Thursday, 30 June 2011


Hey all!

Just a quick post really to let you know that I have another interview, yay!  It's at Charing Cross Hospital in Hammersmith, and it's a kind of reintroduction to work programme for people who have been out of work for some time.  You do the two weeks training, then after that you get interviewed and they either offer you a job or they don't.  I really hope that I get a place on this course, I feel as if it's made for me.  And the best thing is, they have a functioning ENT ward there, my surgeon even works there.  So should anything go wrong while I'm at work, I'd certainly be in the right place, wouldn't I?

That's the thing with TS.  It isn't impossible to get a job, it's just an awful lot harder than it is for most people.  It's very important to take care of health first, but if you keep plugging at it, you might be able to find a sympathetic employer.

I hope, having said that, that I am well enough to go on Monday.  I've just coughed up an entire cupful of mucous.  Yeuch, that cannot be good!!  And it's a gross khaki green colour.  My delightful GP would be most impressed, lol, 'ergh, that's revolting'.... He does make me laugh a lot, which is very important when you're bogged down and feeling ill.  I'm going to be bloody upset when he retires!

Okay, tara for now, have a lovely evening.  Will catch up with you soon!!  Off to watch Four in a Bed, then Come Dine With Me.  I enjoy trashy reality TV lol.

Wednesday, 29 June 2011

Life goes on.

Hey there!

Am pleased to report that I am feeling much better.  The Clarithromycin worked within a few hours, and suddenly I didn't feel as if I were boiling alive.  I wish that I could say the same for my failing friendship, but I think that that at least is terminally unwell.  I got an email from my 'friend', who said that it was all the result of misunderstanding relating to text messages on both our parts. And that left me thinking, okay, fair enough.  But what exactly was the misunderstanding apart?  How am I supposed to talk to this guy ever again when I don't know exactly what it was that set him off?  I sent a message back saying 'well okay, thanks for letting me know.  But it didn't really tell me what was wrong, and now I'm too nervous of upsetting you to be able to continue this friendship.  So basically, it's been nice, and it's a terrible shame, but I guess this is the first time in my life that I've had to end my friendship with someone ever'.  At least, I think so...

I think that friendship is a precious thing.  But if someone becomes 'toxic', then they need extracting, lol.  He was trying to get me in trouble with my husband.  Thinking back now, I'm sure of it.  He kept sending me messages asking me to perform sexual acts on him, despite knowing that it wasn't something I was up for.  Then he started sending me messages saying 'Love you babe',  Stuff like that.  At the time I put it down to him being drunk, but now I realise that it showed a profound disrespect for who I am.  So I'm still upset about it, but am beginning to realise that my life may be considerably better without him in it at all.

Now I have more energy to concentrate on my fight with TS.  I went to see my surgeon a few weeks ago (it must be at least six now) to say that my tracheal stent had become uncomfortable, and he said he would list me for surgery to have a look at what was going on with it.  But I have heard absolutely nothing.  And I'm sure that all this chest infections are the result of the stent being in the wrong place.  So I simply must chase that one up and stop being so lazy.

I spoke to my care coordinator today and asked him to arrange blood tests for me.  I'm pretty convinced that someone has been trying to poison me, and whether it is a paranoid delusion or not, blood tests will rule out any possibility of it actually happening.  I asked him to keep it between him and me, but I guarantee that by tomorrow morning, the entire department will be thinking I've gone insane again.  C'est la vie.  It's a means to an end, isn't it?  He wouldn't order a blood test just because I asked him to, but I am pretty sure he'll sort one out for me now.  Trouble is, it means they're going to find out that I've been off the lithium for a while.  Ooopsie, I didn't think about that too hard, did I?!

I'm going to make an appointment with my local MP to begin the process of fighting for my tracheal transplant.  He very kindly agreed to help me in principle, so it's time I stopped putting it off and got my arse into gear.  So a busy week planned by my standards.

Hope you've all had a lovely day.  Night night and sweet dreams x

Saturday, 25 June 2011


Hey there,

Hope you're having a fine old day.  Unfortunately, I'm still not well, and have been in bed for most of the day.  I don't know what's wrong with me, I just feel generally urgh.  I have a chest infection, so it could be that, but I wish it would hurry up and go away. 

Life has been stressful today.  I have a 'friend' who has been a little cold with me.  I tried asking him what was wrong, and he didn't answer.  He kept sending me monosyllabic text messages, which left me feeling distinctly paranoid and edgy.  So today I asked him out straight, what the hell is going on?  And he said that it was a misunderstanding on both sides over some text messages.  Not very helpful, as he won't tell me exactly what I'm supposed to have said that upset him so much.  I have a personal dislike for people who play games.  I guess that it's part of my illness, but I need people to be direct with me.  When they play silly beggars, I just can't follow what's going on.  So although on paper we have agreed to disagree, right now I feel as if I never want to see him again.  He has an illness that affects his moods, so I try and allow for that, but I think I've been pushed a little too far.  Fine, if someone goes cold on you, that's their right, but they don't have the right to play mind games and stress you out in the process.  I can deal with a friend who never wants to see me again, but I cannot deal with a friend who wants to make my life miserable in the process.  So what do i do?  My gut feeling right now is that it isn't worth persuing it, but I've known him for eight years.  I've even rowed with my husband in the process of defending him.  I think it's a toxic friendship and I'm best off out.

