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.

Interlude

The plan had been to write a second post about Norfolk a couple of days after the first.  Plans don't always go as I'd hope, and this time it certainly hasn't.  A day or two after my last post I started to feel grotty.  It wasn't anything particularly tangible - a deep fatigue and malaise, and an inability even to think properly.  I was hoping it was just a bad day of some kind as I was supposed to be going to Liverpool the next day to meet up with some good friends from the Open University.

That night (Thursday) I had an awful night.  I didn't sleep well, I was very restless, I just didn't feel well, and when my alarm went off on Friday morning I felt awful.  My insides decided they'd prefer to be on the outside and my temperature was up to 39.7C.  There was absolutely no way I was going to get to Liverpool, but to be honest, I felt too ill to be too disappointed.

I couldn't keep my meds down, and I was concerned that my asthma would get completely out of control because of that.  My temperature wasn't responding to the tiny amount of paracetamol that I did manage to get inside me, and I was becoming dehydrated.  I rang the GP.  When I said to the receptionist that I think I needed a home visit she sounded a bit incredulous, but really she should know that I would never ask for a home visit if there was any chance I could get to the surgery.  She said that the doctor might just phone me, instead of visiting.

The doctor did ring me, but he said he was quite concerned so would do a home visit too.  I unlocked the door the next time I got up to go to the bathroom, and when Dr Cn arrived he let himself in.  He could see that I really wasn't well, and he was also worried that I wasn't able to keep my meds down, so he prescribed some Buccastem -  an antisickness tablet that dissolves slowly in the mouth.  He then rang the local pharmacy and got them to deliver it to my home, telling them that I was in no way well enough to go to the pharmacy myself.  I then gave them the prescription Dr Cn had left when they came around with the meds.

The day passed in a haze with weird dreams of high temperature, interspersed with many, many trips to the bathroom.  The doctor then rang me again before he left work for home at the end of the day.  He asked if I'd be okay.  I said that I probably would, but I was thinking, 'I don't know.  You're the doctor.'  Anyway, he told me that I should contact the out of hours doctors immediately if I got any worse or was at all worried.  I promised I would.

The cat was obviously really worried as he wouldn't leave my side.  This may sound odd, but Zach is very sensitive, and when I'm ill at night with my asthma he pats my face gently with his paw until I wake up.  He then watches me intently until I'm sorted and breathing easier.  He didn't need to wake me on the Friday, but he did stay glued to my side, following me into the bathroom and watching me closely all the time.  W came round in the evening and she realised that Zach must be starving because he hadn't touched his food in the kitchen.  He wouldn't go through to the kitchen because he was too busy guarding me, but W brought his food into my bedroom and he snaffled it down.

W was brilliant (as ever).  She cleaned my toilet and the bin that I'd earlier vomited in because I couldn't get to the bathroom fast enough.  She went back to her house and brought her fan back to mine to try to help cool me down.  She sat with me for several hours until I was fast asleep, sometime in the early hours of the morning.

Saturday was much the same as Friday, but I was getting more dehydrated.  When W came round in the evening she went to the supermarket for me to get some rehydration salts (and she also came back with some beautiful flowers that cheered me up loads).  She checked the ingredients in the shop.  I checked the ingredients when she got to mine with them.  W checked the ingredients again.  I checked the ingredients again, and again for luck.  There didn't seem to be anything in them that I am allergic to, so I set to trying to get them into me and keep them down.

Twenty or so minutes after taking the rehydration salts I was lying in bed (in fresh sheets that W had just changed for me) when I realised that I was itching a lot.  Then my eyes started to get itchy and sore and my left eye was swelling up.  I took some antihistamine, but still, my lungs began to tighten and I could feel my throat beginning to swell.  When my nebuliser did nothing to ease the chest tightness and wheezing, and I was being more sick than I had been, I knew I had to take my epi-pen.  I was heading towards anaphylaxis.

The protocol for anaphylaxis is that when you use an epi-pen you have to go to hospital.  You should also call an ambulance to get to hospital.  I hate ambulances.  I did go to hospital, but W took me in her car...  Thankfully, we got there no problem, and possibly quicker than in an ambulance as it was a Saturday night in Newcastle.

I was seen as soon as we went into A&E, and taken straight through for treatment.  The department was full of drunks and people laid out on trolleys in various states of drunken unconsciousness.  The bloke in the bed next to me was absolutely wasted, and trying to get up despite being in head blocks because he had a suspected broken neck.  The poor nurses really had their hands full.  But regardless of that, they were great with me.

Once I was stabilised in A&E I was taken to the Emergency Admissions Unit where I spent the rest of the night and most of the next day.  The anaphylaxis was settling well, but I still had a high temperature, I was still vomiting, and I still had bad diarrhoea so I was far from well.  The medics said they wanted to keep me in for a while, but said that they'd probably keep me in my side room on EAU.  This is why it was a particular surprise when the porter came to take me to the ward.  Nobody had told me I was going to the ward, or what kind of ward it was, so it was even more of a surprise when the porter said I was going to the ward for Tropical Diseases!

It turned out that the ward for Tropical Diseases is also the ward for Infectious Diseases, which gastroenteritis certainly is, and a ward for those with compromised immune systems.  Nonetheless, it was still somewhat unnerving to be going there, and even more so when I arrived.  The Tropical and Infectious Diseases ward is the only ward on the top floor of an isolated part of the hospital.  The corridor leading to the ward is locked.  The door going on to the ward is locked.  There is a red light above the door that indicates when someone on the ward has something particularly nasty.  Each patient has their own room, and each room has a double door/airlock entry system.  Each cubicle can have the pressure inside adapted (I guess some tropical diseases affect pressures, or something), and each room has a camera on the wall so that the patient can be watched with medical staff requiring as little contact as possible.  At night time the camera lens is encircled by red LED eyelashes so that the patient can still be seen in the dark.  The windows in the room don't open.  People hardly ever come in, and when they do they're clad in apron and gloves.  You see these kinds of wards on apocalyptic sci-fi films, but you never think they really exist.  You think there must be some artistic licence for dramatic effect, but no, they do really exist, and I found myself on one.  It was all very, very surreal.

I was on the T&ID ward for three days before coming home on Wednesday evening.  I'm a lot better than I was - so, so much better than I was - but I'm still not right.  It turned out that the gastroenteritis was a bacterial bug, and one that's reportable to the Health Protection Agency, so apparently I might get a call from them to see if they can locate the source of the infection.  I have an idea, but I'll leave it up to the HPA to confirm or otherwise.

