Where I am at.

Why is it, that I can always think of loads that I want to say and it sounds so eloquent in my head. Yet I sit down in front of a computer, and my mind draws a blank.

I have always held in my mind, that my breathing was going to get fixed. That one of the major surgeries would eventually be the one that worked. That perhaps I wouldnt know it at first, but that I would get better. I have always had in my mind, that things were going to get messy, that I something could go drastically wrong and so I have been prepared for that. To prepare those close to me, for the possibility of my story not having the happy ever after fairy tale ending. And yet, inside, I have held it my mind that I one day I would be able to breathe.

The fashion at the moment seems to be to make a bucket list and whilst I have things that I would like to do, rather than it being a bucket list, it has been a when I can breathe list. It contains all kinds, from the fun things like kite surfing and marathons, to the simple things like living independently, graduating and holding down a job, not to mention goals, such as climbing the local cathedral tower and getting to the top of Monument in London.

But as time progresses, the chances of this get smaller and smaller. Each major surgery, leaves me feeling weaker and less able to breathe. The restrictions grow, the treatments become more and the future begins to look a little darker.

Right now, I am having surgery every 3 weeks. Only smaller ops, laser and dilation, but still regular admissions and regular damage. I still have a trach in, but my peak flows, sit around 110-150 lpm. When at home, I run an average of 2 hours of nebulised medications (6 different ones twice a day) and extra when I need it. I am attached to a hot air humidifier for about 9 hours a day and take around 30 tablets in addtion to daily injections. But, its not enough to stop the deterioration. These days, I have an almost permanent stridor that makes me feel rather self conscious.

I go to theatre on a Tuesday, by the sundayI begin to feel the restriction again and by the time I next go, even simple movement around a room leaves me feeling out of it with major headaches.

Between that, I have regular courses of antibioitcs, both in tablets and IVs when needed. The problem with IVs at the moment, is that I have very poor venous access. This means that I have to stay in hospital whilst on IVs, so they can keep my access open. A course of IVs is usually 2-3 weeks, but I go to theatre every 3 weeks. It makes things complicated.

At present, I am taking a course of antibiotics via tablets, given them straight after theatre as well as a heap of extra physio and nebs, but by the time I am off the tablets for a week, my lungs begin to kick off once again. I cant put the IVs off for very much longer.

Right now, I am running very low on options. They cant keep taking me to theatre every 3 weeks, but the airway wont stay open on its own. At some point, the doctors will need to admit defeat.

I have faced my own mortality on a number of occasions and whilst I am not scared of death, I am petrfied of dying. I remember moments of sitting in hospital, gasping for every breath, fighting to get the air in and just feeling pure terror. Tears flowing freely as I begged for help, all of this in hospital settings, were help is on hand and you can still have faith that the doctors will be able to correct things. But to face this with the stark reality that there is no help coming, that the fighting for each breath, is the easy bit, because the alternative is not breathing and not existing. That is what scares me. I dont want my family to have to comfort me, I need to be strong for them, especially if the end were to draw near. It would be my final act, to go out brave, a fighter to the end they would say. But the fear grips me, It reminds me of all the previous times and pretty soon, the fear bubble ups and I feel it sink its teeth into me like a snake that wont let go until it wins.

And that is what sits in my mind, it what always sits in my mind. It is what has spurred me on through the big ops, given me the kick to keep going even when the odds are against me. Fear, like that feeling when you go over a hill and your stomach takes a few seconds to catch up. It grips you and takes you down with it. Leaving you nothing but a moany sulky brat, when you long to be the grateful brave warrior.

I guess that I just wanted to put that out there. I have nothing to fear but fear itself, but this fear is a great one and not something that I can see myself getting over before I need to.

Crippling

Its nights like these when I can feel myself becoming more and more miserable. I wouldnt say depressed per se, though I guess it probably is to a point. I still get enjoyment and such, but some nights, the lows can be crippling.

