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.

The big one.

To say that I wasn't scared would be a lie.

I had my week away and got back late last night. Unpacking and repacking was not the thing I wanted to do very much as exhaustion was a pretty heavy thing. Not to mention that I really wanted to spend today helping mum. Whilst away we had new floor laid and though it looks very nice, there is a fair bit of cleaning up to be done.

The holiday was great. Time resting, soaking in some sun and just generally spending time with my parents away from the stress of hospitals and building.

Taking a dip in the sea or pool would have been nice, but that is a luxury that I may get on my next holiday. I actually kinds did take a dip in the pool though a little unplanned. My legs were really hot and so on the way back to the room after a couple of drinks I decided to paddle through the kids pool thinking it would come about half way up my leg. But as I stepped down into it, it was deeper than thought and so u ended up in almost to my waist and having to grab my bag to stop my camera getting wet, ignoring my dress that got soaked. But it was fun.

Anyway by 7 this morning I was on the train across country that would bring me back to London. And here I am sat in the hospital.

This is where the fear sets in. Soon they will be taking my trach out and going that I can make it till next Tuesday without my airway failing completely. I do still worry that I won't last, but there are options in place should things become critical, as they say.

I guess it just stirs up old trauma of respiratory arrests and such, but this hospital is much more specialised and hopefully things won't get that far. Of course saying that knowing how my body never does what it's expected it may not become a problem at all.

Plus there is always the aspect of an ICU stay. It should only be one night, but that is still the place that haunts a lot of my dreams.

I find myself wondering often why I keep putting myself through this. The risk of making things worse and the fear and pain that goes with it. This is after all very major surgery. For a while I will have no airway at all and will rely on a tube thread almost into my chest for ventilation. Not to mention the complaints my lungs will make along side the surgery.

But it is some why I do it. For the chance to be able to breathe. For the opportunity not to spend my life in hospital. Simply fit the chance to live. Living is one of the biggest life forces your body can attain towards. Each big surgery offers me a chance to get my life back. And that chance is what I have to go for. It's that chance alongside my hopes and dreams fit a future that make the pain and fear worthwhile.

The chance to live, to have a family, be a mum, work and build a career and live a long and healthy life. One not effected by inability to breathe and the exhaustion that comes with your heart trying to keep up.

Now I just need to keep them goals in mind and all will l be well for the next few weeks of living in captivity.

outlook

My post lately have drifted towards the depressed again. I make my life sound awful. But its not. I just tend to write when I have a lot building up and need to get it out.

Things are tough right now, I am not going to try and be a hero and say they are fine. My airway is getting tighter, breathing is harder and mornings are pretty much written off trying to get my lungs functioning enough to allow me to breathe and move at once. I find getting going hard work, simple tasks become exhausting and have to be done very slowly. Evenings the pain kicks in. Still rib pain, though the exsecive coughing dosnt help it to heal, the chances are now that that will always be there. and so between treatments and medicating I have had to add in some antibiotics for an infection.

But between all that, I am still living. I am able to get out using my scooter (truck) without it killing me to much. Even if it is only to the supermarket. The doctors are working the best they can to keep me out of hospital till my big surgery and I am most thankful for that. Sure I hate the amount of time I run treatments, but at this point, it has slowed down the deterion.

There are obviously aspects of my life that I would change given the chance, but that is not to say that I dont have it good now. I am enjoying the simple things right now. Sitting on the sofa next to my dad, working on a word game together. Helping mum with tea, talking to my niece. All moments in time to savour.

And they are what make this fight worth it.

But things are on the change, I can feel it again.

I am lucky enough to be going away on Monday. Getting to spend some quality time with my parents for a week where the weather is warmer and the stress is less. The break will do us all good. To feel the warmth on on our faces, the tide under toes. Feeling close, before being seperateed by miles.

The day after I come back, then its off to London for the big one. I feel positive about this one. Hopefully it will be enough to work. A mix of surgery and the treatments and medication, will hopefully force my airway to behave. That would be nice.

In short, I am thankful to those a\round me, family, friends, doctors. I am terrifed of the big op, or more so the ICU afterwards and the risks before. But, anything worth doing, is going to be hard and the chance of being able to breathe is defitnely worth it.

