Im ready.

I havnt posted in a while, I guess I have been trying to get a handle on where my life stands and how I feel about it all.

Last week, I had a panic attack, only a fairly minor one one night, but still, the first one I have had in a long time. Since then, I have done some pretty serious thinking.

I know what was bothering me, what was causing the problems. Its the whole death and dying thing. Things were put pretty bluntly and just when I thought that I had made up my mind, the words of the surgeon, bought my whole world crashing down upon me, making me reevaluate my decisions.

My mind has been everywhere, between denial and despair, joy and triumph. And its only now, as fear builds up its height, that I am truly able to see over everything.

Last year, my extended spell in hospital destroyed so much of me. It broke me beyond where I thought repair was possible. Not only was it a toll on my body, it was a toll on my mind, my spirit and my resolve.

But today I look back and I can admit that I was broken and it was scary. It has taken a heck of a lot of work to build myself up again and the mere mention of surgery was enough to make me quiver with visions of being the ill again. But I am not that person any more. I am stronger, I have faith in surviving again. Back then, taking a shower, would be a long and draining process. It would take all I had to manage it, before collapsing with exhaustion on my bed to sleep for hours. But now, I am still restircted, yet I am able to shower without needing a break. I am able to do that and more besides. I have made peace with who I am and more than that, I am oh so grateful for what I have.

These last few weeks have been amazing. From going to Turkey with my niece, to greece with my parents. Visiting Devon with my family and this past weekend, Alton Towers with my two nieces. I have taken steps to rebuild bridges, I am slowly bringing my family back together. Its early days and its baby steps, but my heart feels happier for it, at the prospect of once again being close to others.

Of course the flip side to that, is once they go home, I am filled with this lonely ache deep inside me. It has taken all of today and yesterday for me to put a name to this feeling and recognise it for being lonelyniess. But that is a good thing surely, for recognising, instead of wanting to shut away alone, away from everyone.

Right now, I am happy. I feel strong, I feel positive. And more than anything else, I guess I should say that I feel ready to defey some more medical boundries. So my sleep patterns not great and bad thoughts fill my nights. But right now, I am able to fight that.

And so, next week is going to be a simple in and out of hospital trip, everything to plan and I will bounce back from it, as I always used to. And I will talk to the surgeon. Its my turn to tell him where I think things are. That, sure, I am not runing any marathons, nor joing a talk show. But right now, I surviving. More than that, I am flourishing within my limits. I still have enjoyment, I am still able to do the things that I want to, just with a little more support than usual. I am not ready to pin my life on a risk. I am however ready to fight. Ready to achieve some more goals. Ready to kick ass and fight back.

And so, my thoughts are still against me, the dreams, the flashbacks, the panics. But my physical self is still here. I still have a way to go. And I am ready to go that way.

I be back

Ah, so you may or may not have noticed that I am back! :)

Court went well, with no problems like I have had previously, but this isnt some place where I can discuss that.

Aside from that, I actully put my blog back a while ago, life has just been a bit hectic, which is actully a really good thing.

In the last couple of weeks, it feels like the mist around me has finally lifted. There are many reasons for this, I think, such as medication levels being played with, time away from hospital, the court case being over. Thats not to say that my mood and such is perfect, but it is way better than it was a few months ago. Over Christmas and probably before then, I was feel very fragile. I had given up hope of things getting better and I was filled with resentment and no real purpose or goals in life. My time seemed to be come home, rest and get over surgery, spend a few days catching up on things like paper work, laundry and appointments. Book my next round of transport and hotels and then go back for surgery again. I had such high tolerances to the pain meds, that coming around, morphine no longer even touched my pain and I was needing IV ketamine followed by oral ketamine.

Now I am being careful not to blame the hospital to much, else I will end up dreading my next admission, but over the last year so much of my life has revolved around hospitals, admissions and appointments, kinda like a bad relationship. You dont realise just how much it has been taking out of you, until its suddenly not anymore. But that is no reason to never have relationships again. Or at least that is what I am telling myself.

But little things are slowly changing and I am being careful not to change them all at once, else I know I wont keep it up. I have cut down a lot on the junk that I was eating, hoping to lose a bit of weight, but we shall see. I am eating healthier and slowly trying foods that I wouldnt even try not so long ago. I ate red cabbage the other, I have started drinking tea (typically british, though I prefare lose leaf earl grey, black with just a touch of sugar) This week I have started drinking espresso, which is something that I never thought that I would be able to drink, but I am actully liking it, it gives me a bit of a boost when I have no energy. I am eating a lot more fruit and though I still love my truck (scooter) I am pushing myself to walk further. I still get out of breath and I get lots of disgusted looks when I have a coughing fit, espcially when I find myself having to stick my head on the side of a shopping trolley, to keep my balance while my muscles cramp from the effort, but thats people for you and to be honest, if I heard someone coughing like I do, then I think I would stay as far away as possible. That being said, someone did tell me I was disgusting the other day and that I should go outside. I was in a pub having food with my parents and I just couldnt help it. Kinda ruined the mood, but again, some people suck.

Tea?

I am working on updating my wardrobe and have even been out today and bought a few new bits, including a little blazer jacket and some other items that I never thought I would wear. I am getting to that point, where I am too old really to wear hoodie jumpers and though they will always remain my go to comfort items, on days I feel up to it, its nice to wear something a little bit more classy. That being said, I am not ready to give up my jeans just yet. And of the course the most exciting thing about losing a little weight is getting back into my jeans that became to tight during my long admission.

hmm what else am I changing. Well, I am trying to go to bed earlier, doesnt always work, like tonight for example, but I used to make sure that I started my nebs by 1am, now I have pulled it back to 11pm (they take about 2 hours to run), though may work on getting it earlier once I find 11 easier. I have started setting my alarm clock for 10am and being out of bed by 11am. This week, I am working on getting over my fear of showers so instead of having a bath of a night time, and always putting it off so it ends up being about once a week, I have now started having one as soon as I get up, everyday, unless I know I am going to be out all day. If I am going to be out most of the day, I dont have the energy. It also means that I am dressed before 12, when normally, I would spend most of the day in my pjs. Overall I guess I am just feeling more alive and I am so thankful for it.

I am still working on moving my room about, always knew it would be a big job, but so far, gotten rid of so much stuff and it is not only nice to use but easier to keep clean. I promise pics once its done.

As for hospitals, right now I am avoiding an admission. I have just finished a 2 week course of cipro antibiotics and though I began to feel better on it, within 3 days of finishing them, I ache so much from coughing that I am hitting the painkillers again. The hospital, after many messages back and forth have decided to fit a port in my chest, to make IV meds easier, I am also hopeful that this will mean that I can run the meds at home instead of having to go into hospital. Fingers crossed on that one. They are also going to arrange some more sleep studies, to see if there is anything they can do to help my energy levels. I virtually always wake up feeling like I have not slept, I sleep for 10 hours plus most of the time as well as falling asleep during the day and finding it hard to wakeup. They want to look at my blood gases incase there is anything there. I doubt it will show up anything, but I am super thankful that they are still trying to help little moaning me.

As for London. London these days means two things. First off there is the side of it which I will refer to as medical, which is my appointments. I was there last week, and my trachea still looks red and inflammed, which is why breathing is still hard, but the inflammation also makes it easier to grow scar tissue again. Nothing they can do about that though, as they have already tried blasting it with all kinds. Breathing is still hard and you can hear me come from a way off, talking is also hard and often, I will talk and no sound will come out. It can take two or three attempts to get my words out and even then, only short quiet sentences. They want to try putting a stent in the airway to hold more of it open. I dont know how I feel about this. If I thought it would be straight forward, I would jump at it, but I have had issues with them in the past and the continual chest problems, can also add more problems to it. It could also mean another long admission. If it went straightforward, it would be a week, but complications could make it much longer. There is a possibility of going in in May, but I need to sort some stuff out first.

Now the other thing that London means, I am going to refer to as educational. Again, I am bound by what I can say, but I am working/helping out at UCL (university college london) on some medical trial stuff. I get to work with a bunch of people there including the professor that I met years ago. Its all very interesting and they are open to me doing as much as I want within the university. Last week I went on a course about research. I will write more about that next time, but it is so wonderful to feel useful again, to have even a slight purpose and who knows what it may lead to.

I was there last week. I travelled down on the Sunday and stayed with a friend. Spent Monday at the uni, tuesday I went to Camden with a friend I met on my last cruise and Wednesday I had clinic. It was a bit much in honesty. When my parents picked me up again on wednesday afternoon, I looked like crap and couldnt keep my eyes open, but it was worth it.


