Wednesday, March 12, 2014

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.

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)

Horsing around in Camden

Thursday, February 06, 2014


The main purpose of this entry is to say that I will be temporarily deleting/hiding my blog for about 10 days in the not to distant future. I have something big coming up and previous times that similar things have happened, the media have not be very kind to me. That being said, its easy to google someone name these days and I dont want anything here to end up in a newspaper, still working over the issues from last time that happened. So dont be alarmed if you notice it missing, it will be back.

Other than that, I continue to plod along. Quitting on the surgery, doesnt mean that suddenly everything is alright. Though I am not spending as much time in theatre and hospital, I have essentially swapped one set of issues for another. Talking is very hard work and my voice is weaker than it has ever been. Breathing is still hard work and the tiredness is always there, not to mention the shortness of breath. I still cough so much that I have frequent bleeds and everything hurts.

I do in a way miss the hospital. The knowledge that things will get easier. The people I am around, they are like friends and I think that it is ok to miss them. But I am enjoying being out. Finding plenty to occupy my time and lots of exciting research stuff coming up. Finally feel like perhaps I am heading someplace, able to give something back.

Just taking things one day at a time. And right now, all my energy is going into sorting out my bedroom. It already looks a million times better and there is still a long way to go.

Today however, i feel asleep on the couch in an odd position and so my ribs are sore tonight. I dont think it will ever fully be healed where they took the cartilage out. But if I can stopp aggrivating it will my cough, all will be good.

Oh and I have not read in ages, but picked up a new book the other week and now cant put it down. Its the Divergent book, so that is taking up some of my time at the moment. Oh well back to it.

Saturday, February 01, 2014

The past (contains abuse)

I am pacing myself and still doing well. My mood is good and my health is stable and for that I am most thankful. It makes other things easier to face.

And example, tonight, whilst watching casualty with my fambo, one of the stories was a girl who had been raped. She didnt think people would believe her, but then confronted with the person who did it, she was like a rabbit in the headlights. She didnt know what to do, where to go, but the fear, you could see.

I know that it is only acting, but the part was played well and bought back so many memories. It is something I have struggled with for years, still do, but its not something I mention, not something I can bring myself to confront. Mine was differnt, for a lot of reasons, but, I didnt want to go through with charges, because I didnt think people would believe me. And truly, they shouldn't. I would say that I was assaulted, but I could never say that I was forced.

The person who did it, kept me locked in his flat one night when I cared to much and tried to help him. The night was a very long nightmare, where I almost lost my life more than once. I hurt everywhere from being forcably restrained. A 16 year old girl has little chance of escape from a 26 year old male, yet I tried. It resulted in strangulation more than once. To this day, I still feel that I only survived that night due to trying to be cunning and pretending to pass out in hopes of getting him to let go. I think the final time, if I had waited till I passed out fully, I would never have come around. But it was on the third time that I gave up all hope, that I came to the conclusion that nothing matter because I wasnt getting out ever again.

Every beat of my heart seemed to bring a new surge of fear and I fought just to take air in and out of my lungs. I stayed in that state of fear and anxiety for hours that seemed like days. (Months afterwards, I made a comment about it (I never spoke about anything from that time very often, even though my family knew, the police had told them everything they knew)  about how she thought it was longer than just one night and all I could think of, was that it felt like it. During that time, I stayed awake, thinking and thinking, of ways that I could escape with my life intact. I tried a few methods, but it never ended how I had hoped.

At some point, he decided that he wanted sex. I said no, of course. But as he continued to pester with sentences such as, I will open the door and let you go as soon as I am done, or I will kill you if you dont, then I can do what I want.

I didnt say no, I just lay there, trying not to think, trying to space my mind away from it all, trying to slow my heart rate down as it felt like it was making a brewak away from my ribcage. It wasnt hard to get lost, everything hurt so much, from my muscles, to my neck, to my head. It was easy to get lost in the pain. But getting lost is differnt from freezing. I know why I did what I did, but I could have fought more, I could have kept saying no.

I did get away in the end, after I had been made to wash and change of course. And to wear something with a higher neck to cover the bruising that was begining to replace the red marks. A friend talked me into going to the police, but even at 16, the police officer who came, was distant and pretty much said, you have no chance of a conviction. It was only the persuasion of the person with me, that made me go through with the exam. I remember that day, even though I hadnt slept for what felt like days, like it were yesterday. I  remember, even in the police station, sitting on the floor behind the door and pushing myself into the corner. The room just felt to big and I needed the feel of the walls behind me.

