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.

A comment or two

I would like to point out that all comments on my blog are moderated and that aggressive, bullying, trolling, and negative comments will not be published.  I would also like to add that I think it is particularly cowardly to post such comments anonymously.

With that in mind, I'm going to draw upon one such comment that I received today.  I haven't approved it for publication, but I thought I would flag it up to discuss some issues around it.  This particular comment accused me of 'exaggerating [my] symptoms and illness to frighten others and get sympathy.'

I find this interesting because my consultant and the hospital chaplain sometimes read my blog, as do some of my family.  If I were exaggerating I think these people in particular would have something to say about it directly to me.  They don't.  They see the life I lead and what I go through.  They experience it with me.  They see me when I can't breathe, when I'm in ITU, when I'm on a vent - either tubed or on BiPAP.  

My consultant has known me for twenty years and has seen my asthma progress from moderate to its current state during that time.  He has run out of treatment options to offer me, although he is always on the look out for trials of new drugs that I may be eligible to partake in, just as I was discussing with him on Thursday at clinic.  I should also mention that my consultant has held national positions in the treatment and management of asthma so it'd be pretty impossible to dupe him.

Clearly, the anonymous reader who left the above comment knows little to nothing about brittle asthma and has no experience of it.  If they did then they would know how severe asthma can be, and I mean chronically, not just acutely.  Chronic severe brittle asthma is not common, rather it is the extreme end of the illness, so I'm not surprised if this person hasn't met anyone else with it, and because of the extreme nature of it feels challenged by it.  But just because this person is uneducated about it doesn't take away the reality of it for me and for others out there with this extreme form of asthma.

So for the accusation of writing what I do to frighten others.  That is absolutely not the case.  I write what I do, in part, to try to educate people about what asthma can be like, because, like the person who sent the above comment, many don't understand chronic severe brittle asthma.  The more widespread thought of someone with asthma is often a child with a blue inhaler who gets a bit puffed out when they run, but is fine when they've had a go on their blue inhaler.  That is indeed what it is like for many (though adults as well as children), but there is a minority for whom it is a very different experience.

And now, what about that sympathy thing?  Again, I refute that sincerely.  I don't write for sympathy, but for the above reason, and also to kind of think out loud.  I also write to connect with others in the same or similar position as myself - those with chronic severe brittle asthma; those with other chronic health problems who face some of the same challenges; maybe even carers of both those groups.  I know that student nurses are sometimes directed to my blog by some of the qualified staff on the respiratory ward I'm admitted to frequently so that they can get an insight in to what this condition is like from the patient's perspective.  Those are the reasons I write what I do.  Sympathy - no.  It may at times be offered, but I do not want to be pitied and it is not why I write.

Interestingly, while I've been writing this another comment along similar lines has been posted, again anonymously (how lame and cowardly).  Again, the comment will not published in the comments section, but I will post a portion of it here as there are several things I would like to address in it, and some that perhaps others wonder about:

'A 3 week holiday ALONE with no carers, around the uk, which is not the most accessible place yet you managed it ALONE only 2 days after leaving hospital after 5 weeks of near-death/ITU/ appendicitis/slash every other possible disease know to man?! And that's a whole 7 years after you were apparently going blind?'

I will take this bit by bit, so firstly I'll deal with a couple of 'facts' in this that are completely wrong.  The first is that I went on a three week holiday.  No, actually it was just under two weeks.  The second is that I went on holiday on two days after leaving hospital.  Again, no, it was nine days.  The third is this 'slash every other possible disease known to man'.  Er, excuse me?  No.  Yes, there were many complications, but no.  And finally the thing about going blind.  Seven years ago I was indeed referred to an opthalmologist because I suddenly developed Holmes-Adies pupil.  This caused me a lot of problems at the time and for quite some time to come because it takes a long while for the brain to get used to ignoring the blurred vision in the affected eye.  It did actually feel as though I had lost a significant amount of sight, and many folk who know me would be able to tell you the impact it had on me for a long time.  Around this time I was also diagnosed with cataracts.  Perhaps cataracts seem like no big deal because lots of people get them and they usually do fine.  True on both counts, but actually, as they progress you do actually lose your sight, and medics let them progress to a certain point before removing them because there are potential complications.  So yes, by the time they were removed I had very little central vision particularly in my right eye, which is opposite to the eye affected by Holmes-Adies pupil.