Right now, I am just so grateful so a huge amount of things. The uni for including me, the proferssor for having faith in me, my family for holding my up when I could no longer do it myself and my friends, for not only believing in me, but being supportive, yet truthful, for judging or arguing, even when conversations got hard and must have been difficult for them. For all the hospital staff, from cashiers, clinic nurses, drs, nurses and even cleaners, for treating me as a person and making hospital that little bit less icky. Without all of these people, I am sure I wouldnt have made it this far. And as I begin to rebuild myself and my life around my limitations, I can see that I would not have made it this far has it nto been for them, each and every person, in their own unquie way. So if you are reading this, Thank you. And to my followers, even the smallest of comments, can bring sunshine through a storm, can make you take a deep breath, rethink and retry. right now, I am still in the same place I was a few months ago, but now, I feel happy, like I have control of things and am in charge of my own destiny, no matter my limitations.

Anyway, long enough and rambling now. (but then name of the blog suggests it)
Night

Horsing around in Camden

Life progression

Im still out of hospital.
Thats not to say that I am better and well, I still have a lot of issues, but right now, they cant do anything to fix things, so I have opted to only go in if things get unbareable or in an emergency.

I feel like the fog is lifting, that I am getting back to me. I am thinking ahead, tackeling jobs that I have been putting off for months, sorting my diet out. things like that.

My room has been a mess for so long. I love to craft and love having crafting stuff, but it was never organzied. Now I am working on my room and though it will take a long time to finish, I am taking pleasure in it and thinking about how much nicer it will be to work in once it is done.

I am taking an intrest in my appearnce again. Fixing my hair (which is oddly still a normal colour), makeup occasionally and wearing things other than jeans and hoodies.

I am thinking about m diet. For so long, it has been comfort food, with no care for tomorrow. And believe me it has had an effect. I am the biggest I have ever been and boy do I feel it. I dont like looking in the mirror, but my bones and joints are complaining. I am already in such a high risk group for issues with my bones, that I need to take care of them.

I am thinking of things to do with my time. Craft stuff, charity stuff, medical stuff. So much that I can do, so much that may make a differnce.

I am sorting out my sleep routine. Getting up earlier (for me) and hoping that in turn will make me tired earlier so I will go to bed at a resonable time.

Most of all I am itching to go on an adventure. the last few years I have holidayed alone. I like it, you meet so many more people and get to do exactly what you want to do and when. But this winter I didnt go. I didnt feel up to it, and didnt spend long enough of out hospital. But now, it is like my soul has been awakened and it wants to take in as much as it can on this earth. After all, its the memories that keep you alive when all else is crumbeling.

I know this isnt all hospital related. I have had a med change/increase which i think has helped a lot too. But most of all, it is finding myself and realising that there is more to life that sterile rooms and unpleasntness.

This last year was horrible. So many times when I didnt think I would make it to see another day. So many close encounters, so many things going wrong. So many embarrassments and nasty procedures. But as the saying goes, that which doesnt kill me, only makes me stronger.

And so, I am off, to think of some more adventrues.
I havnt donethis in a while, but heres a selfie. and heres to the future.

You only miss the sun when it starts to snow

                                    Well you only need the light when it's burning low

                                           Only miss the sun when it starts to snow

Only know you love her when you let her go

Only know you've been high when you're feeling low

Only hate the road when you’re missin' home

Only know you love her when you let her go

And you let her go

Before Christmas, I felt like I was losing myself. I did what I always swore that I wouldnt, I lost myself, lost my passions, my loves, my determination. I became my problems, my illness, lost in a world of admissions, tests and disappointment. I could no longer cope, things seemed so bleak and my own company became unbearable. 

Now, I have had a break from everything. No tests, no clinics, no admissions and no surgeries. I have had my meds adjusted and I have had a few breaks from everyday life. Ive spent time with those I care about, those I love, I have done things that I have been putting off for months and achieved those smalls goals that slowly give me hope back.

And now? I am starting to feel like me again. The old sense of pride and hope kicking in, planing further ahead than just a few hours. It feels like the fog is once again begining to lift. Dont get me wrong, I know that I have a long way to go and I know that I cant stay away from hospital indefintley. But thats not the point, I am starting to feel like a person again, a person with a purpose, with a goal, with hobbies and interests. A person who believes that there are tomorrows to be had.

I have had the best birthday that I have had in years. I went out for a meal with the parents, visited a friend in London, went on the Harry Potter studio tour and saw Wicked in the theatre. I had deep conversations and realised things for myself. 

I attended a medical conference, that came with bad news, yet also spoke to some people, that give me hope. Refound my purpose towards my future.

It was all completely exhausting and I had to pace myself. Breaks to allow my lungs to rest after walking for a certain amount of time, sleeping and sitting still on days following active days to allow my muscles to rest. Good company and good food. 

And now I am home. I have a new determination, I dont know how long it will last, but right now, all I can say, is exciting things are happening for me. Maybe small and silly things, but each step forward is an achievement. And it feels good to feel something other than sad. 

Photos to follow at some point, but tonight, I am hopeful and thankful. I may have some crappy circumstances, but I am so so lucky to be where I am, how I am, with those I love around me. 

You dont realise how low you have been feeling, until your not so low. 

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.

The 9 1/2 week hospital saga

Wow a whole month between posts.

There are a lot of reasons for it really. I mean I doubt anyone reads here, but it was always more for me anyway. Partly that I have so much to catch up with that it became a tad overwhelming. But also because, I used to write last thing of a night, right before I went to sleep, to allow all the thoughts to tumble from my mind. But I am back on my nebs and so by the time I run them, my hands shake to much to type.

So I am writing before I run them. I am going to do a quick run down of hospital, though my orginal post is half finshed, if anyone wants to read it, I can still publish it, but as I say, this place is mostly for me these days so I still have it in draft.

Hospital was tough. I was finally discharged last week, making my stay just short of 10 weeks. It was one of the toughest periods of my life. There were times when I was too weak or breathless to be able to even shower or make it to the bathroom easily. There were times when I threw up so much that I thought my stomach was leaving my body. There were times when I didnt think I would leave the hospital ever again. Those I admit where some of my most scary days. When breathing becomes such a chore that you wonder how much longer you can manage it unassisted. There were times when I pushed myself so much, that I had to sit on the floor for almost an hour to recover, then almost couldnt get back up off the floor. When I pushed so hard that I was in too much pain to walk for almost a week. There were days when I wondered if I should call my parents to let them come visit before time might run to late. There were tears and fights, but also joy and pride. It was one of the most emotional 10 weeks of my life and its not over yet.

Waking up from surgery, I expected to hurt, but I didnt expect to not be able to lift my left arm. The IV line had tissued during surgery (a common theme these days) nobody had noticed the line for some time and so my arm had swelled to 4 times its normal size. Given that my leg had been split from waist to knee and I couldnt move my neck, having my arm out of use made movement very tough indeed.

But I got myself moving, quicker than they had anticipated but I wanted the catheter and feeding tube out and I wanted to get as much movement back in my leg after them taking muscle out of it as well as skin grafts and finding the cartilage. I did all that and all was well.

But then my neck swelled, my oxygen sats dropped to 82% which for me is a huge thing for me and I looked like crap. I was put on 4 differnt types of antibiotics, but showed no sign of improvement. After late night draining of my neck, at 11pm on a saturday night, results came back that I had a bad hospital accquired infection in all of the areas that had been operated on. There were only 2 antibiotics that would get rid of it and I was allergic to one lot of them. I was put in isolation and begun them. The first 4 days were horrific. I couldnt even keep water down. Everything hurt from throwing up and the lsightest movement had me retching again. I was on IV fluids and injections for the nausea. But they began to worry about me not absorbing my meds as they wouldnt stay down either. At last after almost 5 days, my system began to adjust and the nausea eased off. Over the next 3 weeks, I had to cough all the infected material out, as the swelling slowly began to go down.

Then there were problems with the trachesotomy that they put in in surgery. It was butted into the back wall of my trachea, so not only could I not breathe through it, but it was wearing a hole in my trachea. After a few attempts at fixing it, it was taken out.

That night, I coughed out 3 pieces of cartilage that they had planted in my neck. I cough a lot anyway, jous of crappy lungs, but brining out the cartilage, was something else. The drs face was priceless, when I walked to the Drs room, knocked and asked to see him for a minute and showed him. You could see the cogs whirlling on what to do next, and checking I was breathing ok. Lots of treatments later, where I had to run almost constant nebs all night long, and my coughing eventually settled. For a while the Dr sat at the desk outside my room. Everytime I coughed, I could see him watching me, waiting just incase. It was both scary and reassuring at the same time. I owe a lot tot hat Dr, for although I didnt freak out, it felt like a team work thing. I didnt freak, because I trusted him. The Dr on nights the following week, would have spontatniously combusted if presented with the same scanrio and I dont think I would have felt as safe. Anyway, my surgeon was phoned at home and informed and such.

