Interview

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.

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

Stress!

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!

Fed up, Insecure, Neurotic and Emotional.

Hey,

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!

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.

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.