So back to the holiday, and I'll first address the question of accessibility.  I have a powered wheelchair that I use pretty much all the time (supplied by the NHS, by the way, so I had to have a referral from my consultant and his physios before being assessed by another physio, and OT and a rehabilitation consultant.  That's just to knock on the head any possible accusation of having acquired it for any reason other than need).  I also have a car with a powered ramp at the back so that I can get the wheelchair in to it. Both of these things give me independence in getting around, so yes, I was able to drive to my holiday destination with regular stops like anyone else, and sometimes napping in the car in a service station car park.

Strange as this may seem to the individual who posted this comment, I actually do my research before I go away on holiday and I make sure that the places I'm staying are accessible.  I booked in to the disabled room of the two youth hostels in which I stayed during my holiday, do accessibility was guaranteed and I spoke with the owners of the cottage that I booked for the middle part of my holiday to make sure that was also accessible.  Whilst some areas around the places I stayed weren't particularly accessible, I (not surprisingly) didn't spend much time there or avoided them completely.  There are also websites such as Radar that give information about all sorts of accessibility issues, including holidaying and tourism, and finally almost all tourist attractions have disabled access information on their own websites or have a phone number on which they can be contacted directly for such information.  This may seem very basic to say, but obviously the person who commented has not thought of such things, or not thought that I had the nouse to find these places and this information.

So, the big question of having gone on holiday alone.  I won't pretend that it was easy or that I wasn't extremely apprehensive about it.  My mother was worried and my consultant was concerned, but they and I also knew that I needed a holiday and that I am organised enough with medications, doctors' letters, and a medical record summary to deal with a medical emergency if one should arise, even though it would have its stresses.  Thankfully the situation didn't arise this time.  Having said that, given how poorly I had recently been, I was told by both my doctors and my mother only to go if I really felt up to it, and to set out with the proviso that I was to return home if I began to feel that it was too much after all.  I knew it that aspects of it were going to be very difficult, but I also knew that because I was going on my own then I could go at my own pace, resting whenever I needed.  I did a lot of resting and a lot of sitting enjoying the view.

That takes me nicely on to the point of having gone on holiday without carers.  While I'm at home I have carers who come three times a week, and when they come they cook my meals and do my housework.  The days that they don't cook for me I either have left-overs or I have something like beans and cheese, or salad, or cheese/Marmite/humous and rice cakes/ryvita, or eggs.  Since I've started eating meat again I've found fish an easy thing for me to cook (if it's already gutted/filleted) because it takes so little preparation or cooking time.  Even with these things aren't necessarily straight-forward for me, but I kind of get by.  Left-overs - either chilled or frozen - are the best.  For the first few days of my holiday I ate left-overs that I'd had in the freezer then transferred in to a coolbag with lots of ice-packs so that they defrosted minimally on the way to my first destination.  I then put them straight in to the freezer at the youth hostel, defrosting them as I needed and reheating in the communal kitchen - such are the wonders of youth hostels!  The rest of my holiday I have to admit that I didn't eat terribly brilliantly, with baked beans and cheese or egg featuring heavily, but as it was only for a short time it was manageable.  Of course, in Dorset coast it's really easy to find wet fish shops so I had fresh fish a few times too.  Other than the fish, my diet was rather tedious at times, but as I say, that didn't matter for just a week and a bit, so yes, I was able to cope for that short period without someone else cooking my meals.

The housework also wasn't a problem.  It would be in the usual way, but as I said before, I had spoken to the owners of the cottage in Dorset before booking it, and had exchanged several emails after booking.  They knew of mobility issues before I went, and they also said that as farmers they are very used to carpets getting grubby so not to worry if my wheelchair took mud in from the farm.  While it's usual to have to clean a rented holiday property before leaving it at the end of a stay, the owners said not to worry about it - they would do it.  This was incredibly kind of them, but welcome too because it had been an aspect of the holiday that I was concerned about.

What, I hear the doubter cry, about unpacking your car?  Easy.  I didn't unpack it at the youth hostels.  I packed a separate bag of clothes for the hostels, took in what food I needed to keep cold/frozen, and had another backpack of other things that I might need.  Again, I'd been concerned about how I was going to unpack the car when I arrived at the cottage (having had a neighbour help me at home with my one heavy box of food), but I needn't have worried because the cottage owner was there to greet me and insisted on helping me unpack the car, and then repack it at the end of the week.

