probably wait until I'm back in Newcastle. That's fine by me, but the anaemia won't be helping my energy levels or my ability to cope emotionally.

For all that I'm away from home, it's good that I'm in Edinburgh and close to Mum and J. It makes a difference having them around. That said, I feel a long way from my friends in Newcastle and the support they give me. Yes, I'm in contact with them via Facebook and some of them text me or send me private messages through Facebook, but it's not the same. I know that Mum feels the pressure too, not that she in any way begrudges me the visits or the time, but she's not young any more and doesn't have the energy she used to. While I'm in here she's having to make all my food for me too because the hospital can't cater for me with all my allergies, and again she doesn't begrudge
me the time and effort, but it is a lot of work for her. I worry about her getting worn out.

Yes, today everything is getting on top of me and I just want to cry. Occasionally a few tears escape, but my lungs don't yet feel stable enough for me to really let go...then there's also the lack of privacy. I'm in a bay with three others. They're nice enough, but I don't really want an audience for my upset. I want to get out of here. I want some energy and some mental strength too. I want to be better.

Overwhelmed

Sometimes I want to write on my blog, but am too busy to give it the time it needs or I get distracted. Sometimes I need to write on my blog, but I get tangled up trying to work out how to write what I need to say instead of just sitting down and saying it. In recent months there has been so much to say that I've become overwhelmed by the enormity of it so have said nothing instead of everything. That makes for a redundant blog, which is not what I want. I want to write, and I want to write here. I want this place to be useful to others and to myself. The only way I can do that is to get to it and write, so please bear with me while I try to get back in gear.

I can't, at the moment, give a big update on all that I'd like, and it's probably best done in batches anyway. Right now I'm in hospital in Edinburgh, having come up to stay with Mum and J for Easter and it all going terribly wrong because I got a cold. I'm not in the best state of mind, feeling shocked and stunned at how ill I've been and how rapidly I deteriorated. I am overwhelmed by it, and kind of need to talk about it, but also don't quite know how to yet. I had only been out of hospital at home in Newcastle for two weeks and had come to Edinburgh for some recuperation. No chance of that with only one night at Mum's, so I began this fight for life with minimal reserves. Now I feel utterly depleted. Even the skin on the soles of my feet is exhausted, so while I try to get back to writing my blog as I want and need, please bear with me. It's near impossible to start a journey of a thousand miles even with a single step when it almost too much to think about putting your foot to the ground.

Longer than expected

When I wrote my last post I fully intended to write again very soon, but for one reason or another I haven't been able to.  I've written my next post in my head several times, with it being different each time because of what's been going on at the time, but because of that I've also rather lost track of how long it is since I actually managed to post anything.  At last I'm here, albeit two and a half months since my last posting.

So what's been going on for me?  Well, it's been the summer and traditionally a time when folk go on holiday.  I haven't really been on holiday as such, but I have been up to Edinburgh to stay with my mum on two occasions, each time for about a week.  I've taken the kitten - Isobel Artemis - with me each time and she's had no problem with the car journeys or getting used to a different environment, and has really loved darting up and down the stairs at Mum's.  I don't have stairs in my flat, so Isobel's first encounter with stairs was at Mum's, and each time we've visited she's had great fun galloping up and down them, sounding like she's wearing boots.  She's five months old now, and although young for it, she was spayed last week, mostly because she's desperate to investigate the outside world, but I don't want to risk her getting pregnant.  She's healing well, and hasn't had any problems at all, which has been a huge relief because I was worried that she was a little too young, even though the vet said she'd be fine because she's quite 'long for her age'.  I am completely besotted with Isobel and she's giving me so much pleasure and delight.

