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.

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.

back to the ward

Well I did end up in hospital, again!
I was feeling really breathless, so mum said why not go the walk in centre and get your oxygen saturations checked. i agreed to this, thinking if there fine then I have nothing to worry about and if there low, i can go look for treatment.

Well I got there and was taken through to triage and hooked upto the machine. The nurse looked at the numbers and said hang on I will be right back and went to get another nurse to help her. My pulse was 145. They took it mannual and said it was irregular. Listened to my chest to which they said it was clear. They then said they that they wouldnt be happy with me going home. They were going to send me to the royal, but I mentioned that I was on C ward in the cardio hospital. they didnt know how to have me addmitted to there as there is no A&E.

So they rang the ward, who put them thruogh to my consulatants registrar who said he would admit me. 5 minutes later the hospital phoned back and said they had a bed for me. So i go to leave and the staff at the walk in then say there not happy for me to go in my condition with my mum. they wanted to phone an ambulance to take me incase there were any problems on the way down there. After much persuasion I managed to talk them out of it on the condition that I went straight there and used a wheel chair to get from the car to the ward.

So that was me stuck in the ward yet again. didnt get any sleep as i was in the main ward where people where in and out all night. saw my surgeon the next morning and told him what happened. He said he would take me down for another broncoscopy while I was in so he could check everything and then I could go home.

Went down for my bronc at 4 and came back at 5. Asked the nurse if i could still go home that night, she said she doubted it, but could go home early next morning. the surgeon came to the ward to see me and again confirmed that I could go home first thing the next morning. I looked at him and said can I go tonight please. he thought for a moment,t hen said, you do live right opposite the hospital, so I supposse so as long as you come straight back if there are any problems.

So by 8 i was home again. YAY.
Thought i was going to get readdmitted though. Went to sleep about 11 but at 3am, I woke struggeling to breathe. It once again felt like i was breathing thruogh a straw. I couldnt cough as my throat was so sore and dry. I spent about an hour trying to clear it. in the end I decidied that i would plug my nebulizer in give it one go and if it didnt work then I would go wake up my parents an go back the hospital. Luckily, by the time I ran one neb through I was able to cough it clear. Still scary though.

So i have woken up this morning, feeling crap, too hot, too cold, sore throat, headache, aching all over. feel really rough. Suppossed to be going for a blood test on the way home too. Was suppossed to get it yesterday but of course being on the ward meant I couldnt. I just need to sleep, but im in college now. Not that it is doing me any good being in here, I cant concentrate on anything and so im just traweling the web.

In other news Peters trial got adjourned till Janurary. I am considering writting to him if i can, not sure yet. Bloody january though.

Oh well enough moaning for one post.

Panicking that GP

Uni seems to be going okay, although I have a ton of work to do and absolutely no motivation to do it. I have half term next week so Im going to make sure I work on some of the assignments then. I have on assignment due in on the 5th November, which I want finished by the end of half term and I really want to get a good start on Sid assignment. too.

I seem to be getting on better in Uni. I actually talk to all the lads now and even went over to subway with them for dinner on Wednesday. That was hard work, keeping up with them without panting. I made an excuse that I was going the loo and would meet them later so that I could walk a different way only a bit slower.

Was allowed to leave early (3 instead of 4) which was good because I was beginning to rattle again. Mum was putting the tea on when I got in. She was son having a go at me over how lazy I am. I told her im tired all the time and if I go to uni, I dont have the energy to come home and do stuff. To which she told me that I was going to be like this for the foreseeable future so I should just get used to it and stop using it as an excuse to be lazy. Yeah because just knowing that I am going to be like this means I can suddenly do things that I couldnt before I knew i was going to be like this. just urgh. We had a row about how many times i had done the dishes ha. There was only one day i didnt do them, but she claims i hadnt done them all week.

So anyway, 5 came and I had a GP appointment, to which I attended with my mum and a whole list of problems. I needed to check I could still get the flu jab with my current meds as I wasnt sure with being on steroids. I can and so need to book this in soon. I needed to tell her about ditching my psych and ask her to fill the form in for my disabled badge application. I also mentioned that I had a terrible hand tremor that was worse of a morning and that there had been some concerns about my blood pressure and pulse while I was in hospital.

So she checked my bp and then checked again on my other arm and it was high. (190/120, pulse 128) She seemed shocked and read through my notes. She then asked me to wait outside as she wanted to do it again in 30mins to make sure it wasnt a one off or from exertion. I certainly got a long appointment. She was shocked that my BP had been left as high as it was and only let me go home on the condition that I wasnt alone and if I felt ill, I was to go straight to A&E and she would phone me the next day when she had more info.

So today, she rang me and asked me to come back down and see her. She repeated my bp again on both arms, it was the same as yesterday. She had phoned Leeds for my last lot of blood tests from Liver clinic and she had phone Cardio for my last blood results while I was in there. all of them came back clear, however there was no thyroid function in either place so she sent me for a blood test for this and did a whole work up while she was there. She then said she would ring me later and sent me home.

She called about 7 o'clock. Apparently she had been trying to get hold of my surgeon who did my throat surgery to ask why nothing had been done about my BP and to ask his advice on medication. Apparently the heart meds she wants me on can cause breathing problems so she wanted to get his advice. However, he hadnt returned her call. So she asked if I would be ok over the weekend. Again if I felt ill to go straight to A&E. I have an appointment with my surgeon on Monday anyway and she will have the blood results back by then and will see me again in the afternoon. She will probably start me on beta blockers if my thyroid comes back fine.

Oh what joy more meds. She did seem really concerned with how high it was though, which is a little worrying. Why didnt the hospital do anything if it was that bad? Instead of just saying well that must just be your normal. Its not normal and its damaging so yeah. She also wants to stop my psych meds incase these are causing my BP to be high. So im now taking 75mg less of venlafaxine. This will be fun, still depressed yet stopping the anti depressants and my psych dont want to know. hmm we shall see.