Friday, 29 July 2011

Tired and irritated....and that's just my airway!

hey there everybody!

it's been a while, hasn't it?  Sorry about that; i've been running here and running there, and then i ran out of credit!  So annoying, especially as i then got an email from my new employer, asking me to download and sign some documents, scan some others in and email them, and check and sign some other information.

in theory, none of that was too hard.  But then I got to the occupational health form, which asked me 'have you ever been infected with/colonised with MRSA?  unfortunately, i have.  Many years ago, whilst in intensive care, i was nursed in a bed next to somebody who was riddle with it, and a nurse failed to wash their hands correctly, thus giving me the infection.  I was lucky in a way; i was only ever colonised with it, not infected.  the result of an infection could have been severe.  it took me something like six years to find out why I was at the end of every theatre list while i was in hospital, and when they eventually told me why my nurse of the day had been treating me like i had plague, i went absolutely bananas.  i said 'look, you've been telling me for years i have an infection; now you tell me it's this MRSA.  what you're not telling me is what can i do about it?'  i was terrified, of course, that i was destined to have it forever.  But it turns out that if you wash your skin with Hibiscrub/clorhexidine skin wash, and you wash your hair with it twice a week, you use the mouthwash corsodyl twice a day (which i was doing anyway), and you use a nasal gel called bactroban, you can in fact de colonise yourself.  So I did all that, and i had three sets of clear swabs which made me officially clear of the colonised infection.  i also has three sets of clear swabs done at the doctors for work, as i was going to work in a hospital.  since then, i have had repeated swabs, and probably had something like a further twenty clear swabs. 

and then i read the occupational health form, which requires proof of the clear swabs.  But instead of wanting swabs from three or four sites, as is standard, they want swabs from five sites!!  So now i have to go through all the stress and worry of waiting for results again.

it feels like just as i overcome one hurdle in my dream to go back to work, another one pops up.  All I can do is to remain positive, and tackle them one by one.  If i do my best, then i am sure that all will come out fine.

i have a sore throat today, quite deep into my trachea.  I'm hoping it won't be anything serious, as i've been very fatigued with it too.  It could just be the mania wearing off.  I suppose that several weeks of only sleeping two hours a night, if at all , would leave anyone's body feeling somewhat exhausted.

my message today, therefore, is to look after yourself.  Take all your medications when you need to, do all the nebulisers/percussion/physio when you're supposed to.  Eat well, and rest when you need to.  And just put yourself, and your health, first and foremost above everything else.  there is no problem in life that cannot be managed, so be strong and keep focussed on what you want to achieve.  And all will be well.

take care, have a lovely evening, and see you tomorrow!

Friday, 22 July 2011

What a great day!!!

Hey there!!

I wanted to tell you what happened after my week of busy job interviewing.  Firstly, the research assistant job; I didn't get it.  But I didn't get it because there were two other candidates with more experience, and as the guy in charge said, there is nothing I could have done about that.  On the bright side, he then asked me if i had a few minutes to talk.  He told me that he and his colleague had really been very impressed by my enthusiasm and interest in the study, and he had spoken to personnel about me.  Personnel had told him that as he had interviewed me already for the RA post, he didn't ever need to interview me again, and he told me that he and his colleague are actively trying to create a role for me.  And he wants to keep in touch!!  He gave me his mobile number and asked me if it's okay if he rings me every now and then for a chat about work/the study.  So I feel happy about that.  Technically, I passed the interview.  And isn't it great for the ego that he wants to actively create a job for me?

Now, this leaves me with a dilemma.  I went for an interview at a children's hospital yesterday, and it went absolutely really well.  The two panel members were lovely, and the competency test was easy peasy.  The initiative questions needed a bit of thinking about, but having worked in hospitals before, they weren't too challenging.  Anyway, I came home on a high.  This morning, I was about the dive in the bath when the phone rang, and it was the interviewer, who said to me 'How do you think your interview went?'.  I thought, oh dear.... I said 'I am so sorry, I waffled didn't I?'.  I said that I felt I could have been more concise and more focused, but other than that I think it went well.  She told me that my competency test was outstanding, my initiative test was very good, and I interviewed well; they really liked most of my answers.  She then said that on the basis of that, they would like to offer me a job!!  I couldn't believe it, I said 'Oh my word, I did not expect that at all', and she laughed.  She sounded really pleased to be hiring me, and I really really hope that I don't ever give her cause to regret it.  I'm so looking forward to this job, I really am.  It would be nice if I could do this job well, and every now and then do a little extra work for the guy from the psychology department.  He's the head of psychology, lol, and between you and me, he's pretty easy on the eye!!

This week has been splendid, I feel full of peace and love and joy.  This probably means I'm manic, but I'm enjoying it.  I really do feel all warm and fuzzy inside.  Mental illness can sometimes be fun, so don't let anyone ever tell you bipolar is all bad.  Btw, i did confess my illnesses at the interview, so they are very aware of what they are taking on. 

I wrote all this, I guess, to let you know that sometimes, with enough will and desire to do so, you can find a way around the toughest of problems and do whatever you want to do.  My new job will be five minutes away from my ent hospital, so should I have a problem, I am well within reach of excellent care.  In emergency, the children's hospital will be able to keep me going until I can get to a general hospital.  There are very few problems in life that don't have a solution.  My husband has pledged to take me to and from work in the car, so I won't be getting overtired, nor will I be aggravating by back problem.  TS will not manage me because from now on I am managing it. 

I hope you all have lovely days, and thanks so much for reading.

Wednesday, 20 July 2011

It's a midlife crisis....