I should also point out that the days of having to do chores at youth hostels are long gone, and the only thing that guests have to do is make and strip their own beds with the linen provided.  The lovely receptionist at the first youth hostel saw that this might be somewhat challenging for me (and it is actually something that generally makes me very wheezy/breathless) so offered to do it for me, and I wasn't about to turn it down.  The same task in the second youth hostel wasn't done for me and was very difficult, almost to the point of being beaten by making the bed, but I did manage it eventually with a lot of breaks and time on my nebuliser.

Looking at that comment there seems to be some hidden accusation that I didn't actually spend five weeks in hospital as poorly as I was.  What can I say?  Friends and family visited me there, and saw me there, and it's in my medical records, and folk set me cards, and some sent me gifts, all of which I received because I was there to receive them.  How many times do you hear of folk who've been discharged from hospital only days after a major operation?  With that in mind, how ill do you think one has to be to spend five weeks in hospital?  If the person who commented cannot comprehend that or does not want to understand that for whatever reason, so be it, but I bet if they'd spent five weeks really poorly as I did they'd be in need of a holiday afterwards as well.

A final word to those cowardly anonymous folk who try to post comments such as those I've used as examples above, I pray for you and the bitterness in your hearts.

Identity

Who are you?  What makes you who you are?  Do you ever think about that?  When people ask you who you are, what do you answer?  Do you say that you're so-and-so's sister or brother, son or daughter?  Do you say that you're the person who lives at number x of y street?  Do you identify yourself by the job you do, the people you work for, the people who work for you?

I'm going through a time of flux at the moment, and a time when I don't know what to say when people ask me what I do.  What do I do?  For the past six years, up until the end of August this year, I could say that I was a student.  First of all I was a student with the Open University doing my undergraduate degree; then I was at student at Newcastle University doing an MA.  Now?  Now I, um, now I'm not very sure.

In theory, I'm a writer.  In theory, I'm writing the rest of my book about asthma, and a children's book about my cat.  In practice, I haven't actually written since I finished my MA portfolio.  I needed the break.  I needed a rest after getting utterly exhausted from having to keep going through the course of my studies.  I want to write the books I'm 'writing', but I'm stuck in a rut of not writing.  To be honest, I'm a bit low.  I have nothing to focus my mind on writing, or anything else for that matter.  I need to get writing again, but the stuff I'm writing for my book about asthma is very emotionally draining, and I'm feeling a little fragile.

And what then?  What about when I've finished the book?  What if nobody wants to publish it?  Can I call myself a writer if I haven't been published?  And that question is relevant to both when I've finished writing the book and to now.  I don't want to self-publish.  Yes, it's a possibility, but it's not the route I want to go down.  I want to be published 'properly'.  This is a bit of a ridiculous question to be worrying about at the moment, given that I've only got about 30 000 words of my book at the moment.  Also, my supervisor for my Post Graduate Certificate portfolio suggested a publisher she thought might be suitable for me to approach when the time came, so it's even more ridiculous to be worrying about it when there's a slight possibility of a publisher.

So if I don't identify myself by the job I do or don't do, then how do I identify myself?  What about you?  Who would you say you are if were to take your job/career away?  Is it by family?  I have parents, yes, and siblings, yes, but they don't define me. Their existence doesn't say who I am, even if their existence contributes to who I am...

I'm confusing myself now...

But there's more, more to do with my identity and the question of who I am.  It's difficult to explain, but it's to do with having carers.  They only come three times a week, although it was recently suggested that I have them more frequently.  I turned down the suggestion.  Yes, it might be helpful, but it makes me even more dependent on others, and thus strips me of independence.  I'm only thirty eight.  I don't want to be dependent on others for normal things of daily living.  I don't want to have to be reliant on others to cook my meals, to clean my house, to do anything for me.  It might seem like a dream to some, to have people come in and cook for you, do your ironing, clean your home, change your bed linen.  Perhaps it is if it's a choice, but when it's a necessity it's different.  When it's a necessity it challenges your perception of yourself, and it challenges others' perception of you too.  Suddenly you become the needy one, the one who can't do things, the person who is not quite so easy to be with, the person who is different.  I don't want that.  I know that I am that.

On the whole, people who care - either professionally or voluntarily - are good people.  They want to help.  Help is good, but help can also be limiting.  The fact that I have these people to do things for me means that I don't do them for myself.  That's great if it's things that I can't do any more, but not so good if there are things that maybe I could do for myself sometimes.  I don't know what these things are, if I'm honest, but I suppose that what I'm getting at is that sometimes disability can  itself be disabling.  Because there are things you can't do then sometimes it is presumed that there are other things that you can't do so you suddenly find that they're done for you.  Again, there are no specific instances of this that I can think of, but I know that this has happened, and I resent its possibility in the future.

