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,
Showing posts with label death. Show all posts
Showing posts with label death. Show all posts
Saturday, February 01, 2014
Monday, September 23, 2013
Where I am at.
Why is it, that I can always think of loads that I want to say and it sounds so eloquent in my head. Yet I sit down in front of a computer, and my mind draws a blank.
I have always held in my mind, that my breathing was going to get fixed. That one of the major surgeries would eventually be the one that worked. That perhaps I wouldnt know it at first, but that I would get better. I have always had in my mind, that things were going to get messy, that I something could go drastically wrong and so I have been prepared for that. To prepare those close to me, for the possibility of my story not having the happy ever after fairy tale ending. And yet, inside, I have held it my mind that I one day I would be able to breathe.
The fashion at the moment seems to be to make a bucket list and whilst I have things that I would like to do, rather than it being a bucket list, it has been a when I can breathe list. It contains all kinds, from the fun things like kite surfing and marathons, to the simple things like living independently, graduating and holding down a job, not to mention goals, such as climbing the local cathedral tower and getting to the top of Monument in London.
But as time progresses, the chances of this get smaller and smaller. Each major surgery, leaves me feeling weaker and less able to breathe. The restrictions grow, the treatments become more and the future begins to look a little darker.
Right now, I am having surgery every 3 weeks. Only smaller ops, laser and dilation, but still regular admissions and regular damage. I still have a trach in, but my peak flows, sit around 110-150 lpm. When at home, I run an average of 2 hours of nebulised medications (6 different ones twice a day) and extra when I need it. I am attached to a hot air humidifier for about 9 hours a day and take around 30 tablets in addtion to daily injections. But, its not enough to stop the deterioration. These days, I have an almost permanent stridor that makes me feel rather self conscious.
I go to theatre on a Tuesday, by the sundayI begin to feel the restriction again and by the time I next go, even simple movement around a room leaves me feeling out of it with major headaches.
Between that, I have regular courses of antibioitcs, both in tablets and IVs when needed. The problem with IVs at the moment, is that I have very poor venous access. This means that I have to stay in hospital whilst on IVs, so they can keep my access open. A course of IVs is usually 2-3 weeks, but I go to theatre every 3 weeks. It makes things complicated.
At present, I am taking a course of antibiotics via tablets, given them straight after theatre as well as a heap of extra physio and nebs, but by the time I am off the tablets for a week, my lungs begin to kick off once again. I cant put the IVs off for very much longer.
Right now, I am running very low on options. They cant keep taking me to theatre every 3 weeks, but the airway wont stay open on its own. At some point, the doctors will need to admit defeat.
I have faced my own mortality on a number of occasions and whilst I am not scared of death, I am petrfied of dying. I remember moments of sitting in hospital, gasping for every breath, fighting to get the air in and just feeling pure terror. Tears flowing freely as I begged for help, all of this in hospital settings, were help is on hand and you can still have faith that the doctors will be able to correct things. But to face this with the stark reality that there is no help coming, that the fighting for each breath, is the easy bit, because the alternative is not breathing and not existing. That is what scares me. I dont want my family to have to comfort me, I need to be strong for them, especially if the end were to draw near. It would be my final act, to go out brave, a fighter to the end they would say. But the fear grips me, It reminds me of all the previous times and pretty soon, the fear bubble ups and I feel it sink its teeth into me like a snake that wont let go until it wins.
And that is what sits in my mind, it what always sits in my mind. It is what has spurred me on through the big ops, given me the kick to keep going even when the odds are against me. Fear, like that feeling when you go over a hill and your stomach takes a few seconds to catch up. It grips you and takes you down with it. Leaving you nothing but a moany sulky brat, when you long to be the grateful brave warrior.
I guess that I just wanted to put that out there. I have nothing to fear but fear itself, but this fear is a great one and not something that I can see myself getting over before I need to.
I have always held in my mind, that my breathing was going to get fixed. That one of the major surgeries would eventually be the one that worked. That perhaps I wouldnt know it at first, but that I would get better. I have always had in my mind, that things were going to get messy, that I something could go drastically wrong and so I have been prepared for that. To prepare those close to me, for the possibility of my story not having the happy ever after fairy tale ending. And yet, inside, I have held it my mind that I one day I would be able to breathe.
The fashion at the moment seems to be to make a bucket list and whilst I have things that I would like to do, rather than it being a bucket list, it has been a when I can breathe list. It contains all kinds, from the fun things like kite surfing and marathons, to the simple things like living independently, graduating and holding down a job, not to mention goals, such as climbing the local cathedral tower and getting to the top of Monument in London.
But as time progresses, the chances of this get smaller and smaller. Each major surgery, leaves me feeling weaker and less able to breathe. The restrictions grow, the treatments become more and the future begins to look a little darker.
Right now, I am having surgery every 3 weeks. Only smaller ops, laser and dilation, but still regular admissions and regular damage. I still have a trach in, but my peak flows, sit around 110-150 lpm. When at home, I run an average of 2 hours of nebulised medications (6 different ones twice a day) and extra when I need it. I am attached to a hot air humidifier for about 9 hours a day and take around 30 tablets in addtion to daily injections. But, its not enough to stop the deterioration. These days, I have an almost permanent stridor that makes me feel rather self conscious.
I go to theatre on a Tuesday, by the sundayI begin to feel the restriction again and by the time I next go, even simple movement around a room leaves me feeling out of it with major headaches.
Between that, I have regular courses of antibioitcs, both in tablets and IVs when needed. The problem with IVs at the moment, is that I have very poor venous access. This means that I have to stay in hospital whilst on IVs, so they can keep my access open. A course of IVs is usually 2-3 weeks, but I go to theatre every 3 weeks. It makes things complicated.
At present, I am taking a course of antibiotics via tablets, given them straight after theatre as well as a heap of extra physio and nebs, but by the time I am off the tablets for a week, my lungs begin to kick off once again. I cant put the IVs off for very much longer.
Right now, I am running very low on options. They cant keep taking me to theatre every 3 weeks, but the airway wont stay open on its own. At some point, the doctors will need to admit defeat.
I have faced my own mortality on a number of occasions and whilst I am not scared of death, I am petrfied of dying. I remember moments of sitting in hospital, gasping for every breath, fighting to get the air in and just feeling pure terror. Tears flowing freely as I begged for help, all of this in hospital settings, were help is on hand and you can still have faith that the doctors will be able to correct things. But to face this with the stark reality that there is no help coming, that the fighting for each breath, is the easy bit, because the alternative is not breathing and not existing. That is what scares me. I dont want my family to have to comfort me, I need to be strong for them, especially if the end were to draw near. It would be my final act, to go out brave, a fighter to the end they would say. But the fear grips me, It reminds me of all the previous times and pretty soon, the fear bubble ups and I feel it sink its teeth into me like a snake that wont let go until it wins.
And that is what sits in my mind, it what always sits in my mind. It is what has spurred me on through the big ops, given me the kick to keep going even when the odds are against me. Fear, like that feeling when you go over a hill and your stomach takes a few seconds to catch up. It grips you and takes you down with it. Leaving you nothing but a moany sulky brat, when you long to be the grateful brave warrior.
I guess that I just wanted to put that out there. I have nothing to fear but fear itself, but this fear is a great one and not something that I can see myself getting over before I need to.
Saturday, June 29, 2013
Needed - Balance
I have said it way to much but still say it now. Nights like tonight, I need to write. I need to remember, I need the emotions. Yet I doubt I can do any justice to this. The subject is to big and I am too exhausted.
But days like today, things change and change a lot. They give me such a glimpse to the future and now always in a good way.
Today, my parents visited, I wasnt expecting it, they just turned up. I cant say how I felt. I knew that I looked rough and that it would be a shock in a way for them to see how much has changed in the last week or so since I last saw them.
What I hadnt prepared for though, was how much of a change I would see in myself.
I have done long term hosptial stays and I know they have an effect on you, but you can work on it once again when you get out of hospital. But this time, I couldnt keep up with a visit. My body was not physically strong enough to keep up with just sitting.
Simple things, I am lying on my bed quite comfy, no real stress. But I still had to have my nebs running all the time else my chest felt too tight to get the air in. I was mostly just listening to the conversation happening around me but rapidly finding out that in fact, even had I wanted to join in more I couldnt.
If i planned agead, I can control my breathing to get one full sentence out at a time followed by a couple of quick breathes and a few more words. But this was not susuataiable. To hold conversatin, became a chore or breaking things down. 4 words seemed to be my limit. So 4 words followed by 2 big breathes and 4 more words 2 more breathes 4 more words. And so on till I got my sentence out. You can imagine how long anything took to come out.
And if dad didnt get what I was saying or interupted me, I wanted to throw something at him.
Mum could see how hard I was finding things and took pity on me. Taking themselves off to do there own things and come back later. I feel guilty that they have traveled so far to come see me, only to find I cant keep up with them. Its not a nice experince.
Bless her though, she goes into full Mum survival mode for me. Making me nice food, tidying my drawer up, sorting my washing. Anything she can do to lessen the load on me.
Part of me wants to say, its not meant to be this way, not this quick.