Breathing is getting harder. Every morning, I wake and my chest muscles are so sore, from lying in an odd position and having to literally suck the air into my lungs. Yet I am so exhausted, that I sleep through it. I do wake myself, several times a night, with the noise of crap blocking more of my airway.

Simply, walking from kitchen to living room, right now, takes me about 5 minutes rest to catch my breath. And sleeping, I average about 11 hours a night and then days like today, I ended up napping for another 4 hours.

I know things could be so much worse. Perhaps that is why I only feel miserable. I am thankful for what I have. But its still an odd feeling. People I went to school with are celebrating things like their childrens 10th Birthday. Everyone I knew or know seem to be getting married, buying houses and having babies. And I know that isnt the be all and end all, but I mean come on, I still live with my parents. I havnt had a serious relationship since I was 16. The differences are just insane. I guess that is why I have trouble relating with people and making conversation. Ask me anything medical, and I can give you a good answer. But life experience? basic milestones? I have no idea. Sometimes that difference just seems a lot. Like, a different planet type of lot.

Mostly I just ignore it best I can. But, sometimes, when there is no sign of things changing, it just becomes like a weight. And that, is really all I have to say tonight.

shrinking

My world feels as if it is getting smaller once again.
I guess in so many ways it is.

Last week, I began to live outside my room. Ventures to the local pub, trips to the shop and visions of future. Thoughts of family, housing, uni and work were exciting me. Possbilities were endless and the world was just a breath away.

This week, I feel lazy in a way. My world has shrunk to the size of my room. One little square room, with a bathroom at the side. And even that is beyond my stretch for a large part of the time.

They took the stent out of my throat last Tuesday. All looked well but they wanted me to stay in for monitoring. Today things have gotten harder. A lot harder. I have slept a lot the last few days, but today, I tried pushing myself. A shower, nearly wiped me out. I almost had to crawl to get out of the bathroom.

finding myself, sat on the floor of shower, gulping at the air like a fish out of water, tears sliding down my face, but I dare not cry, for that takes more oxygen. But its not enough evidence for me. I push myself further. A slow walk to the shop I convinced myself was a good idea. For it would be a measure against how I was just a few short days ago. Pain wasnt how I imagined it.

So I sleep through the night and right through the day. Stay awake for the evening, but as tiredness kicks in breathing becomes more noticeable. I can cope with breathless on movement, I can deal with that without to much fear. But as breathless on sitting becomes a thing, then my calm begins to fall.

My body tries to keep up. Keep everything stable, but the numbers soon show the strain on my heart. A pulse of 130 should only be seen during heavy exercise, never mind lying on my bed watching tv for 2 hours.

And yet, part me worries. What if they say its me, what if I am unfit, what if I have missed something. I fear that they will send me home. No I more so fear that they wont listen to me. I try to reassure myself, that they must listen, the numbers speak for themselves.

But then, we head towards harder ground. I have rid of my trach. I said never again, no matter what. And yet, I am have been here now for over a month. I miss my home comforts. Simple things, watching mum cook the tea. Talking to my tortoises, hugging my niece. Joking with my Dad, sitting in the sun. Home cooked food, roast dinners and real chips.

When will I see home again? And if the only way to see it, is with a trach, then where does my resolve lie?
I always knew this was going to be a tough surgery. I guess now is proving just how tough.

But onwards, always onwards. For tomorrow is a brand new day and I have no idea how that will go.

Hide and seek Mr graft

It's part midnight and all around me are snoring. I'm tired yet I can't sleep.

This week has been tough already. My tube came out as planned on Wednesday and within an hour every breath was taking so much force and energy that it wasn't long before I wanted my tube back as my chest muscles were burning with effort.

Now a few days on, things are easier but still not great. I can breathe and talk again with out to much effort but movement still leaves me gasping.I an also having to run high dose nebs every 3 hours day and night. But all that I can do. Well I can do that until surgery on Tuesday. Which I'd good it's what I need. I guess I didn't realise just how much I moved around the ward normally. Simple things like trips to the kitchen and to speak to the nurses.

