Tuesday, 18 January 2011

Easy come, easy go... Any way the wind blows!

Today has been  pretty uneventful.  To be honest, I slept through most of it.  The breathing issues are making me tired these days, and I have the most awful headache imagineable.  I went to a very low price budget supermarket today to buy some yummies.  My finances no longer stretch to Marks and Sparks, lol.  The joys of living on disability benefit, eh?  Anyway, I managed to get some bargains.  Some beautifully fresh fruit, for starters.  i bought some little oranges, and some bigger ones, and also kiwi fruit.  I have to avoid the harder stuff because of my delicate toothies :D  I've been munching on the clementines all night; all that Vitamin C goodness, mwahaha, yummy yummy...  I also bought a load of soft food in preparation for my surgery next week.  So we have lots of potato based food in the freezer, soup in the cupboard, and yogurt in the fridge.  I got a trolley full of food, and it came to the grand total of; £32!!  Absolute bargain.  I've also discovered that I love their version of sugar free coke, so I got like five bottles.  I really hope my dentist never reads this!

That's one of the most annoying things about having been ill for so long.  I cannot afford anything expensive.  I can't afford anything cheap!  I can't buy the new clothes that I so badly need.  Like underwear.  I've stopped wearing socks because I just can't afford them.  And all of my scummy sweat pants have holes in them.  My T shirts are all marked up.  And my skirts are all too big.  I'm surviving on three pairs of leggings and a denim skirt.  So if I could have anything in the world right now, I would choose my health first, and if that were not possible, I'd ask for a couple of hundred quid to update my wardrobe.  That's the thing with illness, it affects your finances.  And with no money, you can't eat properly, which makes you feel lousy.  You can't go out, which makes you feel isolated.  And you can't dress and make yourself up nicely, which really bothers me now.

I noticed, when I first worked in the city, that if I walked through a train station in my business suit, people would walk around me.  I would be served with respect in shops, and people would address me directly when speaking to me.  If I made exactly the same journey in a track suit and trainers, I may as well have been invisible.  It was crazy.  I was the same, it was just the public perception of me that changed.

Anyway, this is how I feel right now; invisible.  My husband seems to think I have an endless supply of money; I don't.  And what I do have, he needs to pay this, that and the other.  Yeah, right.  But it means that as a woman, I can't do all the things that make me feel feminine.  I would kill for a nice haircut, maybe to have my nails done, a few new clothes.  They wouldn't have to be expensive; right now, I'd settle for second hand!!

I don't feel like me anymore.  It's something else the TS has taken.  Maybe one day, I'll find myself again.  But it's prbably not going to happen until I can breathe better.  I'm trying to do the right thing and accept that.

If someone could offer you a great day out, where would you go an what would you do?  Me, I would go for a day out at the theatres in London.  I'd see two performances, and get to meet the cast, who would give me all the merchandise from the show.  And I'd take lots of pictures.  I love all those T shirts and caps and mugs and things that you get when you go to see a show in theatreland.  I miss doing that.  I miss having the money to do that.

God, I sound so mercenary.  But it's true, to a certain extent, that money makes the world go round.  It's not essential, but it does open doors.  I wish that a few doors would open for me right now.  I just seem to have lost the ability to figure out how that can happen.

Sunday, 16 January 2011

Had enough yet?

I've got to get out of here.  My head hurts and, tbh, every time he does something like that, my heart hurts too.  All I want is a quiet life, but I am clearly not going to get it.  So today, I'll try again, and hopefully tomorrow will...happen to someone else.

Friday, 14 January 2011

Tracheal stenosis rules, ok?!

Oh dear, if I truly believed that then I would really have lost the plot.  This morning, following my really rather pathetic attempt at an overdose, I woke up.  I actually woke up feeling bright and breezy, with no ill effects from the night before.  How strange is that?  I expected to at least begin the morning with a technicolour yodel, lol.  I guess that ultimately, I needed to feel like I was doing myself damage to make the urge to do myself damage diminish enough for me to live with it.  Not sure if that makes sense.  But I am sorry about the overdramatic rambling.