The more that things I can do/am able to do are taken from me, either by health or carers, the less I know about who I am.  The less I know what my identity is.  All I do know at this point in time, is that I don't want to be the person who does nothing, who needs everything doing for them, who needs help all the time, who is difficult to be with, who is different.

I want back some of who I used to be.

Home again, home again, jiggety jig

I made my escape on Tuesday last week, but haven't got around to posting until now because I've been getting my bearings again and settling back in.  It takes a surprising amount of energy to come out of hospital, especially after two admissions in such quick succession, and no real respite of any kind in between.  Hmmm, come to think of it I should probably retitle this post as 'Home again, home again, floppety flop.'

It's good to be home.  It's good to be surrounded by my own belongings and to have the cat give me cuddles and purrs.  It's good to have my own space and not have an institutional timetable running my life.  It's something of a relief too not to know what my blood pressure is, or my temperature, or my oxygen saturations, or my respiration rate, and it's good not to have to score my pain on a scale of 0-10.  Instead, I live in blissful ignorance of all these things and get on with what I can of living.  The only trouble being that I'm completely knackered and not completely well.  In fact I was back at the GP's on Friday, and in a bid to stave off a resurgance of the bugs he's throwing another week's course of antibiotics at them.  I think they're working, and I'm feeling less lurgified than I was at the end of last week.

Despite all the pleasures of being back at home, I have to admit that I'm struggling a little emotionally.  I think some of this is post-infection and the aftermath of pneumonia, but there's also the whole thing of getting my head around having been so poorly yet again.  It's draining - emotionally and physically.  I am completely worn out, and yet I'm trying to get on with what I can of living, so I'm back at university already (I went back on Thursday), and I've a fairly busy week this week with seeing family (my brother M and his family are coming up for a few days from tomorrow), as well as test-driving a couple of WAVs, sorting out missed hospital appointments, and trying to make time and find the energy for some writing.  It's too much really, and today I have somewhat resembled a heap of misery and grumpiness for most of the day. Actually, I was doing okay first thing, at least I thought I was, although I could feel all the mess not too far below the surface and was trying to ignore it.  Then my mum phoned to see how I was doing and all of a sudden I dissolved into tears and spent the next 45 minutes being a gibbering wreck on her.  Most of the rest of the day has been much the same ever since, only it got a little worse when my carer didn't turn up this evening with no call.  W came to the rescue, came round, and cheered me up just by being here, even though she had to bring her poorly guinea pig with her and he died while they were here :o(  Very sad.

So yes, it's a bit of a mix and I'm rather lacking in jiggety jig, but all in all it is good to be home, and I'll work my way through the emotional debris somehow ... in time.

You're fired! You're hired!

You probably remember that my last hospital admission was triggered by an allergic reaction, and that the most likely cause of the reaction was vegetables not being cleaned thoroughly enough by the carer before cooking.  You may also remember that Social Services were having to conduct an investigation because of the seriousness of my situation.  The investigation turned into a bit of a farse, in my opinion.  'They' asked the carer in question for an account of what she'd done in preparing my meal that evening, which she described, also adding that she didn't think she could have done anything differently.  'They' then decided that I must have developed a new allergy.  Case closed.

I have eaten all the ingredients of the fated meal since then with no reaction.  I have not developed a new allergy.  Case not quite closed, if you ask me.  I made it clear to the social worker that, in my opinion, this is a cop-out, and that I definitely haven't developed a new allergy.  The social worker was apologetic, and acknowledged that 'they' didn't have the clinical expertise to diagnose the development of a new and non-existent allergy without clinical examination, i.e. they shouldn't have jumped to this conclusion simply because the carer said she thinks she washed the veg okay.

Actually, the social worker was lovely, and she came here (to my home) with one of the clinical nurse assessors.  After talking it all through, and discussing my on-going care needs, it was decided between the three of us that a different care agency would be found for me as the current one aren't providing the service they're being paid to provide to an adequate standard.  The social worker left saying that she'd give the agency their 28 days notice.  They're now working this notice.

The social worker told me about a relatively new care agency that allows the client to interview prospective carers, and what she'd heard so far about the agency all seemed to be positive, so I agreed that they might be a good choice.  I had the manager from that agency come round on Tuesday to discuss my care needs, and I was able to stress that whoever comes must be able to cook.  I described some of the experiences I've had with carers from the current agency, and after she picked up her jaw off the floor she agreed that the ability to cook something more technically demanding than a ready-meal was a definite must.

