Getting their monkey

So on the positive, I am feeling a little better today. I awoke about 10:30 (which is early for me) and I have not napped through the day. I dont know where half the day has gone if I am honest. Did some washing ready for my hols, but had hoped to have my bag packed by now (oh well) instead I have a huge big pile on my bed of things I want to take. (But I might rant some more about that tomorrow. lucky readers huh)

Im still chocking off and on, but generally Im coughing more muck up which has got to be a good start and my temp has stayed stable all day.

I did have a coughing fit before (I have had a fair few today, but this one sticks in my mind.) My dad was napping in the chair in the corner. I started coughing and spluttering and mum knocks me on the arm, gives me a glare to kill, and tells me to shut up as dad is sleeping. Well excuse me for breathing! As horrible as it sounds I hope one day she ends up needing a trachy for some reasons just so she can see what it is like. Its not like normal coughing, you cant shut your mouth and make it quiet, you cant do little coughs as it will just block up the tube and you cant hold it in as it restricts your intake.

I do hate having a trach, but I have had to adjust to it. However, I think mum hasnt yet. Which is kind of annoying. oh unless, we are out and someone mentions something and then she is all 'oww poor her blah blah' as she like the attention, which annoys the hell out of me, as I dont tell people things (I still have the whole I want to be treated normal thing going on) *sigh*




Anyway, this evening, I went with a friend to see Dear John. It was sad in places, predictable in others. The bit that got me the most, wasnt even a sad bit. The song Paperweights by Joshua Radient was playing in the background a couple of times and all I could see was Eva's smiling face from the video she made with the same song on. Its nice to be able to think back and reflect on her being happy, kinda gives you hope you know. I do miss her, but she will always live on through the people who remember her and those whose lives she touched.



Oh and i had another cough/chocking fit, while I was paying in the cinemas, which wasnt fun. I was using my disabled card, so I kinda had to be present as they need to check I match the pic and such. So I just kinda had to turn my back on everyone and face the corner, while making some odd noises.

I am nervous as hell for tomorrow. The nurses are coming out to the house to change my trach tube. This will be the first time it has been changed outside of hospital. Im nervous incase there are any problems with it going wrong and such. But I should trust the nurses, that it is going to be fine. (I hope)

On that note, I should get some sleep as I have a lot to do tomorrow.

(Oh and someone commented on a lot of my entries today, but I cant seem to click into their profile, so sorry if it seems like I am being rude or anything, I dont mean to)

The dawn of a New Era

First off, I have some good news!

I got my appointment letter through to go down and see the team in London! YAY finally getting somewhere again. Its a week tomorrow, so its really soon (which is a good thing) Now just need to find some cheap transport and accommodation. So excited.

I dont know if I should email the surgeon I emailed originally with some crappy excuse like asking him if there is anything that I need to bring to my first appointment, as just a way to make sure that he definitely knows that I am coming down. I am pretty sure he does, but there is still that slim chance. And I dont want to travel all the way down there and it turn out someone in admin made a mistake and there are only junior doctors their and not who i need to see or something.

I was going to post about getting this appointment when I first received the letter. However as it was only a few hours since my last post, I decided I would wait until the evening when I usually post and things had settled in a bit a more.

But then (another) encounter with my mother put me in an absolutely foul mood. I had to get it out, but I was reluctant to post it on here as all I seem to do is moan on here these days, so instead it ended up typed out on my ipod. This is from my first post on this blog:

Trying to stay positive

I need somewhere I can safely rant and moan.

At the moment I seem to be whining a lot and obviously I dont want others to get bored of me. I dont want to be that person that is constantly complaining. I know i need to make the most of things.