This morning, I read some of the most wonderfully encouraging messages on a tracheal stenosis forum I also post on.  I figured that there's wisdom in numbers, so instead of torturing myself with mental images of my impending death at the hands of my screwed airway, I decided to post my dilemma and see what the world has to offer.  And the general opinion was that I should push to be treated by a famous head and neck surgeon in Boston, USA; Dr Mathiesen.  I have heard of this guy; my American friend with TS is presently under his care (and due for her reconstructive surgery in early February this year).  One post, from a very kind sounding lady in Edinburgh, told me how to go about having this treatment paid for by the NHS. 

So finally, I yet again have a light at the end of the tunnel; a way out of the misery.  I don't need a cure in order to get through the day to day rubbish, so much as I need the hope of a cure.  When there is no hope, there is no life, y'know?

But I am sorry for inflicting my misery on you; I thought about deleting those posts but, tbh, it would feel dishonest.  When I decided to start writing a blog, I decided that it should be honest at the very least, however painful that might be for me.  So honestly, I will leave the last two posts up there, but hope that you understand that it was a moment in time which, for the moment at least, has passed.  I suppose it goes with the manic depression, but my refusal to take the medication for it does lead me to these moments every now and then.  It's not something I find easy to admit; who likes to confess that they're nuts?!  But I suppose it's time for me to realise that I'm probably not all that stable!!

See ya later, have a great day.  Live it as if it were the last :0)

Job Done...

'Nuff said....

Thursday, 13 January 2011

Just feel better...

I don't feel safe at the moment.  I feel marked.  Many years ago, I had what they called a toxic psychosis.  Basically, they filled me so full of chemicals that my brain went haywire.  I started to see and hear, touch, taste and smell things that other people could not.  And at the time, I accepted their 'diagnosis'.  I thought, 'okay', this will get better one day.  And, quelle surprise, it did not.  Even to this day, I see the same man following me.  Imagine that, being followed by the same man for the best part of nine years.  He looks relatively normal.  He's about five foot ten inches tall.  He has jet black hair, cut into a fairly modern style.  And his eyes are black as sin.  Literally.  He wears a black coat, black trousers, and black shiny shoes.  And he pops up everywhere.  The same man has been stalking me for all this time.  When you look deep into his eyes, all you can see are flames.  And this is why, perhaps, I know that he is demonic (sorry, can't think of a better word).  Basically, when I was at death's door, a decision was made.  To put it crudely, I'm not going 'up', I'm going 'down'.  And I'm shit scared, as anyone would be.

So I feel like the only way out is sui caedaere (forgive spelling).  And I just want to get it over with now. 

I'm sick of being unwell.  And I'm sorry for moaning (to anyone sicker than me!).

I had enough.

It says it all, really.  Today, I have had enough.

Wednesday, 12 January 2011

So you had a bad day?....

Today, as my title suggests, has been thoroughly miserable.  The old throat has been playing up, causing me to spend hours on my nebuliser hacking up lumps of muddy green phlegm.  Ick.  Not quite what I planned to be doing at the ripe old age of 31. 

My husband (aka him indoors) has been in a bitch of a mood.  Every word he spoke to me was preceded by an expletive.  To be honest, I've had enough.  If I thought I felt depressed yesterday, I feel thoroughly defeated now.  My decision to go ahead with my self euthanasia plan is still in motion.  I don't think of it so much as suicide, more as a merciful end to what has been pretty much non stop pain, psychological and phsycial.

I've crystallised the plan somewhat.  As I mentioned before, I'm going into hospital in London on the 24th January.  I have to be there at 7 30 in the morning, and as per usual I will be holed up in my cage on the delightful Lennox Browne Ward (aka B Ward).  It's not so bad.  It's usually nice and sunny, but the ward has a tendency to be either way too hot, or way too cold.  Luckily, with my own cubicle, I can throw open the window and it doesn't bug anybody.  But I digress, lol....