The crochet blanket is coming along nicely, and it looks great where I've sewn it up with the metallic wool.  I'm so proud of it already, and it will sit nicely over my rocking chair. 

I will write properly when I feel better and less fed up.  Right now my chest is killing me, and I feel exhausted.  Emotionally drained as well.  I never have been able to handle stress, it immediately makes my mind go to dark places.  Suicide would be a blessed release, but I don't think I have the bottle!!  I have a nasty feeling that I'm going to have to wait for mother nature to make the choice for me.

I hate losing friends, especially when I'm unclear as to why.  I don't feel comfortable with him anymore, it always feels like I'm walking on glass trying to avoid his sensitivities.  Yes, he might be left lonely and upset, but as harsh as it sounds, I have other things to worry about.  Stress is not good for my illness, so I have to remove all sources of it. 

Life is hard, isn't it?  Okay, I'm off to do me nebuliser and take my medication.  That might take a while.  Night all, and sweet dreams!

Friday, 24 June 2011

Fed up, Insecure, Neurotic and Emotional.


It's been one of those days.  Do you know the kind I mean?  Everything feels just a bit 'eh'.  I've had a falling out with somebody who I thought was a really great friend.  I'm not sure really what's upset him, and he certainly isn't telling me.  He just keeps making odd little comments, which suggest he either thinks I'm stupid, or a liar, and both of those implications really and truly hack me off.  If someone has a problem with me, I prefer them to tell me to my face.  None of these silly mind games, I just can't stand that at all.  I sent him a text saying something like 'these are the joys of immortality', and he replied with 'there are many joys about solipsism', or something very similar.  Solipsism is the belief that nothing outside your own mind is real, and so what he was implying was that I'm selfish/self absorbed.  That I don't care about anything outside of my immediate psyche.  Was I supposed to laugh?  I felt it to be a nasty and petty little joke. 

Something changed between us a couple of weeks ago.  I really don't know what caused the change, it was just a subtle awareness that things were very different between us.  I always felt close to this particular friend, in a purely platonic way, because he was one of the few people who I thought I could trust.  And now I've realised that perhaps I was overreaching.  I do that sometimes, I suppose, it's part of life.  But it's disappointing.  I have to stand by my principles and beliefs, and I simply cannot be friends with somebody who is going to treat me badly.  I've never held his depression against him, and he's certainly been very rude on more than one occassion because of it, because nobody can help a mood disorder.  But he all of a sudden has started to second guess everything I've ever said to him, and right now I feel like I'm in the midst of some bizarre history test.  He actually got annoyed with me because I mentioned I knew more than five people.  He said, 'so, you told me you only had five friends'.  And I said 'I told you I only had five close friends', I know a lot of people who I consider to be friends, but some I've never even met (efriends), and some I haven't seen for ages.  But I still class them as friends.  I think I probably know about 500 people who I consider to be friends on some level.  But as I said, there's only five that I see regularly.  And he seemed to get even more uptight about that.  I honestly don't understand firstly what I've done wrong here, and secondly why I need to explain myself to someone who is neither husband, nor family, nor someone I even particularly like right now. 

So I think that I'm going to have to take a rare and unprecendented step for me, and I'm going to have to lose him as a friend.  I don't need the stress.  He will leave a big hole in my life, for sure, but I can and will move on.  Life goes on, as Leann Rimes says.  I won't be fooled again, as in the words of the Who.  I stuck up for my friend time after time, I got into row after row with my husband.  I've had enough.  I want and need a quiet life.  So for the first time ever, I'm going to delete a facebook friend, and I'm going to try and block their calls and messages.  Life is too short to surround yourself with toxic people, isn't it?

Sorry for going on and on.  My friends have always meant so much to me, and I've never had to actively separate myself from them before.  I find it hard.  But how can I care for somebody who firstly thinks I'm a liar, and secondly things I'm stupid enough to not get the obvious jokes he's trying to make at my expense.  I just don't enjoy those kind of friendships.

Sorry for boring you with my trauma.  I was going to write about mood and TS.  I always find that the more stressed and anxious I am, the worst the pain is, and the harder it gets to breathe.  But I feel too emotionally wrung out already.  I've been stewing over what to do about my so called friend instead.  I wish I could fix it, but clearly that isn't going to be possible.  Breaking up is hard to do.

On the good side, my chest is starting to clear, so hopefully I will be feeling significantly better in the morning.  I hope that life is treating you well today, and that you are breathing well and enjoying your day.  Take care of yourself, and be thankful for the people who support you day in day out, those people are worth their weight in gold. 

A big shout out to all my friends, both old and new, I love you all.  Sweet dreams.