Lol, I just had to write again.  I am having such a great evening.  I have such lovely and supportive friends, who are all sending me messages of support for my interview in the morning.  And I was browsing the net while I was nebulising, and I came across a band called Ugly Kid Joe, who were huge in the early 90s.  Then after a few more clicks, I landed on Faith No More, who were also a 90s band.  Anyway, I suddenly remembered a song of theirs, Midlife Crisis, and when I went to Itunes, I actually had enough credit to buy it!!  And it absolutely rocks.  There are days when I love my life.

I'm all prepared for the morning.  Nail polish is removed, hair has been washed, documents are in my bag, and I know how to get to where I am going.  My outfit is a nice smart dress, black with flowers on, and a navy blazer with a flower on the lapel.  I'm wearing cute little brown suede ankle boots.  I will function best if I am comfortable, which is why I have bypassed the idea of pencil skirts and unflattering trousers.  I look great in this dress, which is not an easy thing to achieve when you are 17stone.   I gained the weight by taking Olanzapine, not by being greedy.  I'll tell you about it some time.  Anyway, as I said, I will feel more comfortable in my pretty dress, and as a result I will also feel more confident, and I will perform better.  I am optimistic that I will be offered this job, I just don't know that it's a great idea given my state of health.  But I shall worry about that later.  If I can pass the interview, I'm sure I can get help with the rest.

Can you believe it?  My shift key has suddenly come back to life.  Strange....

I'm going to kick back and watch a little TV.  Have a lovely evening, and have some fun remembering a great song from your past. 

I forgot to mention, my lovely husband brought me in an ice cream from the van that comes around every evening.  Lovely surprise, and he even got me two flakes!  Everybody needs a husband like that :o)

Sweet dreams, for I am a bed.....


good morning peoples, i hope you are all feeling wonderful today.

i am writing this from the comfort of my nebuliser,  unfortunately i woke up this morning absolutely full of gunge.  My chest is over producing mucous, and as fast as i cough it out, it builds up again.  quite disgusting it it, i must say.  lol.

i am feeling okay ish.  my chest hurts, obviously, and my stent is a little clogged by the mucous.  I also have a sore throat, which is unusual for me, so I guess i have gone down with some kind of lurgy.  i shall try and keep moving, and hope that it passes.

my car went in for a service today.  I sincerely hope it does okay.  i don't really know what a service involves, tbh, but i hope my car feels better for it.  later on, i have a meeting at the advocacy group where i sit on the committee.  it's usually fun; they have some interesting nibbles, and we thrash out some fun issues too.  i most enjoy the personnel aspects, but i find all of it quite interesting.  I can't say that finance is my thing, but i am always willing to learn.  everyone should do voluntary work, it's enriching for the soul.

i am not even thinking about my postponed surgery date.  I am annoyed.  It's not like i am going in to have an ingrowing toenail removed; it is my airway, and i need it to stay alive.  not that the pen pushers who run the NHS understand that.  i happen to believe a hospital should be run by caring professionals, not by managers and administrators and businessmen.  Sure, they have their part to play, but it should be in the background.  let the doctors and nurses look after the patient again, and you will see quality of care increasing beyond anyone's wildest dreams. 

Sigh, don't worry, I have given up ranting for a moment.  Right, tomorrow is my interview at a very well known children's hospital in London.  I can't wait, I really think it will be a positive experience.  I am not too sure what the test will involve, but the last test I took for an interview was fun, and I did very well on it.  So I shall try not to worry too much.  The interview will, I hope, go well, but there really is no guessing.  They will either like me, or they won't, so whatever will be will be.  I certainly am qualified for the job, so no worries on that part.  Yesterday was such a nice experience, that I really hope tomorrow doesn't ruin it.  It would be nice to be offered a job after all this time. 

Have a lovely day folks.  My nebuliser is finished, so I am off to greet the big wide world.  Oh yeah, and to cough a lot, lol.

Tuesday, 19 July 2011

Something strange going on...

hey there.

well, today has been a little strange.  This morning, i had a job interview which i feel went well, but i think it unlikely that i will be offered the post.  i am pleased to have been shortlisted for interview, so what will be will be, and all that. 

i came home to a letter from the lovely RNTNE hospital, which is where i have treatment for my TS.  I was supposed to be having surgery this coming monday but, you guessed it, they cancelled and rebooked for august the 8th.  this is my major pet hate.  I turned down a job interview because i was supposed to be having surgery.  and they gave me no explanation whatsoever.  If they had said 'sorry, the surgeon is unwell', or 'the theatre fell through the floor' or something, anything, i would understand.  but it seems that i am too unimportant to merit an explanation, so my frustrations go unanswered.  i am so pissed off about that job interview.  It is too late now for me to ask them for a slot.  so thanks to the ent hospital, i yet again miss out on an opportunity.  i hate them.  i really, really hate them.  i hate that my life is ruled by them, and i hate that they don't ever offer me an explanation when they mess me around.  They make living with this illness very very hard sometimes. 

Monday, 18 July 2011

Lost in sickness

Today, i shall write a serious post.  perhaps....

Sometimes, when you have a very serious and chronic health issue, it is easy to lose yourself.  Life becomes all about hospital appointments, surgery dates, scan appointments, GP appointments, medication, pharmacies, repeat prescriptions, nebulisers etc etc.  All of that leaves very little room for me, 'M'.

I fought hard over they years to find a way to exist alongside my illness. I can lecture on the upper and lower airway, I know my relevant medications and doses, and am able to outprescribe any junior doctor.  This is useful, it helps me know why they are prescribing drugs, and what they are planning to do next.  I never ask to read my medical notes.  I just read them.  I can even read upside down. 