So I will wait for all the surgeons and anaesthetists to come and see me.  I hope that I get to say Hi to Dr Fergusson.  She's always been lovely to me, and it would be great to see her and say thanks for everything.  I don't suppose she'll have the first clue what I'm on about, but they're used to me being somewhat different.  When they've all gone, and consents are all signed, I should have a few hours to myself.  During this time I'm going to stash some water and a strip of medication in the toilet (Oxy, baby...).  When they call for me in theatre, I will say 'just going for a quick wee...' (TMI, hahaha), and I will take the drugs with a mouthful of water and trot up to theatre.  The medication usually takes about half an hour to kick in which means they shouldn't notice anything strange when I go up for my anaesthetic.  By the time I'm under, it'll be too late.  What I take, along with the anaesthetic drugs, should be more than enough to stop my breathing.  And they won't have a clue what's going on.  I get a peaceful death, and they get to stop wasting their time on such a lost cause, ie me.

I will of course leave a note on my table, referring them to this blog.  At least then they'll know that I planned it carefully, and it won't be anyone of their fault.  Sneaky, huh?  Of course I feel bad that I'm going to involve other people, but to be honest I am terrfied.  i don't want to die alone, and I don't want to die in pain.  To just go off to sleep, surrounded by friends (and some of these people have been good friends to me) would be amazing.  The perfect end, as it were.

I've been hallucinating again.  I had a Terminator moment, when I looked at my hand and it seemed to be made of metal mesh type material.  I'm also feeling really paranoid.  I'm not sure why, but I think someone has been watching me.  Creeeepy....

My time is up, I feel it.  I keep having a premonition that I'm on B Ward at RNTNE, and my throat obstructs.  It's scaring the hell out of me.  I keep waking up screaming, partly because it feels as if my hip/back/leg is literally burning in flame, and partly because of this premonition.  So much for second sight being a gift....

Ugh, I've made such a mess of life.  Even typing this gives me severe pain in my wrists.  Despite the overdose of painkillers I took earlier.  Why am I so tolerant to this stuff?  SUrely I should be dead/dying by now?....

Tuesday, 11 January 2011

It's a hard life....

It's a bit of a dilemma really, isn't it?  What do you do when all hope for a cure is finally gone?  Struggle on in the same vein for another 14 years, or decide that you've had enough, and move on.  There really is no in between anymore.  I dunno, I think life is sacred, it's true.  However hard I try, I can't shake off the belief that there's something bigger than us in charge.  But I also believe that they would understand.  Having watched the surgery, the complications, the struggles, and (lets be honest here!) the psychosis, surely they would understand that there comes a time when a person just cannot do it anymore?

I had plans for the future again.  I was going to go back to college and get a phD in Psychology, I was going to study and become a trailblazer in the field of mental health.  I was going to get fit, grow my hair, and hoist up my saggy bits so I looked like a pneumatic barbie doll!!  I was going to go out and campaign for gay rights again.  I was going to be the person I used to be before all this sickness entered my life.  I'm angry, y'now, and I never lost that feeling.  I'm angry that I didn't get the chance to show the world who the hell I could be without a complicated life.

Just before this all happened, I was 17/18, doing very well indeed at college (an amazing college, although who knows how I managed to get in, lol).  I had a job, I had a voluntary job with the youth service, I had an outstanding social life.  I didn't look too shabby either.  I had boyfriends, sure.  I had girlfriends too!  And I didn't give a damn what anyone thought about me.  I asked an old friend of mine a couple of days ago, who did I used to be?  I have only seen her twice in the last ten years, so she still remembers the old me.  She said I used to be inspirational.  And flamboyant, lol.  And if people questioned me for being flamboyant, I would have said 'your problem, NOT MINE!!'.  These days I'd probably say 'Oooops, sorry...' Hahaha, she actually compared me to Freddie Mercury.  Oh dear, dahhhhling, methinks I used to overdo it, hahahaha...