I had a call from the manager of the new agency today.  She's 'identified at least one suitable possibility in their carer pool,' and they're both coming round tomorrow afternoon.  The manager will go through the paperwork that she didn't bring on Tuesday, and the three of us will discuss my 'needs and expectations,' and then I think the carer said that she'll leave me and the prospective carer alone for a while so we can discuss things further and I can ask any questions I may have.

I currently get my domestic care (cleaning etc) provided by a different agency.  I'm not sure how it happened this way, but I've been thinking that it would make more sense to have all my care provided by one agency if possible, so on Tuesday I asked the manager of the new agency about the possibility of getting my domestic care through them as well.  Of course, it'd first have to go through the social worker so that she can discontinue the contract with the current agency, but there shouldn't be a problem, especially as it's a bit of a battle to get the person who comes for my domestic care to do a decent job.  The agency manager said they'd be happy to provide that service too, but maybe I'd want to see how they pan out with the other bit of the care package first, and that it wouldn't matter if it didn't all start at the same time.  This is looking promising. 

So far the new agency seem much more client-centred than the other agencies I've had, even to the point of asking me what time would be good for me to have them come!  No more having my main meal of the day being prepared at 4.30pm - hurrah!

What next?

I feel rubbish and I'm afraid this is likely to be a bit of a moan.

I guess I'll start with the good bit, which is that my lungs are improving and I'm now off the oxygen. My oxygen sats are a little on the low side, but that's fairly normal for me when I first come off the O2 and my body gets used to doing without the extra. It's fine. They'll sort themselves out.

All is not well though, and the bladder and kidney spasms I was experiencing progressed into renal colic with excrutiating pain that ultimately caused me to pass out and end up in a very distressed state. Yesterday was a day of total agony with the renal colic, and today hasn't been great either, although it hasn't been as protracted as yesterday. When I'd been transferred from the RVI to ward 29 I had gone into urine retention, so had needed to be catheterised. There was thought today that the catheter might be aggravating my bladder and making the renal colic worse so it was removed this morning, and it does seem to have lessened the pain a little, although when it comes it's still bloody awful. However, it also seems that I've developed a urinary tract infection, with blood in my urine, which is making me feel rubbish and ill, and totally worn out. It's one thing after another, and all on top of Nn's death, and I feel like I'm running out of resources.

Then there's the whole thing of how I ended up in here this time - the allergy and subsequent asthma attack. Social Services are having to do an investigation into what happened because of the severity of the consequences. This is probably a good thing, but it is somewhat anxiety provoking. I don't want the carer who prepared the fated meal to become a scape-goat for the inadequacies of the system, and I don't want to be faced with negative attitudes myself when I eventually get home and have the carers back. I don't particularly want the same care agency to resume my care, because I think it might be quite difficult and ... well, can I trust that the same mistake won't be made again? Perhaps it'll mean greater vigilence by the carers when preparing my meals, but not necessarily. I don't know what the answer is. Anyway, the main thing is this protection of vulnerable adults high risk assessment investigation that's going on. A social worker conducting the investigation spoke to the staff on ITU when I was there, and they've also spoken to W to ask for her account of events. They were in contact with the ward here last week asking if they could come and interview me 'at some point in the next day or two', which I presumed to mean they'd come last week, but nobody came. The ward sister contacted Social Services about it yesterday and apparently they still plan to come and interview me, but didn't say when it'd be. In the meantime they sent up one of the hospital social workers to ask a few of the questions they had, although she also said that the investigating social worker would definitely be coming to interview me along with someone from the care agency! It's hanging over me now, causing me stress. I'm trying not to think about it, but it's difficult. It seems like a huge thing to be going on, and totally out of my control. Of course I can see that it needs to be done, after all the event nearly cost me my life, but I don't have much in the way of resources to cope with the enormity of it ... and as I say, I don't want the carer involved to be scape-goated. The agency are contracted to provide a particular service for me so they should be able to provide staff with adequate training and skills to provide that service. The fact is that they don't, so it's the system that's really at fault, not the individual. I just don't know what's going to happen or what attitude I'm going to presented with when I'm interviewed.

Sometimes life gets on top of me. Now is one of those times.

Something I could do without

When I got the news about Nn I felt as though I couldn't cope with the stress of my stupid carers coming so I cancelled them for two weeks. It seems incredibly ridiculous that the people who are supposed to be helping me are actually causing more stress, but they are. Today was their first time back here and I was dreading it. I received the time sheet on Saturday so knew who to expect, and was dismayed to see that I'm stuck with the most incompetent of them all for each of this week's visits.