I had an ultrasound today to see if the graft has grown. They could only find one of the two pieces and it's only 1cm.I have not spoken to the drs about it yet but I'm pretty sure there should be 2 and bigger than that . trying not to lose hope yet. It could be a problem like being hard to detect on the ultra sound or just in an awkward position. Time will tell I guess.

Now if I could just get some sleep. Oh and kick this headache.

roundabouts

My mind is in a mushy phase and I am not sure if I can explain it.

Things right now are not ideal. I think everyone knows that. Right now, I am spaced out and tired. My pain issues seem to go in an inflammatory patter. As if my body says ouchie ouchie lots and I have a lot of pain. Then gradually, it lessened  it forgets about the pain and forgets to remind me. I get a few days of no pain. Then one night, I will wake in agony again, as if my body has decided to say, oh you do know that pain is still there right? Let me show you where and I will be as loud as I can so you cant miss it.

right now, I am in the midst of one of these flare ups. Which means that I am dosing myself up on numerous meds including my morphine. You see when it hits, I have to keep on top of it, every 4 hours or so to take more. Whereas just days before, I wasnt taking anything.

It is frustrating, but the most annoying part is how the meds make me feel. They suck away the last of my energy, they make me tired beyond belief. But heres the funny part, I cant sleep. I will close my eye, and begin to drift off and then I will stop, stuck in that place for hours between asleep and awake.

Then comes the itching. I take piriton and such, yet I scratch so  much people must think I have fleas. Scratching feels good though. The sensation of scratching an itch is a wonderful feeling of relief and pleasure. But the more you scratch, the less pleasure, as your skin becomes raw and even my finger joints swell from the movement.

And the added side effects, the long term disadvantage to all the surgery, is that the pain gets worse. Operations have complications. Where as my pain at one point was limited to my throat, it is now also between my ribs and in my thigh. Today, I almost cried while standing in a clothes shop. It felt like someone was stabbing me in my leg. Its been numb for months, kinda like when you spend to long moving stuff in the freezer. But this was differnt, this was sharp. I just hope that it is the graft growing, rather than dying.

But do I really hope that?

My first answer would be of course I do.
But on reflection, the risk of making things worse is high.
I have had this trach in for over a year now. The wound has healed. The tube is steady. And I cant help but think back to last year, where the tub get drifting upwards, leaking lots of fluids and causing so much irritation that every part of me ached from coughing.

I know that the trach will be coming out, then going back in after the surgery and hopefully out again a month later. I hate dealing with a new trach.

Of course, to add to that, is the possibility of more complications. Of ending up worse than I am now.

Of course, it is a risk I will take, but I dont go into it blindly. I know the potential for reprecussions. I know the risks. And that is why, I stand my ground and say, this is the last big op I will risk. Once the trach is out after this surgery, My wishes will be made clear and documented.

Its not that I am being negative.
I guess i just know, deep down, that I can be an awsome person. I can do amazing things for myself and others. But I cant do it with this leash around my neck. It is holding me back and there is only so much of that I can take before I go crazy.

I wasnt born to be a hermit. To talk to virtually no one. I shouldnt be terrfied to go to sleep, nor stay up till the early hours of the morning trying to avoid sleep and thinking. Yet I am and to add tot he comical features of that, I am also terrfied of the day time. Of the work I need to do, the tasks to complete, the potential for things to go wrong.

Its like I am scared to sleep yet dont want to face waking. So I end up not really doing either and getting nowhere because of it.

I know my fears are getting out of control again. I know my anxiety is rising and I know my risks are too. Choking in the middle of a shop, whilst people stare from a distance. The worried looks, from both the passers by and whoever I am with. Tears running down my face from the pressure of clearing my throat. To finally clear it and feel totoally overwhelemed as a wave of exhaustion hits.