But I have a life outside of my illness.  I am engaged in mental health advocacy.  I have guitar lessons with the lovely Nick.  I have a lovely little vegetable garden.  It isn't much, but it is mine.  When you ask my friends who i am, they will tell you 'she is loud, she had big hair, she will do anything to help anyone in need, she has a husky voice, she plays guitar, she likes to bake, she makes hats, she gardens.....'.  The very last thing they would say is 'oh, and she has a very serious illness'.  so it is there, but it isn't all that's there.

the moral of today's lecture is that if you too have a serious illness, and i hope you don't, but if you do, you must not let it win.  if you have a life outside of your illness, even if the illness eventually kills you, it won't win.  but don't let the illness take your life from you while you are alive.  As BonJovi once said 'i'll sleep when i'm dead'.

if you are ill, damn well fight it!!!!!

Friday, 15 July 2011


Morning all, I hope you are having a fine and lovely day.

I woke up early this morning, but wasn't feeling quite right.  Which is why I dozed in and out all morning.  I am awake at last, but still feeling pretty headachey.  I don't know if it's related to my chest infection, but I have been feeling very warm and just not quite all there for a few days.  I hope it passes soon, for I have business to deal with, lol.

I feel a bit disappointed today.  Sometimes in life, we put our faith and trust in people, and we respect them and their advice.  But then you find out something about them, and it totally torpedoes everything you thought or felt.  I don't quite know what to do with the information I was given, and in my present state, I am feeling a bit deranged and deluded, but in the deceived sense.  I made a decision when I was 22, that I would proceed with my life in a totally honest way.  I would not pretend to be anyone I wasn't, nor would I adjust my behaviour to suit other people.  And I would be nothing but honest about my illness.  This does have it's upsides; I no longer fear that anyone will 'expose' me for perceived past transgressions.  And I now have a reputation for being 100 percent open and honest.  People feel that they can trust me.  I take out my frustrations here, or in my diary.  I write a lot.  But most of it is just unloading.  Very little of what goes in my diary reflects real life, but what I write in my Blog does.

So my point is, this is me.  I am me.  I am 31.  I have three spinal conditions, which will eventually result in me being paralysed from the waist down, and most likely I will be douby incontinent.  I do not look forward to that happening, but I try and accept that it will come.  I have subglottic tracheal stenosis, which extends from the lower section of my vocal cords downwards, completely filling the entire length of my trachea, if left unlasered it would very quickly be fatal.  My trachea is dead.  The surgeons describe it differently, they say it is 'necrosed'.  When they put the stent in, it takes three times longer than it used to because the scarring in my trachea has turned the tissue to stone.  I find it terrifying.  I am now too unwell for a tracheostomy to be supported.  I tried living with a T Tube, but again, that had to come out.  I look absolutely fine from the outside, but my insides are a mess.  As a result of all the infections and serious illness, ventilation and surgeries, I now have scarring on my lungs, and what they believe is bronchiectasis.  They suspected it because I have a problem with producing very thick and very sticky mucous.  When this tried to pass through the stent, it became lodged, dried out and stuck.  They call this 'crusting'.  It sounds simple, but gross, but this becomes a problem because the more build up there is on the airway, the smaller the airway is.  And I have suffered a couple of respiratory arrests because of the blockages caused by thick mucous.  It was terrifying, and I still have nightmares now.  Who wouldn't?

I am sick of having to prove how unwell I am.  It makes me mad that this society demands proof.  I think we should all treat people with the respect and individual consideration they deserve, but nobody does.  I had some woman push me over because she didn't believe i needed to sit down.  I collapsed, with some help from her hand.  She was duly arrested and cautioned, but this is an extreme example.  If everyone could just take a day to think about what other people around them live with, we would all feel pretty humbled.

Sorry, my head feels a bit wooly, and I'm not sure how much sense this is making.  Take care and have a lovely day.  I will see you tomorrow.

Thursday, 14 July 2011

Interviews galore, lol

greetings.... sorry, my shift key has died again.  we shall have to plug along as best we can...

so, today was an interesting day.  I had a great night, owing to the fact that when i took my pregabalin, the pain in my leg miraculously vanished.  oh my word, what a relief.  i found myself getting quite giddy from the lack of pain.  Anyway, that feeling continued into today, and i awoke feeling quite elated.

i had an appointment with stormin norm, which was quite enlightening.  he had his student, laura with him, and he was quite happy to sit back and let her take control.  so anyway, we discussed what happened on tuesday, and he told me it was like watching a very fast tennis match, hehe, dr d was very quick, so we had some jokes going on that were so quick even norm couldn't follow all of them.  he persisted in thinking that 'as you like it' was a quote from hamlet, and didn't believe me when i told him it was a play in it's own right.  oh dear.  so anyway, i spoke with him about the blood results, and my concerns about taking yet more poisonous lithium.  everybody seems convinced that i am hypomanic and getting higher by the second, but i feel fine.  wonderful even.  it just feels like they are all trying to kill my buzz right now.  c'est la vie.

i accused norm of being a nine to fiver.  i told him that i had called him time after time to get my blood results, and i would always get a message saying he was busy, or would call me back later.  it was something of a frustrating experience because at no point did he ever actually return my call.  I had to literally turn up on the doorstep looking deranged, in order to get an answer.  i was so worried about my liver and kidneys etc, and my heart in particular, but norm was just worried about getting home on time.  so i put this to him, and all he did was laugh.  it seems, my friends, i have his number.  so the moral of the story is remember, it's your life these people are dealing with, but to them, you are just another case.  they don't care a fig what actually happens to you.  so look after your own interests, and make sure they give you the answers you need.  And don't be afraid to ask questions that they find awkward to answer.  Be straight down the line, be honest, be transparent, and you will do fine.  whatever you do, don't rely on these people.  Because when they go hom at 5pm, they won't give you another thought, however distressed you may be.

i have another interview, this time for a ward aministrator job at a big hospital in london.  i am thrilled.  it would be nice to get back in the game, and if i could find a sympathetic enough employer, my life would be a lot easier.  so we shall see, eh?

my airway is still suffering from this mysterious throat infection, and i am dying for it to break, quite literally.  i need this to be better by monday, because i do not need to be contending with a lack of available air as well as interview stress.  when i go for jobs, I never cover up my scars by the way.  i believe that they are badges of honour, a sign that i have lived through what i might only describe as hell.  it was very painful for me to have acquired scars like that, and I reaslly don't think the pain of people looking at them really compares.  i am alive because of those scars.  If they don't like looking at them, then tough!!  wear your scars with pride, my friends, you have nothing to be ashamed of.

have a lovely evening, speak soon.