Tonight I wanted Stupid Carer Woman (SCW) to make a pasta sauce. I gave her a recipe. A very easy recipe for a basic tomato sauce with the addition of mushrooms and fresh basil, reminding her that both these ingredients would need to be very well washed because of the stuff that gets sprayed on them and to which I'm allergic. Fine. Left her to it while I finished off what I was doing on the computer, until she called me back asking if 'saute the onions' means to slice them. Feeling despair begin to spread over me I explained what 'saute' means, and went through the rest of the recipe for any more difficult words ... such as 'cook'!

I went off to have my bath, afterwards coming back through to find that what SCW had made actually looked okay. A huge surprise. I had my dinner about an hour ago, and was equally surprised that it tasted okay ... not fantastic, and it had a bit of weird after-taste, but okay. However, I'm now very itchy scratchy, rather wheezy, and my insides feel squiffy. I suspect that SCW didn't wash the mushrooms and basil very well, because this feels very much like an allergic reaction to something, and I haven't eaten anything else that I could be allergic to. I'm hoping beyond hope that this doesn't progress into anaphylaxis, but either way, this is something I really could do without.

Appointments

Last weekend I was approached by one of my neighbours while I was out shopping in the local small supermarket. She's someone I've seen around a lot, but never actually spoken to, but this is an area with a good sense of community so it wasn't much of a surprise that someone I frequently saw in the street should stop to speak to me. What was a little surprising was that she was asking me about my care needs and what care I currently get. It turns out that she used to be an occupational therapist, took a career break to have children, and now that they're all at school she wants to get back into work, but OT jobs seem to be a rarity so she's thinking of becoming a carer or PA for the time being. She was asking which agencies my carers come from, so I told her and explained that they're sub-contracted from Social Services. So then she asked about whether I'd ever considered getting direct payments so that I could choose my own carers, and I explained that it was something I'd recently been thinking about, but I don't think it's possible as my care is now paid for by the NHS after the Continuing Care Assessment I had last year. Anyway, she was lovely and I said I'd be happy to give her the phone numbers of the agencies that provide my carers in case she wanted to get in touch with them about employment. She popped round to my flat a little later that evening and we had another lovely chat, during which she asked if I'd consider employing her as my carer, and that she could supply references and get a CRB check etc. Although this might seem a bit odd given how quickly and unexpectedly this has all come about, she is actually someone I would consider appointing as a carer (providing she can cook! ;oP ) if I could get direct payments. I decided I'd enquire about the possibility of direct payments and found the address to email the right department. That was on Friday/Saturday night, and I had a phone call back from them on Monday morning, but unfortunately the news wasn't good, and it seems that because I now have my care paid for by the NHS then I can't get direct payments, which seems not only daft but somewhat unfair. Why shouldn't I be able to choose who my carer is just because of the funding body? The social services person who phoned me back (it may even have been a social worker) did give me the phone number of the 'nursing assessors', whoever they might be, who may be able to help, and a friend of mine who's a social worker has said that it may be that something akin to direct payments is an option, but with a different name. I've yet to contact the nursing assessors, but I will do when I've got a bit of time not taken up with study and hospital appointments.

I've had two hospital appointments since Thursday. The first was with my asthma consultant, Dr H. I wasn't expecting anything much as there are never any new treatments on the horizon that'll be suitable for me, and sure enough, this is still the case. However, Dr H is unhappy at the huge dose of predisolone I'm on and have been on for well over a year now - for the past eighteen months I don't think I've managed to get my pred dose below 85mg, and at the moment I'm on 100mg! This is down from the 125mg I was on at the beginning of the year, but not by much and it's still an absolutely enormous dose. Now it should be that a corticosteroid is a corticosteroid is a corticosteroid, but Dr H is wondering if I may respond better to another one - not pred - so we're considering changing over to Kenalog. He said it's tricky to work out comparable doses of Kenalog to prednisolone, and he also explained that Kenalog is given as a depo-injection every few weeks, rather than by tablet. This would kind of be an advantage I suppose as it'd be one less medication (and a whole load of tablets) to have to think about, but I guess the disadvantage is that the dose can't be varied so if there's a brewing splat I don't know if I'd have to up my steroid intake with extra pred... I guess that'd be something to discuss with Dr H, but the final decision on Kenalog hasn't yet been made. We're both going to think about it over the next few weeks and then perhaps come to a decision when I next see him. I'm hoping that this will be in clinic in May, but I'm not convinced I'll make it that long without another splat. The old breathing bags are being quite grumbly and unpredictable at the moment, and my peak flows are more erratic than usual with an emphasis on being low :o( I'll keep you posted about all that.