But then, perhaps this is ideal. Maybe we both needed the harsh jolt of reality to show where we are up to.
Dad didnt like the idea of leaving me tonight. He was suitably anxious at how hard I was finding it just being right now. But as mum explained to him, it was the effort of me being there that was causing me such issues. If they hadnt been there, then I would have been resting my muscles instead of trying to force them to breathe and work.
Time will tell and tomorrow is a new day and all that jazz. But today has been a steep learning curve for all involved. One that shows just how close to the edge i am wandering right now. One wrong slip, one lose pebble and it could all come down on top of me.
Tuesday, April 02, 2013
Timing
Its been an odd few weeks.
Firstly was the anniversary of Eva's passing. For someone who I never met, I am still in disbelief at the amount she touched my life and I often find myself thinking about her. It takes someone truly special to have that effect on people.
The day before Eva's anniversary, her friend Meg also passed. Strange that the dates would be so close. I related a lot to Meg. She had CF, but also had depressive streaks and often found herself abusing her body and lungs. But things changed for her. She had a little baby boy, who has not long turned one and she began looking after herself, seeing the wonder in his eyes kept her going. That was until her health took a turn for the worst and she ended up in hospital for a long time and unable to look after her little boy any more It tore her apart and so she went back to old habits She was trying to improve things, but sadly complications of her CF lead to her dying. Its sad, because that little boy will never remember his mum, I just hope that the family portray her in a positive life. And that, right now, her and Eva are rocking out some place dancing and talking non stop, breathing easy.
I have had my niece down for a few days and although we didnt really do anything, the company was nice. I even had one of those laughing fits, the one where you cant breathe for laughing and cant stop laughing. As is usual with those types of laughing fits, it was over something silly and not even funny. We have a new couch in the living room, one of those where the foot rest comes up. I was went to get something and sat down next to my dad, but sideways. Suddenly I went flying back and mid sentence, I found myself sitting below my dad facing the celining. Turns out, they recline more that we knewm you just have to lean on it a certain way. But the shock of it happening and the look on my dads face, I was just in heap.
We also started talking to Mike again, my sisters husband. I dont think I have ever written much in here about him, but its an odd relationship and not one I feel like exploring right now. It went well and wasnt too akward, but I dont know how I feel about it yet.He is going to be doing some work for us and I dont think I will know how I feel until I reach a point where I end up alone with him. Its so long since I spoke to him and although he helped me through a rough patch, he was also a bad patch of it. Alas, I think it will be a very long time till I get stuck at that point, so for now I am trying not to worry about it.
Heamatology clinic went okay. Except for them having no idea why I was there and so I had to wait for nearly 3 hours whilst they sorted notes out. I am right, in that I will never outgrow my drug allergy as my doctors where hoping, however, there are alternatives that can used instead of that drug and so it should not be a reason against not have a port line fitted.
I also had chest clinic. Again, this went ok, though no real answers. I am exhausted all the time, even more so the last few days, so they are checking some things in my blood, but it is unlikely to come up with anything. At the time my chest was actully behaving, however, it once again feels like it is filling up this week. The amount of coughing I am doing, I feel like I am drowning, without going near water.
And that is pretty much it in my life. Exciting huh. Tomorrow I have transplant clinic, which I have no worries about as I know my liver works fine and such. Oh and I also have tooth ache again and my stomach is playing up. But I am once again putting it on a back burner. t-minus 6 weeks to London.
Firstly was the anniversary of Eva's passing. For someone who I never met, I am still in disbelief at the amount she touched my life and I often find myself thinking about her. It takes someone truly special to have that effect on people.
The day before Eva's anniversary, her friend Meg also passed. Strange that the dates would be so close. I related a lot to Meg. She had CF, but also had depressive streaks and often found herself abusing her body and lungs. But things changed for her. She had a little baby boy, who has not long turned one and she began looking after herself, seeing the wonder in his eyes kept her going. That was until her health took a turn for the worst and she ended up in hospital for a long time and unable to look after her little boy any more It tore her apart and so she went back to old habits She was trying to improve things, but sadly complications of her CF lead to her dying. Its sad, because that little boy will never remember his mum, I just hope that the family portray her in a positive life. And that, right now, her and Eva are rocking out some place dancing and talking non stop, breathing easy.
I have had my niece down for a few days and although we didnt really do anything, the company was nice. I even had one of those laughing fits, the one where you cant breathe for laughing and cant stop laughing. As is usual with those types of laughing fits, it was over something silly and not even funny. We have a new couch in the living room, one of those where the foot rest comes up. I was went to get something and sat down next to my dad, but sideways. Suddenly I went flying back and mid sentence, I found myself sitting below my dad facing the celining. Turns out, they recline more that we knewm you just have to lean on it a certain way. But the shock of it happening and the look on my dads face, I was just in heap.
We also started talking to Mike again, my sisters husband. I dont think I have ever written much in here about him, but its an odd relationship and not one I feel like exploring right now. It went well and wasnt too akward, but I dont know how I feel about it yet.He is going to be doing some work for us and I dont think I will know how I feel until I reach a point where I end up alone with him. Its so long since I spoke to him and although he helped me through a rough patch, he was also a bad patch of it. Alas, I think it will be a very long time till I get stuck at that point, so for now I am trying not to worry about it.
Heamatology clinic went okay. Except for them having no idea why I was there and so I had to wait for nearly 3 hours whilst they sorted notes out. I am right, in that I will never outgrow my drug allergy as my doctors where hoping, however, there are alternatives that can used instead of that drug and so it should not be a reason against not have a port line fitted.
I also had chest clinic. Again, this went ok, though no real answers. I am exhausted all the time, even more so the last few days, so they are checking some things in my blood, but it is unlikely to come up with anything. At the time my chest was actully behaving, however, it once again feels like it is filling up this week. The amount of coughing I am doing, I feel like I am drowning, without going near water.
And that is pretty much it in my life. Exciting huh. Tomorrow I have transplant clinic, which I have no worries about as I know my liver works fine and such. Oh and I also have tooth ache again and my stomach is playing up. But I am once again putting it on a back burner. t-minus 6 weeks to London.
Wednesday, July 11, 2012
hope for the best
This post, isnt going to be about holidays or transplant week, which is a little disapointing, but I promised honesty in this blog, about health related things and I feel that I need to outlet some of today.
The holiday, was planned and rushed, because I wanted to take my niece to America and I wanted her to have memories of me outside of hospital junk. Things feel like they are going downhill with little working in my favour. I dont have far to sink. My parents are aware of my feelings, but have never really spoken much about it.
Today, I had a meeting with a solicitor and the subject came up.
Sat there talking about it, has to be one of the hardest things I have done in my life.
My parents hope that it isnt going that way, but at the same time, they understand why I feel the way I do.
For a long time, when I was depressed, I said that I would not go through transplant again if it came up. Dad dosnt think that I would stick to this. I dont know, until in that position, I dont think I can answer it as it would depend upon to much at the time.
But with that, Mum still blames herself. She said that she knows that the past 10 years have not been happy ones and that they said yes to transplant straight away and that that was not what I would have wanted.
I need to let mum know in some way, that its not like that. That I dont blame her for my pain these last 10 years. That I am glad that I have had them and been able to do what I have done. She needs to know that, I just couldnt get the words out.
It is a very strange subject, talking about end of life stuff with your parents. It might not happen and I hope it dosnt. I still hold hopes that the next surgery will be the one that will allow me to breathe. But whilst I hope for the best, I prepare for the worst and keep my options open.
I am tired and I am losing the will to fight. Its not something I am sad about. I have had a good life and I am surrounded by love. And this isnt the end, we have no idea what comes next.
But, it is something that I think I need to raise with my surgeon, if I can find a way. He keeps promsing me that he hasnt given up, that he is still trying to find something that will work. But whilst he hasnt given up, I am or at least I am heading that way. Time will tell I guess.
The holiday, was planned and rushed, because I wanted to take my niece to America and I wanted her to have memories of me outside of hospital junk. Things feel like they are going downhill with little working in my favour. I dont have far to sink. My parents are aware of my feelings, but have never really spoken much about it.
Today, I had a meeting with a solicitor and the subject came up.
Sat there talking about it, has to be one of the hardest things I have done in my life.
My parents hope that it isnt going that way, but at the same time, they understand why I feel the way I do.
For a long time, when I was depressed, I said that I would not go through transplant again if it came up. Dad dosnt think that I would stick to this. I dont know, until in that position, I dont think I can answer it as it would depend upon to much at the time.
But with that, Mum still blames herself. She said that she knows that the past 10 years have not been happy ones and that they said yes to transplant straight away and that that was not what I would have wanted.
I need to let mum know in some way, that its not like that. That I dont blame her for my pain these last 10 years. That I am glad that I have had them and been able to do what I have done. She needs to know that, I just couldnt get the words out.
It is a very strange subject, talking about end of life stuff with your parents. It might not happen and I hope it dosnt. I still hold hopes that the next surgery will be the one that will allow me to breathe. But whilst I hope for the best, I prepare for the worst and keep my options open.