Wednesday, 13 July 2011

A new horizon....kinda...

Hey there...

Well, yesterday I had an appointment with my psychiatrist.  I actually felt okay that day, kind of like my usual self, but with the volume turned up to 20, lol.  So, we went through the motions of a normal consultation.  I told him I have had some bad days, but mostly, I am okay.  He's always very interested in my physical health issues, so we discussed the tracheal transplants that have been taking place all over the world.  I mentioned my frustration that they are still delaying it here.  Then he said something that referenced a Shakespeare quote.  He told me that he wishes to increase my lithium to 800mg a day, and asked what I thought.  I replied 'as you like it...'.  It took him a couple of seconds to process, and then he looked up and started to laugh.  He had a lovely laugh; it starts in the eyes, and spreads outwards.  It truly is pretty contagious, and I started to laugh too.  Only I then got seized completely by laughter, and couldn't stop.  Back and forth it went, and eventually I managed to stop.  But I must say, this won't have helped me in my struggle to appear sane.

Anyway, I had, as per usual, been up all night.  So having got my stressful appointment out of the way, I went home and snoozed for a few hours.  I was woken my the phone ringing, and it was a guy calling to tell me that I have been shortlisted for a research asst job I applied for, and I have a lovely interview on Tuesday.  I would love this job.  It's interesting and varied, I would get a chance to use my degree and challenge myself to achieve new things.  And basically, I would be paid quite handsomly for doing something I love.  Which is all that anyone wants from life, isn't it?

My airway is being difficult.  I have had this annoying chest infection, that has been lingering for quite some time.  It's awful, it's basically a whole lot of mucous that has settled into the sacs of my lungs and gone very thick and gluey.  It takes a combination of chest percussion, medication, and nebulisers to loosen it up.  And still it isn't coming easy.  This is one of those days when I find myself chained to the nebuliser.  Normally, I would be feeling very distressed, very upset.  But probably as a result of the increased lithium, I just feel somehow blank.  The emotions are in there, so my brain tells me, but they are struggling to overcome the giant chemical barrier that the lithium creates.

Speaking of lithium, yet again, my blood level is point 33.  Ooooops....hehehe

Have a lovely day, my friends, and be safe.

Monday, 11 July 2011

Good morning lovely people

good morrow folks,

just been to the gp to get all my reports sorted out.  he was very helpful, and i am delighted to say that i can now send off this blasted form, lol.

my leg was excruciating in the night, and somewhere along the line, i managed to overdose on opiates.  i don't advise you ever do that, btw, i felt dreadful, and still do.

today life seems strangely normal and sunny.  life really is very beautiful sometimes, isn't it?

Sunday, 10 July 2011

which came first?

okay, i've had a think about this.  There are some people who believe that when you visit a psychiatrist, you must do as they say, for they are the expert and we are mere mortals.  but i do fundamentally disagree.  Let me give you an example; this terrible pain in my leg.  nobody denies it's existence.  I visit my GP regularly, mainly to review medication and discuss and other options.  i get 110 percent effort from my GP as he strives to ease my physical pain.  i've been seeing a psychiatrist for years.  Sometimes i am distressed, sometimes i am on top of the world.  The key point really is that i am mentally unstable, no jokes intended, and i need their help to stay on the straight and narrow.  To phrase it differently, i see the psychiatrist for my psychic pain.  but they have a different approach, which is 'if you don't do as i tell you and take the toxic medication like a good girl, then i shall declare that you bring all your troubles upon yourself and are beyond redemption'.  and as far as i'm concerned, god is the only entity who can judge whether i can or cannot be saved.  I don't need a psychiatrist to pass judgement, i need a psychiatrist to put all of their efforts into alleviating my psychic pain.

i hope that made sense, it's been on my mind all night.

how are you doing otherwise?  i'm watching the tudors box set, having been up since 5am after only 4 hours sleep, i now feel a bit wild and terrible.  this does not bode well for a good night's sleep, i fear.

tomorrow is my judgement day.  I have to see my delightful GP and organise some letters, mainly i need a report for the lovely people in Switzerland, but in can do just service for the esa report too.  and i shall go back to romford CMHT, perhaps with a clearer idea of what i want to achieve.  And hope for the best.  I need my lithium levels and the blood results, and i need a report from them for esa too.  This may prove difficult, as storming normal is a slippery bugger, mwahahah.

goodnight to all, and goo luck to friends having surgery tomorrow.  Trust in your surgeon and believe that he will cure you and i tell you this, he will fight tooth and nail to make you well again, whatever that might mean to you.  Just talk to him, withhold nothing.  He cannot do a thing for you if you don't tell him honestly how your body is doing.  Sorry, rambling.  goodnight to all, and sweet dreams. 