The following night, I coughed out some more cartilage, meaning at least 4 out of 7 pieces were now outside my body (though I think it was more so 5 or 6).Things were not looking as hopeful has they had a week earlier.

I had been fitted with a PICC line, that ran up my left arm to my heart for IV meds. A week after the cartilage insadence, just when things were starting to calm down, my arm began to swell. A scan revealed I had a DVT. If that isnt bad enough, I am allergic to the meds used to treat blood clots. I was started on new meds that nobody had heard of before and the line was removed.

It was noted that one of my eyelids had dropped and that my pupils were differnt sizes. I was diagnosed with Horners Syndrome, caused by damage to one of the nerves in my neck.

One morning, I somehow ended up getting my IV line flushed with salbutamol, a med that is usually only given as a neb. My heart rate spiked to 210 and I spent the following 24 hours on a heart monitor.

But, worst of all, out of all of that, was I developed Surgical emphasisma. Now I am no stranger to that, it is where air is able to leak between the layers of tissue in the skin. It causes swelling in the skin, that when touched crackles almost like rice crispies. I have had it before, but this was serve. It ran from my waist to above my ears. It swelled one of my eyes closed. I wasnt allowed to lie down and it was very painful. I had all my painkillers increased and was put back on the ketamine.

I was really begining to struggle to breathe and so, while I was awake, on the ward, one morning, I had a mini trach inserted into my neck. The following morning it was switched for a regular trach. Never have I had them put in while awake. It was quite the experience.

Surgery had to be held off because of the surgical emphasima. Breathing was still hard and I found my days filled with sitting still, whilst on oxygen and running so many nebs that I dont know how my lungs didnt swim out themselves.

Eventually I went back to theatre and things mainly looked swollen. But the trach was secured and for now, I breathe through a 7mm hole in my neck, that gets clogged because of my chest issues. Things are not very comforatable and we have no idea if the surgery will work at all. My orginal trachea had to be cut open with a bone saw, which is very unusual, the first time my surgeon has ever had to do it. So it was a mess to begin with. So time will tell.

I also developed a Staph infection in my blood system. requiring more IVs. This was discovered the day the Drs were discharging me. It is a nasty infection that can wreck the heart muscles in a mater of hours. So I had lots of heart scans. I was, disapointed at not being discharged as I had become increasingly home sick. I had told my parents not to visit as i thought I was getting out. When I didnt, the days began to drag, with no visits to break them up. In fact the last couple of days, I spent trying to hide my tears as I just wanted to get home.

Mixed in with all of the above, were fights with nurses who wouldnt listen, meals out and take aways delivered to the ward, good friends visiting and making friends with some of the nurses, I gained the trust of a Dr who I never thought I would, he even talks to me now like I am human. 9 I have had issues with him in the past) and other Drs, who gave me hope again and made me believe, if only for there shifts, that things could still get better, that i could make something of myself again, once my breathing was fixed and to him I will always be grateful, he lit a torch, in the darkness.


I saw some amazing sunrises.

Had the best picnics and time away from being a patient as possible.

And confirmed what I already knew. That I am under the best possible surgeon and the best possible team. Even if this never works, I will be forever grateful and in debt to them for there amazing skills, compassion and understanding. Not to mention their ability to not scream in frustration at the 10pm ward call they would get most nights for me, to fix broken cannulas, or if I had thrown another temperature, or coughed out some more cartilage. I am also thankful to the people who visited me and kept me sane, the ones that sent me gifts and those who well wishes I received via snail mail or online. I am a very lucky person.

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.

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.

down

I am slowly getting back in to UK time and managing the ability to stay awake during the day, so thats progress right.

I have been sorting through my holiday photos, one of those tasks with digital cameras, where you take way to many shots as you dont have to pay for printing. I am about 3/4 through sorting them but so far have 200 photos that I like eek. You never realise how many you take.

But I am writing tonight for a different reason. My mood is altering again and I dont like it. I know everyone gets holiday blues, but its not that. I am in one of those places where I dont know if it is my mood noticing more, or that things are getting pointed out more.

I cough, a lot, after being away, I am coughing more. I found that the pressure changes on the plane during landing and take off, really aggrivated my cough. So, on the plane, as you can guess, I coughed lots more. On two differnt planes, when we got off, Mum pointed out about hearing people complaining about my cough. It was the same in a shop earlier. I cant control my cough, its a violent cough to the point where I often either end up sat down making sure my bladder behaves or I end up in the loo fighting to keep my lunch down.

But this isnt new, so why I am noticing it more now.
The same went the other day. I walked past the person I have written about previosuly who I used to go to school with and who I got close to at one point. We poliety ignore one another and look the other way when we pass each other. Yesterday, we did the same as usual, walking past each other, but his girlfriend was talking to him. I noticed her looking at me, but ignored it. Mum who was behind me, later pointed out that he had said something to her and they both looked at me and she made a face, kinda like eeee.

I dont know, its a lot of things adding up, looking at holiday pictures dosnt help. but right now, my confidence and self esteem, is very low. This in the past has lead to dangerous ground. I guess it is a step forward that I am able to spot this before things progress. But that dosnt make it hurt any less.

Its time for change. I have to do something.
Just got to ride out the storm and hope for as little damage as possible ont he other side.

Treading Water

I feel like I have written in here in a long time. I mentioned last time that I was emerging from a dark place but things still have not been going as well as I might have hoped.

I feel like I am treading water in an endless ocean. Constantly kicking and fighting to stay afloat. Sometimes, I can manage it, I can keep my head above water, enough to look around, take some deep breaths and asses the situation properly. But then, other times, a wave will come and wash over me, or I will run out of strength and momentarily dip under the surface before bobbing back up to the top and gasping for air.

At one point, each time I came back to the top, I would feel relieved, I would feel joyous that there was still light and air in the world instead of the dark bleakness of under the water. But other times, like now, I go under and its hard to remember which way is up, or I think about that endless ocean and what use is it treading water constantly if there is no shore in sight?

Last time I posted, I was having trouble adjusting to some bad news. Today, I am struggling to adjust to the adjustments needed with that news, before being knocked under once again with the news about my next admission.

I know that I am being cryptic, I kind of have to be at the moment but tomorrow will bring further news and I guess that will either be a float or another wave.

To say that I am struggling at the moment would be about right. I crave so much that I dont know what I crave. I feel the need for a real good argument. A screaming and shouting match. Time to be angry at the world and perhaps bit out and cause injury. Actully, what I want right now, is to hide. To lock myself up somewhere and just cease to exist for a while at least.

Trying to deal with everything, without resorting to old methods, is a real task and a task that seems the world right now. But now is not my time to fall apart. Right now, I need to be strong and I need to put a brave face on. It dosnt matter the cost to me right now and it really dosnt matter how I do it.

Emerging

I feel like I am emerging from a cave.
There seemed to be a ton of bad news on top of my bad mood all at once and I admit, I struggled to cope with it.
I wanted to hide away, not speak to anyone, not see anyone. And I did for a while.
I went back to some pretty unhealthy coping stragies, which although I am not proud of, I wont regret as I have come out the other side.

Turns out I am not going to surgery on Monday. Kept phoning the hospital to find out about it, but nobody knew anything and kept promising to phone us back. I even emailed my surgeon, but to no luck. I know he is at the hospital on Monday, sop hopefully there will be more news from there.

Well, I hope there is, as I am starting to squeak. I get air in easier than out, so often, I end up forcing the air out, kinda like blowing candles out, which helps a little. But, with the squeaks, its more noticeable, as I can walk into a shop and suddenly everyone on the aisle turns around and stares to see what the gasping squeaky sound is.

The other issue is sleeping. I am finding t harder and harder to wake up from sleep. This morning mum stood outside my door shouting as loud as she could and couldnt not wake me. Took about 30 mins of shouting before I got to the point where I could acknowledge her. I have noticed this before, when things like my night time machine can been for over 10 minutes right next to my head, before I am awake enough to realize what it is and another 5 minutes before I can get my body to move to push the switch.

But I feel a lot more in control now. I do hope it lasts, especially tomorrow. Tomorrow is an important day. I may try and explain more here tomorrow maybe.

Wallowing

It feels like I have written here in forever, in reality its not that long.

I have been avoiding here a little. Wallowing perhaps.

Sometimes, I can look at things and I can say, wow look how far I have come. Look at all the amazing people I have met from being ill. Look how much I have gained.

Other times, I can look at things and feel nothing but bitter feelings, anger and resentment. Its hard not to picture the places I might have been in life had I not gotten sick. If I had just gotten sick from some sort of natural cause, would I have dealt with it better? It feels sometimes, that its harder, knowing that it wasnt natural, it didnt just happen, it was the result of one person. I think that also makes the psychological side harder to deal with.