To have to put so much force on my narrowed airway, to get the crap out of lungs, that I often bring up my stomach contents at the same time. I have been on meds for over a 18 months, to try to prevent coughing up blood, but little controls it. I barely even notice it these days, just another chronic to add tot he list. Since when did blood become just one of those things, like breaking a nail or stubbing a toe.

My body is in such disreagard. My lips lacking colour, my nails snapping or falling off completly, my skin flacking off and my memory being so poor that I am able to watch a film one week and rewatch it the following week not recalling any of it.

and yet I know I am lucky and I am oh so greatful to be here. I know that there are people in much worse condition than me. And yet it is the fear that holds me back. It is the fear thatbrings the toneof everything down. Now if i could just sort out this whole sleep mess crap out instead of falling asleep in the most odd places and positions, then perhaps I can deal with some of these mushy brains and ideas and memory.

I am thankful. For so so much.
For the chance, for the hope, for the time.
But I am at a cross road, balanced on a needle tip, having everything on one side and absloutly nothing on the other side. spining, spining, round and round and out of control. Where will it stop, nobody knows. damage control, traffic control. permission to land.

Sleep, the enemy and the best friend as my heart pounds away, eager to see how tonight will end and the next begin.

purple

There once was a time when I read all the blogs that I followed, usually within an hour of them being posted. The inspiration, the words, the pictures, used to be what I thrived on. Yet now, I barely find time to update my own blog never mind read others.

I want to keep up with writing. It has proven important in so many ways. it lets me let off steam and gives me a chance to reflect. It also lets me fill in gaps when my memory fails.

I guess this is my apology for not commenting and writing enough. Im not sure where my time has gone really. Well, I guess a lot of it has gone into helping my Dad. We had an extension built on the house before Christmas  Since then, we have spent a lot of time working on decorating and refitting stuff. Mainly the kitchen. the kitchen is a huge task, but it is coming together slowly. And of course if power tools were not fun enough, I get to do the geeky stuff like wiring.

Did I mention that i coloured my hair?

Ignoring the lame selfie shot, you can see the purple. Under some light, it looks bright, under others, more of a brown, but i like it.

Oh and I was in London last week for clinic. That was fun. (enough sarcasm) My surgeon hardly had time to see me, so things were pretty rushed. He had a quick glance down my airway and said it didnt look to bad, but he dosnt want to do anything with it for a while. Basically, I am going to be going back in the middle of May under his care. Between then an now he wants to do as little as possible. Then when I go in, he is going to take the trach out and leave me for a week, so the hole closes up. He wants me throat to get as bad as it can, hence why I will be in hospital to deal with an emergencies. He needs to know the areas where things are at the worst, so that he can repair them.

It is a very scary thought, especially as i know how quick i can go down. If i am honest, the thought terrifies me and and plays hard on my PTSD issues. I know that I will be in hospital and i know the team will be aware and keeping an eye on things. But that dosnt take the fear completely away.

I am just trying to forget about it for now. I have 8 weeks to get through first. And next weekend should be a fun one anyway. so yay.

Whilst in London though, it snowed. Not the white fluffy stuff, but the stuff that comes down hard and wet for 10 minutes untill you are soaked and then stops and the sun comes out. It was odd and horrible at the same time.

I took Mum on the eye and you could see the sky change colour across London. Just wish i had had my proper camera with me.

Busy

I have need to write a long and fun update, I know this blog is long lacking a fun element. But right now, I am tired and I should be sleeping. But I keep putting off writing and if I keep doing it, I will never keep up.

I traveled down to London this week for clinic. I wasnt going to go, seemed pointless as there is much they can do. But then, I thought, London hmm retail therapy? And that seemed like a good idea, so I went for it.