Saturday, 9 July 2011

The truth sometimes hurts; may trigger depressive thoughts.

i just wanted to say thanks for all the thoughtful/helpful comments, both public and private.  it's true, all they can really do is diagnose a mental illness and give you pills to control the worst symptoms.  and the rest is up to you, isn't it, you have to let the pills work and when you're thinking clearly, do the healing from within.

yes, the worst mistake i made was to stop taking the lithium.  it wasn't a spur of the moment decision, it was a consdered if slightly disordered result of my delusional belief that the lithium wasn't what it was meant to be.  then i got it in my head that they were trying to poison me.  then my husband started to go on about how he didn't like the person I became on medication.  and whilst taking it, all i could do was sleep.  i felt so pressurised to just not take it.  So i caved in and gave in.  And i stopped.

so then what happened was i noticed i didn't need to sleep as much.  and then, i didn't need to sleep at all.  My typing got faster, and my writing more prolific.  i became more creative, and began to start project after project, but rarely managed a chain of thought or concentration for long enough to finish something.  but at that point, i was enjoying life.  And then the voices start.  the delusions creep in and suddenly i'm in this pit that feels totally out of control.  And no doctor seems to understand that even though i look moderately high, i actually feel desperate.  it's a different desperation to that you experience in depression.  it's wilder, more unstable and more out of control in an aggressive and agitated way.  I start to get angry at people who are being inconsiderate.  i talk out loud when they walk into me.  i growl at the person who pushes their trolley into my legs.  i growl at the people who let their kids run around and grab at my shopping on the conveyer.  my clothing gets 'bizarre', my hair gets wild and out of control.  but still the outside doesn't reflect the inside.  i end up with my head full of so many thoughts that i cannot grab hold of one and make it sensible.  my head aches all the time, and i walk around talking to people that only i can see.  Talking out loud is the only way to make enough room in my head for my brain to work.  but when that doesn't work, the darker voices speak out.  they tell me i am a prophet, a trailblazer.  That i must stand up to these people because all they're doing is relentlessly poisoning people.  they're charlatans, but they're everywhere.  And omg it just goes on and on and on.  And then it starts to tell me 'just get it over with'.  one handfull of drugs, one quick swipe of a blade.  and it would all be over, my head would just stop hurting.  But inside all that noise, i am still there somewhere, screaming at the other voices 'NO'.  but sometimes i find it hard to be heard.

i tried to ask for help from the professionals because i need them to equip me with the skills to give that inner voice a megaphone and make it loud enough to interrup everything else going on.  I don't have those skills at all.  It's a genuine request for help, although i could understand the frustration of someone thinking 'here we go again'.  To be honest, i do that myself, we are all only human.

i don't know what to do.  One minute i'm sky high and doing the most wonderfully creative things.  I can do everything and anything.  but the next minute i'm wild and desperate, blotchy and covered in tears.  And i cannot pick out the thought from the mess in my head that will tell me why i'm crying, or what i need, or, more importantly, HOW TO MAKE IT STOP.

and that is where the temptation to suicide creeps in.  one hand points the knife at my throat, and the other pulls it away.  Even at the point when i was jumping off the chair with a noose around my throat, one leg went, and the other fought to stay on the chair. 

i know this won't make sense to a lot of people.  I'm just thinking out loud.  but if you could bring yourself to say a prayer for me, i would appreciate it.  i do draw strength from the Bible, and i believe in the power of prayer.  when you have nothing else in life, you always have the power of belief.

SO what do i do next?  i can't make my brain accept that it needs medication.  It just shouts back at me that they are trying to stifle my genius.

i know what tipped me over the edge, so to speak.  the knowledge that i will be in pain forever.  you know how in the spine, there are three main bony structures?  When you look face on at someone's back, these run down the centre, and along either side.  Well, there is damage to all of them, and it is that which means no surgeon will operate.  So it's another one of those things; how am I to accept that this is forever??

that's enough for tonight, i think.  but take care y'all.


it's been possibly one of the worst weeks i have had this year.  And that's saying something.  the trouble is, i'm one of those people who looks well when i'm not, and looks together and positive, when actually i am feeling desperate and completely without hope.  and so it goes on.

i have been trying to get hold of my care co, stormin norm, all week.  As per usual, whenever i call i get a relayed message telling me he's busy, or with someone else.  only this week there was a new angle he played; he has a student.  Now, as you might have read before, i don't mind students as a rule.  I think that they have to learn somewhere, and where better than with real patients?  However, this was different.  i was not at any point asked if i would mind seeing a student, it was just presented as a fait accompli.  And this student, laura, appeared to have been debriefed about my life in total.  the trouble is, again, the computer system they use; rio, is packed full of inaccurate information.  So instead of getting my history from me, she got it from a series of notes that are wrong.  so i feel a bit angry and let down.  because now, whenever i ring my care co, i get laura the student.  and sometimes, you need the organ grinder, not the monkey.

i need a report for my ESA form, which i have to send in by friday.  and laura can't write it.  I need the results of the blood test I had taken on Monday.  And laura isn't allowed to give me an interpretation of those.  I need the dose of my lithium reviewing.  And bloody laura can't do that.  And i need to talk to somebody about why i have a repeated urge to cut my own throat.  And again, bloody laura would probably freak out the minute the knife appeared.  I don't want to do it, for the record, i just feel as if i am propelled by the voices in my head to do it.  i supposed it might speed up the tracheal transplant.  i have a lovely little knife, it's very shiny and tremendously sharp.  And should the police ever read this; i will never harm a hair on another human being.  All of my destructive voices want me dead, noone else.  but basically, i need bloody stupid norm, and he has chosen now to start playing silly buggers.  Great timing fella.

my airway is full of gunge and goo, and i feel just lousy.  I don't know if my mind is influencing my body, or vice versa.  it's difficult, isn't it?

i asked for help, btw, several times.  It seems that monday will truly be the day of judgement, won't it?