So my trust is in the doctors. And the next time I write, will be a fair bit ahead.
For now, I am living on the high of having had a great day with my niece and knowing that no matter what happens, she will be ok and looked after well.

And till then, I am lucky to be able to do this wait, believe me, I know how lucky I am to have made it this far.

Because of you

Its been a funny day in the land of my moods.

I had a dream last night, I dream a lot and very vividly, I think that is part of what stops me wanting to go to bed in the night.

But this was differnt. I was a spy, I had a team. We worked together and we worked well. We had each others back. I had a bow an arrow and it felt amazing to be useful.

I have been watching a series called chuck which is about a spy, which could have bought the dream on, but it was totally differnt.

When I woke this morning, I was sad that I wasnt spy. That melanchoia feeling has stayed with me all day.

Later on in the day, I had been working with the tv on. Kelly Clarkson Because of you came on.

http://www.youtube.com/watch?v=CTTjLxXFg0k

And the lyrics just hit a spot.

Ok, the song suggest against the parents, and mine is against someone else, but so much of makes me think.

Because of you
I find it hard to trust not only me, but everyone around me
Because of you
I am afraid

I dont trust anyone. I have built this whole persona around being an independant person who dosnt need anyone. Sometimes I let people in, but the first hint that pain maybe invovled and I run. I blame them of course, I shut off. I wont let them get the best of me, control me, look down on me. How can I let anyone in when I know the damage they can do.

Because of you
I never stray too far from the sidewalk
Because of you
I learned to play on the safe side so I don't get hurt
Because of you
I try my hardest just to forget everything
Because of you
I don't know how to let anyone else in
Because of you
I'm ashamed of my life because it's empty
Because of you
I am afraid

My life is empty, at my own hands. I not only play on the safe side I make sure no one has access if things should begin to move away from uber safe.

It hurts that it is over 10 years and I am still afraid, I am still shut off.

I got some closure on such a relationship this week, though I feel better, I cant help but feel perhaps it is this over again and I have to wonder how long this will keep happening for. 

An old friend tried to get in touch. I put my foot down. She started to hurt me once before, why should I let her in to do it again. She apologised  Even said that she should have done something rather than sit back and watch me destroy myself. 

I wasnt destroying myself, I was surviving the best way I could. But simple words, may have changed things back then. 

They were dark days. I was needing stitches several times a week and stopped going due to the hassel. I had server infections that have left me with a huge numb section. Eventually I learnt to self suture, so that I could keep at destroying myself without anyone knowing. I spent the nights drinking till I passed out and came up with an ingensious plan to cause an early death. After 4 weeks working on my plan, things got noticed and an end was put to it. Damage was done, irrepareable damage, but again, I shut off at the point. Why tell anyone anything. Just more hurt.

And now? now, I live clinging to the slope. Knowing that if I let my guard down, I will be right back there and it will ruin everything. But the truth is, I live in fear. For so many reasons. Its like being permantly stalked by my own mind all the time. Be it a dream, a sound, a song. Fear of hurt, so I used to hurt myself as a way to say ha, you cant hurt me more than I can hurt myself. 

But then something happens and it does hurt again and I have to take control. Fear jumps in and I have to prove to myself once again that I am in control by being able to cause more pain than anyone else can. 

But the fear is still there. It still haunts me. Just waiting in the shadows for me to let me guard down, to let someone in. I must stay in control and so I stay with armour up, and I shall keep from letting anyone in.

I try my hardest just to forget everything
Because of you
I don't know how to let anyone else in
Because of you
I'm ashamed of my life because it's empty
Because of you
I am afraid

Because of you
Because of you

buh bye brain

My brain sometimes decideds that it has had enough.
On days like this, it just deserts my body and my thinking.
On those days, it can be odd, the thinks that my mind comes up with on its own.
Kinda like when you have a ton of stuff to do and its all so overwhleming that you decide to do none of it and take a nap or go out instead.
I had my meds increased a couple of weeks ago, to try and limit these times, but there are still nights like tonight, when things just bottom out. and though i could essentially fight it, there is a  bigger part of me that just says meh, lets just let my mind do what it wants for a change, no  cares on the outcome.

Part of my mind says, lets not run my treatment, lets feel like a rebel and say fuck it. But that is shotting myself in the foot. Without the nebs I will go downhill quickly and perhaps then lose out on my holiday.