The last week, has kind of been differnt again from the above. This week has more so been a mood that makes me ask why things are so unfair in life. Why do some people and families get to breeze through life without a care, while others seem to face continual set backs.

There seems to be a lot going on at the moment. Lots of things and people are crumbling, lots of people close to me falling apart or getting sick. Of course I worry about them, but at the same time as worrying, I am trying to hold myself together and appear strong for them. Its not fair if I am the one always sick or struggling if they get pushed out. But of course, covering up is never an easy subject.

I guess I have had a few scares and wake up calls this week. And my reaction? To shut myself away, to ignore everyone and block everyone out. To curl up, within myself.

The last few days I have been in a very dark place indeed. Looking back, its kinda scary to how bad things got at one point. I dont know. Words are hard at the moment. It feels like there is this big black hole inside me. Somedays, it just sits there pulsing, so I can feel it, letting me know its there. Other days, it grows, it feels heavy and weights me down. When it gets to heavy, I instead, turn over and wrap myself within it. To snuggle down with it, and pepping out, is like walking into bright sunlight.

I know there is hope, I know how well I have things, I know that I am the fortunate one and that others need me right now. But sometimes, logic dosnt make sense or my heart dosnt want to follow. Its then when things get dangerous.

At the moment, communication, just seems to not be worth the energy expenditure that it needs.

Meaning of life and now 25!

I think facebook has become a danger zone for me. I have never been one of those people, who thought much about the reasoning behind things. I am not relgous in any shape or form, but I have always believed that everything happens for a reason. For a long time, I have had this feeling, that I want to do something useful in my life. Now obviously, I am not going to solve world hunger or stop domestic violence, but I just wanted to matter in some way, to leave my mark on the world somehow. This urge was never a problem when I was younger, my impact on the world, could simply have been to raise a couple kids and have a good family. At one point, I did fantasize about being frozen and bought back to life in the future. Now most people would probably be thinking, that to be in the future, was to see the changes on the world. Nope, not me. I wanted to come back at the end of the  world. I guess to see how the story ends, meh, I was/am a strange kid.

Point being? I never contemplated the meaning of life, or why any of us are here. We all have a destiny and will reach it in our own unique way. But somewhere I have picked up my own beliefs on the meaning of life. In the back of my mind, I find myself seeing old friends updating their facebook. Getting married, having kids, having fun, buying houses. At 25, I thought I would have a family and my own house, never imagined that I would reach the point where I still lived with my parents, didn’t work and didn’t get beyond a high school education.

For a while, I have been focusing on that that I cant do. On good days it dosnt bother me, but on bad days it can get me down. But this is not what the focus should be. I need to learn to focus on what I can do, and what I can achieve. I may never have kids of my own, but I can be an awesome Auntie. I can do treats and days out, I can be the shoulder to cry on and the friendly advice when needed. Sometimes, I just need to keep all this in mind.

And speaking of being 25, yesterday was my Birthday (yay.) I wanted to do something, but overall, I just didn’t have the energy and its right after Christmas so everyone is skint anyway. So instead, I took my eldest niece and my friend out to tea in a 60’s themed American Dinner.  It might have only been a couple of hours, but it was fun.

Alison didnt like me taking her picture ha.

 We had fun with the clapper board

The toilet door!

The hot dog that took up the whole table! 

 And the most yummy milkshakes ever!! I had Oreo nom nom, Alison had Strawberry, but left most of it because it smelt too much of milk haha (Well she is blonde)

Getting in the mood to a bit of Frank Sinatra 

 

And subsequently, I had fun on facebook, adding fun titles to the clapperboard :)

It was only a couple of hours, but it was nice, to just sit and chill out to old music and be able to natter and such.

Today, I have been pretty tired, but not too much. Breathing seems to have eased a little bit, in that I can actually sleep properly now and not wake up in agony. Might try going out tomorrow and see how it is. The oddest thing today, is that I keep getting the overwhelming urge to just cry. I dont know why, I dont feel sad or stressed. I just feel sad inside. Probably just hormones.

honesty

I think perhaps my writing in her has drifted from its original purpose.
At the start, I wanted it to be my outlet, where I was truthful, no matter how much that hurt me. Then, when things where getting hard, and I didnt have the energy it took to keep everyone in the loop so to speak, I let people know about my blog so they knew where I was and such. As a result of this, news of what I was writting was trickling back to my mother and of course, not only did that hurt her, but it also meant a lot of ear bashing for me. So I delinked everywhere, and only online friends knew where the links were. Of course, anyone who was already aware of the link still knew about it.

Somewhere along the way things changed. Fear of upsetting my friends, or of my mum finding out what I had written, or even just not wanting to be a burden, meant that unconsciously, when I came to post here, it would always be upbeat for the most part.

I think I have bee fooling myself.
I can feel myself slipping once again. The self esteem going lower, the mood dropping, the urges returning. I find myself questioning myself, is my current energy dip due to my health, or my mood. And how far can I take things before people in the real world begin to notice.

I can in the most part, be sensible. I know that I need to do everything in my power to stay well for my admission on Monday and for the most part I can do that. I take the meds, run the nebs and when bad urges strike I wait them out and talk myself out of it. But every so often, it gets too much. I will have spent hours talking myself out the urges and finally settled them, until someone says something and its the straw that broke the camels back. I find myself digging out my sharps, playing with pills or simply reaching for a bottle. I am fine and I can deal with this, but I need to start being more honest with myself, things dont feel as rosey as they once did. I am spending money on stupid things, replacing emotion with material objects. I am overdrawn, which I have not been in many years. Of course this just adds to the things that bother me.

I need to get this under control, before it consumes me and things go back to the way they were.

Review - 2010

Happy New Year

And what a year it has been.
Am I where I thought I would be? not at all.
It has been a year of highs and lows, adjusting and coping. Overall, perhaps not the most fun of years, but character building as some would say.

I am going to do a round up of the year, by looking at y first post of each month for the last year.

January

Happy 2010

Well happy 2009!
Sorry I havnt updated or made the the usual type of happy new year, best worst of last year/ what i want from next year crap.

I have been allowed out the hospital for a few days again. Once again waiting on discharge that dosnt seem to be happening. At this rate I will still be in here for my next surgery date! urgh.

Anyway, I bought my laptop home with me, as I live on it. Got home, went to use it and it had a dead battery, ok, I will plug it in. And guess what wise oh me had done..... Left it tied to my drip stand in my room. Doh! So no laptop till i get back the hospital. So I am currently on my mums computer which is in the living room, so I wont use it much. They have however gone to bed, so im sitting chilling with a can of magners, bag of kettle chips and some good music. Though I will have to go bed soon else I will get moaned at tomorrow for 'staying up all night.'

Oh the joys of being home.
I promise I wont leave it so long between writing next time. And hopefully I will have something more interesting to write.

Hope you have all had a good New years day and such!

Februrary

Finally a step in the right direction

I have butterflies in my tummy thinking about tomorrow, but I shall get to that shortly.

I am fully recovered now from my last surgery. And my voice? Well most morning I have a deep crackly horse voice and by the evening I can usually just about force a whisper out. So yeah not sure if you would call that progress or not.

So the future was not looking bright towards the whole getting on with a normal life crap. So I started researching Tracheal Transplants. Which is a really new procedure. I spoke to my surgeon at this hospital about it a while ago and he said that it will be a fair few years before it became possible for me to have it as its not a common or normal procedure as of yet.

I read this article about it BBC News. And out of interest contacted one of the professors who was part of the one unique tracheal transplant a couple of weeks ago. After a couple of emails with him, he mentioned that he thought I was an ideal candidate for either a transplant or a tissue engineered airway.

So the next step is to get a referral to his team so that they can evaluate me. He said that he is in the process of setting up a world class multi disciplinary team in London. I said that I would speak to my surgeon here in the morning and ask him to do the referral for me. To which he replied that it would be great and he will try to arrange an appointment as soon as he could once he gets the referral, with himself, the ENT surgeon and the Thoracic surgeon who all worked on this last transplant.

So wow, Im trying not to get my hopes up just yet as I know I am still a long way off. But this has to be a step in the right direction right?

So tomorrow morning bright and early Dad is coming in for ward rounds to help me explain (due to lack of voice) about having been in contact and such and to request this referal. Im nervous about what he will say and if he is able to refer me to an ENT surgeon when he knows im still under one here. But we shall see.

But isnt it nice to have a bit of good/positive news for a change in here.

March

Something a bit different from my usual moaning for tonight's entry.
I website I 'work' on is having a creative competition with the theme of Orange (mainly because Self Injury Awareness day (SIAD) is approaching - 1st March) and they needed some examples to advertise it with.

This is SIAD one;

Not sure how much I like this one. Perhaps it would have looked better on a black background hmmm

hmm, it does make it stand out a little more. oh I dont know.

I also played around with an old photo that I took. I took this picture when I was away with my sister on the island of Mull in Scotland.