At the middle of July/beginning of August I spent two weeks in hospital with my asthma.  I'd had a brilliant couple of days down in London for the Monty Python show and then drove back home on the Thursday.  I wanted to be back home in time for choir as it was the last Flotsam rehearsal before the summer break and we were singing at the wedding of a couple of choir members at the end of August.  In the end I decided to go straight to Flotsam so that I didn't have that post-drive slump at home and have to go out again almost straight away, but then as I was approaching Gateshead I realised that I was going to arrive a bit too soon so I decided to stop at the Angel of the North.  I was absolutely fine when I arrived and when I got out of the car, and fine when I got the wheelchair out of the car and had a little trundle around, but very quickly and suddenly I became extremely ill.  I couldn't breathe and my chest felt incredibly tight.  I got out my nebuliser and started to use it, but I could feel myself going - the world was going black and I was about to pass out.  I knew that if I passed out then I would die.  I could see an elderly man sitting on a nearby bench, watching me, looking concerned, but he didn't approach me or ask if I needed help, and then he started to disappear into the encroaching blackness.  Just as I was resigning myself to dying under the gaze of an angel, the drugs in my nebuliser started to kick in, the blackness started to dissipate, and my breathing started to ease.  For the first time ever I went from being absolutely fine to incredibly ill to fairly okay again in one 'sitting.'  It was a huge relief, but also very confusing because I didn't know how to deal with this new situation - would I continue to be okay?  Should I go to hospital?  Would I be alright if I went home?

When I got back in the car I looked in the mirror and could see that I was far from being the right colour, but my breathing did feel a lot better than they had done and I thought I was probably okay to drive ... although, in retrospect, I probably ought not to have done.  I had been very scared by what had just happened and was feeling rather shocked by it, all of which probably contributed to my decision to leave getting checked out until the next day.  In the meantime I decided that I would go to choir as planned because it was probably safer for me to be with people in the immediate aftermath of this than to go home and be alone all evening.

It took a long time - a good couple of hours - for me to get back to being the right colour, and during choir I was sweating a great deal and not feeling well, although my breathing remained okay given what had occurred on the way.  Perhaps because of the fear of the attack at the angel and being so close to passing out, I didn't tell anyone at the time quite how poorly I'd been (it would be like admitting it to myself), but I did go straight home afterwards rather than join others in the pub for an end of term drink.  And when I got home I was exhausted.

I had every intention of phoning my GP the next day to get checked over, and I set my alarm to wake me in time to phone for an appointment, but when morning arrived I was too tired to move.  I tried to wake up, but I couldn't.  My head didn't feel right.  In fact it hadn't felt right since I'd almost passed out in the asthma attack - it felt thick and heavy and I couldn't really think straight.  I went back to sleep, telling myself that I'd phone the doctor soon, but as the day progressed I wasn't able to stay awake long enough to make the call, and I was fumbling around doing my nebs practically in my sleep.  I don't know what happened to the day, but it disappeared, and the next thing I knew my carer for the day was calling my name from the hall.  I hadn't heard her ring the bell, knock on the door, or even phone me up, so she'd got the code for my keysafe and let herself in.  I managed to explain what had happened, but I still wasn't right, and she said that I seemed a bit confused.  I said that I wasn't, that I was just tired, but actually I think I was confused.  The carer stayed a while, made me a drink (I didn't want anything to eat), and phoned the office/on-call to tell them what had happened and how I was, and then she had to go.

I can't remember much about that weekend, except that my head didn't feel right and my lungs were slipping again.  My GP surgery is closed at weekends and I don't like A&E (plus, I didn't think I really needed to go to A&E) so I was hanging on for Monday.  When Monday morning arrived I managed to wake up to make the call to the surgery, got an appointment with one of the doctors, and went straight up to the surgery.  Part of me must have known that I'd end up in hospital because I had checked my hospital bag was ready, but part of me was still in denial, or maybe not thinking properly, so I didn't gather my meds together or take anything with me to the surgery.  The doctor was lovely, but clearly concerned so had me admitted to my usual ward at Freeman Hospital via an ambulance straight from the surgery.