Today I had an appointment at the Falls and Syncope Clinic, and again I wasn't expecting any miracle cures, and again I was right that there aren't any miracle cures. However, the doc does want to see if they can get me any better than I currently am, with less passing out, less falling about, less dizziness, less POTSiness and vasovagal syncope-ness all round. He said that the first thing to do is to get a 24-hour blood pressure monitoring, so he's put me down for that between now and my next clinic appointment. He said they monitors seem to be coming available quite quickly at the moment so I may not have to wait too long for that, which would be good, especially as he wants to see me back in clinic in six weeks time. After that there are a couple of possibilities primarily targeting my tendency for low blood pressure (and vasovagal syncope), the first of which is the mineralocorticoid Fludrocortisone. I think it works by causing retention of water and therefore raising blood pressure, but of course, as a steroid, it has all the possible side-effects of steroids too ... not that that's going to be increased very much from what I'm already on for my lungs. To be honest, I'm not thrilled with the thought of intentional water retention after my miserable experiences of unintentional water retention, so I'd prefer the second option - Midodrine. I don't yet know a huge amount about midodrine, other than it raises blood pressure (and a very little bit about how it does that), and that it's not currently licenced for raising blood pressure so it'd have to be prescribed off-licence. The doc explained some of the potential side-effects, the most notable being that it can reduce potassium levels, which may be a concern as my nebs can do that too and low potassium levels can be dangerous to heart function (and other organ systems too). The other side-effect he said that some people find intolerable is a kind of goosebumpy feeling as the med makes all your hairs stand on end. I'm not sure which of those two drug options I'd prefer. The doc said he'd prefer to try fludrocortisone first, but I think I'd be more inclined to try midodrine first, though I suspect that at the end of the day it'll come down to the doc's preference, not mine. Before a decision is made, though, we'll see what my 24-hour BP monitoring shows.

Master Chef meets Krypton Factor

You may know that I have a lot of allergies, most of which are anaphylactic, and many of which are to foods. The main things I'm allergic to are preservatives and colourings, and you'd be surprised at what you'd find these in, even in so-called healthy foods. One of the consequences of these allergies is that I can't eat any ready meals so I have to have all my food cooked from scratched. Yes, real cooking! I quite enjoy cooking, but I'm very limited these days in how much I can do because of my tendency to pass out when standing due to the POTS and vasovagal syncope. It's not very safe to faint whilst standing over a lit gas hob so these days I have carers come to cook for me three evenings a week. It can be a bit tying sometimes if I have things to do, or I want to be out, or if they turn up early, and I've never been the best at planning meals ahead so sometimes I get a little frustrated at having to be organised with this kind of thing. It's made a little trickier by the fact that they come at 4.30pm, which is far too early to have dinner so I need to think of things that I can either re-heat quickly later on or that take a long time to cook. Last year W bought me a slow cooker and that's been a god-send with these carers as they can do all the cooking bits then set the slow cooker away to do its stuff so that a few hours later I can have tea at a much more sensible time. Marvellous. All I need do is provide the recipe and ingredients...

It would, however, seem that cooking is an alien concept to many of the carers who come to me and the tasks I lay before them are akin to those on the Krypton Factor. Now it's not like I ask for anything particularly complicated - in fact that's another challenge for me as I have to try to find simple recipes - except that the mere thought of cooking anything other than a ready meal or heating up a takeaway appears to be very complicated. I have several different carers come to cook for me and I only really have confidence in one of them. They're all lovely people, yes, but you wouldn't find them on Master Chef. I had one who, on her first visit here, told me that her father is a chef so I optimistically thought that he may have passed on some of his culinary skills to her. Nope. She had to ask me how to cut the leek I'd put out with the ingredients for my dinner. On one of the days the following week a very sweet young carer (maybe in her late teens or very early twenties) came. She pointed at the pile of ingredients on the bench, made her face Dali-esque and squawked, 'What's that?!' It was a sweet potato. The day she came and I had a raw beetroot I'd been given on the bench I thought she was going to run away in fear so I had to reassure her very quickly that it wasn't part of that night's dinner; it was just on the bench as a place to put it. I then had to explain that it was a fresh beetroot, and no, not all beetroot comes pickled in jars. Bless her ... and God help me!