And after playing around with it I came up with this:

While I am here, these are a few of my favorite photographs that I have taken. owh I miss having a decent working camera =[ (although I did see a great deal on a Nikon DSLR the other day and i so so want it)

  

 

 

 

 

  

Yup, so there my favorites that I have stored online. Most my decent photographs are still stored on my old laptop whose power wire dosnt work >.< I will one day get around to grabbing all my old files off there. Oh and incase you didnt notice, I do have a kinda thing for sunsets. Used to be a thing for waterfalls (again mostly on my old comp)

April

London Free Hospital

So I have been a little out of it of sorts since I got back from London. Think I was over tired and it kind of amazed me how long it took me to recover. I mean I am what, 24 and 1 day trip, where I was only really walking around from about 4pm till 9pm, so 5 hours and it took me 2 full days just to recover enough to wash my hair. When I think that it was only last July that I was down in London and going for about 5+ hours day for 3 and 4 consecutive days. I thought i was recovered yesterday, with being in a good mood, but today I can barley keep my eyes open. Went the shop with mum earlier and fell asleep in the car just driving to the shop.

Anyway, onto other things.
So whilst I was recovering I didnt want to sleep permanently (though I pretty much did) so I began making the video that I said I had the urge to make. I have done the bulk of it, just needs about another hour spent polishing it up, playing with sound levels and fixing a couple of transitions.



Tell me what you think so far please. I know it will never do Eva justice, but as I said in an earlier post, this is more for me, to remember her by so Im not even sure if it is going to go anymore public than this blog. Plus there is the whole copyright thing to think of.

My next challenge if I decide to go public with it, is to get around the filters on youtube as it keeps muting the audio. It wouldnt be such a bad thing, but it mutes all the audio, not just the music, so I lose all the voiceovers too. I either need to find different music (but im kinda attached to the stuff I have, especially the last bit) or find a way around the detector.

So seeing as I am working backwards in time pretty much, im going to put down what happened at the hospital in London. I will eventually post a second post of what I did in London, but I am still in the middle of fixing the pics I took. (No tripod and it was wet and miserable so there are not many good ones)

So we get to the hospital, and it dosnt look like a hospital, it looks more like an old fashioned shop (again look out for pics.) I saw the consultant he is supposedly the best surgeon who deals with tracheas in the UK. He had not read through the letter so he glanced down it while we were sitting in the room. Then he asked to see all my medications. He laughed when I pulled out a big bag and was a little shocked at the amount of them.

Once that was done with, came the icky part that I knew would happen but was hoping it wouldnt. He decides to put a scope down while I'm sat there. So first off he sprays my nose with the icky tasting stuff that numbs it and up goes the camera. Now I have had this done a fair few times in the past and it always feels like I am chocking on it, however it was gentler this time as he couldnt go very far down due to my trach (bonus!) I was a little disappointed still though. In my usual hospital when they put the camera down, the images are displayed on a big screen behind me, so I usually ask to be turned around before they start meaning that I get to see the screen myself. (Yes I am a fan of gore) This one however was only a little one with an eye piece.

Anyway. he basically said that my upper air way is very red and very inflamed and it shouldn't be. He therefore thinks that something must be causing the inflammation. He agreed that I should have as much gunk on my chest as I do and that it shouldnt be as thick as it is. So he thinks that something is irritating my throat, creating the inflammation and the gunk. He asked if I had had a swallow assessment (which I hadnt) as it could be something like food or drink going down the wrong way causing it.

He has asked my surgeon here to organize a video fluoroscope, which is where you have to eat and drink different things while being observed and x-rayed. He also wants to get me in for another Bronscopy with an over night stay so he can get a better look. And if the professor person I emailed is free he wants him to sit in on it.

Ultimately, further action will depend upon the outcome of those 2 tests. He did talk a little about tracheal transplant as he knew that was what I had spoken to the other surgeon about. He said if nothing else works, then the transplant will definitely work to fix it (YAY!) However, it is not yet a licensed procedure in the UK. Which means that it could be years before the can legally perform the surgery on me, but im still hopeful. He also said that the success rate is much better if I lost some weight. So thats something I am going to have to work on.

He also looked at my neck, where it has been red and sore. He said it looked like Pseudomonas which is a bacteria that is fairly resistant to treatment. He said if it was this, then the chances of treating it would be extremely rare as it is hard to get rid of given its position. The next morning the nurse swabbed it and sent it off for cultures anyway just to be sure. I do have some bactroban there, but I am reluctant to use it. The bactro ban is a cream that can help clear things like MRSA up, however if you use it to much it wont work any more, so I am only going to use it when it gets to the point of being to sore to manage with normal painkillers.

And I think thats everything. so its all a waiting game at this point. It will probably be June when I next go down to London as the surgeon is away for April and I am away during May.

May

Every time is adventure time!

Today was a bank holiday, which meant a long weekend. (woo) Not that it makes a huge difference to me but my mum had an extra day off work and yeah.


Friday night, I didnt end up going to bed till about 2:30 am (yeah I know that isnt exactly late for me, but I do try to go earlier on a Friday as I have to get up to help mum on a Saturday morning.) But it was Eva's memorial and it was being live streamed from Canada.


It will be availble soon to watch (well you can watch it now, but its not good quality) but I felt the need to watch it live and I am so glad that I did. First off, hearing how Eva grew up, how her spirit has always shone through even when at her sickest, listening to her friends best memories of her, learning how much her family treasured her. She really did live a wonderful and full life.


But more than that, with the live stream, there was also a live chat. I was able to talk to people who went to school with Eva as well as others whose lives she had touched. It was nice. Her legacy truly will live on.


So I have decided to stop being a wimp and so I am going to upload the video I filmed at easter as a record of my voice. The quality is kinda crap as I had to turn my mic volume up full and I was only using the one installed on the computer, so you can hear all the computer workings too. Maybe at some point, I will dig out my old mic and redo it.





So yeah. I know I have a horrible accent, but that is my voice at the moment, sounds kinda like a whisper. I am fine around friends, but often if out, strangers ask why I am whispering. blah. Also, its harder to talk than normal talking as I literally have to force air out of my throat. If I talk too much (which isnt a lot really) I tend to get bad headaches, I can only assume these are from lack of oxygen or something. I tend to take painkillers for them which numbs it a bit, but sleep is the best cure =]


There has also been another change. A more visible one if you like.
I have changed hair color. I would post pictures, but I am not that happy with the pics I have at the minute and I want to put a few pics in from a while back, so maybe I will do that tomorrow.


So I have been shopping and got a few new top for my hols and I am also in the process of moving my 'entertainment system' around. I usually have my wii plugged in under my tv and my cable and dbox under my tv put not plugged in. The reason for that is that my tv is in my wardrobe type thing on the wall. The wii fits on the shelf underneath, but the cable and that just about fit, but once you put the wires in, the doors wont move past it. Well today I managed to get a long extension lead so I am in the process of moving everything to the other side of my wardrobe where there is more room. (though the wires will look a bit more messy) it should prevent me having to plug everything in all the time and I think the remotes should still work from my bed (bonus!.) I am part way through doing it, but I have had a few issues, my dbox currently wont pick up any signals, I should have checked it really, but it was working last time I used it (maybe a month ago) and its rare that all the channels go at once, so I will have to have a better look tomorrow, no doubt I have wired something in wrong. 


A dbox, by the way, is a german satellite receiver that runs on the cable (now virgin) tv system. You usually have to program it yourself, but you get more channels than you would on cable alone. (shh)
Once that is working I will need a longer scart, then to decide if I want to plug my dvd player in or just stick to running dvds through the wii. hmm. I've run out of scarts though, but maybe if I can get a long scart to phono It would be worth plugging in also. (hehe no wonder dad shouts at the electricity bill)


I might post pics once I am done.


Anyway enough rambling.

June

The wanderer returns

From the title, I'm sure you can all tell that I am back. =D

I had a good time, surprisingly after a rough start, but things did eventually begin to settle (as the weather got warmer oddly enough) and I am pretty much back to normal now. Still some possible infections, for which I need to run some swabs and I see my consultant Monday. So overall all good.

I was going to make a couple of updates while away. I bought internet credit as some places had wifi I could pay to use. However, after paying extortiant rates for it, the connections where really lame so I ended up using it mainly just to keep up with my emails. (South of France charged me €15 for 3 hours. Italy was €15 for 5 days. Frances didnt connect half the time and ran slower than dial up when it did. For the first 32 hours in Italy, I thought it wasnt working right as it lost connection every 4 minutes and was slow. However, I soon discovered we had a power cable running above our roof and the van was also made of metal and so would not let wifi signals through :/ After that I learned to charge my battery and go sit on the bench up the road a little.)

For the last 2 weeks, I have watched the grape vines grow.