Talk about swings and roundabouts

Funny how the world turns, isn't it?  This morning I went to see the delightful Dr H.  It was interesting.  The queue was huge, and people were moving slowly.  Obviously, there are quite a few complex health issues out there.  So, I finally got in to see the man himself.  I explained that I had a hideous lurgy, and I believed it to be a chest infection.  He had a listen to my back and went 'ugh, that's disgusting'.  Reassuring, isn't he, lol?  But at least I know that what my body was telling me was right, you know?  And I thought I'd push my luck and complain about my nobbly knuckles as well.  He gave me some interesting cream to rub in, which smells absolutely disgusting.  The other stuff was nicer, even if it didn't work.  Ketaprofen smells delicious, all flowery and lavender based, mwahahahahaha...  I said I shall make sure to run myself on a regular basis lol.  And then I said can I ask something else, or are you bored already?  And he said 'go ahead'.  So I explained that I have been having trouble getting to sleep of a night.  Even one, two, three or four zopiclone didn't seem to have any effect.  I've been sat here night after night, playing with my blog and making crochet blankets.  But sleep still seems to evade me.  He said two things.  Firstly that the zopiclone probably isn't strong enough for my 'sort', what with me being bananas, so he prescribed some diazapam to give it a little more oomph.  And secondly he said to see the psychiatrist as the lack of sleep and agitation could indicate I am rising higher and higher.  I enjoy being a little high, it's one of the few gifts given to me by my illness, lol.  I told him straight that I am trying to avoid the psychiatrist, as he overreacts somewhat to the weirdest things.  One day he deduced that I was psychotic because I sat in the wrong chair.  Don't you just love them?

And about half an hour ago, a lady called from Adecco to ask if I want an Admin job at Queens Hospital.  Of course I want a job, even if it means we lose all our benefits.  The job would make me feel even slightly human, which would be a bonus.

I sent her my CV, and am waiting to hear back.  I shall keep my fingers crossed.

Funny old day.  It was nice to have an offer out of the blue, even if I was too off my face on temazapam to sell myself properly.  But there's no way I could have predicted the call, so I am not going to blame myself.  I needed the rest, and that's why he gave me the drug.

So all is well in the world.  I like my GP once more, and I like myself once more.  Respect is a funny thing.  When I feel as if I have lost my self respect, my world caves in.

My lungs still feel awful, but I have some clarithromycin which should work.  I've grown to trust it as an antibiotic, it's one of those that grows on you quietly.

I'll write more when I can think staight, but I wanted to say hi, and I hope you're having better days too.  Take care!

Thursday, 23 June 2011

Bad day

Hope you're all having fine and healthy days.  Today I feel poorly, I feel distinctly rough.  It began about a week ago, when I started to suffer sudden attacks of palpitations that were so strong they took my breath away.  It's not something I usually suffer from, so I found it kind of frightening.  And gradually as the week has worn on, I've felt more and more unwell.  Today I feel as if my throat is swollen.  If you've ever had tonsilitis, you'll know what I mean.  The trouble is, I don't have tonsils.  So I'm not quite sure what the problem is.  I know that I have to see the doctor asap, but I just can't face it.  I feel horribly depressed today, but I just can't seem to rest up.  That's the trouble with having MDP as well as the TS.  Sometimes the needs of the two conflict.  I suppose that because the MD affects my mind, it usually wins the fight. 

I found out a while ago that I didn't get the job that I went for.  I said before I went that I thought they already had someone in mind, as they had restricted the number of applicants to twenty, standard practice when you're going through the motions of an interview.  But it was when she told me that my tests were marked highest, and my interview was fine too, that I thought 'there's something fishy going on here'.  But I shouldn't get upset, I'm not well enough to work anyway.  It would have been nice to have had a foothold in the real world, but I can cope.

Sorry, I shall try and be more cheerful tomorrow.

Wednesday, 22 June 2011

Will tracheal stenosis kill me?

Sorry to sound so cheerful, lol, but I suppose this is a question that must be addressed.  In my case, there is a chance that yes, the stenosis will kill me before anyone has a chance to even know there's something wrong.  There are a few things that can go wrong.  The first time I suffered a major respiratory arrest was shortly after I had laser surgery and a stent change, early on in my treatment.  I came back fine from theatre, but over the course of twelve hours, my vocal cords began to swell up.  As they did so, it got harder and harder to breathe.  At first, it just felt as if I'd been winded, but as the night wore on, it felt as if I were being tortured.  It isn't something I would wish on even my worst enemy.  The body fights lack of oxygen.  It fights tooth and nail to stay alive.  But it's self perpetuating, because as you fight for breath, you increase your need for oxygen.  Which makes you fight more.  You get the idea.  About eighteen hours after my hell began, my surgeon appeared at the foot of my bed.  I looked him in the eye and I begged him to 'just do a tracheostomy.  HELP me.'.  And he said he wanted to hold off on that.  He disappeared, and ten minutes later I almost succeeded in throwing myself out of the window.  I wanted to die quickly.  I just couldn't bear the slow squeeze of life that was happening.  Ten minutes after that, I was in the lift to go up to theatre, where I finally gave up the fight and arrested.  Unsurprisingly, I woke up with a trach.  My vocal cords were so swollen that every time I took a breath it, they blocked the stent, thus explaining my struggle for breath.  So it wasn't in my head after all.  Trauma had erased the memory, so I had to ask later what happened.  And I was told that I had been very, very unwell.  At death's door.