I had a big order of craft stuff to get finished and ideally I wanted to drop it off whilst in London as it would save me on postage and therefore mean more profit. So the few days leading up to London, were hard work. I always put demands on myself for things like that, expect to just be able to do it, when in reality it takes a lot out of me, I just dont want to admit it. But I finished what I needed to at 11:30 the night before. I was fairly proud of myself for getting it done, as my stomach decided to play out and so a large amount of time was spent in the bathroom which also left me feeling wiped out. On of those marvellous after effects of anti biotics, they wipe out your natural ability to fight certain things.

But I took my mum down to London with me and we booked a hotel so we could have 2 days. It was fun. Visiting Camden and Harrods on the first day and Oxford street and winter wonderland on the second day. It was a little frustrating in that I had to give in and go back to the hotel on the first day and have a 2 hour nap. Getting there and camden had wiped me out more than I imagined. it was odd as I love Camden a lot and could spend hours and hours there. Yet this time, from arriving, I was watching the clock and wanting to leave. But, I was able to do some of it and after a long rest in the cafe managed back to hotel.

I am getting to know my way around London fairly well now.
After clinic, we visited Winter Wonderland, which is a big market in the middle of Hyde Park. I do love the market. So many nice things for sale, lots of wonderful foods and mulled wine, whats not to like about mulled wine.

There were so many fun things to see and do there including, a carousel bar. It was made to look like an old fashioned carousel with big wooden horses, except the horse were made into tables and the middle was a bar. And yes, it turned the whole time. Only very slow, but turned none the less. Oh it looked so fun. Alas I was the mother and apart from complaining at the price of everything, she gets motion sick and so I didnt get to go have fun. But defo another year I will.

Didnt buy that much whilst in london. Some candle wax and a pair of shoes was about it, though we did have a lovely meal in Prezzo and apart from that, it was nice to spend some time with mum, without the narkiness that usually acompanies time spent with her.

As for clinic, the reason I was down in london ha, well, I am not really sure how that went. Even though I was resigned to the fact that there was no change, my dr insisted on looking down with the scope anyway. Although my airway is open better than it was now I have this other tube in, it is looking very red and inflammed again. This is usually when the scar tissue begins to build up, which is a fact I think we were already resigned to.

He was muttering on about the professor and funding, though, he seemed like he was trying to say something he shouldnt be saying, or perhaps I am just reading to much into it. I think it was about the professor seeking some extra sort of funding or permission and though he thinks it is still going to be 18 months before transplant becomes a viable option, if we go ahead with the next stage of surgery, and put the cartilege into my arm, that dosnt mean my options are closed. If things continue downwards, he is still not giving up.

Its nice that he keeps reassuring me that he isnt giving up, but I dont know. I cant remember if I wrote about when I spoke to him on the subject of giving up. I wrote a big poetic entry about it, but  saved it on to my ipod, then lost my ipod before I was able to post it. (feel free to remind me if i did or didnt post it)

Things are in a big circle. The scaring will continue to form, it however forms quicker the more movement that is put on my trachea. Its possible that the amount of coughing that I do, is part of what make the tissue form so quickly. On the other side, having a trach in, makes me more vulnerable to infection, which makes me cough more.

He wanted to try some new meds or some more IVs but when I told him what I was on and what treatment I have just had, he said you are already under more care than I give you in that respect, but let me know if there is anything that I can help with. I seem to have this effect on my doctors lately. They seem stumped on what to do. My chest doctor, my liver nurse, my surgeon and my gp, all say, tell me what you need and I will sort it. They rely on me these days to tell them when I need treatment, when I need meds and which ones. I know that I am the best expert on my own body, but do I trust myself to make these descisons.

Alas, if all goes well, I shouldnt be in London now until my next surgery at the end of January.

I did want to moan about rest days, but I shall save that for another blog. Arnt you all lucky

Home.

I am home.
My typing maybe awful as the nebs are wrecking havoc on my hands.
Its been an intresting addmission.