Seen some wonderful sights.

Watch the sun gown down (countless times)

Admired the poppy fields.

Experienced True love in a holiday romance.

(Aint he handsome. And he looks like he is smiling at me. My torts have a down turned mouth but his makes him look happy. Oh and he came upto about my knee if I stood next to him, so rather a big fellow. Unfortunately my dad wouldnt let me steal him and take him home with us)

Visited St Tropez.

Where all the rich kids were showing off on Daddys boat.

Ate delicious Italian Ice cream in Simeone. (virtually every Ice cream shop, which is pretty much any road in Italy looks like this. But simone has to be the best. Its a little island style place on the edge of Lake Garda. And for a tiny town there are about 5 ice cream parlours plus resturants doing fancy sundays. The choice of flavors is immense, from the usual fruit one to Kinder, Bounty and Mars to more unusual flavors like haribo and bubblegum. A lot of shops trying to get your attention with free samples. nom nom)

Had nutella (Though not a jar this size =[ ) by the bucket load.

Realised the America isnt the only place that specialises in Fast food.

Had some quality time with my daddy.

Shared lots of Love

Eventually annoying my dad with the camera (I have some lovely close up shots of his nose)

Watched the sky change color (while discretely giving parentals alone time hehe (Yeah its still alone time, if i am a couple of feet away taking their photo)

Enjoyed opening the curtains to this every morning.

And closing the same curtains to this every night.

Spent an exhausting day in Venice.

Observed the locals (gondoliers)

And their boats (Gondolas)

Whatched Sinta Marks square transform from dry land, to having a strip of puddle down one side, to 10 minutes later only having one strip of path left.

At which point, we headed for the boat as we didnt want to have to wade through the square if it rose anymore. Oh and as I was having camera fun with the water and lights, we left late and so the gates where closed when we got back to the place we were staying. So I had to climb like a million stairs (literally) as we were on a mountainside hehe)

And then drove home, past all the snowy mountains. Its amazed me since I was very small, how that snow could exist. In the past we have taken mountain roads rather than the tunnel (They charge nearly £50 to go one way through the tunnel and the mountain roads are a lot prettier and more fun to drive. The year I passed my test it was great fun really using the gears on the car to climb narrow windy steep roads up the mountain. We often travel is shorts and t shirt as its cooler in the car (habit from pre air conditioning days). But its rare that the passes are open when we go in May. You get about 3/4 of the way up and then the road shuts as there is too much snow to drive past. We have, before today got out in shorts and had a snowball fight on the way hehe. its not cold up there, well unless you pick up the snow.)

And now I am back home with a mountain of washing and lots of photos to play with.
Though annoyingly, I have gotten home, been using my laptop the whole time I was away. Worked fine the first night I was home. Next morning put it on and its died a death. so it has to be sent off for repair (though its going to take a week before they can pick it up so I dont have much faith) that being said, updates maybe sporderic and not at my usual 3am posting time.

Oh and I am still deciding what to do with all my photos. Obviously I want to tweak some of them, but I still want to show them off. I may, use my other blog, that I have never posted on, to put my photos up, but I will update here, should I decide to do that. =]

Thanks for reading. And feel free to comment and such.

July

Up, Down, Round and Round

I dont know how to start this post.
My head is in a bit of a mix up at the minute.

I keep getting anxious. When I think of the surgery they have planned, my stomach jumps a couple of feet. Its like being on a roller coaster when you go over a dip and you leave your stomach at the top, thats the kind of feeling I keep getting.

I think its the prospect of pain that gets me at the moment. I dont deal well with pain (Yeah good aint it for a self harmer lol) Pain brings back to many memories and then there is the prospect of struggling to breathe that brings back yet more memories. I am always scared of making a show of myself in surgery. I dont want to go into a panic, nor do I want to have a flashback or something whilst in hospital. To a point I can manage it, but if it where to happen when I dont have strict control, such as when coming around from anesthetic, then it can quickly escalate.

I think I need more information on the procedure. The thought of them cutting back into my chest. The last chest scar was super painful and took ages to heal. It was months before I could comfortably wear a bra. I have so many fears in relation to this surgery. What if it goes wrong? I dont want to end up in an ICU down in London miles away from my family. Its my family that get me through all the emergencies.

Its going to be a fairly big op too. At a 4 hour minimum, I know I have done worse, but 4 hours is still pretty heafty, considering my last hernia, was open abdo surgery and was only just over an hour and my trach was less than 2 hour but they fitted in several lines and it was a full open neck surgery.

From what I gather, this will be open neck surgery too (dont I look forward to not being able to turn my head for a couple of weeks) As well as them taking the rib graft. Think I am going to be pretty whiney after this one.

But then my head jumps the other way. What right do I have to fear this? I am the one requesting it, I have pushed for them to try anything they can. I cant help but think of my neighbor that I mentioned a short while back. He was in hospital while I was in London. They removed half of his lung and now he is likely to face a long stretch of chemo. He hasnt requested any of that and has had no choice in not going for it.

What is even more odd is that he was on my ward in my local hospital ha. It is weird to think of him in the same room I stayed in (I had been in pretty much every room, but he was in the room I was in when I arrested) and working with the same nurses that I worked with for so long. For all I know he might even have the same surgeon.

I dont know, part of me really wants this and another part of me fears it greatly. Another part of me wants to take everyone elses pain and treatment off them so they dont have to go through it. You know, I hardly know my neighbor, never spoke to him, but if I could go for that surgery and treatment so he didnt have to I still would. I dont like seeing others suffer and just wish there was more I could do.

Do you see what I mean about my head swinging from one thing to the next and back an forth.

Mentally I am feeling better than I have in a long time. I am not cooking myself up in my room, im sitting outside and I am planning. But I dont know how long it will last. I still find myself lying in bed of a night watching the sun come up before I sleep. Its been a long time since I went to sleep in the dark. Maybe my dad is right, I have read to many fantasy books and have since turned into a vampire ha.

I life revolves around lists these days. Things I need to do, questions I need to ask, messages I need to send. Its almost like my mind dosnt do the day to day stuff anymore as its too busy going around and around all the medical stuff.

August

finding things

Ah, so my last attempt at making my blog look pretty failed ah. My comments refused to work. However, I have spent a while now playing with code and reminding myself just how much I hate HTML as well as bugging a friend to get him to spot the bits I had missed in the code (thank you andy =] ) So the comments are now working (I think) So please let me know if there are any more issues or it is hard to read.

Today, I have spent the majority of the day literally tipping my room upside down looking for my ipod. I HAD to find it by this evening as mum had said she was going to come help me look and the last thing I want really is mum looking around me room :/ Where was it you might ask. Was it in some obscure place that you would never think to look. Nope, it was on my bed lol. I had searched everywhere including my bed. Patted it down and such to no sign. I didnt want to strip it as I would need mum to help me remake it, but it was a last resort and she was about to come up anyway, so I stripped it. And there it was, under all the covers, in the very far bottom corner of my bed. (I sleep in a double) so now I have my baby back.

And yes, that is a Toy Story 3 background (It changes picture every 30 seconds or so) with a rainbow dock. I love my ipod. It also says 'To infinity and beyond' whenever I unlock it and theres a snake in my boot when I turn it off. I will grow up one day. (Did I ever mention that my message tone on my phone is Spider pig from the simpsons? and my ringtone is the original Pokemon theme? I dont have sound on my phone often, but its good when I am on the train and turn it on hehe.

I have a big achievement to post about this weekend!!!

I can get my hair into pigtails!! You might say, that isnt much, but it is!! My hair has been to short to go into a bobble for the past 5 years! A couple of months after I got my hearing aids, my hair annoyed me as I refused to wear it up as you could see my ears so I got it chopped short to hide them. It has stayed short ever since, getting cut ever 4-6 weeks. Now it hasnt been cut since December, except for the trims I do myself and I put some layers in the front. My hearing aids have since improved and are not as chunky as they once were, nor do I have big huge moulds, so they are not as noticeable, not that I will be wearing my hair up much, but still.

Oh and to toally relive my childhood, look what I bought yesterday.

I got into Dawsons creek when I was about 15, most people I knew had already been into it, but had stopped watching it by the time I got into it. Well I loved it and used to tape it (Yes on old VHS) to rewatch. Always said that I wanted to find myself a Pacey, he was like the silly yet sweet guy in the series and of course he was cute (Joshua Jackson) Well anyway, when I was very ill and in ICU, I refused to sleep no matter what they gave me and I started staring at the machines, which was making me more ill. They used to put the tv or radio on to try and interest me, but again, I wouldnt watch it. So mum bought a load of my Dawsons Creek videos in and I would semi watch them and the nurses knew the series so they found something to try to talk to me about and get me to socialize.