Another time, I suffered a complication in theatre.  My throat went into spasm, and closed down.  There was nothing they could do.  They had to wait for it to release.  But this apparantly took four or five minutes.  It was so close that they told my husband to expect the worst.

Another source of danger is infection.  I've had many of these, including bugs that ate my skin and turned it into liquid.  Gross, and very deadly.  I've even had the dreaded MRSA (thanks to a certain London hospital!), but am now thankfully clear.  I've had infections on two occasions that were bad enough to put me on life support for a month.  Not fun at all.  Contrary to popular belief, not everyone sleeps when under sedation.  Personally, I hallucinate.  Which means that I'm always a bit crazy when they wake me up, and sometimes this doesn't go away.  I feel disturbed just thinking about it.

Another complication in theatre was bleeding.  I started to bleed, and they just couldn't stop it.  I bled and bled and bled.  And I woke up with another tracheostomy.  I didn't speak for a month, I was so depressed.

Another notable life threatening experience involved a T tube.  I was fine.  My surgeon came to see me and I told him, I feel great.  But then I coughed.  And the tube blocked solid.  I tried to suction, but nothing came out.  I tried to spray saline to loosen it, but that didn't work.  I tried to pull the tube out but couldn't.  I pulled back the door and walked to the nursing station to say 'I can't breathe'.  And they told me to stop messing around and get back in bed!  They noticed thankfully that I was going blue, and by that point I remember looking at the clock, and watching the seconds go.  I remembered that it takes on average three minutes without oxygen to die, and I was willing it to go as quickly as possible.  I managed to heave myself back into bed, and with that last exertion, everything went red, then brown and then white.  And I died.

Luckily, my surgeon had been in the room next door.  the last thing I remember is looking into the eyes of the nurses and seeing the blood drain from their faces.  I was in serious danger, and technically dead.  How strange.  But I woke up to find Mr hero surgeon straddling my chest, holding a T tube in one hand and covered in my blood.  I suppose it was more striking because he was wearing a very expensive looking bright white shirt.  And some anaesthetic chap was digging around in my groin for an artery.  It turns out I had pulmonary oedema and pneumonia, which was making me throw out big lumps of mucous, which was what clogged up the tube.  That is the closest I've ever felt to heaven, and I don't want to go back in a hurry.

I guess the moral of my story is that you have to treat tracheal stenosis with respect.  It can and will kill you if you don't.  I'm not trying to scare anybody, but I swore to tell the truth and this is it.  Death is a possibility, and a very real one.  So do the nebulisers, take the medications and look after yourself.  You have to be determined to win this fight because honestly if you aren't, you won't.

Take care y'all.

Tuesday, 21 June 2011

Philosophical me.

Good morning people, hope that you're waking up to a fine sunny vista.  I'm not, I have to say.  I've been awake all night.  I just couldn't settle, I guess.  Maybe it's a side effect of not taking the lithium (shhh, don't tell anyone!), or maybe it's just general worrying.  Whatever, the voices in my head wanted to talk, lol.

I tried listening to some music.  I went through the selection, from Evita to Les Mis, from Daughtry to Daniel Bedingfield.  None of it quite hit the spot.  Then I played an old song, Runaway Train by Soul Asylum.  Obviously, it's a song about runaway kids, but I always found the lyrics so beautiful, for lack of a better word.  'Call you up in the middle of the night, like a firefly without a light, you were there like a blowtorch burning, I was a key that could use a little turning.  So tired that I couldn't even sleep, so many secrets I couldn't keep.  I promised myself I wouldn't weep.  One more promise I couldn't keep.  It seems noone can help me now, I'm in too deep there's no way out.  This time I have really led myself astray'.  And you know something?  That's exactly how I feel right now with my TS.  I'm caught between a rock and a hard place.  I can't stand the treatment but I have to have it.  Because what are the other options?  So thanks again to Soul Asylum for giving my feelings tonight a voice.  Btw, their records are on ITunes.  I'm only saying that so they don't sue me for using their lyrics, mwahahahaha...

This morning I have to go and see the delightful (and frankly slightly mental) Dr Hamilton.  I'm going to have one last attempt at sorting out the pain control issues, before I feel the need to take things into my own hand, get my drift?  My GP is a nice chap. Actually, he isn't....he's incredibly intelligent and has, I think, a genuine with to help people with serious health conditions.  But he is presented day in day out with the same people with the same old problems.  And I guess there's only so much enthusiasm you can muster when you've seen your fiftieth cold of the day.  Either way, he has more good days than bad.  The bad days are horrible, I was subject to one last time I went.  The queue for the surgery was out of the doors of the shopping centre, it was ridiculously long.  And this was before they even opened.  By the time I made it into the appointment, he was staring at his watch.  He muttered something about slipped discs and shoved a handful of prescriptions at me.  I was like 'what slipped discs?  What are you talking about?'  But gave it up as a bad job, reasining that even the best of us have bad days.  When he has good days, he is responsive and creative, offering new solutions to the problem, rather than the standard 'I'll give you some co codamol'.  I suppose all things in life must balance.