They didnt know where I had gone when they came to look for me, looking through the open door, searching to where I might be, asking each other in the hallway.

These days, I can look back at it distantly. Dont get me wrong, I have never properly been with a person in a sexual way since, but the fear doesnt push as strong now when I think of it. I still have vivid memories, but they are unlikely to go now and I have learnt to live with them.

I remember a friend saying to me long afterwards, that she thought that I was making it up for some reason at first. That given my ages maybe I was being dramtic or something. But then, when he confronted me, that I just took on a totally differnt look, one she hopes never to see on anyone ever again.

That is what it remined me of tonight. I struggled with that for a long time, still do to a point. But gradually starting to come to terms with things. Stopping myself from playing the what if game. Stopped hating myself for things that I did at 16 so much. And although it will never go away, it will fade and become less of an obstacle for me. I think sometimes, I need to remind myself that i need to start forgiving 16 year old me,

Thursday, January 30, 2014

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.

Thursday, January 23, 2014

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. 

Monday, January 13, 2014

aw heck

I keep forgetting to write. Well not so much forgetting, in that deciding not to for various reasons. But writting used to be healthy for me. The place where I got things out and stopped them building up inside. The place where I could admit my shortcomings and it wouldnt matter how negative I was about things because it was my own place. I am finding that I need that place more and more these days.

To follow on from my last post, I had more more admission left before christmas, before an extended leave from all things hospitals. Well, I manage that admision, came through it relativly unscathed and gave myself a firm pat on the back for surviving in one piece.

Waking up the next day after theater is always a wonderful feeling. Being able to breathe and talk with nothing holding me back. Little things like getting the tube without having to find the route with the least stairs or the fewest steps, timing the carriages to pick the one most likely to have seats. And feeling awake, more than anything. I spoke to my surgeon the day after and I mean really spoke to him. I told him how I felt, that I didnt see the point in going back an forth to surgery all the time, that things were unlikely to improve so why delay the enviatble. He pretty much said that he thought there was still reason to be going on, that things were in the pipe line that could help and that he wouldnt allow me to give up yet. At the end, he put his hand on my shoulder and told me to hang in there. Though I appreciate what he said and his determination to fight for me, it contradicts what other doctors are telling me, leaving me with the sense and feeling of, being lost.

That aside, I was looking forward to a nice long period of staying out of hospital. That was until I ended back in via A&E again. Slightly differnt problem this time, although I could breathe enough, I was feeling restricted, but the main concern was that I coughing up a fair amount of blood. Now a little blood doesnt bother me, I have crappy lungs and small bleeds are common, but this was more than that and so I agreed to phone the ENT team close to home, who immediatly told me to come straight to a&e. Where upon, before they even looked at me, they admitted me.

The consultant came in to review me (at 10pm because he had been elsewhere and obvisouly mustnt like going home) with a concerned look on his face. He scoped me, could see lots of inflamtion and remains of blood. told me he had a low threashold for taking me back to theatre. I was booked in for the following afternoon, just incase, put on to nil by mouth, had blood crossmatched for 8 units, given 3 types of IV antibiotics, set onto the highest humdification and oxygen and lots of fluids pushed through to keep me hydrated. Needless to say, I didnt sleep much, between all the prodding, setting up the equipment and untangeling myself from all the leads everytime I needed to pee, which was frequently given the way the fluids were going.

After a couple of sitting still, things began to settle and so on the 21st December, they agreed I could go home. Of course there was plenty that needed to be done, so the sitting still didnt last and the bleeding restarted, but I was determined not to be stuck in hospital over Christmas plus we were going away for christmas and so I just got on with it, keeping it to myself.

Christmas went well. I went away with my parents, nice to have someone else to the cooking and cleaning. We went to a ball, so it was nice to dress up Other than that, lots of quiet family time, which I was most appreciative for.

Since then, the bleeding has become a thing that comes and goes. I have a bad couple of days followed by a good couple. Its not something that i am concerened about. My infection levels are pretty low at the minute, so other than the tiredness and occasoinal pain, things are good.