Originally I wanted this to be a place where I would be positive where possible. When my health took a sudden turn for the worst, I felt alone. I was in a ward where all the patients where at least 30 years my senior and I know numbers dont matter, but you know, would talking to someone that much older get it when you said you dont want them to perform this potentially life altering procedure because people might look at you funny? Or would they say you lucky to have the chance ect. Since I was stabbed at 16, my life has been a mass of hospitals and appointments and missing out on things. While my friends where all off to party and get drunk in Ibiza, I was in hospital with pneumonia, when they where all meeting boyfriends and doing day long shopping trips for clothes and make up and I was learning to walk again and having my mum bathe me and my dad carry me up the stairs.


I felt like I had missed out on so much and I guess I just wanted someone who could relate, maybe to speak to someone who had gone through something similar and come out the other side. I was also silently hoping I was going to find someone else who had similar problems as I did and they where marcously going to turn around and say, no your dont have to have any of those surgeries there is a magic cure that will fix everything.

But after searching and making many posts in vain, I didnt find anyone. The closets comparisons I could find where people with CF, but even that was different. People with CF seem to exist in a very tight knit community and dont seem to readily accept people with completely different problems that might still be just as debilitating. And even if they did, can you really compare my problems to theirs? Yes they get sick and have trouble breathing, but in the end it only really goes one of two ways. They either end up with a transplant so things improve for them or they die. I didnt have the prospect of things getting better and couldnt compare my issues with someone dying.

So I started this blog. And it was going to be about my journey through this and what I had found.
But before my health did go downhill, I suffered from depression, when I got ill the depression kind of took a back burner, now things are settling? Well the depression is coming back in.

So I dont feel that this blog is a true record of what is happening to me. I think the depression is dragging things backwards and downwards. Do I really want to potentially have someone struggling like I was to read this and see all this negativity that has nothing really do to with the problems that originally sent them looking for this info?

So I am thinking long and hard about splitting this blog into two. One to deal with physical health and one to deal with mental health.

But are the two really that separate? Would I still be depressed if I didnt have any problems?

And the answer is, that I dont know. I just really dont know anymore. Any views on this are greatly appreciated. Have you had enough of my depressive ramblings? let me know.

Im unsettled. Im pacing, not concentrating on anything. Maybe its time for change? Ive had this blog theme since day one (6 months ago) Is it time to freshen that up? Or has that too become part of me and my blogging.

I get a fair amount of views, yet I cant believe people actually read what I write. I do get some comments, but not loads. So who does read it and what do they really think.

Sorry this is so long. Guess im just *shrugs*... mad as a hatter?

Double standards

Advanced warning: This is a pissed of uber annoyed post and will probably contain a fair bit of swearing. Oh what fun.

I am fucking fed up of your bloody double standards mrs oh so fucking perfect!
I was sick, from Thursday through to Wednesday. However, I did not moan, I got on with things. You had a right nark on with me on Sunday because it was mothers day and meant to be your day and yet I was being lazy. (It didnt matter to you that I felt absolutely rotten and it hurt to move or do anything) So I did what I could. I went to the cemetery even though all I wanted to do was curl up. Then when I sat down to recover for like 20mins you start kicking my possesions around 'because I shouldnt dare have anything of mine downstairs!' I was basically told to suck it up and get on with things when I was unwell.

But then you pick up the same virus from me, as does my niece. My niece, like me gets on with it and dosnt make a fuss. But you get, and its the end of the fucking world! You had to go to bed very early, then bring in a clear basin that you puked in to show me how sick you was. (Yes at the time I was still throwing up myself but I didnt bother taking the time to show you... mhmm why did i do this? maybe because im not a sick twat!)

So then you lie on the couch all day and cant possibly move, not even to get your own drink (Bear in mind if the illness progresses the same, this is the day I was being told off for not doing enough) Then in the evening you were offered food but said you would get something later. Then you go to bed in a sulk because dad didnt offer to make you something to eat later on!

All day you had go at me, that I didnt have to stress so much about getting dads tea done and stuff because he is perfectly capable of doing it himself. Then the next day when I didnt do much, you told me off because dad has been working all the hours and shouldnt have to come home and do anything in the house! Make up your bloody mind!