I have to fill in this form.  So far I've done the bit where you list your medical problems.  I have a 12cm long full thickness tracheal stenosis.  I have a 12 cm long section of trachea that flops in when put under pressure, and this is known as trachomalacia.  I have lumbar spondylosis.  I'm honestly not quite sure what that it, but I know it hurts.  I have sacroiliitis, which is inflammation of the sacrum.  Again, this is excruciating.  I have facet hypertrophy, which are bony growths on the facet joints of my spine.  I have disc degeneration in the spine.  I have some kind of sciatic nerve damage.  I suffer chronic fatigue and pain.  And bipolar disorder with psychotic features, in other words, type 1.  They have given me a tiny little box to fill all this in.  Silly people. 

Monday, 20 June 2011

Little Angels

Breaking out of school and we were kicking hard
A lot of good dreams and a lot of false starts
Swore we wouldn't get old before out time.
So what's the matter boy, are you wondering where it went?
The memory's better than it was back then
We couldn't wait to leave it all behind.

But there is one thing I know.
I ain't quite ready to go.

Too much, too young
I won't do time now I've just begun
Too much, too young
What about love what of songs unsung
Too much too young
I'll never go backwards I'll always go on.

A jaunty tune to finish the day with.  I used to listed to this all the time when I was younger.  As I got older and rediscovered the song, it felt more like a battle cry.  One of those 'I shall triumph whatever the issue' sort of songs.  It always leaves me in a mentally strong frame of mind.  So if anyone needs a little pick me up, it's on itunes lol, for the princely sum of 79p.  An old band, but a goody.

As for me, I feel awful today.  So bad that I actually dosed up on tegretol to try and get some of the nerve pain to relent.  It almost worked, but not quite, so I'm still uncomfortable and writhing in pain.  On the bright side, my hubby just work himself up by snoring too loudly, lmao, the look on his face was priceless when he jumped awake, hahahahaha...  Small things please small minds, and I suppose that means my mind is very little indeed.  I can live with that.

Breathing hurts.  My lungs are full of goo and muck, whatever that may be.  And my beloved hubby is just reaching another crescendo, I wonder if this will continue all night?

Sorry I'm not making too much sense.  I'm feeling a little too rough today.  I shall try harder tomorrow to say something sensible, I promise you.  Night night everybody, sweet dreams to you all.

Sunday, 19 June 2011

Murky mucous

Oh dear.  Things were going so terribly well.  Today I woke up feeling fine, but about three hours ago I started to cough up some really disgusting secretions.  Now, when I go to the doctor, the first thing he says is 'what colour is the stuff you're coughing up?'.  Well, on this occasion, it's kinda green and grey, with added brown and red.  Like I say, it's disgusting.  Welcome to my life. 

Clearly I have a chest infection, but I don't feel so bad.  Maybe it's the painkillers masking the symptoms, actually it probably is, but I'm not complaining.  I have a job interview on Tuesday afternoon, and although I know full well that I am too unwell to actually take the job (and occupational health will never clear me to do so), my pride dictates that I must put in a good showing.  I'd like the offer of the job, just to prove I still can 'do it'.  Many of my worst depressions are borne out of feelings of being on the shelf already.  I mean, at 31, I have never held a job for longer than a year.  I haven't ever been promoted.  I came close once but it was ruined by a psychotic colleague.  Long story, I will tell you one time.  I just mainly want to have all the things that someone of my age would normally have.   But my illness has prevented me from being able to build a reliable reputation at work, simply because of the amount of time that I am unwell either at home or in hospital.  Other things a person likes.  A job.  A house of my own.  An income.  A family.  The ability to care for myself and my own in the way I would like to.  I don't want things, I would just like to be able to live.  Things are not important.  When we are at deaths door, we don't think of a computer that we once wanted.  We think instead of people we knew and loved.  And time we spent with them.  And as my time on Earth is likely to be shorter than most, I would like to make the best memories that I possibly can.  And I just made myself cry writing that.  Silly me.

Love is so important.  My husband, faults though he may have, has always been there when I've needed him, often at cost to himself.  He hates the sight of blood, and yet he is always there to hold my hand when I am back from surgery.  It took me a long while to get used to, and I was suspicious at first.  I had always dealt with my illness on my own, and it felt strange to let someone else share the burden.  But support is good.  Once you learn to share your troubles, the load does lighten.

I suppose the worst thought I had today, staring at the disgusting mess produced by my lungs was 'here we go again'.  I hate hospitals.  Despite appearances, I am actually deathly frightened of everything that happens there.  I have very few good memories of being in hospital.  Mostly my time in hospital has been very lonely, and full of fear and stress and pain.  And despair.  I despair that this will never end, but I have to keep telling myself that it will.  Some would call it faith, some would call it trust in your doctors, others would call it blind optimism.  But I strongly believe that I shall not have to suffer much longer.

There are people in far worse situations.  But when you're in a heap on the floor, as you have collapsed from lack of oxygen, other people don't come into it.  Lack of oxygen narrows your thoughts and refines your concerns in such a way that you can probably think very clearly about essential things only.  My fear is not of death.  My fear is of torture.  A quote that I borrowed from Thomas More on the Tudors.  Torture for me would be fighting for air for hours before obstructing and arresting.  And it has happened so many times already, that it's a real fear and one that I cannot avoid.