I am now completely wiped out.  I still don't feel terribly well, and apparently I could have some symptoms for up to four weeks!  I think this is going to be a slow recovery, and definitely not helped by the anaphylactic reaction.  W and I have contacted the manufacturers of the rehydration salts about that.  The only thing it can have been that caused the reaction is the flavouring, for which the ingredients weren't listed, and under the 'side effects' section in the patient information leaflet it says, 'None known.'  I've filled in a couple of forms for them, and they're also sending one of the sachets off to Germany to be analysed, so at least they're taking it seriously, although I'm still going to try to get in touch with them to find out what the ingredients are in the flavouring.  It's important that I know.  Either there's something in it that I know I am allergic to, but which isn't listed in the ingredients, or I have developed an allergy to something else.  I just hope they give me the information I need.

It's been quite some week.  I'm hoping for a much less eventful week this week.

Decision made

It's a while since I posted because I've been busy with writing things for my MA portfolio/dissertation, but it didn't take me long after my last post to make my final decision about whether or not to give up being a vegetarian.  As I said in that post, I had been thinking about it for a long time, although I hadn't told anyone.  I have made the decision to break my twenty year meat fast, and have surprised many with my decision.  I thought my mum wouldn't be quite so surprised because I'd talked a little about it with her while we were away together, but she really was.  She still is.  My brother, M, has been surprised but more supportive than I could have imagined.

There were many reasons I came to the decision I have, some of which I talked about in my previous post, some of which I touched on.  I'm not going to go through them again, but I do think I've come to the right decision for me at this time.  It still surprises me when I look in the mirror and I suddenly think, 'Hey, you're not vegetarian any more,' because it's been part of my identity for twenty years - all of my adult life.  The rest of the time it's felt like a new adventure.

I have no idea how to cook meat so I've been buying cook books from here, there, and everywhere.  Having said that, the fishmonger has been really helpful the couple of times I've been there, and the butcher at the farm shop was also helpful, if a little perplexed (even though I had explained it to him).

Once I'd made my decision to eat meat again I thought it would be a good idea to see if I could get an appointment with the dietician at the immunology department.  It took several days to get to speak to her on the phone, but she was very helpful and is very happy to see me face-to-face, although it means getting a re-referral from my GP as it's over a year since I was seen in the immunology department.  The referral is now going through, but in the meantime the dietician said that one of the main pieces of advice is that as a general rule I should never eat meat bought from a supermarket because of the added colourings and preservatives.  I also can't have any cured meat (unless I cure it myself).  I did in fact speak to the butcher at one of the big supermarkets nearby.  I won't name the supermarket chain, but the butcher did tell me that they do dye a lot of their meats.  Even the organic meats, which arrive at the shop unadulterated, but then the supermarket themselves add the dye.  They can still sell the meat as organic, because that is how it has been reared and prepared, up until the point of arrival in the shop.  I don't know about you, but I think that's diabolical.

Before I became vegetarian I never enjoyed holding raw meat, but I've done a lot of reading in recent times, and one of the books I've read is Hugh Fearnley-Whittingstall's 'Meat' book.  In it he talks a lot about the ethics of eating meat, and says that if an animal dies for us to eat then we have a responsibility to treat it with the respect that it deserves (it says a lot of other things too and is worth reading).  I've born this in mind when  I've been handling fish and chicken - the only two meats I've eaten so far - and haven't had that thought of 'Eurgh, this is disgusting,' that I used to have.  It is, after all, still just the animal that was walking around in the field, or swimming in the sea/river, before and that I respected.  I'm going to be trying lamb tomorrow, and I'm hoping that I'll feel the same way with that too.  I can't see any reason why I wouldn't.

It's taking a bit of getting used to having meat in my mouth again.  It's the texture, not the taste, and the weird feeling of having my teeth kind of stuck together by the food that I'm eating.  But so far as the taste is concerned, I've liked it.  So far I've had trout, salmon, sole, and chicken, but I'm very much still learning how to cook any of it, although the advice I've had from the fishmonger and farm shop butcher has been spot on.

I think this is going to be an interesting journey.  It may not always be entirely comfortable, but that'll be for me to consider along the way.  At the moment I think I've made the right decision for me, not least because I've just been diagnosed as anaemic again.  I'm sick of taking endless tablets, and whilst there's not a lot I can do about taking almost all of them, I can try to help myself with my iron levels, and maybe not have to rely on iron tablets for too long.

Controversial

I'm the sort of person who usually thinks about big decisions a lot before 'making them public', which means that such decisions can appear to others to come out of the blue.  This happened when I set up my business, '9 Lives Craft Designs.'  I thought about it a great deal and looked into the practicalities and financial implications on my own before telling others my plans.  When I did then tell people they were somewhat surprised the next time they came around and my flat was covered in handmade cards and craft materials all over the place.

I'm thinking about something 'big' now.  Something that will greatly surprise those who know me well and have known me a long time ... I'm thinking ... Hmmm, am I ready to disclose this? ... I guess I must be in some respects as I've started writing this post ... ... ... I'm thinking of giving up vegetarianism.  There, I've said it.

I haven't yet made my final decision, and it is a major decision because I have been a lacto-ovo vegetarian (a vegetarian who drinks milk and eats eggs) for twenty years.  There were a number of reasons I decided to become vegetarian all that time ago: firstly, there were the ethics of eating meat, manufacturing animals, and slaughtering animals; and then there was the fact that I was in the midst of an eating disorder, and any reason not to eat something was helpful in maintaining that disorder 'legitimately'.  There were other reasons too, but these are probably the two that are most influential in this time of reconsideration.

I have battled with my weight for years, but during my late teens and twenties I fought with both anorexia and bulimia.  I have overcome these, but I have soared into the obese range, and I don't just mean this as a subjective thing from my perspective.  As I've said, my decision to become vegetarian was also based upon my ethics, but it was also influenced by my fear of food at the time.  Yes, I still battle with food, but I wonder if it might make a difference if I tried giving up this last restriction I imposed upon myself, although I have to say that it hasn't felt like an imposition.

As for the ethical thing, that's more difficult.  I still have big uncertainties about the meat industry, and should I decide to become omnivorous again I would avoid mass-produced meat.  Mind you, I wouldn't be able to eat most of the mass-produced stuff anyway because of allergies.  Most supermarket meat is injected with red food colouring to make it appear bloodier and therefore fresher, and some are also covered in preservatives.  Both colourings and most preservatives instigate anaphylaxis in me.

That said, health is one of the things that's been making me think about giving up vegetarianism.  My diet is so restricted because of my allergies, and although I've managed well since all the allergies were eventually diagnosed seven years ago, I depend on dairy products and eggs a great deal as sources of protein.  In recent years I have also been prone to anaemia, which is exhausting and doesn't at all help the POTS, or my health in general.  Yes, I have beans and pulses regularly, but I'm still lacking in protein and iron.