I am tired and I am losing the will to fight. Its not something I am sad about. I have had a good life and I am surrounded by love. And this isnt the end, we have no idea what comes next.
But, it is something that I think I need to raise with my surgeon, if I can find a way. He keeps promsing me that he hasnt given up, that he is still trying to find something that will work. But whilst he hasnt given up, I am or at least I am heading that way. Time will tell I guess.
Sunday, May 20, 2012
Time is a wonderful enemy
I should probably be sleeping now, but I still feel the need to write.
I dont know where to start or what I want to say, so bear with me, this will be long and probably not much sense.
On tuesday I got out of hospital. I was meant to spend the entire time on IVs, but by Sunday, my veins had gone again and after many failed attempts to reinsert them, they gave up and switched me to orals. My infection markers where coming down yet I still felt rough. I was discharged Tuesday, still on Orals, but as I put it to them, everything they were doing in the hospital, I can do at home, so I saw no point in staying in. Its now Saturday and I feel the same as I did the day I went in. My guess, is my infection is worse now than it was then and my trachea keeps blocking up. But truth be told there is little they can do. So Tuesday afternoon I made the 3 hour journey home.
Thursday morning, I then made the 3 hour journey back to London. I had been asked to attend a research meeting. The meeting was with the professor who is fronting the research and surgery into the tracheal transplant. He knows about the website I have been building for airway information and if very encouraging for it. He wants as much input as he can from myself and a fellow patient, with aims of getting other patients invovled.
Whilst in London, I spent some time with a friend and we saw, the show, the lion, the witch and the wardrobe, which was truly a wonderful production and a good night overall.
The meeting was fascinating. He is a highly educated professor and his ideas and research are amazing. The possibilities that it paves the way for in the future are endless. To think of a world, where people could go through transplant without the fear of rejection, without medication and all the problems they cause. The amount of lives it could save is endless. And to think that in 20 years time, people with airway problems like mine, would come in for one op and be fixed with no more problems.
The meeting was also very gratfying. That these professionals want my view on things, that they like the work I have done and value my opinion. I like that I have given them things to think about and ideas that they may not have had before. Again the future possibilities. In future times, it could be a job that combined many of my skills in one go. Nursing, medicine, computers, design. The scope for progress is huge and the thought that lil old me could be part of such a huge amazing thing, is truly mind blowing.
But there is always a flip side to these things. I now know a lot more about the research, where it is up to and what it entails. And in short, its a long way off. They are applying for grants now, from the time they get the grant, to the time patients will begin benefiting from treatment, is a minimum of 18 months, but as research goes, probably a lot longer.
In all respects, 2 years isnt that long, it will probably fly by. But when I think about the last 2 years, they have been very long, very hard years and they have taken a huge toll on myself, my family and my friends. And then I think of the last month. The last month has been harder still. They cant keep my body free of infection. The only way I can think to give a general idea, is for people to think back to the last time they were sick, a time when they felt sick enough to go to a doctor and be put on medication to cure it. Well, that is how I feel, but its not a temporary thing, its living with the thought that, things are going to carry on like this for the forseable future.
Infection drains you, it puts your body into fight mode. When you awake in the morning the first thing you think about is pain, when you go to sleep, its the last thing on your mind, be it lungs, joints or neck. Through the day, you feel permantly tired. I could and have last week, slept for 20 hours a day, with no problem. Even showering becomes a dreaded task as it just takes too much energy. And the other problem with infection, is that it always gets worse. The meds become less effective, the symptoms get harder, it just takes so much out of you.
Where is this going. I honestly, dont think that I can make 2 years like this. I feel like I have run a marathon and not the energy to go on. Truthfully I dont want to die. I want to be independant, I want to see my niece finish school and go to prom, to college, to uni. And every time I look at her this weekend, I just want to break down, the thought of not seeing her reach those stages is hard. I love her so much it hurts sometimes.
I had contact with my surgeon today, on a Saturday and everything, he really does go above and beyond his duty, I am so thankful for him, he is one of the good guys. I have an appointment with him at the end of the month and, in his words, we are going to discuss all the possbilities for keeping things comfortable. I guess then, we shall decide how hard to fight from now on in.
And between now and then, I am going to enjoy all the hugs I can get and have all the fun I can mange. And I will savor every moment of it, because every moment is prescious and everyone is special.
I dont know where to start or what I want to say, so bear with me, this will be long and probably not much sense.
On tuesday I got out of hospital. I was meant to spend the entire time on IVs, but by Sunday, my veins had gone again and after many failed attempts to reinsert them, they gave up and switched me to orals. My infection markers where coming down yet I still felt rough. I was discharged Tuesday, still on Orals, but as I put it to them, everything they were doing in the hospital, I can do at home, so I saw no point in staying in. Its now Saturday and I feel the same as I did the day I went in. My guess, is my infection is worse now than it was then and my trachea keeps blocking up. But truth be told there is little they can do. So Tuesday afternoon I made the 3 hour journey home.
Thursday morning, I then made the 3 hour journey back to London. I had been asked to attend a research meeting. The meeting was with the professor who is fronting the research and surgery into the tracheal transplant. He knows about the website I have been building for airway information and if very encouraging for it. He wants as much input as he can from myself and a fellow patient, with aims of getting other patients invovled.
Whilst in London, I spent some time with a friend and we saw, the show, the lion, the witch and the wardrobe, which was truly a wonderful production and a good night overall.
The meeting was fascinating. He is a highly educated professor and his ideas and research are amazing. The possibilities that it paves the way for in the future are endless. To think of a world, where people could go through transplant without the fear of rejection, without medication and all the problems they cause. The amount of lives it could save is endless. And to think that in 20 years time, people with airway problems like mine, would come in for one op and be fixed with no more problems.
The meeting was also very gratfying. That these professionals want my view on things, that they like the work I have done and value my opinion. I like that I have given them things to think about and ideas that they may not have had before. Again the future possibilities. In future times, it could be a job that combined many of my skills in one go. Nursing, medicine, computers, design. The scope for progress is huge and the thought that lil old me could be part of such a huge amazing thing, is truly mind blowing.
But there is always a flip side to these things. I now know a lot more about the research, where it is up to and what it entails. And in short, its a long way off. They are applying for grants now, from the time they get the grant, to the time patients will begin benefiting from treatment, is a minimum of 18 months, but as research goes, probably a lot longer.
In all respects, 2 years isnt that long, it will probably fly by. But when I think about the last 2 years, they have been very long, very hard years and they have taken a huge toll on myself, my family and my friends. And then I think of the last month. The last month has been harder still. They cant keep my body free of infection. The only way I can think to give a general idea, is for people to think back to the last time they were sick, a time when they felt sick enough to go to a doctor and be put on medication to cure it. Well, that is how I feel, but its not a temporary thing, its living with the thought that, things are going to carry on like this for the forseable future.
Infection drains you, it puts your body into fight mode. When you awake in the morning the first thing you think about is pain, when you go to sleep, its the last thing on your mind, be it lungs, joints or neck. Through the day, you feel permantly tired. I could and have last week, slept for 20 hours a day, with no problem. Even showering becomes a dreaded task as it just takes too much energy. And the other problem with infection, is that it always gets worse. The meds become less effective, the symptoms get harder, it just takes so much out of you.
Where is this going. I honestly, dont think that I can make 2 years like this. I feel like I have run a marathon and not the energy to go on. Truthfully I dont want to die. I want to be independant, I want to see my niece finish school and go to prom, to college, to uni. And every time I look at her this weekend, I just want to break down, the thought of not seeing her reach those stages is hard. I love her so much it hurts sometimes.
I had contact with my surgeon today, on a Saturday and everything, he really does go above and beyond his duty, I am so thankful for him, he is one of the good guys. I have an appointment with him at the end of the month and, in his words, we are going to discuss all the possbilities for keeping things comfortable. I guess then, we shall decide how hard to fight from now on in.
And between now and then, I am going to enjoy all the hugs I can get and have all the fun I can mange. And I will savor every moment of it, because every moment is prescious and everyone is special.
Tuesday, February 14, 2012
Curls!
I went through a stage of wanting curly hair. I do however think this is a bit to curly ha.
I get to see my niece tomorrow, which I am looking forward to. I also have my sleep test tomorrow. Kinda glad I get both on the same day. Maybe the chaos of my niece will drown my head and allow me to sleep easily.
Words keep tumbling around in my head.
Snippets of conversation.
Peaks at the truth.
Guilt.
Saturday, we went to a friends wedding.
I mentioned their son a while back on here. About a year ago he was diagnosed with Lung cancer and spent a lot of time over on my ward in the hospital. He has made a brilliant recovery. He is the same age as me. He is living with his new girl friend now and they are expecting their first baby. Less than a year after being diagnosed to go through treatment and chemo and be back at work and living life to the full, just amazing.
Anyway, it was his sister who was getting married. He sat talking to my parents for most of the night, but he was much more talkative than usual as he had had a few to many drinks.
He said he always avoids us when he see's us as he does not know what to say.
Do all people go through this? Or is it something that you do when ill, because you know that no words can change things.
Its a strange thought.
He was talking about his time in hospital and death and such. He didnt understand why his Mum was so upset. His words, if its your time to go, then its time, there is no point being sad about it as it dosnt change anything.
