Holiday time (part 2)

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

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

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

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

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

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

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

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

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

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

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

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

Holiday time (part one)

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

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

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

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

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

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

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

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

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

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

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

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

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

A comment or two

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I am

It's such a long time since I've blogged - too long.  Part of the reason is that when I was in hospital I didn't have my computer and found it such hard work typing out my posts with one finger on my phone.  I also had an awful lot going on, and needed a bit of space to deal with some of it ... not that I've really managed that.  However, I am now out of hospital after a five week admission and have been on holiday.

Very briefly, I had great holiday with a good balance of doing fun and interesting things and taking things gently.  I went first for three nights in Stratford-upon-Avon, then for a week in west Dorset, and finally for three nights in Derbyshire (actually it was Staffordshire, but close to the Derbyshire border and with a Derby post-code).  I'll post more about my holiday next time, but there's something else I want to talk about now.

So what I want to talk about is something that was said to me while I was in hospital.  It was said by someone who I had had some difficulties with for a few months, but whom I'd previously considered a friend, and it was said during my last hospital admission at the time when I was on the respiratory ward, but had slipped back, was having to fight hard, and was back on BiPAP.

The basic situation was that I went on to Facebook (via my phone) when I was on the respiratory ward after not having been on at all while I was in ITU and HDU.  I went in to a group of which I had been a part for a number of years and was asked by a couple of members how I was and what had happened.  I said a little of what had happened, how things had been, and that I was struggling again.  One member of the group then asked me more about what had happened so I expanded on what I had already said.  Another member of the group - the one with whom I'd had previous difficulties - suddenly exploded at me.  She said a lot of things, both in the group and in private messaging, but the most hateful and despicable thing was when she said, 'You're life is too different from mine or anyone's here to comprehend living.  You should stop trying to live.  Your existence is offensive.'  As admin of the group, she then expelled me.

I'm not repeating this here to vilify her or to gain sympathy, but rather to explore some of the issues it raises for me.

At the time this was said I had been off all antidepressants for a week.  They'd been suddenly stopped in ITU in case they had played a part in my low calcium levels and the terrible loss of muscle/neuro control.  This is not how antidepressants should be stopped in usual circumstances.  The combined consequence of this and my physical situation/illness was that I was extremely emotionally unstable and feeling very depressed.  I was also finding it unbelievably difficult to comprehend everything that had happened in the previous nine days.  I didn't think I could get through the second wave of physical fight that had hit me, and I was questioning whether or not I actually wanted to survive because to do so meant only to have to face the same situation again some time in the future.  With what was said, I was then hit with the thought that I had no right to live.  Someone I had previous trusted had declared my life unworthy, and I couldn't help but think that maybe they were right.  Maybe I shouldn't be alive.  Maybe she was right and my existence is offensive to those who live 'normal' lives.

Maybe all of us who struggle to stay alive actually have no right to life.  After all, in previous times there wouldn't have been the medical science to keep us alive.  Perhaps, according to the rules of natural selection, we should die out and let the healthy people get on with developing a super race.

I began to believe this.

I began to believe that I ought to give up trying to breathe, that I should take off the BiPAP and give in to the suffocation.

The doctors kept checking on, not knowing what had been said, what I was thinking, how I was feeling.  They kept looking worried, and the ITU Outreach team and anaesthetists kept coming to see me.  I kept doubting that I had a right to life.

But what about others I know, friends around the country with the same condition as me.  If I didn't have the right to life then neither did they ... but that's not what I believed for them.  Whether or not I should be alive, the life I have had has been made richer by my friends, including those who have regular severe asthma attacks and those with other life-threatening/life-limiting conditions.  They may not now be able to contribute to the country's economy - like myself - but they are still valid individuals, and they still positively contribute to the lives of others.  I don't often feel as though this is true for me, but I try to challenge it by looking at the evidence - the fact that I have friends.  They aren't my friends out of sympathy (that is not friendship), but I guess because I must give them something they value...

The question of the right to life goes on: where do you draw the line?  I mean, at what point is one's life considered unworthy?  Is it based on how much you cost the health service?  Or the amount of medication you need to take?  Or the number of days per year you are unable to work?  Is it based on how much of a challenge your illness/disability is to others?  If so, then who are those others - officials, medics, politicians, a public poll?  What about if you weren't born disabled/unworthy of life, but became so later on?  Should those people be 'involuntarily euthanased'?  If so, then when does that become murder?  Or does murder only apply to healthy, worthy people?

My life challenges me, so I'm not surprised that it challenges others too, but I didn't ever think that it would be considered offensive.  Obviously it does offend some ... well, it's certainly offensive to at least one.  What can I do?