I know that some vegetarians who return to an omnivorous diet eat only fish.  Some still continue to call themselves vegetarian even though they eat fish.  I don't hold with that view - that you are vegetarian if you eat fish, because it's still a body.  I wonder what the ethics are behind only eating fish... I'm not convinced that eating fish is any different from eating any other animal, and I think that if I decide to give up vegetarianism then I will not differentiate between fish and meat.

I was in the supermarket today, and whilst I wouldn't be able to eat supermarket meat, as previously mentioned, I did make myself wander down the meat aisle.  I'm not sure how I felt.

Contemplating this change in lifestyle feels very controversial ... mainly within myself, but maybe too with those who've known me for a long time.

I haven't yet made the decision, but I know which way I'm veering.

In hand

Slowly, ever so slowly, I'm getting through my work.  I have now submitted two of the pieces of work for my MA and only have 1000 words left to do of the third submission.  Of course, I then have 15000 words of portfolio/dissertation to write, but that's not due in until the end of August so there's plenty of time left to worry about that get that done ;oP

Things have been somewhat slowed by a complication arising from the carpal tunnel surgery I had in March.  One side of my hand has swollen, is incredibly tender, and is causing horrible pain in two of my fingers and some of my arm.  I've been seeing the physio at the hospital for several weeks because I've had reduced mobility at my wrist, and hypersensitivity at the site of the scar, so when things got a whole lot worse at the beginning of last week I called the physio department for advice.  The physio told me to see my GP that day and also made an emergency appointment to see her the following day.  Amazingly, I actually managed to get an appointment with the GP - amazing because it was almost midday when I rang and usually all appointments have been taken ten minutes after the phone lines open at 8.30am.  So I got to see the GP, but it was a trainee, who was very nice, but didn't have much idea what the problem was or what to suggest, other than increasing my diuretics to try to reduce the swelling.

I saw the physio the following day - Wednesday.  She also didn't know why my hand has swollen, but she thought the swelling was causing compression of the ulna nerve.  Rather than seeing me in the rehab department where she usually sees me, she had told me to see her in the hand clinic in case she thought I should see a doctor.  She did, and she grabbed one (I presume not literally, but I didn't follow her into the corridor to see), and the doc agreed with the physio's diagnosis as there was no evidence of infection.  They decided that my appointment with the surgeon should probably be brought forward, and that came through the post two days later for 19th June.  They also decided that for now I ought to use my hand as little as possible (easily done, because it's far too painful to use much anyway), have it elevated in a sling, and have some nerve-specific pain killers.

The hospital doctor had two pain killers in mind, gabapentin and amyltriptyline, but didn't have time to check through all the ingredients to see if either contain anything I'm allergic to, so instead said I should contact my GP.  I phoned the GP as soon as I got home, explained the situation to the receptionist I spoke to, giving the name and contact number of the physio in case the doctor wanted to speak to them.  Anyway, after the doc had finished surgery she called me back, but hadn't been able to speak to the physio so I explained it all again to her.  She was lovely (as ever), and checked both drugs for potential allergens.  As it turns out, I can't have amyltriptyline because it's in the same classification as a medication that I had an anaphylactic to several years ago.  However, gabapentin seemed okay so she prescribed that and faxed it over to the pharmacy for me to collect as the surgery was about to close.

Gabapentin does seem to work, but it also makes me feel very nauseous, so I'm trying to cope with the pain  some of the time.  I say this very tentatively, but I think it might be a little bit better anyway, and I think the swelling might have gone down a bit too.  I hope so because the doctor at the hospital said that nerve compression can cause long-lasting muscle weakness, which itself can cause the hand to wither and permanent loss of function.  There are some things you just don't need to hear!

I have to go back to the physio on Wednesday morning so we'll see what she thinks then.  I'm hoping that I will at least be able to take the sling off when I've seen her.  It makes life tricky, and isn't helping me get my work done.

Okey dokey, I'm off to bed now, but hopefully I'll have got the last of my MA coursework out of the way in the next few days and will be able to tell you all so when I next blog, which I promise will be a lot sooner than the time between this post and the previous one.

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.

Slow progress

Not long after my last post I was very ill. The allergy progressed so that I was very itchy, bright red, nauseous, vomitting, wheezing, and beginning to swell. I took lots of antihistamines, which reduced the swelling and lessened the itching, but my breathing continued to deteriorate. I texted W to say what was happening, and she came and took me to A&E. At my first time of texting W I hadn't been sure whether or not I'd need to go to hospital, but in the end there was no doubt about it, and although we ought really to have called an ambulance W whizzed me up to A&E herself. Things were bad, but they weren't dreadfully dreadful, although I did get sent straight through for immediate treatment without any waiting around, and then I found myself in resus. I spent the night in the monitoring bay of the Emergency Admissions Unit (EAU) unfortunately getting worse, and increasingly tired, but somewhat overlooked as the place was busy with too few staff and several poorly patients. The disadvantage of being somewhat used to severe breathing difficulties is that I am now able to keep relatively calm through it all, which may seem like a good thing, and is to a degree, except that it can give a false impression of how ill I actually am. The gentleman in the bed next to me was quite distressed with his own breathing problems through the night so the staff concentrated on him, which is good, except that it menat that my needs weren't observed until much later. By the morning it was clear that I was in quite a desperate situation and I ended up in ITU on BiPAP for 22 hours. W was with me a lot of the time, despite having work to go to and a huge essay to complete for the last of her graduate diploma. And she told me that when she was leaving ITU for work at one point the sister pulled her aside and said that although I was a doing a little better I still may not survive. This doesn't give me any information I didn't already know for myself, nor W, but when it's said it confirms the truth and is hard-hitting. I'd much rather know these things for sure though - be told the whole truth - so I respect their honesty, and I think W does too. It's hard though. It's always hard. Thankfully, I did make it through and eventually I made it to the respiratory ward, although my usual ward 29 at Freeman didn't immediately have any beds so I had to go to the RVI resp ward. I don't like it much there. Maybe it's partly because it's not where I'm used to and I don't know the staff, but the whole atmosphere feels frenetic and disorganised, and staff-centred to me. They don't know me. I don't know them. They don't know that I know my illness better than them and they seem to find it hard to accept the fact that I do. I was still pretty ill while I was there, and I was getting more stressed out by being there too, so it was a huge relief when I was eventually transferred to Ward 29.