I do fully believe what he was saying.
But then my parents answered him. They started telling him about how differnt it is as a parent. How no parent should ever be faced with their child dying before them. About how painful and scary it is. How powerless you feel.
So much of it rang true.
Those are the words now that tumble about in my mind.
Its not even the words really, more the look. The look of sheer pain at just the memory in my parents face.
That look is burnt into my mind.
I mean lets be honest, the chances of my parents out living me, is not that great. I hope I do, dont get me wrong, but I do dread their future pain. I also dread their ability to cope with it. They have no one really to share the burden. No close family these days. Its so very sad.
I usually sugar coat things where my parents are involved. I glaze over the hard facts and put some extra optimism in.
But, last week, I began to speak in earnest about my fears with Mum. I only touched on it. The reasoning behind being that there are things I want to get done and out the way. There are aspects that need planning and I think it is sensible to discusse these things now.
As i say, i only touched on it.
since then, mum has not been sleeping. She tells me pretty much daily that she cant sleep.
I do hope the two things are not related, but given how my mum tends to lean towards the drama, I fear they might.
Time will tell I guess.
And time will heal.
And life goes on.
And right now, I am making the most that my airway is holding its own and not fighting with me.
And for that I am thankful.
I have much to do and its always easier when you can beathe.
I finally got my photoshop sorted this afternoon and so, I have been busy building my cover for FB timeline. (It rolls out with no choice about it on the 20th of this month) What do you think?
I think it still need a bit of work, but for now it will do.
I get to see my niece tomorrow, which I am looking forward to. I also have my sleep test tomorrow. Kinda glad I get both on the same day. Maybe the chaos of my niece will drown my head and allow me to sleep easily.
Words keep tumbling around in my head.
Snippets of conversation.
Peaks at the truth.
Guilt.
Saturday, we went to a friends wedding.
I mentioned their son a while back on here. About a year ago he was diagnosed with Lung cancer and spent a lot of time over on my ward in the hospital. He has made a brilliant recovery. He is the same age as me. He is living with his new girl friend now and they are expecting their first baby. Less than a year after being diagnosed to go through treatment and chemo and be back at work and living life to the full, just amazing.
Anyway, it was his sister who was getting married. He sat talking to my parents for most of the night, but he was much more talkative than usual as he had had a few to many drinks.
He said he always avoids us when he see's us as he does not know what to say.
Do all people go through this? Or is it something that you do when ill, because you know that no words can change things.
Its a strange thought.
He was talking about his time in hospital and death and such. He didnt understand why his Mum was so upset. His words, if its your time to go, then its time, there is no point being sad about it as it dosnt change anything.
I do fully believe what he was saying.
But then my parents answered him. They started telling him about how differnt it is as a parent. How no parent should ever be faced with their child dying before them. About how painful and scary it is. How powerless you feel.
So much of it rang true.
Those are the words now that tumble about in my mind.
Its not even the words really, more the look. The look of sheer pain at just the memory in my parents face.
That look is burnt into my mind.
I mean lets be honest, the chances of my parents out living me, is not that great. I hope I do, dont get me wrong, but I do dread their future pain. I also dread their ability to cope with it. They have no one really to share the burden. No close family these days. Its so very sad.
I usually sugar coat things where my parents are involved. I glaze over the hard facts and put some extra optimism in.
But, last week, I began to speak in earnest about my fears with Mum. I only touched on it. The reasoning behind being that there are things I want to get done and out the way. There are aspects that need planning and I think it is sensible to discusse these things now.
As i say, i only touched on it.
since then, mum has not been sleeping. She tells me pretty much daily that she cant sleep.
I do hope the two things are not related, but given how my mum tends to lean towards the drama, I fear they might.
Time will tell I guess.
And time will heal.
And life goes on.
And right now, I am making the most that my airway is holding its own and not fighting with me.
And for that I am thankful.
I have much to do and its always easier when you can beathe.
Thursday, January 19, 2012
Be careful what you wish for.
For so long, I have wanted to meet like minded people in the same sort of situation as me.
I have found a few people, yet it has always been differnt, all in differnt postions or places of treatment.
This week, I met two people, all in the same sort of place as me, all with the same views and all stuck.
and after all this time of wanting to meet others, I wish I could take it back, I wish they were not going through this. I want my illusion back that tracheal stenosis is rare and that those whose treatment fails is even more rare.
But the illlusion is shattered and I cant go back now. and it hurts so much to see them suffer. It hurts.
What adds to that hurt, is comparing experinces, I am slightly ahead of them, having had 3 radicals compared with there 1 and 2 and so they look at me for hope and I do try to give it, but this week, my hope too has been broken. And this time, I think it may take a while to repair.
Let me play the last day or so back.
The weekend was shrouded in pain and panic, though I had a great time. I went into hospital Monday evening, you can tell I am a regular as I dont even get shown to my bed these days, just told where I am as differnt staff shout hello.
Monday was a late night. I started talking to the 2 girls on my bay. One is the same age as me, from Cornwall and one is older, with kids and lives not that far from me. We compared stories, not just medical, comments off rude people, excusses we have given, reactions and tales from ICU and hallucinations. We all have very dark senses of humor, but I think most people who go through similer things have that in common.
What we found more so that we had in common, was that we had each been told that things were going to get better with the next surgery, until that fails and you start again. We have each been told, that it is very rare for the radical procedures not to work.
Surgery the next day, went ok. The stent was removed with no trouble. I awoke in the recovery room, I recall asking for pain meds as I was in agony, then I watched the nurse go to get them, whilst she stopped by the nurses station to have a chat and then speak to someone in the staff room. By the time I got my pain meds, pain was the last thing on my mind.
I couldnt get the air in easily. I was using my accessory muscles. I told the nurse this, to which she told me my sats were fine so I was fine. I thought here we go again. I think my problem at this point, is that I remain to calm. I told many people I couldnt breathe, in the end they sat me up more, but I had already hunched over to give extra support to my chest. My muscles were burning so much.
At this point, my surgeon walks past, seeing that I was awake, on his way past he came to tell me that everything looked good. To which I gasped at him and said, in very broken sentence, Great. Just. Wish. I. Could. Breathe. Now. He kinda looked at me and then said, oh lets see who is caring for you. One of the anesthtic docs came in and she wasnt happy with things, then my actual anesthtic doc came in and lsitened to my chest and said I was badly ratteling and had a restictive wheeze. High flow oxygen was started and I had a large adreneline nebuliser. Within 30 mins, things had settled. There had been swelling upon removing the stent which was what was restricting me. By this point, I was exhausted, but had to stay in the recovery room till I got the all clear, so a 30 min stop turned into a 4 hour stop.
Later that evening, I spoke to one of my favourite nurses, who is leaving the ward. I asked her some general questions. The main one being, how sucessful she thought the radical procedures were. She said if the first one works, then great, but if it dosnt, or if its post intubation stenosis, then the chances are you are going to need a more and more radical procedures and the best you can make of things, is dependant on how long oyu can go between lasers and your quality of life inbetween. Why couldnt anyone have said this long ago.
I also found some more info about my last procedure. I was meant to wake with a trach in place, but there were complications. Because of the amount of surgery that has been performed on my trachea, my trachea has now hardened like bone. The fear is, if they put a trach in, my trachea will literally shatter, leaving me no option but the trach.
And so I conclude, that I am rapidly running out of options.
Every radical procedure I have gotten worse after. Every laser treatment takes me longer to recover from and I never gain back what is lost. I cant keep living with surgery every month, its too much, its not way to live, and everyone leaves me more restricted than the last.
Transplant has not been mentioned since.
Now is where we find out how far I am willing to fight for life.
I am back in 2 weeks for laser. If there is scar tissue, I am going to demand to see the surgeon in clinic the next day.
If radicals and laser no longer work, the only other option I can see is to go for the permant trach.
but neither is that straight forward.
If it goes in, it stays in, there will be no chance of it coming out ever. It will be my only airway, so should it accidentally fall out like last year, it would be an emergency situation.
If my trachea split, it would also mean, that my voice would gone.
Is life suistainable, when you cant talk?
But that is not all.
As we found with the trach last time, my body disagreed to it. It was constant infections and the strain on my windpipe made it close more and more.
With a trach, I would say I would get perhaps 18 months.
I am so thankful and so happy to have gotten the chance that I have, but right now, I am running out of options. Laws are not going to change in time.
When I talk to my surgeon, if he confirms all of the above, then I think the next question needs to be, what will happen, how will things progress if I stop treatment. And what support can my family get to deal with that.
As morbid as it sounds, I have to be practicle at this stage, there is no point in prolonging the envitable when it only draws out the pain and suffering of all involved.
Something has to give.
There has to be more.
I have slowly started speaking to my parents about it.
I think my dad gets it, Mum is still holding out hope, along with the thought that perhaps life with a trach and no voice would be enough of a life on its own.
Friday, October 28, 2011
cest le vie
Rachy passed away today. She was a fighter & and inspiration thats for sure. Breathe ease Rach. My thoughts are with her friends and family tonight. x (http://lungs-for-life.blogspot.com/)
I have discovered a way to get my hypertonic saline running easier without it leaving me in agony.
