Tuesday, 16 August 2011

Familiar places...

So, it's now wednesday and I am still back in hospital.  Which isn't too bad in itself, but they've run out of cheesecake!!  And the offer of a jam sandwich instead did not nearly cut the cloth, my friend, hahahaha....

I am a little fed up, to say the least.  I tried raising the issue of my feelings on them breaking my confidentiality with my husband, and talking to him first about the results of MY tests.  As far as I am concerned, if it's about me, then I want to hear it first.  I have a right to hear it first.  I do not wish to hear it filtered through my husbands non comprehending brain first!!!  That's like a game of Whispers set to advanced level, trying to decode a message from him.

Well, other than that little drama, I'm going through the same old routine, day in, day out.  Drugs at 6, 12, 6 and , ahem, 12pm.  Meals whenever they remember I'm here.  And that's it.  Oh, and I have had this banging headache for absolute days, which I think is related to the huge swelling on my neck pushing on nerves that run through my throat.

I had a couple of pieces of good news yesterday.  Apparently, I have been awarded a tax rebate, lol, of nthe grand sum of 41 pounds, and I get an 11p repayment bonus, whatever that may be.  I'm not complaining; as far as I see it, 41 quid is 41 quid, and I shall have fun spending it, 11p and all.  And then about an hour after reading about that, I got a phone call to say my new glasses were ready.  Hooray!!!  I haven't had new glasses for some years now, so I really hope these ones are okay.  I can't even remember what they looked like, so again, I hope I didn't make my usualy poor choice,

I've been keeping up to date on my usual health blogs, which offer me some interesting ways of dealing with illness.  To be honest, we're all in the same boat, as far as I'm concerned, but there is sometimes almost a competitiveness about what people say, a kind of 'mine's bigger than yours!' attitude.  I guess that people need to feel they are the sickest person in England sometimes, it's something the American's call terminal uniqueness.  It works like this 'what makes my illness worse than everybody elses?'...the answer is, of course, because 'It's mine!!'.  If it helps folks to cope, then who are we to criticise?  I will admit that when I was sat in the urgent referrals clinic the other day, and they were skipping people who needed to have their earwax syringed ahead of me, the snotty mess who was haemorraging blood and struggling to breathe, I did wonder a lot about people and their priorities.

I think we've all had moments like that!  I was in the pharmacy the other day, trying to get them to look harder to find my prescription for oxycodone which they claimed to have 'lost'.  They had my medication, all labelled up and ready to be dispensed.  They just couldn't dispense it, as they'd lost the prescription.  Anyway, I waited almost patiently, but certainly quite determinedly for over an hour.  I was in terrible pain and leaving without my pain relief was not an option.  And I watched many people come and go, one of whom was a twenty something woman who looked rather clammy and unwell.  The assistant told her there would be a long wait, but offered her a seat in their office to wait it out.  Just as they found my prescription, and were finally dispensing it, the young lady joined the queue in her rightful place, which was next; behind me.  A woman who must have been in her fifties then started yelling 'Oi, oi, 'you'....  I'm next, not her!!'.  And I turned around very slowly and said 'who are you referring to?  'Her me', or 'her, her?'...because it better not be me!!'.  And she started yelling 'well who do you think you are?'  And I replied 'I am the woman who has been waiting here for an hour and a half.  And 'her her', behind me, has been here almost as long.  She is next in the queue, not you'.  And instead of saying 'oh, sorry, I didn't realise', she then started ranting about how her daughter in law had just got back from holiday that morning and was complaining of a headache.  I said 'hangovers aren't usually classed as medical emergencies.  If it's that urgent, you need an ambulance, but if it isn't that serious, wait your turn'.  And she looked me up and down as if to try and decide whether she could take me on or not, and I just walked directly at her, forcing her to firstly get out of my way, and secondly, to distract her long enough so that the assistant could serve the poor patient young woman who was rightfully next anyway.

People make the mistake of thinking I am mentally weak because of my illnesses.  They get a nasty shock when they realise I am not.  Be the best person you can be despite your illnesses.  Don't let anyone push you around.  People take advantage of weakness, but as far as I am concerned, my illness makes me stronger, not weaker.  And that's why they never will win.

Have a lovely day folks, speak soon X

Monday, 15 August 2011

Lost in the system...