At first the docs on the ward didn't do very much for me, but I could feel my lungs getting slowly tighter, and the nurses who know me well were concerned for me.  My consultant was off (his first sick leave in his whole career), and the registrar had opted to wait and see how things went with me before doing anything proactive, which was tiring and frustrating for me.  I didn't see the point of being in hospital if they weren't going to do anything different from what I could do and was doing at home, besides which I could feel my lungs getting slowly tighter and tighter.  The following day they agreed that the time had come to intervene and they put up the aminophylline infusion, which slowly, slowly did its thing and I started to get better, except that then the docs were too eager to get it down, despite my telling them that I need to be weaned off it very slowly.  It all went pear-shaped and I ended up back on it very soon after it'd first come down.  This time they kept it up until I was more stable, and as far as I remember it was up until after my consultant came back to work and could oversee the whole the process.  Eventually I was well enough to be free of the aminophylline infusion, and I could start to get some better rest before going home.

I was discharged two weeks after being admitted.  The general consensus was that there was most likely something at the Angel of the North to which I'm allergic - a pollen of some kind, probably - and that the confusion and headaches had been due to the lack of oxygen to my brain when I was so acutely unwell.  These seemed to get better with time and rest, although I was still extremely tired for about a week after I got home and did very, very little other than sleep or lie in bed for my first week home.

Since then my lungs have settled back into their usual state of unpredictability, but I've got back into life, taking each day as it comes.  I've been up to Edinburgh once since then and had some Mum TLC, which is always good for recovery from poorliness, and I've seen various friends at various times too, which help my spirits and remind me how lucky I am to have such lovely people in my life.

There have been a few other medical things going on throughout the summer and recent weeks too, but I'll post about them separately because otherwise it might be overload for both me and you.  Besides which, I've just noticed that it's almost 1.40am and I really ought to take myself to bed if I'm to have any chance of seeing any of tomorrow morning, which I'd like to do as I've been enjoying the sunny September weather.  So for now I'll bid you goodnight and I'll take Isobel for a cuddle in bed.

Getting back to it

Well hello there, folks!  Even the most unobservant of you will have noticed that it's a very long time indeed since I last posted, but now it's time that I got back to it, back to you.

It's been a difficult five months or so since my last blog post with two bouts of pneumonia (I told you there was no such thing as a simple cold for a severe asthmatic!); time in hospital; the death of a very long-standing and dear friend; the death of my beloved cat, Zach, who had been my loving (although crazy and psychotic) companion since he was four or five weeks old almost seventeen years ago; the diagnosis of Impaired Glucose Tolerance (IGT), or pre-diabetes, with a major contributory factor being the long-term high-dose oral steroids I take for my lungs; and still working through some of the stresses of last year, both in my own time and with my psychologist.

Is it any wonder I've needed a bit of space from writing about it all on my blog?

However, despite all of that there have been some good times and some good things in the last few months too.  In recent weeks, one of the things that has helped to bring back my smile has been my new little kitten, Isobel Artemis.  This photo was taken when she was just three to four weeks old and I went to meet her for the first time.

Isobel came to live with me on the day that she turned eight weeks old, and this photo is from her first evening with me.

As you can see, she'd grown a bit, but she was still so small (especially in comparison to the size my lovely Zach boy had been) that I kept looking at her and thinking, 'You're so small, you can't be real!'  She was quite unsure of her new surroundings for a couple of days, although she seemed to feel safe enough, judging by how relaxed she was first thing in the morning of her first full day...

She's now completely settled in, a complete delight, and totally nuts :o)  Her mother was half Bengal, which of course makes Isobel a quarter Bengal.  She has some of the traits, particularly being talkative with a variety of little chirrups as well as the more conventional meows and purrs; and she has just a couple of the Bengal spots on her side; but I wasn't sure how many of the other traits she'd have.  One thing Bengal cats are known for is a liking of water, and yesterday Isobel had her first encounter with water.  It was the middle of the afternoon and she decided it was cuddle time, which is lovely and usually not a problem, except that I happened to be in the bath at the time!  Despite having her feet already immersed in the bath water, she walked along my legs into deeper water (my legs were at a slight angle due to the bath lift I use), patted it with her paw as if gently attacking it, walked back up my legs, looked at me quizzically, leapt out of the bath, ran around the flat in crazy mode, scurried back into the bathroom, leapt back into the bath, missed her footing on me and got absolutely drenched.  She ended up very spiky, utterly bemused, extremely soggy, and yet wanting more.  I don't really want to end up sharing all my baths with the cat from now on - that would be weird! - but it was very amusing, and I have to say that she's incredibly silky soft today.