You tell me I am lazy and shouldnt sleep so much. And then when the doctor asks, you tell her that I need my sleep because my nights are disturbed. And oh joy, the doctor told you today that if oyu didnt begin to feel better by saturday to not go back to work. Gee thanks Dr. You know my mum, you know she will milk this for all its worth. So now it looks like I am going to have to put up with her all next week to as i bet she stays off.

Mum said something before in the car. And I mentioned that we had the same thing so it will probably run the same course and if anything hers should clear quicker than mine as she is healthier than and with a proper immune system. Her reply: But I have been much sicker than you. I just looked at her. And she started explaining about throwing up and such. I just said... oh right, I didnt have any of then? I must have dreamt it. Just because I dont bloody go on about it permanently dosnt mean I dont have.

Its like the other day when a doctor was going on about how high at risk I am from cancer due to my medications. We come out and mum goes, yeah your probably about the same risk as me now, because I got sunburn as kid!! FFS stop comparing, its not a bloody competition to see who is the fucking sickest. Because to be honest with you, you can be the sickest! You can take all my pills and go through all the surgeries and procedures and the trouble doing things and everything that goes with it!

Argh. Majorly pissed with her!

Oh and then she sees that I have just taken my bedding straight out the tumble dryer and am folding it and she starts having a go at me because its creased and its never creased when she does it. For one its bedding, I dont really care if its creased! And for 2, what the fuck am I suppossed to do? Iron it before I put it in the dryer then fold it up all nice and ask the dryer nicely not to toss it around to much. Fucking get over it loserhead!

Im on a slippery slope right now.  I gave up my 2 months free. I dont want to be free anymore. I miss the control and all the other feelings of release that come with it. Its funny, I was looking at pics earlier from a time when I was a mess and causing a pretty bad mess of myself. You can see my hand in one of them. With perfectly manicured nails all painted and shinny with the french tip. Good how you can be totally falling apart, yet on the outside, everything looks rosey. Time for a relapse I think. I still have it in me, I doubted it at one point but I know its still there.

hello brickwall

urgh
Ever feel like no one knows what they are actually doing?

When I saw my GP on Monday, I mentioned that I was still having trouble with the amount of crap and the consistency of it that I was coughing off my chest. The GP didnt know what to suggest but said she would phone the trachy nurse and get back to me.

Well the doctors rang (in the morning when they know and have down on file that I have no voice and I am home alone) to tell me that the doctor had spoken to the trachy nurse. The nurse thinks maybe my tube needs changing (even though I have had this problem continuously since getting the damn tube and its still been present after the last 3 tube changes i have had) or that it might be my central heating (even though I had the same trouble in the hospital where the heating was different.)

So the doctors where phoning me to tell me that I now need to run saline nebs 4 times a day. I explained that I have been running not only saline nebs but also hypertonic (6%) saline nebs 4 times a day each since I got out of hospital and for most the time I was in hospital. The surgery seemed surprised and asked me where I was getting the supplies to do this from?!?!? ermm on repeat prescription from you...... The GP even commented last time I saw her that it was excessive being tied to a nebuliser 8 times a day. *headdesk* She said she would speak to the doc and phone me back.

So when she phoned back the reply was 'Yeah the doctor still wants you to run these saline nebs 4 times a day please till your next clinic appointment and there is a script waiting here for you to pick it up' urmm gee thanks, Ill pick it up next time im there, I only just got my months supply off you 3 days ago so I have plenty here.

Its so frustrating! No one seems to have a clue and the trachy nurses answer to every problem is you need your tube changing!

Right now, I am searching through the drug tariff to get the codes for all the equipment I need to order and such. This shouldnt be my job! What would someone else who didnt know how to search and find this stuff do?!?! The nurses ordered me specialist dressings ermm about 3 weeks ago, still no sign. Trachy services around here really are crap and they dont have a clue how to deal with one.