Thursday, 7 July 2011

Contra indications

Contra indications on medications always amuse me.  it's basically the chemical equivalent of 'the left bit's connected to, wrong bit'.  what this means is, you take some drugs sometimes that unwittingly do your medical condition harm.

for some years, i was prescribed amitryptiline for various reasons.  And i found our yesterday that it's a drying agent, and really not good for people with breathing/lung problems.  so i thought y'all should know.

sometimes, we deliberately take drugs in the hope they will do us harm.  like the truckload of medications i just took.  i know that it's bizarre, i spent half the time fighting for my life and the other half playing russian roulette.  but there comes a time when a person has enough, so if tonight is my night, so be it. 

just in case, i wanted to post and say, with something like TS, support and community are important.  so please, whoever you are, try and reach out and make a connection with someone else.  I did, and it got me the best friend i could ever pray for.

night night and sweet dreams

Another bit of rotten news

hello there, sorry about the lack of appropriate punctuation in the following post, my shift key has given up the ghost.  won't be long till the laptop follows suit.  that was not, however, my bad news lol

so, yesterday i had an appointment with the pain specialist at queen's hospital in romford.  he was a nice enough man, but one of those doctors who believes that the patient is ignorant and the doctor is all powerful.  I had hoped that the doctor would be able to offer me some insight as to why i have been in so much pain.  i have a long standing issue with my back, and a terrible nerve/muscle/bone pain in my leg.  also, i have a sensitivity to pressure, which causes cascading nerve pain whenever people touch me.  so i had hoped that the doctor would be able to give me some insight as to why these pains are getting worse.  instead, he delivered a monologue, which i did my best to interrupt and ask questions, and he informed me that he would be giving me injections in my spine and my left leg, without any kind of sedation, and there was nothing else that could be offered.  according to my MRI scan, there is damage to the centre of my spine, the facet joints, the nerves and the discs. And because the damage goes through every structure in the spine, there is no chance of any surgeon ever performing spinal fusion, or any similar operation.  what that means to me though, is that the excruciating pain that i feel on a daily basis is here to stay.  and that blew my mind.  I came out of the doctor's office, and totally fell to pieces.

so i somehow ended up in A and E, where i saw the duty psych liaison.  my history of bipolar disorder and suicide attempts was enough to get me an audience, apparently.  so in came this guy, i don't know if he was a doctor, nurse, or social worker, but whoever he was, i could barely understand what he was saying.  the upshot of it was, i have a psychiatrist, whether he is here at the moment or not, so they were unwillin to intervene.  so i laughed and said, 'why am i not surprised?' and staggered home.

so when i got home, i went through the motions of dinner, nebuliser, medication, bed.  but i just did it all in a kind of haze.  i think that i've reached the limit of bad news.  my brain just couldn't handle any more. 

today has been interesting.  i woke up late ish, and i expected to find a missed phone call from my care coordinator regarding last night.  and you know what?  not a sausage.  Nothing.  nice to know they care.  when i came out of the pain specialists office i was genuinely feeling very desperate.  and i asked for help.  and got almost none.  but nobody can say i didn't try now, can they.

i have to say though, that the nurse who was on the reception desk was very, very nice to me.  She looked genuinely concerned, and she managed to get me through the absolute witch who was on triage, without me having to say anything much.  she also sent somebody after me when i left in disgust to get the bus home.  so thank you to that nurse, whatever her name was.  I'm sorry i don't know it, she deserves to be recognised.  And the receptionist too was lovelty.  Shame the rest of the staff lived up to the reputation of the hospital.

And as for my TS today...  it's okay ish.  my chest is a little tight still because of my allergies, but i think it's starting to loosen up a little.  it's horrible when you try and breathe and it feels like you're wearing an iron vest that's three sizes too small.  My lungs don't expand the way they should because of years of damage from infections, and the very thick mucou produced because of the bronchiectasis.  However, the carbocisteine has made everything a lot easier, so thanks to dr h again for prescribing that.  as i said before, he may be a little bit mental, in a nice way, but he knows what he's doing. 

i hope that today will be quiet and hassel free.  i actually prayed this morning for no more challenges to come my way until i have the strength to cope with them.  i really hope that you all have a lovely day,

take care x

Sunday, 3 July 2011

To get to the heart of the story, you have to go back to the beginning...

thanks to the tudors for that quote...

today has been hideous.  it started last night.  i was sat here, tapping away, and all of a sudden the biggest bug you have ever seen in your life fell off my head and on to the laptop.  I am telling you, it was huuuge...  so after banging around for a while trying to kill the bugger, my husband started yelling... again.  things are not going so well in that sense.

i really don't think he likes me anymore.  It's been a slow burn kind of hate.  it began when i fell ill after surgery a couple of years ago, and i ended up in hospital for five weeks.  And then i had to go back for another few weeks.  And he was at work, and not enjoying it.  Anyway, he came to see me one day and announced that he wouldn't be able to continue working unless we got a new car.  This was shortly after he found out that i could trade in my dla for a car.  so he banged on and on about how the car we had could never be fixed, and it was useless etc.  which upset me, because i spent half of the money my grandad left me on it...  so eventually i got him his car.  but by then, he hadn't been to work for two weeks.  There was a saga over the cars.  I picked one, which he then stamped his foot about and said 'omdb, i am never driving that'.  so we ended up picking a huge van like thing.  Anyway, the dealer kept ringing us to put back the delivery date, and this went on for three months.  so eventually i took the call and said 'thanks, but no thanks'.  So we went just down the road, and got the car that i'd chosen in the first place, which husband then declared he wanted to begin with.  And suddenly it was all my fault that we hadn't got this car months ago.  which made me seethe with anger.  what a waste of money.  in the meantime, husband fixed up a deal with some guy in the pub to sell my original car for 150 pounds.  It cost me 5000.  i totally got screwed.  But what could i do/?