Hey guys,

Just wanted to say hi, and let you know that I haven't forgotten you.  I had my surgery which went pretty well, if you ignore the mild psychotic episode that I had immediately afterwards, which is another long and painful story.  I went home, as you do, and rested up.  But instead of getting better, I began to feel a lot worse.  So now I'm back in that same old bed, in the same old room, in the same old hospital, having whatever bug I've got nuked with the strongest antibiotics they can find.  It's the first time in my life that I've been glad of the constipation caused by the Oxycodone, lol, things could be messy otherwise!!

So, not much to report.  Lots of peace, quiet, rest and relaxation.  And cheesecake; there is always cheesecake.  I'm fed up to the eyeballs, ha, so things are moving pretty slowly, but when I start to feel better, the mood will improve.

Best wishes to you all for now, and look after yourself.  Eat more cheesecake, and all will be well.

Sunday, 7 August 2011

Throat slashing...

hey there!

off to my famous little bed in my famous little hospital in famous little London to have my not so famous little stent changed.  keep your fingers crossed for me that all will go well,

take care and a bientot!

Friday, 5 August 2011

It's just a purrfect day...

isn't the weather lovely and hot today?  unusual for sunny London, which is normally known for it's gloom and smog.  It's great weather for the soul, but not particularly good weather for the breathing.  It makes the air dry and dusty, and when your airway is damaged and you can't moisten the air in the natural way anyway, this makes for potentially huge problems.  I suffered badly over the past couple of years, and experienced some major obstructions and episodes of tracheitis in the summer.  It was complicated by my lung problems, which cause an overproduction of mucuous, and when you combine an overproduction of mucous with an inability to moisten lung secretions, what you get are big crusty formations of mucous clinging to, and blocking off, parts of (and occasionally all of) the stent.  The problem was equally bad when I had the tracheostomies, but at least then I could remove the inner tube and clean it out.

I had a T tube once that was a little too narrow, in about 2004, and basically it was a very hot day, my mucous was very thick and dry.  And then came the moment when I coughed and the tube blocked completely.  Luckily, I was in hospital at the time and they managed to save my life, but only by pulling out the tube after I had ceased to breathe, and my hard had stopped beating.

I guess what I'm trying to say is this; remember to nebulise; it might just save your life.  Remember to drink at least two to three litres of water a day.  And take all your medication as required.  I almost died from problems caused by dry mucous, and I did everything I was supposed to.  So increase your chances of survival and please please please look after yourself.  Hot weather is a killer to people with airway disorders/diseases, so keep a very close eye on yourself.

Have a lovely day, but if you feel your breathing getting tight or difficult; go straight to hospital.


Wednesday, 3 August 2011

Throat slashing

greetings peoples,

so, monday is the day i have my stent changed.  i personally think they just like practising on me, he he....  it's annoying sometimes that i have to go for these ops, espec\ially when there are other things i'd rather be doing.  it's inconvenient, is my point.  And that's why i get fed up with it all.

today i went for an eye test, which was fun.  the optician was lovely, and he flirted his way through it.  And then i went to get my swab results, and the good news is that they are all negative!!  obviously i am thrilled, as this means it will be easier to get clearance for work.

so everything is going fine, and i hope it is for you too.  take care in this heat, and look after yourself.

Tuesday, 2 August 2011

Another day, another.....

Well good morning all!!

Yesterday was something of a busy one.  I had to go into the city to take some documents into the new place of work, then I had a twenty minute walk up the road to my ENT appointment at the RNTNE hospital.  I was expecting to see the consultant as per usual, but the kind SpR took pity on my wilting in the heat, and he asked me in first.  I was pleased about this, because it was twenty minutes before my scheduled appointment!!  Anyway, he asked me if I'd mind him scoping me, so I agreed, and he said 'do you want the spray or not?'.  I said 'how good are you?', and he said 'great', so we went for it with no anaesthetic.  He really was good, it has to be said, and he didn't make me gag or retch once.  So I gave him a very good score out of ten; nine and three quarters.  Lol.

He said that the stent is pretty high up, so I presume that has been the cause of all my problems with it.  And because of that, they will be 'pleased' to change it for me.  So I'm 'pleased' about that.  Hehe.  So Monday 8th August, I am officially for the chop.  Can't wait!!

I have to go pick up my swab results soon.  I know they are negative, but even so, there is still that flutter of anticipation that they will reveal something nasty.  Keep your fingers, toes and everything else crossed for me....

Oh, it's just started raining.  Thank heavens!!  My tomatoes will be pleased about that.  It's also better for the breathing.  It was about 31 degrees yesterday, and I was seriously struggling.

I'm going outside to dance in the rain.  Why miss an opportunity like this?!  Have a lovely morning, and we shall catch up later.