I could probably post photos of Isobel ad infinitum, but I'll restrain myself (for now) and tell you some more of the better things that have been going on for me in recent times.

So, at the end of April my mum turned seventy, shortly followed by my step-dad at the beginning of this month, so between the two birthdays we had a family week away in celebration.  Mum, J (step-dad), my brother M, his wife, N, and their children, O and D, and my brother C, his wife, S, and their son, J, hired a 'cottage' in Shropshire.  The 'cottage' was in the grounds of a manor house with several other 'cottages' (mostly far too big to be called cottages), and amongst other things a huge building that contained a large games room and banqueting hall.  We'd arrived on the Friday, and on the Sunday we had a big party for Mum and J in the banqueting hall with various other factions of the family coming to join us for the day.  Most of the folk who came to the party were from J's side of the family, and it was great to have a chance to meet some of them for the first time, some for the first time since Mum and J got married over twenty years ago, and to chat to others who I have seen more recently but haven't had the opportunity for a good catch-up.

There are always some tensions when families get together for prolonged periods, but on the whole I don't think we did too badly, and I did have a good time.  There were times when I felt a bit 'spare part-ish' and lonely, because I was the only one who didn't have someone else, and a couple of days when I ended up spending much of the day on my own while others went off in their family groups, but I tried to make the most of it, and did have some good times.  I also had some very enjoyable times with my brothers and their families during trips out, and I really valued the time to get to know my youngest nephew, J, a bit better.  I don't get to see him very much, so even at age three, he didn't really know who I was, but by the end of the week he was inviting me to his next birthday party ... in February next year.  I do hope I get to see him (and his parents, of course!) rather more now and we can have the kind of aunty-nephew relationship I have with O and D.

What else has been good?  Well, I've been learning to crochet.  In my review of the year at the end of last year, and I think also at the end of the previous year, I said that I wanted to learn to crochet.  I sort of learnt a little bit in 2012, but not at all confidently, and I couldn't do it with any accuracy without having someone who knew what they were doing to guide me.  Earlier this year my friend R was off work for a few weeks.  Early on in her recovery from the surgery she had I went to visit her and happened to mention that I wanted to learn to crochet, and much to my delight she said that she did to and we set up a plan to learn together.  I'd bought a book (A Little Course in Crochet) a few weeks before in anticipation of teaching myself and we decided to use it as our tutor.  We met up frequently during R's recuperation, working methodically through the book, and practising on our own between times.  We still haven't reached the end of the book, and R is now back at work, but I feel like I can call myself a crocheter.  I can actually make things, things with straight edges where they're meant to be straight, and with corners where there are meant to be corners.  I've made all sorts of things, albeit mainly those in the book, but that's the beauty of the book, because it teaches you a skill and then gives you a project to make using the skill it's just taught.  R and I don't meet now like we did, but I'm still crocheting, I think she is too, and we certainly plan to get together for more creative crocheting times.  It's so relaxing, and actually it really helped me after Zach died.

So having heard what has been, I guess I should say a little about what is.  Right at the moment my priority is trying to keep breathing.  The weather has been lovely recently with lots of sunshine, but the air has been thick with humidity - around 60% to 75% according to the Met Office - and that's been causing me problems.  That and the high pollen count.  As much as I love going out in the sunshine - and I really need to get the vitamin D given my osteomalacia - I've had to spend a fair amount of this lovely weather indoors, breathing the clearer air produced by the ventilation system in my flat.  Even then I've had some very troublesome days and nights with my breathing, and have generally been quite exhausted.  I've put my steroids back up from 45mg to 60mg, and have been having extra nebs, but I'm also thankfully due to see my asthma consultant on Thursday.  I don't expect him to have any magic answers or even the glimpse of any new treatment, but at least he'll know where things are up to.