It's very slow progress, and I've been in hospital for 2 weeks now. The breathing is eventually settling and I managed to get off the aminophylline infusion on Friday (at least I think it was Friday...). I've now be transferred back onto oral steroids from hydrocortisone injections and have stopped having to have the intravenous antihistamines as well. All that is good. I'm still on oxygen at the moment, but a fairly small amount now. I'm utterly exhausted though. My body definitely feels as though it's been poisoned and as though it's taking a long time for the toxins to be shot of. Actually, the main problem now is that I have absolutely horrendous water retention. As you know, I've had some difficulty with water retention in previous admissions, but this time it's the worst it's ever been. My skin is splitting because it's so stretched with fluid. The stretch itself is painful. Most of the fluid is around my middle and my hips - hugely gathered around my hips so that I must be almost double my usual size (no exaggeration). My body is so overloaded that my bladder and my kidneys keep going into horrendous spasm, producing pain like I've never had before. I'm now on some meds to help with the spasms, and they certainly help the intensity, though they can still be protracted and very painful indeed. I'm on fairly high doses of diruetics as well as I have so much water to shift and my body wasn't shifting any of its own accord, but still there doesn't seem to be any significant reduction. The nurses say they can see the water sloshing around inside me when I move! I can't fit into my pyjamas. I can only stand to have the hospital gown tied loosly around the top of my neck because any pressure at all on my skin hurts. I did manage just about to squeeze into the bath for the first time today, but it wasn't easy and it was painful. It's demoralising. It's painful. It's embarrassing. It's uncomfortable. It's miserable. Everything hurts. I'm so heavy with the extra fluid that my back hurts if I sit for long or stand for just a few minutes. The weight of the fluid around my middle and up my chest is pressing on my lungs and making breathing harder, and a few days ago an x-ray showed some fluid on my lungs because of the oedema, although this at least seems to be clearing.

I'm miserable. I feel like a beluga whale. I'm sore. I'm in pain. I'm exhausted. My mind is in a blur from the events of the past two weeks and the unexpectedness of the allergic reaction. I'm thankful and surprised to be alive, but I'm so worn out and so sick of hospital.

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.

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.

Pushing it

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

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

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

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

Officially potty

I went to my appointment with the prof at the falls and syncope clinic on Friday. She'd had a chance to look at my 24 hour ECG and accompanying 'events' diary from the previous week, and she confirmed the diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS). After reading the information about it on gpnotebook, where I first discovered it, I'm not surprised that POTS has been confirmed, and in fact I'd have been more surprised if the diagnosis had been something else, but I'm still not sure how I feel about it. It's good to have an answer. It's good to know the reason for what's been happening. It's good to be able to put all the pieces together. However, it's not a great diagnosis to have. POTS isn't curable, and given that I was to have something else wrong with me it would've been 'nice' if it had been something curable. At least there's hope that some of the symptoms can be treated and the prof has prescribed diltiazem to try to reduce my heart rate. She said that my heart is beating so fast at the moment that it's not working effectively, so my brain isn't getting enough blood or oxygen, which is why I'm passing out. Slowing my heart should stop the fainting. I'm hoping too that slowing my heart down to a more normal rate will mean that I might have a bit more energy again, because at the moment my body's in over-drive and I'm knacked a lot of the time. I forgot to ask how long the diltiazem would take to work, and at the moment I'm on what seems to be a relatively small dose of 120mg and my heart is still running at least around 130bpm when I'm standing. I've only taken three doses so far - Friday, Saturday and today - and I'm guessing it might take a few days or a week or so for it to kick in, but then one of my friends who's a doctor suggested that it should start to work fairly immediately so now I don't know - is the drug just not working or is it going to take a while to work?

One of the things that I was really worried about was that whatever is wrong with me was going to stop me from driving. My car is my ticket to freedom and independence, and because of my asthma it would be so life-limiting to have my driving licence revoked. This possibility wasn't something I'd initially thought of, but my mother suggested it and then at the beginning of last week she said that I may have to prepare myself for the doctor saying on Friday that I wouldn't be able to drive any more or for a period of time. It was worry about this that made me forget to ask about how long the diltiazem would take to work, and I really didn't want to ask the question about driving, but knew that I had to. Thankfully she said that I can still drive :o) I am so very, very relieved. She said that in relation to this there are a few precluding factors to driving: 1) if the dizziness I have is vertigo (it's not though - the world isn't spinning, it's the stuff inside my head that feels like it's spinning); 2) if I was fainting a lot sitting down; 3) if I didn't get any warning before fainting; or 4) if I didn't have time between warning and fainting to pull over to the side of the road. The prof said that she could see how terribly life-limiting it would be for me if I couldn't drive any more, and while of course she has to do what is right for the safety of everyone, it's a huge relief that she's said that I'm still okay to drive.

While I'm wondering how to get my head around the diagnosis of POTS it does bring together a whole variety of things for me. It seems that many of the apparently unconnected bits of me that don't work properly can probably be joined up by POTS, for instance it seems that many people with pots have a lot of common allergies, a lot of drug sensitivities and a lot of uncommon food allergies. I haven't written a great deal about my allergies here, but perhaps I'll tell you a little more about them in the near future. They're certainly complex, and I certainly have many uncommon anaphylactic food allergies as well as common allergies and allergies to meds.

Another thing that the POTS can account for is the thickening of the vitreous humour (particularly in my right eye) that has so far been accounted for by the long-term high-dose steroids I take for my asthma, even though this isn't a known side-effect of steroids. This thickening has caused the development of large black floaters in my vision that are annoying and sometimes get in the way when I'm reading. They're also a reported symptom in POTS.

Postural Orthostatic Tachycardia Syndrome is a neurological condition - a dysfunction of the autonomic nervous system (that's the part of the nervous system that controls the body's automatic functions). The digestive system is controlled by the autonomic nervous system, and the prof told me that the POTS is most likely accountable for the Irritable Bowel Syndrome that I've had for several years, and it may also explain some of the upper right abdo pain I get, although this has previously been put down to cholecystitis and ulcers caused by the prednisolone and theophylline that I take for my asthma. It could, I suppose, be a combination of all three things. Another thing that the autonomic nervous system controls is sweating, and for a long while there have been times when I've had excessive sweating. This is embarrassing and makes me very self-conscious when it happens, but apparently this too can be attributed to the POTS.