Usually, as my throat is being scraped every 4-6 weeks, it gets raw. I cough a lot, which irritates it more. So running hypertonic becomes a little painful. (think chapped/split lips and eat salt and vinegar crisp)
So anyway, tonight, I have had my humidifier on most of the evening and just left it on whilst running my nebs. oh it was heaven. As my throat is warm and moist, the salt isnt sticking, so im hoping its going into my lungs better. Weird feeling though, as I am blowing out through my mouth piece, the steam coming out was warm and so the plastic piece in my mouth was going warm.
The reason I am on my humidifier is my own fault. Last night, my body refused to shut down for sleep, so when my alarm went off at 7:30, the first thing that came to mind is, who hit me over the head with a hammer, closely followed with, who has been feeding my drugs as my vision was very wavy. After reassuring myself that no, I didnt go out last night, this cant be a hangover, my mind clicked, that it was in fact a migraine. I hate migraines. I have had them since I was about 5, though they started as stomach migraine. Managed to take some meds for it, but of course they take nearly an hour to kick in and this morning was not one I could delay or disrupt, today was about supporting mum.I managed the basic tasks like dressing, but the thought of nebbing when my head felt like it was splitting, was not a thought I could bare. It just wasnt an option.
So radiotherapy clinic went ok, though it is the first one so will take a while to hit in. But the staff seem nice enough so yeh.
By afternoon my head was still pounding, so I decided to nap it off. After about an hour, I remember half waking, but not being able to wake anymore. Thinking, something is not right, I cant breathe. After a scary few minutes, trying to wake up enough to get help, I managed to move to my other side, with aims of getting up, but quickly falling back into the abyss.
When Dad woke me later, I was breathing better than earlier, but still not great. I checked my peak flows and it was 110. I was like WTF!! Its been a long time since that low, were talking pre trach days, so god knows what it would have been when it woke me.
I have loads of treatments tonight and its back to 220, but just incase, I have made sure my emergency bells are still reachable.
Its just an odd feeling. Im not being all woe about this, I know its my own fault and I can take it in my stride, its just a little scare, to keep me on my toes. But it is annoying, today, isnt about me. My parents dont need any of this, I need to be supporting my mum. I cant afford to get sick right now. And the thought of not seeing a doc for 3 months, makes me a little nervous.
But alas. Tomorrow is a new day, and we begin again. Tomorrow I will wake refreshed from a nice sleep. I have just changed my bed and I am looking froward to snuggling down.
I have discovered a way to get my hypertonic saline running easier without it leaving me in agony.
Usually, as my throat is being scraped every 4-6 weeks, it gets raw. I cough a lot, which irritates it more. So running hypertonic becomes a little painful. (think chapped/split lips and eat salt and vinegar crisp)
So anyway, tonight, I have had my humidifier on most of the evening and just left it on whilst running my nebs. oh it was heaven. As my throat is warm and moist, the salt isnt sticking, so im hoping its going into my lungs better. Weird feeling though, as I am blowing out through my mouth piece, the steam coming out was warm and so the plastic piece in my mouth was going warm.
The reason I am on my humidifier is my own fault. Last night, my body refused to shut down for sleep, so when my alarm went off at 7:30, the first thing that came to mind is, who hit me over the head with a hammer, closely followed with, who has been feeding my drugs as my vision was very wavy. After reassuring myself that no, I didnt go out last night, this cant be a hangover, my mind clicked, that it was in fact a migraine. I hate migraines. I have had them since I was about 5, though they started as stomach migraine. Managed to take some meds for it, but of course they take nearly an hour to kick in and this morning was not one I could delay or disrupt, today was about supporting mum.I managed the basic tasks like dressing, but the thought of nebbing when my head felt like it was splitting, was not a thought I could bare. It just wasnt an option.
So radiotherapy clinic went ok, though it is the first one so will take a while to hit in. But the staff seem nice enough so yeh.
By afternoon my head was still pounding, so I decided to nap it off. After about an hour, I remember half waking, but not being able to wake anymore. Thinking, something is not right, I cant breathe. After a scary few minutes, trying to wake up enough to get help, I managed to move to my other side, with aims of getting up, but quickly falling back into the abyss.
When Dad woke me later, I was breathing better than earlier, but still not great. I checked my peak flows and it was 110. I was like WTF!! Its been a long time since that low, were talking pre trach days, so god knows what it would have been when it woke me.
I have loads of treatments tonight and its back to 220, but just incase, I have made sure my emergency bells are still reachable.
Its just an odd feeling. Im not being all woe about this, I know its my own fault and I can take it in my stride, its just a little scare, to keep me on my toes. But it is annoying, today, isnt about me. My parents dont need any of this, I need to be supporting my mum. I cant afford to get sick right now. And the thought of not seeing a doc for 3 months, makes me a little nervous.
But alas. Tomorrow is a new day, and we begin again. Tomorrow I will wake refreshed from a nice sleep. I have just changed my bed and I am looking froward to snuggling down.
Monday, October 10, 2011
They say
That the highest and the lowest points are the most important ones. What if you get them at the same time?
I follow a fair few blogs on here, a lot of which are in relation to transplant.
It is with sad news today, that I learnt that Rachy (lungs-for-life.blogspot.com/) is at a point in her life where she is not going to recover, she is very ill. She has done a heck of a lot in her life to raise awareness for organ donation. She got her call for a double lung transplant March 2010, but recovery was not straight forward and she has been struggling since then, yet always has a smile on her face and no regrets.
And in my next breathe, Tor (http://tor-pastthepointofnoreturn.blogspot.com/) who has been waiting for a double lung transplant for almost 4 years and had 8 false alarms, went into theater at 6pm tonight for a double lung transplant.
The emotions both families and loved ones must be feeling is enough to blow you away.
My thoughts are with Rachy and familiy as well as Tor and familiy and the donor familiy tonight. I hope everything goes smoothly for them.
I follow a fair few blogs on here, a lot of which are in relation to transplant.
It is with sad news today, that I learnt that Rachy (lungs-for-life.blogspot.com/) is at a point in her life where she is not going to recover, she is very ill. She has done a heck of a lot in her life to raise awareness for organ donation. She got her call for a double lung transplant March 2010, but recovery was not straight forward and she has been struggling since then, yet always has a smile on her face and no regrets.
And in my next breathe, Tor (http://tor-pastthepointofnoreturn.blogspot.com/) who has been waiting for a double lung transplant for almost 4 years and had 8 false alarms, went into theater at 6pm tonight for a double lung transplant.
The emotions both families and loved ones must be feeling is enough to blow you away.
My thoughts are with Rachy and familiy as well as Tor and familiy and the donor familiy tonight. I hope everything goes smoothly for them.
Tuesday, September 27, 2011
Good night Grandad
Today was the service. It was lovely.
I said my goodbyes and the tears ran right through the ceremony.
The lone bagpiper walked ahead of the funeral car and going into the church he played amazing grace.
The remaining members of his troop, The Liverpool Scotish Caemeron where there to wave him off. There are now 3 remaining members from his troop.
I said my goodbyes and the tears ran right through the ceremony.
The lone bagpiper walked ahead of the funeral car and going into the church he played amazing grace.
The remaining members of his troop, The Liverpool Scotish Caemeron where there to wave him off. There are now 3 remaining members from his troop.
Moonlight and Roses was played at the end of the service, which was Harry and Audreys wedding song.
Its strange, I could virtually picture the two of them dancing together, dressed very elegantly.
His last words were to tell the nurses that he had had a good life and married the most wonderful and beautiful woman, along with having a wonderful daughter.
Rest easy Uncle Harry (honorary granddad)
Sunday, September 25, 2011
death
Death is a funny old thing.
When I got ill at 16, mum said I couldnt die, because I didnt know anybody on the other side and I would be lonely.
It was true, up until I was nearly 18, nobody in my life had died. Perhaps it was an age thing. I grew up with one grandma. And I loved her to pieces. Both my grandads died before I was born. I remember watching the film Grandpa as a child and crying right through it as I didnt have a grandpa to read me stories or do fun things with. My mum is estranged with her side of the family and so I grew up with just my dads side of the family. He had 9 brothers and sisters and his mum was my Nan.
I loved my nan deeply. When I was ill, she phoned my mum on night and said, its ok, you dont need to worry anymore. I have made a deal with god, and I am switching places with her. She still held up this story once I got well. That she was making sure I was ok before she said goodbye. 4 years later, once I had gone back to uni, she got sick and eventually died. It wasnt unexpected, she lived to be 92. But she was an incredible woman with an amazing story.
At 14, she didnt get on with her mother and left home with her aunty, by ship from Ireland to come and live in Liverpool. By 16 she was working full time and had her own place and a man. When the war set in, she had 2 children and had recntly lost another. She was shipped out to live in York with her children. Once she came home and her husband returned, 9 months later my dad was born. And followed after that the rest of her children. She lost another two when they were young. All her life, up until she was about 70, she worked. While the kids where at home, she worked 3 jobs and made sure they all went to school.