So I am making plans.  Should I become unwell enough to know that I shan't survive much longer, I will be taking myself off to Switzerland.  I believe in euthanasia, but only as a last resort and when all options have been exhausted.  And I hope that when the time comes, my family and friends are able to understand the decision that I made, and to know that it wasn't an easy one.  I'd rather live forever, and share in their joys and support them through their troubles.  But life may not offer me that chance.

Sorry for rambling on.  I suppose I'm trying to organise my thoughts, which are a little murky and sticky in their own rights.

Pain levels are not great today.  They are bad enough to cause me difficulty in moving, but not bad enough to make me scream and writhe around.  It's awful, but I finally have a plan to suggest to my GP, and I'm hoping that dear old Dr H is feeling interested enough to help.  He has his good days and luckily his bad days are few and far between.  I love having a creative GP, but he knows he's good and totally takes advantage of that fact.  Familiarity, it would seem, does breed occasional contempt.  But mostly we have a healthy respect.
Tomorrow is a new day, so I shall attack it with renewed vigour.  For now, goodnight my friends.

Saturday, 18 June 2011

I'm going slightly mad...cough cough cough.

Greetings peoples,

Ah, today has been fun.  I missed most of it!!  For one reason of another, I was up pretty much all night rowing with the Mr, and we finally made it to bed at 6 30 am ish.  So I didn't get out of bed until 4pm.  I whacked on the Tudors box set (which by the way is outstandingly fun) and set about making some more squared for my crochet patchwork blanket.  And of course, I spent an hour or three on the obligatory nebuliser, which was more productive than usualy owing to the large amount of time I'd spent in bed.

But that was it, the sum contribution of me to Saturday.  Breathing difficulties really do limit your horizons somewhat.  And besides that I had the munchies.  I don't normally have a sweet tooth, but for some reason I couldn't get enough today.  Back on the wagon tomorrow (or technically today). 

Did I mention I've quit the lithium?  I know, I know, risk of relapse and catastrophic psychosis.  I get it.  My motivation for stopping wasn't a snap reaction to a firmly held delusion about poisoning and mind control.  Oh no, it was far better than that.  I started to have palpitations and genuinely began to fear that the medication is damaging my body.  So I made the educated decision to not refill my prescription, and just took one less pill every day for a fortnight until they ran out, which is when I quit cold turkey.  So I've been lithium free since wednesday last week.  So far I feel different.  I feel more lively for sure.  And I don't have that awful dragging tiredness that has been plaguing me recently.  I am starting to feel very elevated, you know, very upbeat and extremely optimistic.  I'm having racing thoughts and other people are starting to tell me to slow down.  And my temper is returning in full force, I'm getting easily agitated and irritable.  But I can live with this all, lol, because I honestly just feel so good right now.  Obviously not physically good, I mean everything hurts like hell all the time and I can't walk, talk or breathe easily or indeed well.  But mentally I have this amazing sense of well being.  I feel like the kid on the Ready Brek advert, y'know, with the glowing orange aura.  I received a letter from Dr Dunne (the psychiatrists) secretary, and they have moved the appointment that I asked them to move forwards back again, so noone can say I didn't even try and talk with him first, can they now?

And as for Norman the care coordinator, don't even get me started! I went to appointment after appointment because they were quite insistent that I needed him to improve my life, and I can state to date there is nothing he has filled in or arranged or even done that I feel will help me in my personal recovery journey.  Not a thing.  He's a nice chap and all that, but I get the feeling that as far as professionals go, he really isn't.  He's a little too lazy and disorganised to achieve much.  I haven't even seen a care plan, so don't have a clue what he's supposed to be doing for me, and I've been seeing him for over a year and a half, almost two years.  Only a mental health team would hire people like that.  My local trust is full of 'them', people with good intentions who do very little and pass swift judgement on their clients if they don't do exactly as instructed.  The system is unequal, and I will fight until my dying breath to advocate for mental health service users who need it.   Okay, it's safe to come out now.  Rant over.

My beloved is snoring away already, so it's almost time for me to log off and plug in to my IPod, the only thing that drowns out the sucking and grunting noises he makes in his sleep.  To be fair, he also talks in his sleep which is very cute, especially when he says something like love you, and smiles :oD

Sweet dreams, and keep on breathing.  Seize the day!!!

Friday, 17 June 2011

TS truly sucks...


I had a long and leisurely lay in this morning.  It's been a busy old week by my standards, as I attended the committee meeting on Wednesday afternoon, and then spent yesterday morning at the hospital with my mum.  We had fun, strange as it may sound.  We arrived a little early at the world famous Queens hospital in Romford (famous for none of the right reasons, I might add), and we drifted into the cafeteria where we indulged in one of their delightful cooked breakfasts.  I hate to say it but they really are quite nice, I'm not just being sarcastic!  We went to the appointment, then had a browse through the Jewellery stall that was set up in the foyer (or is it an atrium?).  I found a lovely string of large wooden beads (that set off my scar delightfully) and honestly, they looked good on.  So my lovely mummy treated me to them, and I wore them all the way home. 