There are various other 'little' things that the POTS diagnosis pulls together (including the non-asthmatic chest-tightness I've been getting, and maybe even weight gain), and suddenly it all makes sense. How I come to have it though is perhaps something we'll never truly know the answer to. It seems there are various causes of POTS, including viral and bacterial infection (pneumonia is particularly mentioned) and Lyme Disease, which I had back in 1997 when on holiday in Canada (and I actually haven't been off the steroids for my asthma since a month or two after this). There's also the possibility that it could, in my case, be caused by some of my asthma medication, so there's uncertainty around whether my POTS is primary or secondary, and I'll probably never know for sure, but that doesn't really matter because it doesn't change what's happening or the effect of it on me. The only thing the cause of it could effect is the prognosis. While it's not curable, about 50% of people who develop it after a viral infection get some relief after two to five years, while others who develop it for some other reasons have a very poor prognosis with distinct possibility of deterioration over time. I guess I have not to get too hung up about this aspect of things though and just get on with it. The important thing now is to work out how to live alongside this new companion.

There's certainly no denying that I am now officially potty.

Saving my bacon

I was supposed to have my swine 'flu vaccination at the GP surgery on Tuesday. I went along to the appointment, the nurse went through the usual precautionary questions, and then we went through the ingredients of the vaccine and it turned out there was something in it I'm allergic to - a sulphate. She went through to speak to one of the doctors who said that in light of this, they couldn't give me the jab without my first speaking to my asthma consultant, especially as it transpires that a lot of people with multiple allergies are having adverse reactions to the injection. I came home, rang my consultant and left a message with his secretary, who phoned me back on Thursday saying that Dr H (my consultant) had weighed up the risks and decided that I should have the swine 'flu vaccine, but that they should give it to me in hospital, so I went up to the ward on Friday morning. It was a very strange experience waiting to be injected with something I knew I was allergic to - planned anaphylaxis ... very odd. I wondered if it was something similar to being on death row, although for very different reasons - ultimately to have my life saved, rather than certainly ended.

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Dr. H came to see me before the ward round, went through the risks (i.e. anaphylaxis and death!), got me to sign the consent form, and then had the F1 put a cannula in so that I could have IV chlorphenamine (Piriton) before being given the vaccine. This would hopefully stave off an allergic reaction, although it would also make me sleepy.

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J, the Charge Nurse, came with the IV and the jab, asked if I was ready, pumped me full of chlorphenamine, waited 5 minutes for it to whoosh around my body, then stabbed me in the arm with the potential killer jab. All we could do then was wait and see what happened, but at least I hadn't blown up into a Becky balloon and dropped dead immediately. After a while my lungs started to get tight and my sats dropped to 91%, but they were sorted with a couple of oxygen-driven nebulisers, and everything else was okay, thanks to the prophylactic chlorphenamine. I stayed on the ward until just gone 7pm to make sure all stayed okay (there can be a delay in the occurance of a reaction, and if there has been a reaction (which the lung-grumpiness was almost certainly due to) there can be a second wave reaction later), and then I was free to go home. It was a weird experience walking onto the ward in the morning as I'm usually gasping and struggling to breathe at all when I arrive on Ward 29, and it was even weirder to walk off the ward the same day ... a good experience though :o) And hopefully, I'll now be safe from getting swine 'flu :o) My bacon has been saved!

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The same cannot be said regarding the whole passing out thing, which is still going on. When I was discharged from hospital the week before last with this the doctor had said that I should get an appointment for the falls and syncope clinic for two weeks time, which would mean I ought to be seen next week. This being the case I was expecting an appointment letter sometime during last week, but nothing came so I phoned the clinic on Thursday to ask what was happening. When I explained what I'd been told about getting an appointment for two weeks time the receptionist laughed and said that there was at least a nine week waiting list. She then went on to tell me that the consultant hasn't even put the referral in yet! The swine! Not only has he not done what he said he would, but I was told porkies about the time-scale, so now goodness knows how long I'll have to wait. I'm going to call the consultant's secretary on Monday to ask when I can expect the referral to be sent, and perhaps say that I'm not impressed that it hasn't been sent all ready as it's really not good to be passing out practically everyday, and not safe either - I fainted while I was cooking the other day, and it could've been really bad if I'd fallen onto the hob ... although it may have speeded up the referral, I guess ...

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On a positive note, I have got an appointment for the 24-hour ECG, which may throw some light on what's going on, but only if it's something to do with my heart. Anyway, I go for that next Thursday morning, and then obviously have to go back on Friday morning, but I don't know when I'll get any results from it, or even who the results will be sent to as the referral to the falls and syncope clinic hasn't yet happened and I'd thought it was going to them. I might ask if it can be sent to my GP so that I can at least know it's going somewhere, and somewhere I can access them.

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Now then, keeping on the theme of pigs - having my bacon saved from swine 'flu, swines of doctors who don't do what they say they're going to, and flying pigs for getting appointments - I was sent an email the other day that made me laugh a lot. I thought I'd share it with you so read on for a giggle. Oh, and apparently it really was sent to David Milliband.

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Nigel Johnson-Hill

Park Farm

Milland

Liphook

GU30 7JT

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Rt Hon David Milliband MP
Secretary of State.
Department for Environment, Farming and Rural Affairs (DEFRA)
Nobel House
17 Smith Square
London
SW1P 3JR

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16th July 2009

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Dear Secretary of State,

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My friend, who is in farming at the moment, recently received a cheque for £3,000 from the Rural Payments Agency for not rearing pigs. I would now like to join the "not rearing pigs" business.

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In your opinion, what is the best kind of farm not to rear pigs on, and which is the best breed of pigs not to rear? I want to be sure I approach this endeavour in keeping with all government policies, as dictated by the EU under the Common Agricultural Policy.

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I would prefer not to rear bacon pigs, but if this is not the type you want not rearing, I will just as gladly not rear porkers. Are there any advantages in not rearing rare breeds such as Sadlebacks or Gloucester Old Spots, or are there too many people already not rearing these?

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As I see it, the hardest part of this programme will be keeping an accurate record of how many pigs I haven't reared. Are there any Government or Local Authority courses on this?

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My friend is very satisfied with this business. He has been rearing pigs for forty years or so, and the best he ever made on them was £1,422 in 1968. That is - until this year, when he received a cheque for not rearing any.

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If I get £3,000 for not rearing 50 pigs, will I get £6,000 for not rearing 100? I plan to operate on a small scale at first, holding myself down to about 4,000 pigs not raised, which will mean about £240,000 for the first year. As I become more expert in not rearing pigs, I plan to be more ambitious, perhaps increasing to, say, 40,000 pigs not reared in my second year, for which I should expect about £2.4 million from your department. Incidentally, I wonder if I would be eligible to receive tradeable carbon credits for all these pigs not producing harmful and polluting methane gases?

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Another point: these pigs that I plan not to rear will not eat 2,000 tonnes of cereals. I understand that you also pay farmers for not growing crops. Will I qualify for payments for not growing cereals to not feed the pigs I don't rear?

