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

Today is the tomorrow that you worried about yesterday.

Saturday, 21 September 2013

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out that all comments on my blog are moderated and that aggressive, bullying, trolling, and negative comments will not be published.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.

Sunday, 15 September 2013

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.