When I got out of hospital, the series had just stared to come out on DVD and so I bought each season as it came out. They were all well played as there wasnt much I could do except sit around and rest. Now, they are lined up and take pride of place on my shelf under my TV (Next to my House MD box sets) but they have not been watched in at least a year, probably more.

I saw the series finale yesterday, which I never owned on DVD so I had to get it. Perhaps the up and coming weeks will bring me rewatching the old series, I may even take the finale to London with me, though it is sad.

Oh and it was a wekend for finding stuff, I managed to locate my internet dongal too, which means I should still have internet while in London, though I dont know how much I will be upto using it. Its amazing what you find when you clear out your room, things you didnt even know you had lost. I think I must have come across at least a million of these little things.

The bane of my life. They are called Heat Moisture Exchange (Or Sweedish Nose) and basically I am meant to wear them of a night to warm and humidfie the air I breath in to stop my chest clogging. They work a little, but are not ideal for those of us with big boobs. I lovingly refer to them as my St Bernards Barrell as I feel like the St bernard dog when I wear one.

And though they do help, I often find them on the other side of my room n the morning. Either they annoy me to much during the night and I throw it, I take it off to have a good cough and forget where I put it. Hence why there were tons hidden under my bed.

Ah well, hope you all had a good weekend.

September

Tubes and inspiration

Right now, I feel surrounded by tubes. Kept alive pretty much by tubes.

Tubes to feed me oxygen, tubes to feed inhaled medication, tubes for fluids and IV medication, tubes to feed oral medication. Tubes tubes tubes. I think the hardest thing about tubes is that it is pretty much impossible to feel anywhere normal whilst surrounded by them. Going the toilet? Dont forget to take your drip stand stand with you. HEadache getting to much, put your oxygen back on, chest to dry, pass the nebulizers, medication time and still not able to take oral meds, put it down the stomach tube. Airway not holding open, lets stick a tube in it.

Tubes can be a god send, but at the same time a restriction. They remind you that things are not as they same, they keep you tied down.

My arms are bruised from yesterdays attempts at drawing blood. Today in theatre, they poked and proded and had a couple of attempts to get an IV in, with not much luck. Eventually decided to use gas to put me to sleep. I awoke with an IV running, back of my right hand, not the most comfortable place, but its in. Its also starting to block, but it has been well used. Hartmens, glucose, potassium, saline, morphine, ondanstaron, paracetamol to name but a few.

I have to admit I was slightly disapointed coming around after surgery. I came around shivering like mad, but thats not unusal. Coughing my head off, again normal, and struggling to breathe again normal, but not what I had hoped for. I knew things wouldnt be brilliant right away and yet I still hoped. The machnies kept beeping and my oxygen got turned up. After the initial I feel crap put me back to sleep feeling you always get when you first come around, I settled, until another need made itself known. A need that would cause great pain. I needed to wee. I assume they had pushed a ton of fluid into me and my bladder was busting. I was not doing the whole bed pan thing in recovery, so I grin and bared it.

They wanted to sit me up to help my sats, but there was no way I could bend in the middle. I hoped to go back to my ward soon. As soon as I got back to the ward, I rolled out of bed, again not able to stand upright and dashed to the loo. wow it felt good. what a relief. Then my breathing came back to the forefront of my mind as I realized I couldnt do it to easily. Snuggled back into bed with some oxygen pushing my sats back up from the 88% mark.

Doctor came to see me later on. He tried covering the tube, I managed about 4 breaths before I started to struggle. Hopefully it is still swollen. Tomorrow, I am down for a tube change to a fenestrated tube (hole in the top) and then see if I can cope with that covered.

Fingers crossed again.

I think I might be able to tomorrow. I am already getting a little more voice out.

Its strange though, its as if I can breathe in two differnt ways. The way that feels natural, but leaves me breathless, I assume through the tube. And the way that feels alkward and takes concentration but leaves me able to breathe better, I assume through my mouth. Tomorrow will tell when the easy way gets blocked.

Also I wasnt meant to have a NG (tube in my nose to tummy) but I am still nil by mouth until I get a swallow assesment and as I have night time medication that can not be missed (anti rejection) they had to put it down. Which I hate and cant wait to get out haha. In the mean time I get to look cool with a yellow tube hanging out my nose.

Through all of this, I dont feel as bad as I thought I would. I guess it could be many things, the support of my friends and family, the drugs or even the fact that I seem to be drawing strength from those around me.

I was going to orginally make a post about how I wish people would quit with shoving things up my nose, tubes, cameras etc. But then the lady in the bed opposite me came back from theatre. She obviously has a lot going on cancer wise. She was in theatre for at least 6 hours (eek) looks rough and has tons of tubes. Yet her family came in and though she is obviously in pain (I can see her monitors) she was smiling and making jokes. You could literally feel the love radiating from her area. Kinda humbling really.

I have also been thinking a lot about a lady I heard about in the news the other day. She has 2 kids and CF. She needed a lung transplant, but struggled to get one. Bascially she has lived in the ICU since April this year on a vent. Seeing her child twice a week, waiting to exhale as she put it. She died the other day. Its such a shame. Everything she has been through and for what? All the time waiting and hoping, the family holding on by their finger tips clutching at straws and jumping at every phone call. Only to lose her anyway. Again, you can see the love around the family and my thoughts go out to them right now.

News article

Waiting To Exhale

 October

Normal

I have had an amazing weekend.
Nope, I didnt do anything huge, life changing or even that exciting. What I did was, be almost normal. I had a day that someone my age might have, I did things that I used to do. I paid for it afterwards, but I had the fond memories to go on with.

Thursday I picked my niece up. I wanted to steal my sisters photos, and I managed to do all that without her noticing me. Which is pretty good as not long ago, I could have coughed and panted to much to do anything in secrecy or even to have the energy to do it.

Friday, I scanned a lot of the photos and got them printed. I also did some shopping and had a movie night with Alison and my niece. Saturday I got up early. And it was early, it was like 7:30am!! And I took Alison to her Ice skating lesson. My niece and I both got on the Ice afterwards. I didnt do much last time I went skating as I just didnt have the puff to do it. I had to stop every half a lap to get my breath back. This time, I could get round at least 2 laps before needing to stop. I didnt do to much as my blades need sharpening and the rink was crowded, but I was pleased with what I did do.

I had a wander around the shops and took Alison home. Had a bit of an argument at home, which wasnt fun but oh well. Took my niece home and came home myself. Sunday the spoon theory really did come into play. Mum commented that I was breathing heavy again and I just felt so drained the entire day that I hardly moved.

Today, I still feel so drained, but I woke early for me this morning. I found myself sitting bolt upright at 10:30am gasping for breath. I ran some nebs and rested, but sat more upright. I checked my peak flows and they had suddenly dropped to 140. I was thinking oh no, not already. But after some nebs and moving about today, I seem to be breathing a little better. So I have everything crossed that I had either drained myself too much on Saturday or that I had slept with my mouth open and dried my throat out.

Remember a while ago, my surgeon here had applied for funding for me to get a humidifier to help ease the issues I was having with my trach? Well, I got response from the funding place on Friday. It only took 4 months!! Anyway, they have granted me the funding. I didnt know what to do at this point, as I dont have the trach anymore so I didnt know if I was still eligible. Then came the issue of, would it help now? and if it didnt, would that not be a waste of money if I still got it. I put it on my list of things to get sorted when I get a chance.

Today, the respiratory nurse phoned. She had the letter confirming the funding and wanted to clarify a few things. She said she had discussed it with my surgeon, who knows I dont have the trach, but given my current issues, the surgeon still thinks that I should get this equipment. That it might help with the issues I am now having. For example, if I ran it through the night, I shouldnt wake up needing to urgently neb all the time. His original hopes were that, if I had this equipment and slept with it on, it might help my breathing so much that I wouldnt need to neb during the day at all, and so I could get on with things easier. So apparently the medical engineers at the hospital are currently in discussion and meetings with the company that supplies them to discuss which one will be the best for me and how to get it and such. Its strange how much work goes into getting one piece of equipment.

I have the solicitors tomorrow, which I am dreading. Getting through that, especially without crying, will be a challenge. I did however, have to calculate all my hospital associated stuff. In the last 13 months, I have had 72 separate appointments, spent 142 days as an inpatient in hospital and been to theatre 16 times. No wonder this year seems to have vanished with nothing to show for it.

But, through all that, I am inspired. Greatly so. I stumbled across the blog of a lady who is currently on the heart transplant list due to cardiomyopathy (Which is generally when the muscles of the heart become weak) She had an internal defibrillator planted in her chest, which went off during her speech on her wedding night. Since then she has detoriated and now has, what is effectively an artificial heart, while she waits for transplant. She has to carry part this around, in a backpack style bag. Yesterday, she posted about what she has been up to. Andrea has been going to the GYM and participating in Yoga and pole dancing classes. WOW. I mean just wow. I cant even bring myself to go the gym with a working heart, never mind carrying equipment and whilst on the transplant list. Kudos to her!! I really hope she gets her call and soon. Her blog is here if you wish to read http://stayingtruetomyheart.blogspot.com/ )

November

Halloween

I made it out for Halloween!!