To be honest, it hasn't been too much of a hardship having to be inside at home.  Sure, I'd love to be outside enjoying the sun and the warmth, but I've also spent lots of time with Isobel and have been taking great delight in her.  We've played a lot, had lots of cuddles, and she's been learning the word no when she's looked up at the curtains with rather too much interest ;o)

I think that I'd better sign off for now as it's getting late, but I'll be back a whole lot sooner than I was last time.

Holiday time (part 2)

It seems like such a long time ago now that I was on my holiday so it's well over time that I shared some more of it.  Maybe it'll take us back to the days of sunshine rather than these horrible wet and cold days that are fast closing in.

After my few days in Stratford-upon-Avon, I went to Dorset for a week, staying in a little cottage on a dairy farm in a tiny place called Pilsdon in western Dorset.  So here are a few photos of the cottage and the farm:

That last photo doesn't look like much, but the calf is just minutes old and is being licked clean by its mother.  I was lucky enough to be in the right place at the right time, having a wander around the farm yard.  Most of the cows are, of course, out in the fields, but as you see there are plenty in stalls in the farm's immediate surroundings.  All of these ones are very pregnant and being kept a close eye on to make sure that nothing goes wrong with the birth.

Now, you'll have to forgive a lot of my photos as I haven't edited them at all so on some there may be a slightly (or very) wonky horizon, or dust on the camera lens :o( Some would be better cropped etc, but I haven't got around to it.  I hope you enjoy them all the same.

Back to the point of the post.  As I said before, I was staying in Pilsdon, which is a tiny weeny place about eight miles north of Bridport.  Attached to Bridport, though also a little place in its own right, is the lovely West Bay, which you will have seen on telly if you saw the crime drama 'Broadchurch' (starring the delicious David Tennant).  I slightly fell in love with West Bay with its long piers with great views back to the cliffs, the quaint harbour, lengthy promenade, wonderful-looking sandy beach (I couldn't get on to the beach in my wheelchair, but I enjoyed the fact that it was there), it's small collection of independent shops and gorgeous little pottery.  So here are a few photos of West Bay that won't do it justice, but will give you a little flavour of the place:

I ventured along the coast to Lyme Regis, although I quickly discovered that it's not very wheelchair friendly as the pavements are narrow, most of the town is built on a hillside which is quite steep in places, and the majority of the shops have at least one step in to them.  I did manage a little wander around some of it, and very much liked what I saw, but I ended up spending most of my time there trundling along the seafront and daring to challenge myself with the cobbles on the cobb (the harbour wall).

(I had a couple more photos of Lyme Regis, but something appears to be wrong with them and they won't load).

Charmouth is along the coast towards Lyme Regis and is the place to go on a fossil hunt on the Jurassic Coast.  I went there one morning just as the tide was going out.  The car park at the beach is attached and in some places sort of turns in to the beach, though the beach is pebbly, as are many of the beaches down there.  I parked as close to the beach as possible and walked the very short way to the tide-line.  I didn't really expect to find a fossil as the best time to find them is after stormy weather and fractious seas, but quite amazingly, I'd only been there a few minutes when I looked down and saw a small ammonite staring back at me in one of the pebbles.  I don't actually have a photo of it, but I do have the fossil itself.  It's only about a centimetre across, but it's mine and I found it :o)  Charmouth itself is little more than a beach, a visitors centre, some houses, a library, and a long street with a few shops on it.  The main attraction is the beach with the small cafe, visitors centre, and tiny shop packed with fossils.  I liked it there though, and here are a few photos.

 (I want to clean up that last one on Photoshop, clearing away the dust that was on the lens)

The one immediately above is of a big fossil probably around 15 cms across, but I couldn't bring it home with me because it was in an enormous boulder that was part of the wave break next to the promenade.  Perhaps if I'd had a chisel and hammer it would've been possible to chip it out of the rock, but I didn't.

Further along the coast, and just over the county boarder in to Devon, is the lovely little town of Beer.  The fantastic thing I discovered about Beer is that they have long rubber mats laid over the pebble beach in all directions so I was allowed full access on to the beach in my wheelchair.  I had a little mooch about the rest of the town, but most of my time there was spent on the beach, taking in the sun and the atmosphere because it's very much a working beach with fisherman tending to their boats and their catches.