For now I have made my decision: I will continue to offend that individual by continuing to exist.

I cannot apologise for my existence.  I cannot apologise for the way my ill-health challenges that individual and anyone else it has such an effect upon.  That challenge is their response, their feelings, and therefore their responsibility.  That's not to say that I'm not hurt by the belief that I have no right to life - I am, I'm deeply hurt, and I'm hurt by the timing of this being said to me - but I won't let the cruelty of one person kill me.  For now, even while I continue to have doubts about my worthiness, I will keep existing for those who outnumber that cruel individual - for my family and friends who, for whatever reason, want me to be alive.

Stability

Eight days after entering ITU I was recovered enough and stable enough to be moved to a ward, my usual ward at Freeman Hospital. I'd managed to wean down the BiPAP a fair bit, although I did still need it at night and for some periods in the day. I still had some abdominal pain, despite the appendicitis having been treated, and the surgeons were still wanting to do an investigative laparoscopy because scans had come back clear. They were still 'discussing' this option as I left the unit and their hospital, but I'm thankful to say that the medical doctors weren't going to risk putting me under an anaesthetic for anything at that time.

The ambulance trip between the hospitals was very uncomfortable, mostly because by this time I was terribly water-logged due to the right-sided heart failure. I'd been on a fluid balance chart (measuring how much fluid I take in and how much I pee out), so we knew that during each day of my admission I'd retained between 500 - 750 ml fluid. That's a lot! After 8 days that's somewhere around 6 litres! It felt like it. My torso, thighs, hips, and waste were incredibly swollen, even my arms were pudding-like. In fact the only part of my that wasn't blown up like a baloon was the lower half of my legs that had surgical stockings squeezing the fluid upwards. My skin was stretched to splitting point, and it felt as though it would tear if I moved and caught it on the bed sheet, so bumping around in the back if an ambulance was truly excrutiating, let alone with the additional mystery abdominal pain.

We arrived on the ward at long last, and I shuffled my pained, exhausted, and weary self into the bed. Not quite as delectably comfortable as the moving airbed mattress I'd had in ITU, but comfy enough, and more importantly I was with my usual care team - almost my friends; almost my second family.

I couldn't sleep. I've had a huge amount of stress recently, and the trauma of all that had immediately prior to, and during, the admission so far was filling my mind. But eventually I dozed, though only for three-quarters of an hour,  when I woke once again unable to breathe. I had nebs, and more nebs, and the doctor was called. She did blood gases, which weren't utterly dreadful, but they were far from good, so the BiPAP pressures were increased again, having only just begun to drop them a smidgeon earlier in the day. I wasn't quite back to square one, but I wasn't that far from it either, with my potassium levels destabilising again and my infection markers rising. I was back on BiPAP full time, unsure again if I was going to survive. I didn't know if I had the physical energy or mental strength to get through, to live, and part of me was questioning the futility of it - why fight to survive this when it will only strike again in the future if I do. Part of me did give up, maybe even died. My only option was to ask my friends to pray, and leave It for God to decide. I don't know why God makes the decisions He does, or how He got me through it, be He did in the end, and I'm still in the world. It's more than I expected.

Nearly four weeks since I was admitted and I'm still in hospital. Although the Freeman ITU Outreach Team were assessing me several times a day,  everyday, for about a week after my transfer, I've managed to stay on my usual ward, the only change being that soon after I arrived I was moved to a room right next to the nurses' station where they could more easily keep a very close eye on me. I've been off BiPAP now, after a slow wean, for a week I think, but then there was the reduction in aminophylline to get through, and with the fluid retention and heart failure, this was becoming a pressing concern. We know from experience that I have to do a very slow wean off the aminophylline or my lungs go off again and I'm back at the beginning. We had to take a risk this time, and although it was still slow in comparison to most, we had to go more quickly than we usually would. The sooner they could stop any extra fluids the better for my heart,  which still isn't it great shape. I'm told it could take some months for my heart to recover, even if/when the fluid reduces, and that this time is somewhat dependent on how well behaved or otherwise my lungs are during that period. Certainly this time I've been knocked well of course,  though that's not surprising given the complexity of the admission and the many complications along the way. I am incredibly weak, can barely walk at all, although last night I did begin to insist that I have help to walk through to the en suite toilet instead of using a commode. Regaining toilet rights is always a big step along the road to recovery, physically and emotionally. Everyday I have a short session with the physios, with one of them supporting me and the other following behind with a chair for when I'm about to pass out with the effort. I don't feel like I'm making much progress, if I'm honest, and I get really frustrated, but the physio tries to be encouraging and she keeps reminding me how poorly I've been. Part of my reclaiming of toilet rights is self-imposed physio, because I know that while it's really hard work and I'm pushing myself hard, it's only by doing the work that I'm going to get stronger.