I have gone in at 3am,
I have gone in at 5pm.
I have gone in heels,
I have gone in in pjs and slippers.
I have slept all day,
I have stayed awake for hours.
I have added nebs,
I have taken away nebs,
And then added some more nebs.
I have been to physio
and gone through lots of cannulas.

I have seen doctors and nurses, and tons of other staff.

I guess now I am out, the real work begins. Its easy to keep up with good routines, when you are sitting in the same room all day, but to put it in to real life, is the next step.
I know that I need to work hard to keep my health where it is. That between trach care and now so many nebs and such to keep my lungs going, it is like a full time job. But that is why I cant work at the moment. And I need to try to stop berating myself for not working. Right now, not losing any more lung function should be my biggest goal.

Its easy in a way to take things for granted. That the tube I have in at the minute, is working and I can breathe. I am still breathless on exertion, but for that I am thankful as I am still breathing and can rest. Unfortunly the dreaded axe still lingers above my head. I know that this time now, is easy, but how long do I get before the longer tubes begins to scar, is another question all together.

So for now I need to make the most of breathing. That I can do, though I still need to fit treatments and rest in.

I can get my neb time down to 3 horus a day. If I hadnt of upgraded my machine the other month, it would be 8 hours a day. All that extra time has to be a bonus.

So for now, speaking of rest...

Close but not quite

The title is in reference to where I am currently. I expected to be admitted and I have been, yet it was not in the imagined way. (this post was posted on Wednesday, but silly blogger put it in the wrong blog and I have only just realised.)

About 4 weeks ago, my chest doc said he would admit me for a course of iv antibiotics. As far as I knew, I was still waiting on a bed. I didn't chase it up too much as I know I get the most benefits from a 2 week add mission but I had my holiday to Greece planned.

I rang on Monday and somewhere messages have gotten mixed up. I was down for a surgical review as they are going to look at putting a port in my chest (a port will allow me to have better iv access, and but I will cover more of that another day.) so they forgot I needed an admission as well. After a lot of phone calls, finally I think it is sorted, however, I am once again on a wait list for a bed.

That takes me to yesterday. I spent most of night tossing about in bed and feeling generally ill. This is most unusual for me as usually once I am settled there is no moving for 12 hours. By 8am I had given up. I couldn't put my finger on but I felt rough. I often feel ill for one reason or the other, but this was beyond anything I have felt for a few years. I ended up with an emergency gp appointment though the thought of the effort involved in doing this made me want to scream. With a lot of encouragement I made it.

It was decided that it was another migraine, though it felt like more to me. I was given yet another type of migraine med as the last ones were not knocking it out and sent home to sleep.

By evening my temp had shot up, every part of me ached, coughing was agony and I could not keep anything in my body. Because I had spent most of the day curled up, and my breathing then began to play up to. I felt like death and I worried that things would get worse overnight. I just wanted to go to sleep, but my parents didn't think that was a good idea given how quick I had gotten ill. They have many memories of me going to bed with a cough and a slight temp, only to be woken up early in the morning with me needing urgent help with pneumonia.

They wanted me to go to a&e, but I couldn't stand the thought. My emergency department is in a horrible hospital that sends me loopy every time I go in. I wasn't in the best emotionally and so I threw a bit of a temper and refused. In the end we came to a compromise to ring my old ward and ask there advice. They told me to come over and they would get the on call doc to review me.

In short, they kept me in overnight and took me to theatre today. My temp seems to have settled and I have kept food and drink down. They cleared out my throat and changed my tube for me. The tube they changed to, after a bit of researching is longer than my usual tube, therfore it should fit through where the scar tissue is building up. It's temporary until my new tube comes in but should allow me to breathe better. The though at present it is very painful. I am doped up but that will ease of the next couple of days hopefully.

Tomorrow I should be discharged and then back to waiting for the add mission for iv meds.

Seem to go around in circles. Just odd, as I spent a full 3 months on this ward but have not been here for about 3 years. The room seems so familiar. Though they are nice rooms, very very big rooms.