I have more photos to share with you of some of the other places I visited, but I think that's probably enough for now.  Besides which, I need my dinner :o)  I'll get back to you soon with another post.

Holiday time (part one)

It's about time that I got back to you with news of my holiday, given that I promised you a post about it two posts ago, and it's now almost a month since I got back.  It doesn't feel anything like a month, probably because I've looked back over the photos over and over again, and relived the holiday.  I had a wonderful time, and even though I went away on my own, I wasn't lonely in the least.  I've actually always enjoyed going on holiday on my own, I think because I can take my time, keep doing something that I'm really enjoying or stop doing something I'm not getting much out of without having to worry about whether or not it's what anyone else wants to do.  Most importantly this time was that I could pace myself without that concern of boring anyone else, and I spent a lot of time enjoying views or doing things that took little energy.

I took a lot of photos while I was away, so the best way to share my holiday with you is probably to share some of the photos (I won't post all 388).

The place that I was probably 'busiest' was Stratford-upon-Avon.  I was only there for three days, and there was a lot too see, it being where Shakespeare was born and grew up.

First up, a couple of photos of Stratford-upon-Avon itself:

And here's a photo of the inside of the RSC Theatre where I went to see their current production of All's Well that Ends Well.  It's kind of an odd production in terms of placing it in time as the clothing spans several centuries and the opening scene is absolutely up to date, but it works.  It was a fantastic production, brilliant performance, and a wonderful experience seeing the play in a 'theatre in the round' and the home of the RSC.

So, my first port of call in terms of Shakespearean buildings was Shakespeare's birthplace.  I couldn't get upstairs, though the Shakespeare Birthplace Trust have done brilliantly with providing disabled access.  They have portable ramps in and out of the buildings whenever they're needed, and whenever it's not possible to use these ramps inside (which is actually most of the properties) they provide a photo album or video point with info and pictures of the upstairs rooms.  Anyway, here's Shakespeare's birthplace:

I then went to New Place and Nash's House (they're on the same site).  Actually, the house New Place doesn't actually exist any longer, but it was on the same plot - sort of in the garden of Nash's House.  This is where Shakespeare died, where his daughter first lived, and where his granddaughter then lived.

The big dip you can see in that last photo is where New Place was.  It burnt down.  I can't remember when, but I think it was a few hundred years ago.

From there I went to Holy Trinity Church where Shakespeare and all his family were interred.  I also include a photo here of the font in which it's thought he was baptised.

Next up was Hall's Croft - the married home of Shakespeare's eldest daughter, Susanna, to Dr John Hall.

The final Shakespearean property I went to (I didn't get to Mary Arden's Farm) was Anne Hathaway's Cottage.  Anne Hathaway, in case you don't know, is the woman who became Shakespeare's wife, and the big long seat by the fireplace that you'll see in one of the photos is called 'wooing seat'.  It's said to be the seat in which Anne and William sat beside each other over Will's regular visits to Anne's house, and in which Shakespeare 'wooed' his fiancé and proposed to her.  On these visits he would also have had to please Anne's family, although Anne and William had to marry as Anne was already pregnant.  So anyway, here are lots of photos of the house and the beautiful expansive gardens:

Oh yeah, as you see, there are several modern sculptures in the gardens, but I liked them.  The gardens were a lovely place to relax, and wander around.  I didn't take any photos along the forest walk (trundle), partly because it was a relatively new feature and it didn't really feel finished and there wasn't much to take photos off.  The lavender in the bottom photo was part of a maze.  It's quite possibly the easiest maze in the world to find your way through as the lavender isn't even knee-height, but it was a pleasant feature that produced the most delicious smell, and a wonderful feeding place for lots of butterflies.  I sat and watched the butterflies for ages, and soaked up the wonderful lavender aroma that reminded me of my grandmother.

So that was my three days in Stratford-upon-Avon, and probably enough for now.  I'll be back before long with an instalment about my time in Dorset, and again it will involve lots of photos.