I think that sums it up.  I had plans to be out there, and instead, all these years later, I find that I have become invisible.  I keep in touch with only about four people.  Noone knows who I am anymore.

Sorry for going on, it's been a rough night tonight.  Have been sat up coughing into a nebuliser, which just makes the old head hurt terribly badly.  I will truly be glad when this is over.

Lol, I just read this through and it sounds pathetic.  I'm not really pathetic, I guess I just have pitiful thought processes from time to time. 

It's been a while!

Hey there!  It's been a wee while since I've posted.  Tbh, I have no good reason.  I've just been wallowing in a deep pit of misery, debating the meaning of life etc.  A few months ago, my lovely surgeon at the RNTNE all but promised me a revolutionary new treatment for my tracheal stenosis, something that could potentially improve my quality of life absolutely beyond belief.  And then four weeks ago, I found out that it was a no go.  Talk about false promise!  Disappointment didn't even cover it.  I felt as if I'd been offered my life with one hand, and had it taken away with the other.  I suppose, ultimately, s**t happens, but how the hell am I supposed to cope with that?

So I plunged head first into an absolutely shameless and deep as hell depression.  Not that I enjoy major surgery, but I was looking forward to having a life again.  Not being tied to a nebuliser, or within a few minutes of a hospital.  I hate this tracheal stenosis, with the absolute depths of my soul.  If it was a person, I would tear it in to pieces.  If only it were that easy.

So I've been wrestling with a dilemma; to die or not to die?  That is the question...  As my only hope for a decent future is now gone, I have to make plans for a (hopefully) pain free end of life.  I have the means, I'm simply working on the motivation.  I understand that not everyone will agree with me, but I have to say 'to Hell with it' because it isn't these people who will have to endure the blocked airway, and the agony of asphyxiation when it comes my way.  I know what a respiratory arrest feels like; I have experienced it in the raw several times.  And it's scary, and it's terrifying, and it haunts you for years afterwards.  post traumatic stress doesn't even cover it.  And I cannot die like that.  It's sudden, unexpected, slow, and painful.  Yes, I know it only takes about four minutes of no oxygen for the brain to go 'arse, I'm switching off', but those four minutes pass very slowly.

Naturally, I'm scared.  Noone in their right mind would welcome death without fear.  But I don't see as I have a choice.  I'm in so much pain I feel like this is the only way to end it.  I wake up every morning screaming in pain, it feels as if my whole body is on fire.  I suppose you could say I'm burning in the flames of my own private hell.

Anyway, to cut a long story short, I'm having surgery again in a couple of weeks, and I have a strong feeling that something will happen then.  If it does, then my final words to the world should be something profound like 'I came, I saw, I conquered'...  lol, what a pompous twat I am!!

I'm pretty safe in the knowledge that noone I know will ever read this, but I'm typing it because I need it to be out there.  I need people to know that if I had the choice, I would live forever.  But this isn't a life, it's an existence.  And it's a painful one.  And I've done it for too long.

Sorry for being so miserable, I guess I'm feeling kinda down today.  I saw my psychiatrist and managed t convince him that all was fine and dandy (in his words, 'plodding along').  It's amazing what monosyllabic answers can do for your freedom.  I came home and overdosed on painkillers in order to get some sleep (oxycodone, yay...).  Then I fought my way back to consciousness and went about feeding the cats.  I can't remember the last time I got to go out, get drunk, get stupid and wake up somewhere unfamiliar.  I feel so bloody old....  It isn't fair, sob...  Ah well, at least I still look 27 even if I am 31.  I'm grateful for small mercies, it just isn't enough though.  I've tried to be happy with what I have but what I want is what I used to be.  And I can't remember who that was, so it's a bit of an impossible aspiration.  Ah well,   it isn't for much longer, eh?

One last question, how do I tie up the loose ends and make sure noone else gets into trouble for what I'm about to do?