The mystery of the abdominal pain in addition to that from the appendicitis still hasn't been solved. It's still very much there, being painful at a score of 5 or 6 out of 10, despite copious pain killers. There was a snuffle of excitement when I contracted another UTI because they thought that could be the cause, but the antibiotics did their thing, the infection was cleared, and the pain has remained. At the end of last week the consult suddenly decided that I should have an xray of my spine to check that I haven't developed a crushed vertebrae from the long-term high-dose steroids. He thought the pain could be referred to my abdomen by nerves, but the xray has shown that this is unlikely,  because while it does show some wear and tear of my spine, they've decided it's not yet signigicant or something to worry about (though personally, it doesn't fill me with joy to know my spine is worn and torn). Next up, I'm told, is the gynaecologist,  not that they have any specific concerns they want investigating,  but rather just to cover all bases. I've almost given up on finding an answer, and I'm very much feeling like a lab rat undergoing test after test after test. The consultant says he tries to he reassured by the clear scans and xrays, etc, but actually he is a bit concerned. He wants, if possible,  and for as long as possible, to 'keep things non-invasive', but says that it might in end up with investigative surgery. Maybe I'll see if it settles itself. Maybe I've had enough of being prodded and poked and tested and scanned. Yes, I most definitely want to be pain-free, but there aren't any guarantees that investigative surgery would find anything or fix anything, so then what?

Now I'm tired - physically drained and emotionally exhausted. I have a lot of pressing on-going matters and situations to deal with, and then there's the fall-out from having been so poorly for so long and with so many aspects to it. I was struggling with depression before this admission began, as you know, and the unexpected and atypical nature of it has compounded that. What I really want now is to get well enough to go home; cuddle the cat who I'm missing dreadfully; perhaps take the cat with me for a few days at my mum's; and go on holiday as planned at the end of the month. I want to recuperate, regenerate,  spend time with friends and family. I said to my psychologist on the phone the other day that I feel like I've lost myself somewhere - with all that's happened and still happening, I've left myself behind and I don't know where. I'd like to find where I am, go meet myself, and bring myself back to somewhere familiar. Good familiar. I can't do that while I'm still on hospital, so I need to get home as soon as is realistically possible, but as yet I still don't have a date for discharge.

Heart of the matter

I'd dozed. It hadn't felt like long, but on waking I couldn't breathe. My lungs had clamped shut. I rang the nurse call bell, she came, I gasped my need for a nebuliser, she said okay, and she left the room. I waited. I gasped. I waited. I rang the bell again. Still nothing. I could feel myself suffocating, and I knew that the staff here didn't know quite how quickly and dramatically my lungs could seize up. The bell rang on, and the nurses passed by the room busily trying to see to each of their patients, not deliberately ignoring me, but not having time to see that i was getting into trouble. I banged something on the table. I can't remember what, perhaps it was a spoon or a cup. It didn't matter, I just needed to make a noise, attract their attention, be given a nebuliser. She came again, surprised that I was gasping so hard after seemingly such a short period of time. I had a nebuliser, and then another, and I felt whoozy, and drifty, and drunk, and unwell.

Another nurse, concern splashed all over her face, trotting this way and that to get meds, get masks, get medics.

Time didn't exist. I have no idea how long this was happening, and I hardly felt like I existed, let alone the abstract of time.

Then doctors, several doctors, and a Sister from the ITU Outreach Team.
'Am I really that ill already?' I think, and close my eyes for a rest. I'd like them all to go away, let me sleep, nestle into the fog in my brain. The doctor wanted to do my blood gasses, and the Sister kept telling me to open my eyes, so I handed over my wrist and let myself be stabbed, too tired to feel any pain.

'She's well known to ITU,' says the Outreach Sister.  'Very severe and often brittle asthma.'

Please, just let me rest. You're all very noisy, I hurt, and I'm sick of being prodded and poked. But as I turn to my right to try to ease some of the pain in my tummy, the doctor leans over from my left and tells me my blood gasses are back and they're not good.

'What are they?' I gasp,
'7.5'
'No, my pCO2,' I correct,  thinking that he's telling me an alkaline pH.
'Yes, your pCO2 is 7.5. Your pH is 7.2.' Worry hangs around his words.
The information seeps in, nuzzling it's way through the brain fog, until it bumps into a small area of consciousness. 'Oh...' Oh, indeed. They are not good numbers. 7.5? My pCO2 is 7.5?! That's a bit of a worry. But I think it rather too rationally, and it's almost as though it's happening to a different me, a not-me.