And that is  my little rant for the night. Im really ticked off things around here. Almost makes me want to go out and fix it. hmm one day maybe.

Tonights cocktail. Pills the bain of my life. or should that be nebs the bain of my life after today.

Released

So they finally let me out last night (after 79 days) from the ward YAY! It was nice to be able to sit and relax this evening without the hassel of having to get up an go back the ward and all that.

So yeah, had the district nurse out today. She was rather useless. I had to teach her how to use the equipment and do the dressing. She didnt bring the equipment that they had to have before I could be let out, in fact they didnt bring anything. No dressings, no suction equipment, nothing. I had to give her a list of equipment I needed ordering and explain what most of it was. And then she says yeah well your probably better off getting this stuff from the GP rather than off us. *headdesk* What is the point of them then!!

But YAY to not having to be up so early. Although I still have no voice.

Didnt get a chance to talk to my surgeon this week about the referral to London as he appears to be off all week. But hoping to get an outpatient appointment with him soon as possible.

7 years!

So I meant to post yesterday, but didnt get around to it (naughty naughty) I dont know how I ran out of time as I didnt leave the hospital, although I did sleep a lot (nothing new there then)

Well anyway, yesterday marks 7 years since my transplant.
I read other peoples posts about how grateful they are for the turn around in there life and how much better they are since receiving there transplant. It makes me feel bitter as I dont feel that overwhelming feeling of gratefulness. I think I know why. Most people are very ill before their transplant and then they get the transplant and things get better for them.

Im the opposite. I wasnt ill before my transplant (I was stabbed) and since my transplant, I have been ill in one way or another for most the 7 years. Started off with all the normal after transplant stuff, infections (kidney, stomach, chest), then came my surgical stint when I had a hernia repair followed by a major op for an ovarian cyst and acute appendix followed by another hernia. Then throw in being diagnosed with hearing loss and needing hearing aids. Then all the mental health stuff that came running along (and is still ever present) and then the latest thing with my breathing being rubbish and needing a trachy. The last 7 years havnt been ones of getting better, they have been bloody hard years and I have the scars to prove it.

I dont know, I just feel like I should be more thankful for my transplant, but the fact of the matter is that there are days when i am not. There are days when I wish/pray that they hadnt saved me as dealing with everything else is just to damn much.

But I must be getting better. Usually around this time of year I beat myself up for not being grateful but I think perhaps im starting to analyze it and know why I feel this way. Maybe its the first steps towards acceptance. One can only hope.

And then another blow was dealt today. Last night, my voice started to go raspy. Today it is barley a whisper. Concerned I spoke to my surgeon this evening. His words, well i dont want to mess with that. Great, so im supposed to deal with having no voice?!? He mentioned the other day that my breathing being tight when I use the speaking valve is probably where my airway has collapsed above. I think the speaking is related. Im just really hoping that its not permeant.

I mean really, he said having a trachy would solve all my problems. That I would be able to do everything I could do before but my breathing would be better. Well it is no better, not really and now im losing my voice and then there is all the care of the trach that goes with it. Things are not better, there worse! And im trying to be hopeful and im trying to stay positive but it seems like such a waste when you keep getting dealt new blows.

And im still in hospital as they cant sort out the equipment I need to go home with. Oh well less stress without having to deal with all the christmas stuff I suppose. *sigh*
Will things get better? eventually? maybe?

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.

Big step backwards

When I was first discharged from hospital after my transplant, I had to basically learn to walk again. Most of my muscles had wasted away with lying still and not moving for 3 months. After 3 months on a ventilator, even breathing on my own seemed a huge task. But once I started getting about, I swore that I would not go back to being like that. Spending most my time in a wheelchair, then on to a walker, upgrading to crutches. It was a long task, it took months, well more so years as I kept hitting set backs, like needing further surgery. But I did it.