anyway, husband kept making up excuses to not go back to work, which ranged from 'i need a new cSCS card', to 'it's the wrong cscs card', to 'there isn't any work' to 'i need to be here to look after you'.  what i think happened is he got sacked for having a go at his manager, but at no point did he tell me what really happened.  So anyway, i ended up with this car which is costing me a third of my income every month.  And my income is tiny.  Ask anyone on benefit, it isn't huge.  and i've also been left with a seething resentment about that damn car which he insisted he needed for a job he knew he would never go back to.

things went from bad to worse.  he doesn't ever want to spend time with me.  he's always involved in doing things for other people, or watching something on the telly.  and when we do visit people together, he spends all his time telling them about how he does everything for me, because i'm so terribly ill.  He makes me feel like a fucking ruin of a person.

my illness has ruined my marriage.  my husband has accused me at various points of pretending that i can't breathe, or pretending i'm in pain, or something similar.  He doesn't understand at all.

i don't think anyone around me does.  i feel as if everything is becoming dark and lonely, and i don't know what to do.  i have one voice in my head telling me to cut my losses and leave him, but i just don't know where to begin.  The other voice in my head wants back the man I fell in love with.  The one who worked terribly hard at everything.  The one who cared about me.  the one who cared about himself. 

sorry for going on.  I'm a little upset and terribly lonely.   my neighbour committed suicide for exactly those reasons.  i found out that she slit her wrists.  She would have had to really want to die, because i tried it and it's bloody painful.

i shall try and cheer up for the morning.  I'm going to go and see dr h in the morning and ask for something different to try and help me sleep.  The temazepam had very little effect.  it just made my pupils dilate, it didn't even relax me.   it's shocking that i've been through 28 zopiclone and 28 temazepam in a week trying to sleep, but needs must i suppose.  i lay up all night worrying otherwise.

my airway hasn't been so bad today.  my chest is a little rattly and i've been coughing up all kinds of junk.  but other than that, it's trotting on.

hope you're having a nice day.  So sorry for offloading on you...

Saturday, 2 July 2011

Tracheal stenosis is ruining my job prospects.

Hey there!

This morning I received two letters, one for a hospital appointment with the pain management specialist, and another for surgery with the tracheal management specialist (haha).  Unfortunately, both are slap bang in the middle of the course for which I had an interview on Monday.  I've decided not to get depressed about it, I mean, it isn't the first time I haven't been able to do something work related because of TS.  Life goes on and all that, and I shall just keep applying for other jobs.  And one day, my perserverence shall pay off, and I shall get a wicked, high paid job, with my own office and water fountain, hehehe...

The surgery is to have a look at my tracheal stent (obviously).  This one has been great actually, thanks to the delicate hands of a very famous professor (thanks Prof B!!), but about a month or so ago, I started to feel like I had a lump in my throat that kept moving up and down.  So I asked them to have a look at it, but nothing was visible with the nasal microendoscope.  So he said he would book me in for surgery and have a tug on it, see if it moves.  I had this mental image of all these eminent surgeons playing yoyo with my stent, mwahahaha...   Vivid imagination like!!

I don't think I ever explained what it's like having surgery at the place I go to in London.  I wouldn't say the experience is overly traumatic any more.  I get treated like one of the staff, which is good in some respects, but I suppose bad in others (I mean, who wants to be ill for long enough to become known so well to everybody who works there).  Even the lovely welsh head of maintenance comes and says hello, and I get a hug and a peck on the cheek from a few others.  They're all very nice people.  Back to my story though....

The worst thing is having to get up at 5am to get nebulised and dressed, and on the train in time to be there for 7 30.  Usually I have to fight with the front desk staff to get up to the ward, but I find that threatening to just sit on the floor and stage a protest usually works!!  Once on the ward, I find myself in my own room or cubicle with a closing door.  This has many benefits.  One is that it screens out much of the noise of the ward.  The second is that I have my own TV!!  And the last is that I get to open the old window at full whack, and feel the breeze.  Hospitals are always too warm.  Anyways, then the doctors start to appear.  The anaesthetist will come wound and ask about previous surgeries.  This always makes me giggle because their eyes widen when they see the six files containing my notes.  If you put them on a table at waist height, they come above your head.  What a waste of trees....  One of the consultant anaesthetists started work there the same year I first went (1997!!), and she is just lovely.  She doesn't like doing anything to cause me pain, so there's always a bit of anguish on both sides when the needles are going in for the anaesthetic.  But once the needle is in, she delivers just the nicest sleep in the history of medicine.  So to her, I am eternally grateful.  She knows that I ramble when I'm stressed or nervous, so she listens and answers even.  It's nice when people understand you.  She's been putting me out for so long, that she knows every twitch and reaction from me, and can respond accordingly.  I value her beyond belief. 

Back to the ward.  Usually, they send a junior doctor around to clerk me.  They explain the procedure, and the risks and side effects.  Which again makes me laugh.  I've had stent changes over 80 times.  I can quote the risks and side effects and possible complications back at them, chapter and verse.  This is because I've suffered most of them at some point!!  Swelling, broken teeth, bleeding, migration of the stent, possible need for a tracheostomy, difficulty breathing, death...  I would say that death isn't so much a risk as an end result, lol, but that's Londoners for you!!  Now that the registrar has been there for a while, he generally comes to see me too.  He has the same name as my GP, but as he's a surgeon, he's a Mr H, not a Dr.  He's very nice.  He comes across initially as the kind of person who wouldn't blink if he were caught in a major disaster (probably quite a virtue for a surgeon), but he is the most amazing person to have on your side if you're in trouble with your airway.  If he says he will do something, he does it.  Which is just what you need when you have a chronic illness, isn't it?  And he's not that bad to look at either, lol.  He has a posh public school accent, and very shiny shoes.  And he isn't too big and important to say hello when he sees me.  And for that reason, I adore him.  Not in a sicko obsessed with my doctor way, just in a 'I appreciate actually being treated as a human'.  I will be very upset when he leaves and I have to 'train' a new one!!