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I am also considering the "not milking cows" business, so please send any information you have on that too. Please could you also include the current DEFRA advice on set aside fields? Can this be done on an e-commerce basis with virtual fields (of which I seem to have several thousand hectares)?

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In view of the above you will realise that I will be totally unemployed, and will therefore qualify for unemployment benefits. I shall of course be voting for your party at the next general election.

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Yours faithfully,

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Nigel Johnson-Hill

As expected

It happened. I splatted. I just about lasted the Thursday, although I was going downhill significantly by the evening and knew that I’d end up in hospital by Friday. I think I mentioned that I had to go to my GP early on the Friday morning anyway for my blood results, the conclusion of which was that I’m anaemic and they didn’t know how to treat it because all the iron preparations they could find had something in that I’m allergic to. After we’d talked/gasped through the blood results the doc asked, ‘So how is the breathing?’ which really was a rhetorical question in the circumstances. My short answer was, ‘Rubbish. I’m going to hospital after this,’ and I’m sure that had I not told her I was going to hospital, going directly to hospital and not passing go, that she’d have called the ambulance there and then. She looked fairly reluctant to let me out of the surgery in the first place, but I just about managed to explain that I’d seen my consultant the previous day and we had a plan.

I got home and I got worse, probably precipitated by trying to walk and by having to make various phone calls to the hospital to get hold of my consultant. By this time my fantastic friend W had come over, ready to take me up to the Freeman as soon as we heard back from the consultant’s secretary to say that the ward had a bed for me, and within fifteen minutes of the call we were on the ward ... and I was going further downhill. I think that once I get to hospital sometimes my body kind of knows that it’s in a safe place to let go and I get worse ... it’s a bit weird really, but it’s happened on more than one occasion. So anyway, from then it was a long, hard battle, with the intensive care docs coming up to see me regularly and phoning the ward to check on me at other times. I really, really hate ITU so was relieved to struggle through without having to go there, but I know it was a close call. It took something like 22 hours for things to eventually settle to a more manageable state, and of course afterwards I was completely exhausted so I fell into my post-attack big sleep. My lungs still weren’t great, but they were a whole lot better than they had been on admission and I was able to sleep reasonably well, until I had a very rude awakening on the Sunday morning with my lungs having gone into tight spasm again and I was right back at the beginning. I had another 20 or so hours of battle and ITU coming up and phoning up regularly, and with being so exhausted from the previous struggle to breathe it all felt so much harder. Somewhat amazingly I got through it without having to be taken downstairs, but it was a close call again. It really is horrible. It’s a full day’s run at a sprint, unable to stop for any kind of rest, with no breath or energy to eat to keep you going, and barely able to drink because you’re putting everything you have into breathing quite unsuccessfully and timing the two things so that you don’t choke isn’t easy. Add to this the feeling that you’re trying to breathe through a tiny straw with a pillow stuffed in the end and you get a fraction of an idea of what it’s like.

I made it through. I survived. I fell back into that exhausted and exhausting big sleep and I stayed that way for three or four days, through lighter chest-tightness that the nurses recognised and treated as required, but I was too exhausted to wake up very much for. It’s a strange experience, though it’s not an alien experience for me.

Now I’m mending, with the aminophylline drip down and the oxygen reduced to two litres (I was on 60% so that’s a huge improvement). I’ve been out of bed a few times – the first time only for one exhausting hour, but the next day for four hours, and today I’ll push myself for a lot longer. I need to if I’m to get home, and I’m hoping for that around Tuesday, provided I can get off the oxygen easily enough. This is slightly complicated by the fact that my anaemia has got a significantly worse, with my haemoglobin (Hb) having gone down to 8, which means that my blood doesn’t have the same oxygen-carrying ability that it ought to. It’s also making me feel very light-headed, very tired and generally unwell. However, because my Hb is now so low the docs have had to find some way of treating it, and because there are significant risks with blood transfusions they were reluctant to go in that direction, so they got pharmacy onto the case. One of the pharmacists – Matthew – spent a large part of last Friday investigating iron preparations, including phoning all manufacturers of iron preps. He checked, he double checked, he triple checked and eventually he succeeded in finding one that he was 99.9% sure wouldn’t send me into anaphylaxis and kill me. He brought them to the ward, and the doc gave me my first dose, though he asked for a lesson in using my epi-pen first, which was quite amusing in that he very nearly stabbed himself in the thumb with the pen, despite my giving what I thought were clear instructions. Mind you, he is a bit of chocolate teapot doctor – he’d come in a couple of days previously saying, ‘You know, I don’t think ferrous sulphate has sulphate in it,’ sulphates being one of the things I’m dangerously allergic to. Now I might be wrong, but I’m fairly certain that chemists don’t just pull random names out of a hat when they produce drugs, and I’m guessing that the name ‘ferrous sulphate’ is something of a clue that it contains sulphate. So anyway, after the epi-pen lesson and near-incident I took the first dose of the iron preparation that Matthew had found and I didn’t immediately die – hurray! However, there’s a four hour period of danger between consuming an allergen and it causing an anaphylactic reaction so it was a rather anxious wait for all of us, so I had my epi-pens and call-bell to hand, and each time a nurse went past my room they asked how I was. Thankfully all went smoothly, I’m still alive with no adverse reaction and I’ve had several doses since. This is a huge relief, not only the lack of reaction, but also that the anaemia can now hopefully be sorted and I’ll begin to feel better in that respect soon, although it can take several weeks, even a couple of months, to get the full benefit. At least I might stop passing out/nearly passing out before long, and that would definitely be a good thing.

You know the irony of my admission on 30th October is that this was the date I was supposed to have been doing my sponsored gym marathon to raise money for the Ward 29 – the ward I’m in. I had always put the proviso in that I would only do it on that date if I was able to breathe well enough, which obviously I wasn’t, but I had really hoped that I’d be able to do it when planned. I’m still going to do it, and I’m now planning it for 25th November. I know this isn’t far off and I have to regain strength and fitness in a fairly short period, but I am determined to do this. Nothing I can do, and no amount of money I raise, will ever be a big enough thank you for all the ward does for me and for keeping me alive against the odds. The advantage of having to postpone the gym marathon is that it gives more time to gather more sponsorship, so if you haven’t already and you’d like to please sponsor me/donate through my Just Giving page