I checked my email and miracle of miracles, I've been offered a job interview.  I don't want to jinx it by saying too much, but if they can see past the illness then I truly believe this is the job for me.  Strictly speaking, I am too ill for work but I am still mentally desperate for a normal life.  So if they are kind enough to offer it to me, I am pretty sure I'd give it a good go.  An understanding employer would make a huge difference, so I shall take it step by step and see what comes my way.

I was in terrible pain all night, despite the oxycodone.  Sometimes the painkillers just don't kill the pain, and I spend the night writhing and groaning in my sleep, if I can sleep at all.  If it's particularly bad, then I spend the night wandering up and down, trying to find something to focus on other than the grinding creaking aching stabbing burning excruciating agony going on in my spine.  I even took up crochet as a way of distracting myself.  When you're in that much pain though, it's very hard to focus on anything at all.  But despite all of that, I woke up pretty early this morning in a not so bad mood.  I actually feel quite perky.  Granted, this may be because I've secretly stopped taking the lithium (shhhhh!!! don't tell the psychiatrist, Dr Dunne would be mad....).  But a little perkiness is always welcome.  I had my morning cough, which was productive.  Not that I like to gross people out, but this mornings secretions were all stringy, and some resembled rather gooey light green elastic bands.  Seriously, you can stick things to the wall with this stuff lol.  And this is despite the carbocisteine!  Can you imagine what it was like before?  I remember well, I had several respiratory arrests as a result of mucous plugs and blockages.  Deeply unpleasant and very traumatic. 

Anyway, I then sat down and had a look through my e friend's blog.  She has TS too, and I'm always really interested to hear how other people are doing.  She had a reconstruction last year, but sadly it hasn't solved the problem and she's still fighting to breathe.  I was hoping to read that she was doing better, but life is not being kind to her at the moment, and her life seems to revolve around hospitals and surgeries.  I wouldn't wish this illness on anyone, and I think the worst of it is that many people don't understand quite how limiting it can be.  I was at the train station in Romford one day, pulling myself up the stairs by my arms (because I was really struggling to breathe), and a woman who looked about 50/60 crossed over the stairs in front of me (they are pretty wide) and stood there is front of me with a sour faced look that said 'get out of my way'.  I said 'excuse me please', and she snorted through her nose and then proceeded to mouth off at great volume about how fat and ugly people such as me had only themselves to blame, and I could move if I wanted to.  I extended myself to full height, and for once stuck up for myself and said 'you can clearly move a lot easier than I can.  I just watched you walk the full length of these stairs under your own steam, with no support.  If I let go of this banister, I'm going to fall over.  So that isn't going to happen.  We can stand here all day, or you can move.  Now what is it to be?'.  And she went.  As I thought she might.  Sometimes I meet people who are rude and even aggressive because of my coughing and wheezing, but I don't think I'll ever get used to it.  It's bad enough being seriously ill, it would really help if people wouldn't abuse me for it as well.

I wish I could take my friend's pain away, but that's a skill I don't have.  I can only hope and pray that one day soon she wakes up and finds that something has changed for the better.  In the meantime, life plods on I suppose.

Right, enough of my cod philosophy for now.  Lunch is on the way, and I've requested a table and chairs through Freecycling, so I have to check if they've picked me or not.  Fingers crossed, lol, I really need the chairs!!

Have a lovely day, and hopefully we'll catch up later and I'll write something a bit more sensible. 

See ya later!

Wednesday, 15 June 2011

Another day, another letter in support of tracheal transplants!!

So today I managed to wake up before 2pm, which is something of a miracle.  People tend not to realise quite how exhausting everything is when you can't quite get a full lungful of air.  The reality is that people with chronic tracheal stenosis (as opposed to the easily cured kind), tend to lose an awful lot of their day to sleep.  Right now I'm going through the nebuliser/medication ritual.  In the morning, it isn't so bad.  I take carbocisteine for the thick mucus produced by my lungs, and I nebulise with Mucoclear saline to try and keep my tracheal stent free from crusty secretions.  I've had a blocked airway quite a few times now and it really is no fun.  They shad of dusky purple blue that your lips go when you stop breathing really doesn't suit my colouring.   Next lot of medication are painkiller mainly.  I take carbamazapine for nerve pain in my leg.  When I originally fell ill, I woke up after several weeks in ITU and could not feel my legs.  It was a little bit terrifying, but made more so because I couldn't get anyone to believe me!  They realised eventually of course, because every time they stood me up I fell over.  But that's another story....  I now take Oxycodone, one 10mg and one 20mg, anywhere up to 4 times a day of each.  That is to help with the terrible grinding, stabbing, twisting ache of lumbar spondylosis.  Again, another story.  I take some ugly little brown tablets, known rather poetically as Lyrica, or Pregabalin.  And on top of all that I take Naproxen, which is a basic NSAID.  Repeat said drug routine at least 4 times a day, and you get an idea how much time 'being sick' takes up.  I no longer have those angry fits of 'why me?!!', but I really do resent the restrictions that my illness impose on my life.  I would trade it all in if I could have a normal life, with a boring job and the ability to go out for a day and not have to worry about pain and airway blockages.