There is a lot she didnt remember and nothing could back that up. She had no idea what happened to her parents, or even her full date of birth. The place where her records were kept got bombed and so they were destroyed. But she was an amazing woman.
But this entry was not about my nan. so I shall continue.
Over time I have lost a lot of people. My dads brother and sister both passed as well as their partners. Other semi relatives have passed and people who I have spoken to have also.
This week my neighbor passed. Again he was an amazing man. He fought in the war and had all his medals to prove it. When I was growing up, he used to call himself my adopted granddad. His wife spent a lot of time in ours talking to my mum and such and every chirstmas they would both get dressed up christmas morning to come visit. The photos are wonderful.
He was always the life and soul of any party. First on the dance floor at any occasion and usually with a silly hat. Whenever I visited, her would call me princess and get down on one knee to kiss my hand.
The last few years have been tough on him. His body has been overcome with blindness, deafness and Alzheimer's. He even began having this kind of mini stroke every few weeks which really effected his memory. His life was no longer his own.
In the end, he developed a urine infection, that quickly spread to his kidneys and destroyed them. He had palliative care in the hospital on the last few days and passed on last week at the grand old age of 96. He didnt quite get his letter from the queen for turning a 100, but he did get a letter congratulating him on 70 years of marriage off her.
Maybe its wrong, but I dont feel bad that he is gone. In the last few years, he didnt have his own life, his body had aged to much. He had no pleasure in life, not even remembering his wife. I dont want to remember him like that. My memories of him shall remain of him being himself joking about. With him having a full blown conversation with tickle me elmo, challenging him to a fight. And when Elmo laughed? Elmo got a good ole telling off about minding his manners and a clip around the ear, while everybody else sat giggling.
Good night Uncle Harry. Your with your familiy now, but I know you will be waiting for the love of your life.
When I got ill at 16, mum said I couldnt die, because I didnt know anybody on the other side and I would be lonely.
It was true, up until I was nearly 18, nobody in my life had died. Perhaps it was an age thing. I grew up with one grandma. And I loved her to pieces. Both my grandads died before I was born. I remember watching the film Grandpa as a child and crying right through it as I didnt have a grandpa to read me stories or do fun things with. My mum is estranged with her side of the family and so I grew up with just my dads side of the family. He had 9 brothers and sisters and his mum was my Nan.
I loved my nan deeply. When I was ill, she phoned my mum on night and said, its ok, you dont need to worry anymore. I have made a deal with god, and I am switching places with her. She still held up this story once I got well. That she was making sure I was ok before she said goodbye. 4 years later, once I had gone back to uni, she got sick and eventually died. It wasnt unexpected, she lived to be 92. But she was an incredible woman with an amazing story.
At 14, she didnt get on with her mother and left home with her aunty, by ship from Ireland to come and live in Liverpool. By 16 she was working full time and had her own place and a man. When the war set in, she had 2 children and had recntly lost another. She was shipped out to live in York with her children. Once she came home and her husband returned, 9 months later my dad was born. And followed after that the rest of her children. She lost another two when they were young. All her life, up until she was about 70, she worked. While the kids where at home, she worked 3 jobs and made sure they all went to school.
There is a lot she didnt remember and nothing could back that up. She had no idea what happened to her parents, or even her full date of birth. The place where her records were kept got bombed and so they were destroyed. But she was an amazing woman.
But this entry was not about my nan. so I shall continue.
Over time I have lost a lot of people. My dads brother and sister both passed as well as their partners. Other semi relatives have passed and people who I have spoken to have also.
This week my neighbor passed. Again he was an amazing man. He fought in the war and had all his medals to prove it. When I was growing up, he used to call himself my adopted granddad. His wife spent a lot of time in ours talking to my mum and such and every chirstmas they would both get dressed up christmas morning to come visit. The photos are wonderful.
He was always the life and soul of any party. First on the dance floor at any occasion and usually with a silly hat. Whenever I visited, her would call me princess and get down on one knee to kiss my hand.
The last few years have been tough on him. His body has been overcome with blindness, deafness and Alzheimer's. He even began having this kind of mini stroke every few weeks which really effected his memory. His life was no longer his own.
In the end, he developed a urine infection, that quickly spread to his kidneys and destroyed them. He had palliative care in the hospital on the last few days and passed on last week at the grand old age of 96. He didnt quite get his letter from the queen for turning a 100, but he did get a letter congratulating him on 70 years of marriage off her.
Maybe its wrong, but I dont feel bad that he is gone. In the last few years, he didnt have his own life, his body had aged to much. He had no pleasure in life, not even remembering his wife. I dont want to remember him like that. My memories of him shall remain of him being himself joking about. With him having a full blown conversation with tickle me elmo, challenging him to a fight. And when Elmo laughed? Elmo got a good ole telling off about minding his manners and a clip around the ear, while everybody else sat giggling.
Good night Uncle Harry. Your with your familiy now, but I know you will be waiting for the love of your life.
Wednesday, August 03, 2011
Conflicting emotions
This week has been full of conflicting emotions.
Mum has not been well. She is getting out of breathe easy and is generally exhausted. I feel sorry for her, I really do. And yet that voice is still in the back of my mind wanting to say ha, see you cant just get on with it like you have always complained at me for not doing, its not that easy. But then, on the other hand, if I could take this for her, I would in an instant. I would rather feel crap than have her feel crap. I hope she is going to be ok whilst I am not there.
There is other family crap going on and on one point, im wanting to say sod, screw the lot of you, why should I care what you think. And on the other hand, Im wanting to say, look here are the facts, now wake up and see what is in front of you.
The other thing that has me thinking a lot the last day or so, is that somebody on the forum I use/kinda worked for, passed away. Any death is sad, but this one has more so left me with so many feelings that are just not defined.
Most people on the site, dont care about life. They vocalize what is going and they are fairly open within the community. Even those deemed the most at risk, you generally know when they are going through a hard time. But this person, she was different. She had a thirst for life, she wanted to live and she wanted to get well. You would hardly know from her writing what was going on. Its sad really. In a way it makes me think of those who throw life away and dont appreciate things. But in another way it also makes me think that we never truly know what is going happen. Anyday could be your last regardless of any situation. Most of the time it is not something we have control and I dont think we ever should have control of it.
Right now, I know my mind is still running in protective mode. Its functioning but it wont take much to knock. However, I dont ever want to get back into that place I once was. It was dark and lonely there but more so I was able to torture myself more than anyone ever should.
But if you never know what is around the corner, you should seize everyday. Make the most of every opportunity, dance, laugh, sing and cry. Make lots of mistakes but learn from them. Make so many memories that your mind is full to brim. Make sure, that should time ever run out, those that matter are not commiserating your passing, but celebrating your life and all you did.
That is how I am going forth, no regrets and making the most of what I am given.
I doubt I will be updating here for about a fortnight, as I will be in south wales, hopefully with sunny weather. You never know, the salt air may do wonders for me.
Wednesday, May 18, 2011
pain and purpose
I dont know, I have been wording this entry for a while, turning it over in my head and rewording. Coming up with the right words and forgetting them soon after, coming up with hundreds more words until it turns into a a jumble of letters that make no sense.
When I started blogging, my whole purpose was in hopes of find people with similer stuff happening to them. I knew it would be a long shot as things seem to never go the simple way with me. Along the way, I have met many many people. Some I have related to so much it has been like reading my words, some have had smilier things in their life, some have annoyed me from the start, some I have liked their attitudes and wordings of things, but soon grown aggravated when they moan over about the same things or kick up a fuss at small procedures that are meant to help. Many I worry about. What the future holds for them and how will they deal with it. I mean, if they cant undergo a simple outpatients procedure how on earth will they deal with a transplant when the need arises. The funny thing, most of these people are complete strangers to me and always will be. But some of them, I will never forget. Those are the ones I admire most and the ones seem to be the ones who keep getting taken away.
Maybe I am naive, maybe its due to my transplant experience. I spent a long time being bitter about transplant. Mine was a little different to most, and while others grew sick beforehand and watched their lives slip away despite their best efforts to keep in control of it. Then they went through transplant and suddenly everything improve. With mine, the way my mind tried to rationale, was that I was perfectly fit and healthy.I was 16, never take any medications accept the very occasional antibiotic, hadnt see a doctor in about 4 years. The next thing I knew, I got out of hospital after transplant and suddenly, I was faced with so much change. Doctors every week, stacks of pills, endless lists of things to adjust to it. It was a big change and I hated it every step of the way asI fought many daemons off my back. I lost my friends,my independence, my energy, my personality everything, all in a few short weeks.
I didnt like the person I had become and I didnt want to know anymore. I wanted to burry everything under the carpet and pretend it hadnt happened, go back to my old life and forget everything.
When I started getting sick with my breathing, I began reading about,doing research, finding other people wanting to know as much as I could.
I never really considered the consequences of this. But as time goes on, I see these people conquering great things, getting better and my heart beats with joy seeing them do the things they alway wanted. But, then something clicks and they begin to go downhill. Before I know it, sad news is passed on that they are no longer restricted by anything, that they have left this world, this pain and gone on to somewhere else.