Taking action

After my latest bad attack I decided that I need to come up with a plan of action for future bad attacks that quickly spiral out of control and make my brain addled. I think I mentioned this before. I wrote a letter to my GP explaining how quickly I deteriorated this time and how rapidly I lost the ability to make sensible decisions (telling him the random things I'd put in my bag when I staggered to the surgery just before being admitted to hospital). I explained about some of the difficulties I've had in A&E and RVI in the past in terms of treatment and incredulity at some of my allergies, and anxieties about needing an advocate with me when I can't speak due to breathlessness. I explained how I know that 'can't breathe' should equal 'dial 999', but that in my state of hypoxia/hypercapnia I wasn't able to make this judgement and that the previous difficulties I've had in A&E etc fed into this inability to make sensible decisions. I asked if it'd be possible to think through this problem together, because whenever I try to think about it on my own I get in a tangled twist, which I is probably the stress of the attacks getting to me and I get into the same state of mind as when I'm in the attacks. However, I wasn't 100% sure that the doc would think this was within his remit, or if he might think I should be able to think about it on my own, so I was clear that I didn't want to take an appointment slot unnecessarily if he didn't think it appropriate, but that I would appreciate some feedback. I dropped the letter off at the surgery on Tuesday last week (the day after I got out of hospital) and received a reply through the post on Friday saying that he did think it would be appropriate to discuss these issues together, although he wasn't completely sure what the answer was as some of the difficulty seems to be my reluctance to go anywhere but ward 29 at Freeman, which of course isn't always possible. I had an appointment with the GP on Monday morning.

The appointment was incredibly useful, and I also think it was helpful to have written the letter and 'given' it to him in advance as it meant that he'd had a chance to think about it and discuss it with some of his colleagues too. It was useful too to have explained about the hypoxic/hypercapnic confusion, which he described as my 'being away with the fairies' ;oP and one of the ideas he suggested was coming up with some kind of repeatable mental challenge that friends can do with me (through text if necessary) to assess my level of 'away with fairies-ness'. There's one used by medics which involves repeated subtractions of seven from a hundred, and you have to get something like six or seven in a row right or you're deemed confused. Provisionally this test will do, but I'm trying to come up with something else as maths isn't my strong point at the best of times ;oP It's a starting point though and it might help. The point is that if I can't 'pass' the mental challenge - whatever it turns out to be - then the person doing it can take charge of the situation and make the decision for me to get help/call an ambulance.

The second thing the doc suggested was to see if the ward/hospital could supply me with a pulse oximeter so that I have a clear clinical marker too. The problem with this is that sometimes I can be hypercapnic yet still have acceptable oxygen levels (which is a bit odd, but then this is me ;oP ) so it may not be as useful as it first seems, and could potentially give a false sense of security. The other difficulty I wonder about is funding. Even the cheapest pulse oximeters are £200-300, and I know that the ward have had to fund buying most of the ones they have themselves, so I don't think it likely that they'd be able to supply me with one. However, my GP is going to write to my consultant - Dr H - so he may put the pulse oximeter suggestion to him in that.

The primary reason my GP is going to write to Dr H though is for something of huge potential use - arranging a meeting for me with one of the A&E consultants. Now I don't yet know if this meeting would be just by myself with the A&E doc or if Dr H or my GP would be there as well, but the purpose of the meeting would be to discuss past difficulties I've had in the department and how these have eroded some of my trust in some of the medics; to discuss my treatment protocol and get it put onto the computer system if possible; and to ensure that something similar happens regarding my allergies, highlighting that I can't have and should never be given magnesium sulphate (often given to people in A&E having a severe asthma attack). I expect it to take quite some time to organise this kind of meeting, but I think it has potential to be extremely useful and could help alleviate some of my anxieties. I made it clear both in my letter and in my GP appointment that all in A&E were fantastic this time, but all the same, because of some previous experiences, I never assume that it's always going to be this way, so I'm sure the meeting will be helpful when it happens.

I've mentioned before that I carry with me a laminated copy of a letter from Dr H addressed to any A&E doctor 'strongly suggesting' the course of treatment to take when I present with my asthma. I also carry a letter from Ward 29's Charge Nurse saying that I'm usually under their care and they're always happy to take me as soon as I don't need ITU/HDU care, but can they please be informed of my admission as soon as possible so that arrangements can get underway, especially as I'm MRSA positive so need a side room. Anyway, I'd mentioned both these letters in my own to the GP, not really realising that they weren't aware of them, and in my GP appointment he asked if he could see them. Not a problem at all, and he was impressed with them and their usefulness. He asked if they could take copies of them, and scan them into my records, not just because they're useful for them to have, but also so that they can print them off if ever they need to give them to paramedics etc. It wasn't something I'd thought of, but thought it a good idea.

We talked a little about my most recent attack and presentation at the surgery. I said how I was so away with the fairies that part of me was half expecting whichever doctor I saw to send me home. Dr R (GP) looked shocked, surprised and exclaimed, 'Really?! As soon as you phoned everyone scrambled into action and when you arrived we all jumped out of our seats!' He said that they know when I phone up/call in saying that I need to see a doctor that I'm not time-wasting or exaggerating, but one of the few patients who genuinely do need to see a doctor. They know that I don't and wouldn't abuse the system, and that whenever my name appears on any of their lists for the day it flags up. Actually, at this point in the conversation Dr R said that when my name appears on the list they get scared, and he threw his hands up with an expression of 'Oh no!' ;o) I'm not sure how great it is to have this effect on one's GP ... on all the GPs, nurses and receptionists in the GP practice ... LOL

All in all it was a very useful appointment, and I came away feeling very positive about it. It was good to be able to share a little more about what it's like actually being in the throes of an asthma attack and some of the fears that run alongside the event itself as well as anxieties about potential treatment errors in the emergency situation. Aside from the mental challenge (which I've yet to fully decide upon and then discuss with some friends who may be able to help do the 'assessment' in future attacks) nothing has been firmly put into place, but there is a plan and things are being thought about and implemented. It may very well be that I find myself in A&E again before the meeting with an A&E consultant is organised, but at least I know that things are in the pipeline, and I know too that my GP is now fully aware of my anxieties and previous difficulties. I also know that my GP is more aware of how confused and unable to make sensible and rational judgements I become, and how quickly this can occur.

There's very little I can do to help my health - nothing more than I already do, so far as I'm aware - so it feels good to have been pro-active in this instance. I knew I had to do something as my lack of judgement, and the influence of previous negative experience in A&E on decisions I made in my state of confusion, so nearly cost me my life this time.

Check up

Let me start with another apology for again neglecting my blog. For the most part I've been enjoying having a break from studies so busy doing fun stuff :o) I've also been getting the paperwork sorted for my holiday to France in 10 days time :oD I'm very excited and have all my medical stuff translated into French now, thanks to a rather wonderful OU peer who read my blog, lives in France and offered her services of translation for my paperwork and if I have any medical problems while I'm out there. She's a marvel.