And we're off! Someone is worried that I'm going to die. Suddenly I am too. I watch the corridors skid around me, hear voices running behind, and feet tapping quickly on the lino beside me. Places I recognise slip by and beyond, we take the lift to level three, they roll me through the empty third floor corridors in haste, following signs for 'Burns Unit','Theatres', 'Intensive Care Units.' A scoot to the left, through the controlled double doors with the swipe of a card, twisted around the bends in the vestibule, arriving in the unit, lain flat, slid on to the most comfortable bed in the world that moves underneath me and massages my tired and pained body. I cry. I am afraid. I don't want this, didn't expect this. I came here with a sore tummy, not my asthma. I should be able to breathe. What's happening?

The mask is strapped to my face, forever blowing air into me, keeping me breathing, bursting the bridge of my nose because it's a little too tight. The doctor takes my left wrist, tapes my hand to the bed frame with it resting over a bag of 0.9% saline, and guides a long wire into and up the artery in my wrist. It is secured in place, bloods are taken from the line, and my hand is released from the captivity of the bed frame, but the wire is left inside to perpetually measure my blood pressure. My readings blink in red and green and yellow on the screen above my bed.

At the same time, someone else has been fumbling with my other hand,  and arm, and foot, and at last they've managed to get another needle into a vein. I am hooked up to fluids and antibiotics, and my portacath is recharged with another infusion of aminophylline. I ask if I'm turning into a machine, which is how it feels with all these wires and lines and lights and bleeps. Someone chuckles a soft no, and a reminder that I'm ITU. Oh yes, I remember now.

Prods and pokes, and, 'Does this still hurt?' I scream out, 'Yes!' and try to move his hand away from my tummy, but he presses again just to make sure. I yelp, he stops, he apologises, and all too soon he and others will be back to do the same again. Appendicitis, that's what they say. They can't operate because 'she won't survive the anaesthetic with lungs like this.' The surgeons insist, the medical doctors deny them access. The surgeons tell me there's no research for survival of appendicitis treated solely with antibiotics - surgery always follows. The medical doctors tell me they have prescribed multiple antibiotics and hope. I pray.

And then I begin to quiver. A kind of shiver, but I'm not cold. I shake as if in fear, and I am afraid, but it doesn't account for this movement. It gets worse. It takes over my body. I squirm, and wriggle, and shake, and I can see, but I  can't make sense of what I can see. My arms wave, my legs jump, my torso twists and writhes, and I cannot stop. The world is static, two dimensional, like a drawing on cardboard. I move my eyes and the image swivels, but it doesn't really change until I blink,  and then I get the next two-dimensional cardboard drawing that doesn't really look like the world. I feel myself being held on the bed, writhing under the grip of multiple hands and bodies. Alarms chime, voices utter words that make no sense, my eyes find those of the consultant in front of me. He speaks clearly, I see his words leave his mouth, and I see his compassion when I tell him I'm scared.
'What's happening? Make it stop,' I plead.
'We will,' he reassures me, then turns to his junior and asks, 'What do we know?'
He perches on the end of the long bench at the nurses' station, which suddenly feels to me like it's in the wrong place. My world is spinning, and twisting, and jerking, and disorienting me while my uncontrollable body tries to fling itself from the bed.

They look to me, study my scans, read my notes, check my blood results, over and over. The consultant has become a detective sifting through evidence, piecing together tge crime that he is witnessing my body inflict on itself.

'Calcium! Her calcium is low, too low. Her potassium and sodium too. This is heart failure with tetany.'

The juniors look unsure, the nurse I think is afraid, and I am filled with terror, not because of the words that are being spoken, but purely because of the physical experience. I am hot, exhausted, can't breathe, desperate to rest, unable really to comprehend the sight of the world around me, and I have no control over my body at all. It insists on flailing around the bed, like someone with a severe brain injury. 'Make it stop. Help me, please! I'm scared.'

The consultant stands at the end of the bed, his junior comes to be by my side. One of the hands that is holding me in place shifts their grasp to take my hand, and keeps it as steady as possible while the junior doctor injects calcium into the needle in my knuckle. My hand stings, my thumb goes warm, and a great heat swells in the middle of my body. It spreads like liquid fire through my insides, up into my chest, across my ribs, and fills me up. The twisting, jerking, writhing spasms ease to become twitches and flutters. The world starts to redevelop it's third dimension, and those around me look more human. I know now what I am seeing, where I am, and feel released from the grip of a deep and physical fear. A few final flicks and I'm free. My calcium stores have been replenished, whilst my potassium and sodium levels are being restored with intravenous infusions. My heart is still failing, and it will for a while, but they are already hopeful that it can be reversed.