I guess I don't mind so much if the person who comes is honest about their cooking ability. I can allow for inexperience. I can prepare myself for perhaps not the tastiest meal I've ever had. So long as they make sure all the veg etc is suitably washed so that they don't accidentally kill me then I can pretty much let them off. It's when they're 'misleading' about their culinary skills that it gets me. I had one woman come - another friendly character - who, when I explained about my allergies and therefore the need to do 'from scratch' cooking, assured me that she was a good cook. She told me that she'd been married to a Morrocan man for seven years so had cooked all his meals from the raw ingredients and was quite experienced. After tasting the soup she made me I wonder if she's still married to the Moroccan man or if in fact he's dead. I set her the challenge of making me butternut squash and carrot soup with a little ginger and chilli. As always I'd set out the ingredients on the bench. As always I presumed she'd follow the recipe in terms of quantities, and I even provided scales for weighing out any ingredients she needed to weigh. I went off to have my bath (the heat of a bath or shower makes passing out more likely so I have a bath while the carer's around in case there are any problems) and left her to make the soup. When I returned to the kitchen I discovered that she hadn't actually fried the onions, garlic, ginger, chili, or any of the veg before adding the stock (homemade stock as I can't have the bought stuff); she'd simply chopped it all up, put it in the enormous pan, and filled said pan with all of the stock I had. And it was only after she'd left that I realised she had no discernment at all regarding quantities. She had used a whole green chili, a whole root of ginger, and a whole bulb of garlic! I let the thing, the concoction, the pot of poison bubble away in the hope that maybe it wouldn't be so bad really, but after I'd blitzed it in the liquidiser and tasted the tiniest of tiny amounts there was no fooling myself into thinking that this was edible. It had somehow transformed itself from appetising and tasty fresh vegetables to some kind of anti-food. I think I had boiled egg that night instead. The next time she turned up I lied that I was going to my dad's for dinner that night, but I still needed her there while I had a bath. I don't remember what I ended up doing for tea in the end, but I couldn't face sampling her cooking again, that was for sure. On the bright side, as she wasn't cooking for me that evening she offered to do other stuff so she did my ironing. The carer who comes on a Wednesday morning is supposed to do my ironing as well as the cleaning, but the one I've had most since my regular Wednesday carer left the agency is rubbish at ironing, doesn't like doing it, complains all the time she is doing it, and doesn't do very much of it. Needless to say, there was rather a lot of ironing to do. It all got done and I also didn't have to suffer her cooking. Bonus!

I had yet another carer come tonight. I have to say that she was ever such a lovely person, and she did in the end manage to follow the recipe and produce a very nice dinner in the slow cooker for me. However, I also have to say that it is quite miraculous that she managed to follow the recipe and produce a very nice dinner in the slow cooker for me. When I told her that she'd be cooking from scratch she looked terrified, aghast, distraught. She came clean that she doesn't cook. I told her not to worry as I'd put all the ingredients out along with the recipe, and assured her that a slow cooker is really easy to use. She'd never seen a slow cooker before. She doesn't even use a conventional cooker. She lives off sandwiches. This was going to be a challenge ... for us both. Right then, time for some education. I introduced her to the concepts of fresh vegetables, cartons of butter beans, and uncooked wholegrain rice. I gave her her first sighting of saffron, and explained that she should use only a very tiny amount as it's so blooming expensive. That scared her. I got her a pan and showed her how to light the hob. I showed her the recipe book. I thought she was going to collapse with repressed hysteria. 'Oh,' she squeaked through tightened vocal chords, 'I've never used a recipe before. I'm not sure that I can. I mean, I'll try, but I'm scared. I've never done it before. It looks so complicated.' We read through the recipe together, and I explained that yes, she would have to use the hob a little bit to brown the leeks ... and I explained what 'browning the leeks' meant, and I reassured her that she'd be fine, and I went off to hide in the bath. After a while I could hear a lot of clattering and I could smell burning, but I figured that being in the bath surrounded by water was perhaps the safest place to be if the carer was going to accidentally set fire to the flat, so I stayed put and hoped I'd still have a kitchen by the time I plucked up the courage to get out of the bath and back to the carer. Thankfully I do still have a kitchen, and despite the burning smell I see no evidence of there having been any flames. When I reappeared though she did say that she hadn't washed the butter beans, and asked how she was meant to do that so I said to use either the sieve or the colander. She looked at me blankly. I showed her what a sieve looks like.