Part of me says, lets abuse this bottle of pain med, that it would be nice to be that numb. But it would take a few days to replace it and right now, the pain is at a level where I need it.

Of course, there is always my old friend the blade, that always gives relief, but there isnt enough time for healing to occur before my next addmission. Which leads to a whole new barrel of fish, as I need the hospital to see me as competent and non depressed. Signs of depression, could mean the inability to say no to further surgery when the subject arises. So for my long term plan, that is not an option.

Of course, there is always my other old friend alchol. Less permant, should allow me a few hours of numbness, though pretty borining and stero typrical. Always hated being predicatable. Maybe a mix of things might help.

Of course there is always the option of taking a shower, having an early night and just riding out the mood. But where is the fun in that. No I need this realse. I need to escape these feelings, because right now, they hurt like hell. And I am not ready to explore not feeling good enough and facing the darkness of the night alone just now.

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.

Love

I seem to be having a philosophical week. forgive my ramblings  (And mis spellings, I usually write before nebs, not after, unlike tonight and so my hands are shaking more than the average woman in an xrated movie)

I wote yesterday about the urge I get, to be useful in some way. Well, the other thing I often crave is love. Yes, I have an abundance of love from family and such, but I am talking more the soppy, butterflies in stomach, just want to hug all the time type of love.

I do crave that so much and in a way, I crave it in the sense that when things do get tough, I want someone there who I can turn to, someone to be scared with me, who will hold me, curl up on my bed with me and tell me everything will be alright. Someone, who can rub my shoulders when I have had a rough night and make me feel good about myself whilst coughing my guts up.

But as I think more about this, I know that this is a dream. Sleeping Beauty had to be asleep for her prince to come. Cinderella had to go the dance and so on. You need to be able to put yourself out there. A knight isnt going to suddenly ride his white horse through the middle of your living room and find himself in a deep love at first sight.

But right now, I cant put myself out there. It would be easy in a way to hide behind the reasons why. To say, well I cant talk well and I cant hear well so there is no point. Or to say, I cant get breathe enough to do it. But that isnt the full reason. Its the easy reason.

I think, more to the truth, is that I cant put myself out there, for many reasons, but mainly, I think if I want to be loved so much, then I first have to love myself.

I think, through this whole ordeal, being held against my will, the stabbing, the transplant and all it entails and after that the whole breathing saga, the thing that is hardest to deal with and has the biggest inpact, is the hatred and guilt that I feel towards myself. I cant help but feel like such a big part of me was taken away from me. I lost who I was. I was the loud, confident, successful one. The one with a big heart, the one with friends and boy friends. The kinda person that would get up and dance on a table, without even a drop of alcohol. The kinda person who went on a 2 hour hike at 4am to Tesco to buy hot dogs as I had a craving. The person who was never home. The person with a big heart who laughed a lot.

Right now, and for a long time, I dont love myself. I dont like my life and I dont like where things are headed. I hate never having energy, I hate the looks I get in public.

I know I talk a lot about giving up about how the future is bleak. But I put myself through insane procedures, painful ones that give more hindrence than help, ones that leave me in hospital for months at a time. But, deep down, I do this because I want a chance. I want a chance to take my life back. To be me once again. I know that I can never get back to the person I was and I am ok with that, she was self centred 16 year old anyway. But, I want a chance to see what I can be. To pit myself against the world and see who I truly am. To see if I am capable of becoming a person that I can once again love.

And with love becomes happiness. I want to be happy. Happy and breathing and useful. So yes, I do pin a lot of surgry. But the way I see it, I have a lot to lose. Because there is so much that I want to do and see and witness. But I cant do it like this. And I cant do it alone. And right now, my bitterness and my lack of love, has left me alone. It is rare I talk to anyone outside this house. I am 26 and in an average week I talk to 2 people. But the longer this goes on, the more hollow I become, the deep and darker the hole the inside me grows. And I can barley even accept myself, nor look in the mirror whilst the whole is still there.

I hate that the hole was put there, but I also hate that over the years, I have allowed it to grow and consume me.

So for now, I shall cruise a long and hope that I am able to stay afloat. And that the next surgery is the one that works. The one that gives me my life back, instead of adding more problems.