I woke up and still felt rough, but no worse than I had the day before, so I rested for a while, clocks had gone back an hour so I had an extra hour to rest anyway hehe.

I started the day by sitting in the kitchen in my PJs eating a sausage sandwich and carving my Pumpkin. Mum had done sausages for breakfast but didnt want to wake me so left mine cooked in the fridge, I was able to just heat them and eat, I have this phobia thing of cooking sausages, I can never cook them right, so I avoid it at all costs. So the TV went on and I got to work on my Pumpkin. I was something I had said I wanted to do this year, as I have never ever carved one in my life. Well it came out wonderfully!!

I even added a bat in the background. Of course, me being a big kid, couldnt wait until dark to see it lit up, luckily, our downstairs bathroom dosnt have any windows in it, so I was able to balance it on top of the loo to light it up and photo it. I sent a picture to my mum, who rang me to ask where I had bought that from hehe.

So then, I began to get ready. I took it all very slow, literally, it took me about 3 hours just to get ready. My makeup didnt come out anywhere like I wanted it to and I wasnt entirely happy with my costume, but I loved my wings!! And as they say, you learn from your  mistakes for next time.

Though, I did make the mistake of getting all ready, then getting int he car and realizing that I needed petrol. Yeah, I got a fair few odd looks in the petrol station and one of the till operators had a little girl with her who was whispering to her mum to ask me if I was going out that night. It was so sweet. But I could hardly answer as my voice completely died.

This is my nieces pumpkin.

I gutted it for her, but she did all the design and carving herself.

My nephew wanted a fancy design, so we worked on his together. He wanted Sonic, so after a fair few failed attempts at drawing him, I finally managed to get one that looked ok and so we carved him out.

Later on, I was just sitting talking to my sister for a bit with a glass of wine and some music. Its ages since we had a proper chat, what with me not being able to use the phone and such so it was nice. But lately, I find that my hands need to be busy. I hate just sitting, even if its watching TV without something in my hands. So my nephews pumpkin was still sitting on the table, so I took a pen and began sketching on the back. Before I knew it I was left with this.

Its stitch! Though it looks kinda gruesome as you can see the marks of sonic n the background and so it looks like stitch has had surgery on his head. I also did hello kitty on the on the side and the disney logo on the other side, but I was just playing by then.

So it was a fun, but exhausting night.

As I said, it has been a long time since I have spent that much time with my sister, it was nice to catch up, but also in a way, she got to more so see where I am up to health wise at present. After walking up the path, she called me darth vada as she could hear me a mile off and at one point she asked how on earth I manage to sleep as I was coughing so much.

My cough did seem bad that night, but I think that was because it was warm in her living room, but the cough has still stayed to this point, so yeah.

Things are strange with my breathing. I would say that it is not to bad at the moment, considering this time frame after surgery, is when I would usually be seeing my surgeon. But then, when I think about it, it is still bad, I just think I have adjusted to it now.

When I first got the trach out, it was like wow my breathing is great and I was suddenly able to do things. Then it started to go downhill and every step down felt like a big deal. It was a huge step from feeling great to needing surgery. Now however, even the surgery dosnt leave me feeling good, so its not such a big step anymore and I in a way expect it.

I walked up the stairs earlier and mum was in her room, I was putting washing on the rail to dry, totally oblivious with my mind on other things, until I heard my mum shout something, I put my head around the door as I couldnt make out what she had shouted. Turns out she had shouted that I sounded like a steam train and the fact that she could hear that through a closed over door.

So I dont know. I think perhaps, my breathing is now, at the stage I was at with the trach, minus the horrible bits that go with the trach. I guess I will find out more next week hopefully. It just gets annoying as there is so much that I want to be doing and getting on with my life. The things my friends are doing, working, house buying, having relationships, having fun. I will get there one day, I know I will, for now, I just need to pace myself. I can still do most things, I just have to do them slower than I would like.

December

The Royal

SoI vanished for over a week, and what a week it has been.
Last time I posted, I had started some anti biotics as I was feeling unwell. I went to bed and slept well, though did wake up early to mum shouting at me to do my nebs as I was coughing a lot. I felt even worse when I woke up so I checked my temp, and sure enough it was high again at 39.2. I was starting to worry, as the temperature was so high and I felt so rough with it. Of course, me being stuborn, was doing the whole, I have meds, I am fine and not getting any further help. So I tried to sleep it off.

By 5pm, I literally felt like I was dying. Everything ached so much, I was shivering despite having many layers on and although I felt the need to cough, I wasnt, partly due to hurting so much, but more so because my chest was backing up. I checked my temperature again, and it seemed to be going up and was at 39.8, despite having taken painkillers an hour before.

I knew at that point that I needed more meds and I really didnt want to go through the night incase my temp rose anymore. From training I remember that 37.5 is a temp, but once you get to 40, you run the risk of brain damage and seizures. So off I went to the Royal Liverpool Hospital. Now anyone who has known me for a while, knows how much I hate that hospital. To be fair, its about 3 years since I was last in there. But generally its unclean and the staff dont know what they are doing. I had no choice at this point and so off I trundled to A&E.

As soon as I stepped foot in A&E, I was moved straight to resus as my breathing was very noisy. After sometime, I saw the doctor who ran a load of tests. I had a fast pulse and high blood pressure, but my oxygen sats were remaining stable at 96%. Although they were not low, the doctor decided he wanted to check my arterial gases anyway. Ouch!! My artieries are well battered and deep, it took him a couple of tries and he hit a nerve a few time, but eventually got it. Well, all my gases were out of the normal range, meaning I was storing Carbon Dioxide. This along with the temperature was why I was in so much pain. I was started on a couple of differnt IV anti biotics a load of new nebs and some painkillers. I was moved to an assessment ward.

They expected the meds to kick in pretty fast but 24 hours later, my temperature was still jumping every 2 hours. There was also difficulty keeping an IV in as my veins were shutting down within an hour of stopping the IV. I was changed to oral anti biotics and given tons of chest physio and nebulizers every hour.

I dont deal well with small amounts of sleep so being woken constantly as well as feeling crap, began to wind me up. The nurses were busy and so when I started to feel rough, I was unable to do much. I told them my temp was going up and that I needed painkillers and a drink, all of which I kept getting told, in a minute. I curled up in agony but then began to panic. My throat was dry and felt like it was closing not to mention my muscles were begining to ache more.

In the end, I burst out crying at one of the nurses. She was a little shocked, but then told me that I didnt need oxygen as my levels were fine according to the machine. At this point, I wanted to scream that my levels where fine last time and in A&E, but that wasnt why I was on oxygen. In the end, I demanded to speak to a doctor, as I was getting scared my airway was about to shut down again.

The doctor didnt really listen and in the end turned around to me and said, well there is no mircle cure to fix your throat, you should just learn to get on with it. At this point, I truly wanted to scream. I was not looking for a miracle cure, I was looking for the correct meds, and for someone to keep an eye out and keep me breathing should my throat go on me.

Anyway, long story short, they wanted rid of me and so moved me to a respiratory high dependancy ward. This was much better, it was clean, the staff knew what they were doing and I was able to get some sleep.

It took about 5 days, for my temperature to settle down, but then my cells in my body began to play up. The CRP which shows if you have an infection, should be about 5 or below, mine was reading at just over 80. Then, my immune system took a hit too. As I began to get better, my infection fighting cells, dropped right down to almost zero. I was immediately put in isolation and everyone who came in had to be gowned and such.

I was not allowed to leave my room, until the cell count came back up to closer than normal. I had bloods drawn daily and a load of tests done to ensure that there is no underlying reason why my count dropped so low.

I still feel pretty crappy and keep getting stabbing pains in the bottom of my lung that has had surgery. But now, I just need to work on getting better again. Its amazing how much fitness I have lost on this admission. Usually, I work hard to keep moving, but feeling so rotten and being in isolation, meant that I didnt really. Simple things, like tying my hair up today, left my arms aching like mad. So thats my next thing to work on.

Not to mention that I now need to rearrange my admission to London as I missed it this week.

So that was my exciting week, spent in the hospital, again, bored out of my mind. I also missed my mums 60th brthday. I was discharged yesterday, and now I am going to enjoy curling up in my own bed and sleeping right through. No sill early morning breakfast wake up calls.

Present

I should probably analyse all that. But I gues, just looking through myself, I can see why I am so tired. It really is 2 steps forward and one step back.

I shall write more tomorrow I think.

Right now, sleep.