I have seen my GP and had my anti depressant meds increased. I ama hoping that this is something that will help, because I do feel like I am going slightly crazy again, which is never a good thing. Twice this week, I have come very close to some old habbits of harming. I know how slippery that slope is and once I start, I know stopping will be next to impossible. I am fighting this with all I have. But in truth, things are messy. I find myself up till stupid oclock, because I cant stand that time when your brain thinks to much, between deciding to go to sleep and actully falling asleep. I wait till sunrise, when things are lighter and feel safer. My mind clouds up with all the dark feelings and thoughts. I think thoughts of treatment run in the same line. I replay various scenarios over and over in my head and find myself bouncing between 2 opposite ends of the scale. Part of me wants to get better. To do all the things I planned. Uni, carer, job, friends, independant livining. And the other part of me dreads so much just waking up again the next day. The thought of slogging through more of this time, the pain that goes with it included, living each day, living each moment, makes me just want to run and scream. But I keep telling myself, one day at a time, one foot in front of the other, thats how I get through this. and so it goes on.

But things should settle soon. The moods ease into a pattern. Life to continue.

Its like over the last year, I have lost who I am.I have given in and become my illness. And that is one thing that I have always hated in others. Your illness shouldnt define you. And that is why I want this time off. To rebuild myself, to become me again and to give life to some old projects, things that are me, away from the stigma of illness and all the thoughts that go with it.

And that is my update for now. Time to keep thinking og more shite to moan about.

Saturday, December 07, 2013

going slightly crazy.

The last month has been one of the longest I have had to go through in so long. I have scraped the bottom of where I stand, faced a few truths and evaluated where I things are.

I am home and sleeping in my own bed, for what feels like the first time in months. In truth its only been about 6 weeks, but the fact that 6 weeks isnt a long time to be away for, shows where things stand.

After hoping to be discharged from London, I knocked heads for the first time ever with my consultant. I was feeling pretty grim, my mood had bottomed out and for the first time ever, I actully begged my parents to come visit because I just couldnt stand my own company any longer. I mean when have I ever been clingy. Now is not an ideal time to start.

The consultant said there was no way he could discharge me, as my airway was a mess and without imediate treatment, I was in danger of dropping my oxygen levels again. there are only so many close calls you can go through before your luck runs out. I couldnt stay so far away from home any longer though. After about 40 minutes of negotiating, I talked him into letting me be transfered to a hospital closer to home for IV antibiotics and I will be readdmitted on Monday for surgery.

I used to deal with these things, these complications, like they were nothing. Take them in my stride and make the most of what I can. But these days I seem to be a shadow of my former self. This year I have spent more time in hospital than I have at home and the cracks are begining to show.

Mentally I am struggeling, and what terrfies me, is ending back up in a deep depression like I had a few years back. I just bearly made through the last depression, and only then due to friends and hospitalisation. Now, things are much more complex and to lose control, however briefly, could be much more disastrous. These days, I have much more access to harmful things like medication and its not uncommon for me to be home with direct venous access to my heart. I dont want to get tot he phase where I no longer care, to be at that point, would be too late.

But its not just mentally. Physically, my body is no longer able to keep up. When I first started treatment, I used to be able to travel to London, go to theatre and return all in the same day, now it is closer to 5 days from home for the same thing. I have many more complications, much more infections, more chance of things like clots.

So after this admission, the aim is to take 6 months off from treatment. I am not niave, I know what that can mean. I will get more breathless, I will lose my voice, the infections will get worse and my airway will scar up. After 6 months I have agreed to review things, but chances are nothing is going to have changed and so I dont think we will restart treatment. Delaying the inevitable seems pointless.

I used to compare myself with others, used to think, I cant be that ill. Ill people have lots of A&E trips, lots of rides in ambulances and lots of complications. I never had them. But this year, things have changed a lot. The amount of trips I have done this year via ambulance is just silly and thats without counting the ones I have talked myself out of. Its at the point now, where A&E staff actully remember me and the equipment I need to keep close to home has doubled.

So I am looking forward to some time off. Some time to regroup, to heal. to find myself and evaluate at this point, what I want to achieve. I always beleived that I could be anything and do anything that I put my mind to, but even that now seems to far away.

So I am taking a step back. Seeing what things take my intrest once again. Finding myself and rebuilding what is important. It is the only way i know at this point to save myself. But what that will mean long term, may not be as viable with a long and healthy life as I may have orginally hoped.

To say that I am not sad, would be a lie, but I know that I went with the right options from the start. I still lie my money with my current surgeon for one day fixing the issues I have and I am still part of the research comitte that is looking at treatment for tracheal issues. I play a fairly important role, on a trial streering comittee at present, which is something that I am very proud of, given that I dont actully hold any qualifications.

But more of that some other day. Right now, its nebs and bed, as my airway is still misbehaving, I am needing to sleep lots.