Everything begins to hurt, to feel heavy. I may not have been close to them, but it still hurts each time some one goes.
I mentioned in my last blog about Bree whose blog I read having gone from us.
This sadends me, but more so out of selfish act.
I came across Breesj ournal a long time ago, I think through a transplant forum. I immediately fell in love with her writing, her style and attitude never ceased to make me smile and her happiness came across in every post. I knew that she had hada lung transplant, but could not remember the reason for this.
After she hadnt posted for a couple of weeks, which was odd, I went to check her blog and something caught my eye. In her about me section, she mentioned having had a lung transplant due to Bronchiectasis. My heart skipped a beat and my breathe caught in my throat. This is what doctors had been queering with me, this is what I had been searching for answers to and the best answers I could ever get, were right under my nose.
I knew Bree wasnt well and so I hoped for a speedy recovery for her, checking in twice a day just incase she had posted. I had thousands of questions going through my head that I wanted to ask once she was better. I hoped she wouldnt mind answering me, but from what she wrote, I didnt think she would.
But now, I cant ask those questions. Her time is up and not because of the lungs. Sadly, the lungs she got worked brilliantly, but some mystery disease was causing her body to attack itself, especially the brain.
Its sad losing people. I know how fragile life is, I have had a lot of very near misses. The experimental surgeries promise nothing. But I know I must continue to move forward no matter how slow the place or how steep the incline. But, right now I guess, it just leaves me questioning the balance of finding people to relate to against the risk of losing them.
http://bree-theblogblog.blogspot.com Bree, I hope you are having fun and kicking some butt wherever you are now.
When I started blogging, my whole purpose was in hopes of find people with similer stuff happening to them. I knew it would be a long shot as things seem to never go the simple way with me. Along the way, I have met many many people. Some I have related to so much it has been like reading my words, some have had smilier things in their life, some have annoyed me from the start, some I have liked their attitudes and wordings of things, but soon grown aggravated when they moan over about the same things or kick up a fuss at small procedures that are meant to help. Many I worry about. What the future holds for them and how will they deal with it. I mean, if they cant undergo a simple outpatients procedure how on earth will they deal with a transplant when the need arises. The funny thing, most of these people are complete strangers to me and always will be. But some of them, I will never forget. Those are the ones I admire most and the ones seem to be the ones who keep getting taken away.
Maybe I am naive, maybe its due to my transplant experience. I spent a long time being bitter about transplant. Mine was a little different to most, and while others grew sick beforehand and watched their lives slip away despite their best efforts to keep in control of it. Then they went through transplant and suddenly everything improve. With mine, the way my mind tried to rationale, was that I was perfectly fit and healthy.I was 16, never take any medications accept the very occasional antibiotic, hadnt see a doctor in about 4 years. The next thing I knew, I got out of hospital after transplant and suddenly, I was faced with so much change. Doctors every week, stacks of pills, endless lists of things to adjust to it. It was a big change and I hated it every step of the way asI fought many daemons off my back. I lost my friends,my independence, my energy, my personality everything, all in a few short weeks.
I didnt like the person I had become and I didnt want to know anymore. I wanted to burry everything under the carpet and pretend it hadnt happened, go back to my old life and forget everything.
When I started getting sick with my breathing, I began reading about,doing research, finding other people wanting to know as much as I could.
I never really considered the consequences of this. But as time goes on, I see these people conquering great things, getting better and my heart beats with joy seeing them do the things they alway wanted. But, then something clicks and they begin to go downhill. Before I know it, sad news is passed on that they are no longer restricted by anything, that they have left this world, this pain and gone on to somewhere else.
Everything begins to hurt, to feel heavy. I may not have been close to them, but it still hurts each time some one goes.
I mentioned in my last blog about Bree whose blog I read having gone from us.
This sadends me, but more so out of selfish act.
I came across Breesj ournal a long time ago, I think through a transplant forum. I immediately fell in love with her writing, her style and attitude never ceased to make me smile and her happiness came across in every post. I knew that she had hada lung transplant, but could not remember the reason for this.
After she hadnt posted for a couple of weeks, which was odd, I went to check her blog and something caught my eye. In her about me section, she mentioned having had a lung transplant due to Bronchiectasis. My heart skipped a beat and my breathe caught in my throat. This is what doctors had been queering with me, this is what I had been searching for answers to and the best answers I could ever get, were right under my nose.
I knew Bree wasnt well and so I hoped for a speedy recovery for her, checking in twice a day just incase she had posted. I had thousands of questions going through my head that I wanted to ask once she was better. I hoped she wouldnt mind answering me, but from what she wrote, I didnt think she would.
But now, I cant ask those questions. Her time is up and not because of the lungs. Sadly, the lungs she got worked brilliantly, but some mystery disease was causing her body to attack itself, especially the brain.
Its sad losing people. I know how fragile life is, I have had a lot of very near misses. The experimental surgeries promise nothing. But I know I must continue to move forward no matter how slow the place or how steep the incline. But, right now I guess, it just leaves me questioning the balance of finding people to relate to against the risk of losing them.
http://bree-theblogblog.blogspot.com Bree, I hope you are having fun and kicking some butt wherever you are now.
Tuesday, March 09, 2010
Peter Chapman
So today was Peters trial.
I expected it to go on for days or even weeks and to not hear much about it. However, he pleaded guilty and it has been on every single piece of news and website.
So turns out he had a fake facebook page that he spoke to Ashleigh on. Then claimed to be a 19 year old boys farther when he picked her up. He then tied her and gaged her and raped her while she suffocated. Afterwards he dumped her body in a field. He was picked up later by the police for a problem with his car and while he was in the prison told them he had murdered someone and where to find her.
This must have been when I met him. October 2002. He had recently moved into the block of flats were I was. I knew he had been in prison before, he told me it was after stealing a car. He used a hell of a lot of coke at the time but apart from that was quiet and sweet. Used to knock at his at like 4am when I was off my head and need him to roll cigs and spliffs.
When things kicked off with Dave, Peter was there for me. He let me stay there out of Daves way, he was helping me find somewhere else to live. When Dave held me prisoner, Peter, knew where I was and knocked but got no answer. He later told me he thought I had gone off somewhere with Dave. Was this true? Or did he know of Daves plans and helped him in someway?
The next day, he held my while I sat in shock, shaking from everything that had happened. He held my hand while sitting in the police station and later at the secure house. After my examination he reassured me that things would be ok while I sat and rocked back and forth.
When we got home, he ran me a warm bath knowing I wanted to scrub myself raw and checked on me every 10 minutes to make sure I hadnt done anything stupid. He cooked me tea and made me eat some, knowing I hadnt eaten for days. And once all that was done, he pulled me away from the window, he stopped me pacing back and forth, put calming music on and pointless tv. Held my hand while sitting on the couch and when I eventually feel into a pit of exhausted sleep he put a blanket over me to keep me warm.
After the stabbing, he came in the ambulance with me, held my hand and helped to squeeze fluids into me, held me down when I started thrashing. He came to see me a couple of times and bought a card while I was in ICU. I dont remember it but he did.
He phoned my familiy once a week to see how I was.
I met up with him a few times once I was better. Had a few drinks, went to the beach and such. He was still just as caring and sweet. I suspected nothing.
One day when my phone was playing up I gave him some of my details and asked him to top it up for me which he did. Later when I got a bank statement he had also put £50 credit on his own phone. He denied it of course. But I had trust issues and completely blocked him out of my life. Good job knowing things now.
After a time, I had a little bit of contact with a few people I knew then. I always asked for information on Peter. Tried to get back in touch with him. No one ever knew where he was.
The bit that gets me is:
So that would have been what 2 months since I was stabbed. 2 months after I was held prisoner, probably for about 14 hours, at knife point and raped he goes and does the same thing! Was it some sort of reenactment? his past points to no. Did he maybe have something to do with it happening to me? Did he spur Dave on? Did he give him the idea? help him in some way? I guess I will never know. Maybe its a good thing.
I dont know, my head is everywhere with this at the moment. I dont know how I feel nor do I know how I should feel or even what I believe.
He has been given life so I suppose that is something.
http://www.independent.co.uk/news/uk/crime/chapman-was-a-manipulative-liar-who-used-the-internet-to-kill-1918335.html
http://www.timesonline.co.uk/tol/news/uk/crime/article7054518.ece?token=null&offset=12&page=2
I expected it to go on for days or even weeks and to not hear much about it. However, he pleaded guilty and it has been on every single piece of news and website.
So turns out he had a fake facebook page that he spoke to Ashleigh on. Then claimed to be a 19 year old boys farther when he picked her up. He then tied her and gaged her and raped her while she suffocated. Afterwards he dumped her body in a field. He was picked up later by the police for a problem with his car and while he was in the prison told them he had murdered someone and where to find her.
In 1992, aged 15, he was the subject of a sexual assault investigation and four years later was accused of raping a girl he had befriended. She became pregnant but the allegations were later dropped.In December 1996, aged 19, he found himself before Teesside Crown Court accused of attacking two teenage prostitutes.