After the clerking, one of the nurses will come round and measure me for stockings, take swabs to test for MRSA, fill out their paperwork, measure and weigh me, etc, etc....  These nurses are (mostly) absolute angels.  Again, the ward sister has been there since the first time I stayed, and she is the most reliable, skilled, intelligent and sensitive nurse that you could ever hope to have.  She doesn't tolerate time wasters or attention seekers, but if you are genuinely in pain or upset, she will stay with you and talk to you, or go and sort the problem out.  Whatever you need, she will do it and more.  I once had a terrible infection, and she'd read some research about manuka honey.  She got hold of this (very expensive) medical grade honey, applied it to my neck (the skin was turning to liquid, it was gross).  Anyway, while the infection was tackled on the inside by the antibiotics, it was most definitely tackled on the outside by this honey.  When the dressing came off, they were black and covered with necrosed skin.  It worked a treat.  All thanks to the lovely sisters intelligent research.  She probably saved me from losing yet more skin.  Even now, there is a dip in my neck where the skin loss was most severe.  If I could give this sister an award, I would.  If I won the lottery, she would most certainly benefit.  She has held my hand while I cried, fed me when I was too ill to do it for myself, washed and dressed me when I was too sick, organised 24 hour nursing care for me when I was psychotic (another story...).  Nurses in London are underappreciated.  But I really do value mine.

Anyway, then eventually a phone call comes from theatre, and up you go for your operation.  You walk to the lift with the poor nurse, who always struggles to carry my notes, lol.  The lift goes up to theatres, and opens just opposite the staff room.  All the porters, doctors and nurses always give me a wave.  I know most of them from years gone by.  We've been through a lot together, without a doubt.  And from the lift, I turn left and walk to the last theatre on the left (the laser suite), where I normally go into the little anaesthetic room and lay down on a trolley.  There's a lovely male nurse up there who usually strokes my hair while they're putting me off to sleep (because he knows it relaxes me).  And he talks to me about beer and football, and his missus.  And the doctors do their thing.  The needle goes in, the mask goes on.  Gradually the oxygen is replaced by the anaesthetic gases, and then they inject the actual anaesthetic.  First, a little Fentanyl.  It's like having ten vodkas at once, but without the nausea, lol.  They let me enjoy that for a minute or two, and then they inject the hard stuff.  It's usually a big old injection, about half the length of the lower part of your arm (the needle is tiny, remember, I'm just talking about the fluid).  And within seconds, you start to feel drowsy.  I prefer to go off to sleep slowly, and wake up slowly, so I always get the drug over a few seconds, not all at once.  Anyway, as the drug goes in, you feel it in the back of your head.  It kind of creeps up the back of your legs, then your arms, and then your spine.  And then it all goes a bit blurry and distant.  At this point I usually say 'thank you for looking after me, have a lovely day', or 'I'll see you later', or something inane, just to hear myself slurring, lol.  Plus it's nice to say thank you to theatre staff.  They usually get ignored!!.  And then it all goes black.  And literally seconds later (it feels like anyway).  You wake up. 

See, nothing traumatic about it at all!!  I will finish my wittering about surgery later.  Hope I haven't bored you rigid.  Have a lovely day XX

Friday, 1 July 2011

Life goes on.

I've been sat up for hours trying to drug myself into sleep.  My lovely and slightly mental GP thinks I might be getting a bit high, and said to see the psychiatrist.  I tried, but they changed my appointment three times, and now it's some time in August.  I know it's only a few weeks away, but that's a long time away when you're only getting two or three hours sleep, if that.  Dr H, the GP, gave me temazepam to try and help, but honestly, I'm not feeling any effect from them.  What is wrong with me?  Manic depression is miserable.  I feel all agitated.

And to cap it all, my chest is playing up.  It really, really hurts.  I think that hideous infection is back.

Did I mention that my lovely neighbour slashed her wrists and died a sad and lonely death.  Noone realised she was gone, and she lay on the floor for days before they found her.  I pray that she's now found peace. 

I'm trying to make a battle plan to attack my TS.  My surgeon, Mr G S, mentioned a procedure they might be able to do before the transplant.  Hopefully, he will get the go ahead and just do something to help me.  I'm getting so desperate. 

I miss my old surgeon, DH.  He's a big important professor now, but he was the most lovely chap.  And still quite handsome, even for an older fella, lol.  I had a bit of a crush on a surgeon called Alisdair.  Oh my word, he had that silver fox thing down to a T.  There are advantages to being ill.  You get to drool over handsome doctors hahaha.

Nite nite, good breathing, and sweet dreams X


I may have made a bit of a boo boo, and I hope you don't mind me sharing.  It started with the terrible pain in my leg, for which I took some oxycodone.  It didn't work at all, so I then too more oxycodone, some carbamazapine, pregabalin, zopiclone and temazepam, thinking okay, I'll sleep it off.  But I couldn't sleep, so I took some more zopiclone and temazepam, and a bit more oxycodone.  I am going to be absolutely sick as a dog in the morning, but if it helps the pain go away for even five seconds, I shall be happy.

Speaking of which, I got an appointment with the pain clinic on wednesday, completely out of the blue.  Thank you muchly to Dr H and his delightful and politeful letters, lol...

Night night all.  Unsurprisingly, I am a little drowsy.