I am exhausted. My body has assaulted itself, beaten itself to a pulp, and my mind is battered. I'm in shock. I cannot take in all that has happened since I went to my GP with a pain in my tummy. But I don't have time to rest and consider because I still cannot breathe, I am still in pain, and I still need to concentrate to stay alive. And as I lie in the bed gasping for breath, with the BiPAP mask permanently strapped tight to my face, my body begins to swell with fluid that my heart is unable to pump around my body. I grow. I almost feel myself expand day by day, and as I grow my skin stretches, tightens, prepares to split open with the tension, and it hurts. The weight of the fluid building up around my waist, my hips, my tummy, my chest is heavy and makes breathing even more difficult. I am drowning in myself, I think I will probably die, I hate that I am alone amongst a crowd of strangers, and I shuffle myself away to a corner of my mind that thinks about tummies and asthma and breathing, but doesn't think too much about dying in isolation.

I close my eyes, and try to comprehend all that has happened. I think of the cat and wish he were curled up on the bed with me here. Behind the confines of the BiPAP mask, I clear a space in my head and create an open, green space of calm in which to be alone - an escape from the strangers around me, the machines punctiring the air with perpetual alarms, and the extreme presence of Death lurking in the folds of my bed sheets.

A long time

Again, again, it's another long time since I last posted, but this time it's because I'm in hospital.

I've had some horrid tummy pain for a few weeks now, which suddenly got much worse in the afternoon of 11th July. I tried to call my GP surgery to see if there was any chance of an appointment, but their phone line was down for some reason, so I trundled along on the off-chance that I might be able to see a doctor. The receptionist asked if it was an emergency, and although I wasn't altogether sure, I said that it probably was. I was told to take a seat and that I'd be seen after the booked appointments - what I expected.

While I waited the pain was getting worse and I was feeling more unwell so that by the time I saw the doctor an hour later I felt really quite rubbish. He examined me carefully but it didn't take huge observation skills to see that I was in a lot of pain, which Dr Cn said concerned him because, he said, 'I know you're no wimp.'

The doctor wasn't all together sure what the problem was, but suspected appendicitis with some symptoms being masked by my regular high dose steroids. He called an ambulance, requesting it be blue light, but somewhere along the way the message got confused and the ambulance took over an hour to get to me, by which time the surgery was meant to have been long closed.

When the ambulance arrived they got me on board and then ambled along to the hospital Emergency Admissions Unit (EAU), as the doctor had arranged. I was taken straight to a bed in one of the bays and then waited. And waited. And was refused pain killers because I hadn't seen a doctor so hadn't had any prescribed. And I waited,  and the nurses kept phoning the surgical docs to come to assess me and my ever worsening pain, and they kept not coming and I waited. I thought it would have been quicker to have gone along the corridor to A&E, and I still suspect it would have been because I waited four and a half hours before the surgical junior got to see me. Mind you, once she did at last get to me she stepped right up to the mark and I was quickly seen by her seniors several times. They were certain I had appendicitis and I was fairly quickly taken to a surgical ward, stopping on the way at CT for a scan.

Apparently they usually use an IV contrast dye to help show everything up on a CT scan, but they hadn't on this occasion because they were afraid I might be allergic to it. Unfortunately it meant that the scan was inconclusive and I'd have to wait until the following morning to see the consultant before any surgical decisions would be made. In the meantime I was prescribed IV antibiotics and a fentanyl PCA (Patient Controlled Analgesia). At last, some pain relief.

It was a long night with barely any rest, but the staff were nice enough and keen to keep me stable at the very least, so they checked on me regularly and told me to let them know if I needed anything.

Come the morning and I was exhausted,  having slept very little,  and quite frankly, the possibility of an enforced sleep during surgery,  as the consultant explained his plan to be, wasn't an entirely unwelcome prospect. It looked as though I would have an ultrasound scan and then have an investigative laparoscopy, with a probable appendectomy. I would spend a couple of days in ITU, probably on a ventilator, to make sure that my lungs were stable, then return to the surgical ward for a few days before being allowed home.

So there was a plan, and although I didn't relish the prospect of surgery, at least it would fix the problem. I relaxed a little. I fell asleep a while. I woke up, and I couldn't breathe.