He had stolen a car, fitted it with false number plates and cruised the streets of Middlesbrough before picking up a 17-year-old street girl, driving her to County Durham and raping her at knifepoint. Two days later he did exactly the same thing to another prostitute.Chapman was sentenced to seven years’ imprisonment and, on his release in 2001, he moved to Merseyside where he befriended a woman and moved in with her.In 2002 he was arrested by Cheshire Police for the rape and kidnap of a prostitute in Ellesmere Port. The case was discontinued.
This must have been when I met him. October 2002. He had recently moved into the block of flats were I was. I knew he had been in prison before, he told me it was after stealing a car. He used a hell of a lot of coke at the time but apart from that was quiet and sweet. Used to knock at his at like 4am when I was off my head and need him to roll cigs and spliffs.
When things kicked off with Dave, Peter was there for me. He let me stay there out of Daves way, he was helping me find somewhere else to live. When Dave held me prisoner, Peter, knew where I was and knocked but got no answer. He later told me he thought I had gone off somewhere with Dave. Was this true? Or did he know of Daves plans and helped him in someway?
The next day, he held my while I sat in shock, shaking from everything that had happened. He held my hand while sitting in the police station and later at the secure house. After my examination he reassured me that things would be ok while I sat and rocked back and forth.
When we got home, he ran me a warm bath knowing I wanted to scrub myself raw and checked on me every 10 minutes to make sure I hadnt done anything stupid. He cooked me tea and made me eat some, knowing I hadnt eaten for days. And once all that was done, he pulled me away from the window, he stopped me pacing back and forth, put calming music on and pointless tv. Held my hand while sitting on the couch and when I eventually feel into a pit of exhausted sleep he put a blanket over me to keep me warm.
After the stabbing, he came in the ambulance with me, held my hand and helped to squeeze fluids into me, held me down when I started thrashing. He came to see me a couple of times and bought a card while I was in ICU. I dont remember it but he did.
He phoned my familiy once a week to see how I was.
I met up with him a few times once I was better. Had a few drinks, went to the beach and such. He was still just as caring and sweet. I suspected nothing.
One day when my phone was playing up I gave him some of my details and asked him to top it up for me which he did. Later when I got a bank statement he had also put £50 credit on his own phone. He denied it of course. But I had trust issues and completely blocked him out of my life. Good job knowing things now.
After a time, I had a little bit of contact with a few people I knew then. I always asked for information on Peter. Tried to get back in touch with him. No one ever knew where he was.
The bit that gets me is:
In February the following year (2003) he was arrested in Liverpool for the rape and kidnap of a prostitute.He had enticed her into his car and, because of his “meek and mild” looks and manner, she agreed to go to a house where he kept some money.It was there he produced a knife, tied her up, kept her prisoner for 14 hours and raped her.
So that would have been what 2 months since I was stabbed. 2 months after I was held prisoner, probably for about 14 hours, at knife point and raped he goes and does the same thing! Was it some sort of reenactment? his past points to no. Did he maybe have something to do with it happening to me? Did he spur Dave on? Did he give him the idea? help him in some way? I guess I will never know. Maybe its a good thing.
I dont know, my head is everywhere with this at the moment. I dont know how I feel nor do I know how I should feel or even what I believe.
He has been given life so I suppose that is something.
http://www.independent.co.uk/news/uk/crime/chapman-was-a-manipulative-liar-who-used-the-internet-to-kill-1918335.html
http://www.timesonline.co.uk/tol/news/uk/crime/article7054518.ece?token=null&offset=12&page=2
Thursday, December 10, 2009
Sinking
Ive been meaning to write for few days. I put it off last night as I was in a foul mood. I have no idea why I was in such a mood, you know when you just get in a mood for no reason and cant seem to get out of it. It was odd, as I was on my own all day yesterday, I was in isolation (I will explain i a minute) so I couldnt just go wander around the ward or anything and the staff had to gown up to come in so most of them didnt bother. Then mum text and said do you mind if I dont come in till later. She wanted to go for a walk around Birchwood and do non essential shopping and stuff) so it was 7 before I spoke to anyone properly. I spent most the day sleeping, curled up in a ball.
But as soon as she did come I didnt want her there, I didnt want to speak to her or anyone. I just wanted to curl back up and go to sleep. So I was very short with her and I couldnt help it. She started going on about speaking to one of the nurses where she works who deals with trachys and how I should have this care and that treatment and this equipment. I felt like saying I know but what do you want me to do about it. Its just so frustrating. I know they should be doing more but maybe if I was to try and speed them up it would mean me admitting how much things have got to change.
She kept going on about how I should be using my humidifier more, cleaning my tubes more often, changing my straps more often, having a new filiter every day. I felt like saying to her, well you know what, we could complain about the lack of info we have been given, but since you have complained every time I have been admitted so far its taken with a pinch of salt now. I mean last time, you had my dad fuming, you couldnt visit because 'you were too upset' and all because a nurse had canceled an appointment that I could not make it to as I was admitted. I mean really was it worth making such a fuss over something so stupid? And now that I could do with pushing them I wont because i have had it being a moaner.
So you just visited again today and im still in the same mood. I told you what Mr page had said to which you replied im sure the other doctors secretary could have told him if he was sick, so I said im only telling you what was told to me. We sat in silence then for a few more minutes until you got up and said you were going home to do some washing and that was it.
I know im not being a very nice person right now, but truth be told im struggling. I think im sinking into a bad depression. Im sleeping most the day and not talking to anyone. Building myself into a little box where no one can enter. Putting up those walls and believe me this time they are strong walls, I dont think I can take them down even if i want to. And suddenly and probably predictably, my mind races back to suicide and self harm.
I want to harm, but I know it will be messy and I dont have any dark bottoms I can wear to cover up. Different ways of killing myself are running through my mind, all the new possibilities that exist with my trachy. If only the bin hadnt have just been emptied, I could have gotten a syringe out of it and used it now. I could have been gone by tea time. I have no real means to do it in here, its so damn frustrating. Im impulsive enough that I would do it right now, without thinking about it.
Maybe its being stuck in this room too long. I say that it is approaching 3 weeks but its closer to 4 if you forget that I got out for one day near the beginning.
They say home hopefully on Monday, but I cant see it happening.
Man Im sinking low.
I hadnt realized till now how suicidal I was feeling again. But I will continue to paint a happy face on things. The staff here know me as someone who dosnt moan about being here and all the treatments and such. And I will wait. I will wait for one of them to slip up. To leave something in my room that they shouldnt. And then maybe I can act upon my desire. I know its selfish especially this close to christmas, but I have had enough pain, enough of trying to adjust, just enough. Im sure in time they will forgive me and see that it was truly for the best.
But as soon as she did come I didnt want her there, I didnt want to speak to her or anyone. I just wanted to curl back up and go to sleep. So I was very short with her and I couldnt help it. She started going on about speaking to one of the nurses where she works who deals with trachys and how I should have this care and that treatment and this equipment. I felt like saying I know but what do you want me to do about it. Its just so frustrating. I know they should be doing more but maybe if I was to try and speed them up it would mean me admitting how much things have got to change.
She kept going on about how I should be using my humidifier more, cleaning my tubes more often, changing my straps more often, having a new filiter every day. I felt like saying to her, well you know what, we could complain about the lack of info we have been given, but since you have complained every time I have been admitted so far its taken with a pinch of salt now. I mean last time, you had my dad fuming, you couldnt visit because 'you were too upset' and all because a nurse had canceled an appointment that I could not make it to as I was admitted. I mean really was it worth making such a fuss over something so stupid? And now that I could do with pushing them I wont because i have had it being a moaner.
So you just visited again today and im still in the same mood. I told you what Mr page had said to which you replied im sure the other doctors secretary could have told him if he was sick, so I said im only telling you what was told to me. We sat in silence then for a few more minutes until you got up and said you were going home to do some washing and that was it.
I know im not being a very nice person right now, but truth be told im struggling. I think im sinking into a bad depression. Im sleeping most the day and not talking to anyone. Building myself into a little box where no one can enter. Putting up those walls and believe me this time they are strong walls, I dont think I can take them down even if i want to. And suddenly and probably predictably, my mind races back to suicide and self harm.
I want to harm, but I know it will be messy and I dont have any dark bottoms I can wear to cover up. Different ways of killing myself are running through my mind, all the new possibilities that exist with my trachy. If only the bin hadnt have just been emptied, I could have gotten a syringe out of it and used it now. I could have been gone by tea time. I have no real means to do it in here, its so damn frustrating. Im impulsive enough that I would do it right now, without thinking about it.
Maybe its being stuck in this room too long. I say that it is approaching 3 weeks but its closer to 4 if you forget that I got out for one day near the beginning.
They say home hopefully on Monday, but I cant see it happening.
Man Im sinking low.
I hadnt realized till now how suicidal I was feeling again. But I will continue to paint a happy face on things. The staff here know me as someone who dosnt moan about being here and all the treatments and such. And I will wait. I will wait for one of them to slip up. To leave something in my room that they shouldnt. And then maybe I can act upon my desire. I know its selfish especially this close to christmas, but I have had enough pain, enough of trying to adjust, just enough. Im sure in time they will forgive me and see that it was truly for the best.
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