So now for today's post.

A couple of weeks ago I was getting twinges of toothache so I made an appointment with the dentist, but the earliest I could get was yesterday and of course, as is the way with these things, almost as soon as I made the appointment the toothache disappeared. As it had been some time since I'd seen the dentist (about a year, because as it turned out there was something wrong with their appointment recall system and I hadn't received the last appointment they'd sent out) I kept yesterday's appointment for a check up. I explained to Mr V (the dentist) that I'd had toothache when I'd made the appointment and when he checked my teeth he said there were no cavities, but my teeth were very sensitive and there was some gum recession. He said I should use a sensodyne mouthwash, but I pointed out to him that I'm allergic to mint/menthol so can't use it and haven't found a mouthwash I can use, and also that I'm allergic to colourings and all the mouthwashes I've seen are not only minty, but are always a lurid pink, blue or green. Mr V seemed to find it difficult to get his head around this for a while, but eventually did and said to use warm, salty water instead of a mouthwash. Anyway, he said that all he needed to do was a scale and polish, but as my teeth are so sensitive I'd be writhing around in the chair with pain if he did them there and then, so advised me to use the salt water mouthwash this week and he'd put some fluoride varnish on my teeth that should help and mean that when he does the scale and polish next week the pain shouldn't be too bad. He smeared the pastey varnish on my teeth and sent me on my way. The pastey varnish, though, had a taste that I vaguely recognised but couldn't identify ... until I was going down the dental surgery stairs and my lips started to swell. It was banana. I didn't go back up to the surgery, instead opting to go back to the car and get home as soon as I could, but by the time I got back to the car my lips were really quite swollen, my tongue was fizzy and swelling, my throat was itchy, my eyes were itchy and, I was feeling a bit nauseous and my lungs were tightening. I took a double dose (as prescribed by the immunologist) of each of the antihistamines I'm prescribed for severe allergic reaction and used my nebuliser. I probably shouldn't have driven, but all I could think was that I needed to get home, so that's what I did, whereupon I continued on with the meds, sat with my Epi-Pens, phone, mobile and care alarm next to me and hoped that the antihistamines would kick in. I probably ought to have sought medical help, and I certainly don't advise taking the risk that I did, but I got lucky and things did begin to settle. Once I was well enough I thought I should probably call the dental surgery, tell them what had happened and find out the name and ingredients of the thing the dentist had smeared on my teeth. I spoke to the receptionist rather than Mr V, and she was very concerned, but also very helpful. It turned out the stuff was called Duraphat, and she asked me if I wanted to speak to Mr V. I didn't think there was an awful lot of point in talking to him as there was now little he could do, but a couple of minutes after I put the phone down Mr V rang me, sounding very worried and said that he wanted to see me straight away. The dental practice has two surgeries and he was doing his afternoon surgery at the practice so that's where I was to go, but seeing as I thought I probably shouldn't drive I wasn't sure how I was going to get there so Mr V offered to pay for a taxi. That's what I did. Between ending the call and arriving at the surgery Mr V had spoken to them at the dental hospital and they advised that I either see my GP or go to A & E. Personally I didn't think there was an awful lot of point in doing either of these things now as I was better than I had been, even though I still didn't feel 100%, but Mr V wasn't happy so I opted for phoning my GP to ask them for advice. Mr V gave me their phone and waited while I called. I spoke to Michelle - one of the GP receptionists I know well - and explained the situation. She said I'd need to speak to the on-call doctor, that they'd call me back, but she couldn't say when that would be, so I prepared myself for a long wait at the dental surgery. Mr V was going to have to go somewhere before too long, but wanted me to stay at the surgery so the other dentists there could keep an eye on me while we waited for the GP to call back. He spoke to the first of the other dentists, explaining what had happened, who was as surprised as Mr V at the reaction I'd had (Mr V said he'd never heard of an allergic reaction to Duraphat, and hadn't known about bananas containing benzoates, but that that explained my reaction) and asked him to keep a close eye on me. He then went into the second of the other dentists and did the explanation thing, but came out saying that this other dentist's patient was a nurse and she'd said that I should go to A & E, and that I should go soon because otherwise the queues would start to build up. Mr V seemed very relieved to have this second opinion that I ought to be seen by a doctor and it was decided that that's what would happen. Again he offered to pay for a taxi for me to get to A&E, but first I had to call my GP surgery to tell them what was happening and that I now wouldn't need them to call me back. Michelle asked if the dentist was getting me an ambulance and when I told her that no, I was getting a taxi she said, 'A taxi. That's an interesting approach ... well, you know where we are if need us.'

I have to say that I felt like a bit of a twit arriving at A&E displaying few symptoms of severe allergic reaction by now, but saying how things had been earlier, but they were okay (although saying that I probably should have gone earlier) and I was seen fairly quickly. The doctor was rather patronising and obviously hadn't read the copious notes they have on me from my multiple admissions for my asthma. He questioned my 'possession' of so many different antihistamines, until I explained that they were prescribed by the immunologist; he questioned how I had access to a nebuliser (!) so I then had to explain about my asthma; he questioned my allergy to mint (I keep a list of all my meds and allergies and I'd given him this list) simply because he hadn't heard of it before. Anyway, after examining me he said that mostly I was okay, but I was tachycardic, breathing a little quickly and my peak flow was a bit low at 165, so he prescribed more nebulisers and said they'd keep me there for a while to make sure that I didn't have a second wave (biphasic reaction). After a couple of hours or so a different, much less patronising doctor came to see me, saying that the first one had now gone off shift but had handed me over. He redid my peak flow, which had picked up to 250 and he felt I was probably okay to go home, but because of my history (he'd looked at my notes) he didn't want me to feel like I was being pushed out before I was ready and he'd be happy to keep me in overnight if I felt like I needed to be. I didn't think I needed that and I felt lots better, though very tired by now. The doc checked that I had an Epi-Pen, was a little worried that I live alone, but reassured that I have the community care alarm. He gave me strict instructions to keep that beside me, the Epi-Pen beside me, all my other meds beside me and the phone beside me all evening/night, and if there was any deterioration at all then I was to 'dial the 9s' immediately.

I have now had the very weird, but very good experience of walking out of A&E! I don't know when the last time that happened was. In fact it was such an exciting experience for me that I had to take a photo of the exit/entrance as proof of it. Here's the photo:

Today I'm okay, but still very tired and still have that post-poisoned feeling so I've done very, very little, which is rather boring and very frustrating.

Even though things turned out okay in the end, yesterday really wasn't the day I'd had planned.