When I was in ICU last month, as soon as I was awake, I started doing all my old physio exercises I could remember so that I didnt seize up. Within hours of getting the breathing tube out, I was sat up and sat out by the next day.

But today, was just to tiring. It was a simple shop, we only had 40 minutes till closing time. I ran my nebs sitting in the car as I was rattling without them. But walking from the car to the shop entrance I was gasping. I couldnt do it. So I agreed to use a wheelchair. This is a huge step back. It feels like I have done everything I can to avoid this, yet have ended up here just the same. Why did I bother to work for it?

The worst part is knowing that things might not get better. Sure I can go for this permeant tracheostomy, but the one the surgeon wants to put in will be a closed system so I still breathe through my mouth as opposed to my neck. But my throat is still going to be narrow, so I doubt it will make much difference. I need to speak to my surgeon, but I dont see him for another week. Wish it was tomorrow I was seeing him, but he is away. A week seems like a long time when every breath hurts.

Mum asked me what I wanted for christmas, I said jokingly a new throat please. She welled up and said if she could she would have by now. She tried talking to me about this trachy the other day but again she kept welling up. I couldnt discuss it.

In other news, I am being referred to a cardiologist. After the GP doubling my blood pressure meds, it hasnt even started to come down and she dosnt want to take chances while its so high. So theres someone else I have to go see. Dont know when thats going to come through. Feel like I am falling apart.

And this has taken twice as long to type. stupid tears. I wish I had the strength that others seem to have. The type that fight on bravely and courageously instead of being a whiner like me. Oh what I would give right now to paint a happy face on things. But its hard enough keeping that face there infront of family and college people, let alone when im alone.

Please

I keep trying to work on this stupid assignment for networking. Not only is it one of my worst areas of computers, but it is taking me twice as long as it should due to having to research everything as I missed the lectures with being stuck in hospital. I dont understand half the concepts and its just becoming annoying. That and the fact that right now I have the concentration of a fish. Im hoping its the steroids that are making me like this. I get to stop them completely on Sunday. So we will see how i feel then and of course if my blood pressure comes down.

Mum went shopping on her way home from work today so I sorted my own dinner. I was in the living room when she came in and I had just finished my yoghurt I was having for desert. I started telling her that we forgot to put the baby tortoise to bed last night as he had dug down in the soil and we forgot to undig him and put him in the bed.

She then proceeded to lecture me on how little I have to do and I still cant manage to do the one thing I was suppossed to do right. That I never do anything for the torts (felt like saying yeah, Ive just been showering the baby twice a day and doing his eye drops, that I have never once seen you do!) Which then lead on to the usual lecture about how lazy I am and how little I do, (all this was while she was loudly unstacking the dishwasher and slamming pots and pans around) How little I did yesterday. I would have washed up, but she had already said she wanted to stack the dishwasher. And during the day I was working on my assignment. Just grrr.

I have really low self esteem as it is, but when mum starts putting me down, what little esteem is there just vanishes. I find myself fighting to hold in my tears. I could never cry in front of her, that would be a sign of weakness, it would let her know that she has won! the last time I lost control and cried in front of her was when we were on holiday and she was being awful to me and bethany. I felt so sorry for Bethany as she had never experienced anything like it before. And I started crying and couldnt stop. It went on for a good few hours, even when i got called out to eat tea. To which she told me I should be ashamed crying in front of Bethany. Gee thanks mum.

This song kinda sums up a lot of how I feel right now.


In more positive news, I went two whole days without using my nebuliser. I had to use it this afternoon after coughing my guts up and I should probably use it again now, but dont want to wake people up. But two days is good. Something must be improving. Even if I still cant breathe. Felt breathless all day today for no real reason. Dont feel blocked up, but just moving around making me feel like im lacking oxygen. Not a nice feeling. And yes I have tried walking slower but it far to hard. I cant physically make myself walk slower.