So, what am I going to do with the rest of the day?  Well, the plan is to go to a committee meeting for an advocacy group that I have volunteered with for the best part of two years now.  I will admit to feeling slightly out of my depth sometimes, but I think they just use me to make up numbers.  It's fine, so long as they never let me make any important decisions lol.  I keep my eyes down and my ears open and every now and then I learn something interesting.  I haven't been for a couple of months (the meetings were cancelled for various reasons) so I am a little worried about whether or not I'll be able to keep my eyes open for the two hours.  I must go though, it is truly the only thing I do these days that's outside the house.  isn't that sad?!

And then I shall come home and watch Four in a Bed on Channel 4.  I'm absolutely hooked!  For those who don't know, it's a TV show where 4 couples/people who own bed and breakfasts (B and Bs) in the UK visit each other in turn and score their hosts by deciding whether or not to pay the full price of the room.  Basically, whoever gets underpaid the least wins.  It's so funny, they walk around with their noses to the carpet looking for dust and pubic hair left behind by other guests.  And the worst thing is, sometimes they actually find them!!!  Disgusting.  There have been a couple of really nice ones though, and I must admit I was tempted by the 14 room country house with luxury en suite rooms that charged a mere fifty to seventy pounds per room.  Amazing value, with or without breakfast.

We haven't managed to have a holiday since 2009.  My husband lost his job last year (owing to the recession, even work for pipefitters became thin on the ground), and there is nothing left from benefits to enable us to save up for one.  We managed for one year on my sickness benefit alone because we were in hope that work would come along.  We spent several weeks living on nothing but cheese and onion toasties, I'm surprised we didn't get scurvy.  We were paying full rent and council tax, so after bills, we often had only 15 pounds left to get through the fortnight.  It was very hard and I urge anyone else trying to live like that to contact the DWP and see what else you're entitled to.  Apply for everything, don't just struggle on because of misplaced pride.  That's how you freeze and starve.  I'd forgotton about that.  We couldn't afford gas last winter, so we had no heating.  Even on those days when it was minus eight outside.  It was something like minus 2 inside.  Terrible, it made me so ill.  Anyway, I hope that maybe at the end of the season, we might be able to get away for a few days to a caravan or something similar.  Just getting away from London would be nice.  I only flew for the first time in 2007, and that was my first ever holiday in the sun.  We went on a cruise around the Med, which was an amazing experience.  I am trying to make my brain forget it ever happened though, because when I do think of it I feel nothing but frustration that I will be unlikely to ever do something like that again, be it because of money or ill health.  Now I'm thinking 'it's not fair', lol..

So today I'm going to try and enlist the help of some more friends to write letters in support of this tissue engineered tracheal transplant.  I'm asking as many people as can to speak with their MP and ask them to write to the Minister for Health to try and find out what the hold up is.  They see it as paperwork and I think it is time they were reminded that there are lives at stake here. 

Have a lovely day, and don't do anything I wouldn't!!

Tuesday, 14 June 2011

I'm back!!

Hi Everybody!!

Sorry for my prolonged absence, I am a somewhat technologically naive individual and I managed to get myself blocked from my own account, duh!  But, issue resolved, here I now am.

So what's new in life?  Well, I've had some good and bad news.  As far as my stenosis goes, the news is not good.  My entire trachea has become so damaged by scarring that it has turned to stone, making it incredibly difficult for my lovely surgeons whenever they have to stitch in a stent.  I suppose it was inevitable it would happen one day, but it is a frightening thought.  I mean, what happens when they can't get through the tissue there at all?...  The good news is that they have the skills, equipment and team they need to be able to perform the tissue engineered tracheal transplant but the Department of Health are being very slow about pushing through the paperwork.  I'm now in the process of asking my MP to intervene on my behalf.  I emailed him last week, and today I received a letter from his assistant asking for my address so that they can write to me.  Do you think this is good or bad news?  I just can't decide.

On a different note, the DWP are now harassing me to complete a form to prove that I'm not well enough to work.  Although it should be obvious that a person can't function without a healthy trachea, they don't yet seem able to grasp that fact.  I didn't choose to give up work, I was forced to!  I held two jobs in 2009, but was too unwell to maintain satisfactory attendance at either of them.  I shan't go on or else I will rant, lol.

And that's it.  other than that it's same old same old.  I'm getting a little older and a lot more tired, but I'm learning to live with that.  It's the boredom that drives you bananas, but I'm hoping you guys can help me with that.  I've taken up freecycling and crochet, and was debating basket weaving as a hobby also.  I instruct my husband on how to garden, and have successfully grown several batches of potatoes.  If the Government withdraw my money, I shall not starve :oD

Okay, that's enough for now, it's nearly 3am y'know.  I'm typing this by lamplight while my husband snores quietly in the background.  It's quite relaxing after a while, kind of like a cat purring.  My favourite time of the night is when all is quiet and I can hear nothing but the whistling in my ears.

Sweet dreams to all of you, wherever you may be X