Any chance of an extension

urgh why am I so damn tired all the bloody time!
Last night I got about 9 hours sleep with only 2 interruptions. Didnt get up till dinner time. Had my dinner and started drifting off in the chair. A bit later my friend came over and while she was talking to mum I once again fell asleep on the couch, where I remained drifting in and out for about 2 hours. trying to fix my mums computer and I literally couldnt stay sitting up so I left it broke for now. meh job for tomorrow.

But I mean come on, I'm 24, supposed to be in the prime of my life and yet I cant stay awake for more than a couple of hours.

oh well shopping with mother tomorrow. Hopefully more energy so I can walk around. Oh and I must have overdone it on the Wii the other day boxing as I could barley move my legs yesterday.

I wonder if the NHS would pay for an extension on our house? I have way to much stuff to store these days. I took these photos a couple of weeks ago.

This is my supply cupboard with dressings, filters, ties, cavalon, sterile equipment and other fun such things. On top is my home care file, suction catheters and my emergency/tube change box. I have since received another bag full of differnt dressings to add to what I already have so go knows where they are going to go.

My once beloved computer desk with my top spec machine on that I used to use for web design and programming. (That computer hasnt been turned on since October >.<)

This is Sam, by suction machine and of course the mandatory bottle of hand gel.

This is Nessie my Nebulizer (With a rather long cord so I could still do things like getting ready for college of a morning while it was running)

This is my Kit bag that I dont leave the house without. Alco gel, spare tubes, tissues, wipes, saline and filters. fun eh

My 2 weekly med supply (the other 2 weeks gets stored in cupboard whereas these go in the draw next to my bed)

And this (apart from dressings) is what I have to pack if I am going out for a night eg: 24 hours worth of
meds.

So yep, my once geeky room where the main thing was my computer system has now been taken over by med stuff. fun fun fun

Breathing Space

Its been a mad few days. I feel like I have lived on my nebuliser. I havnt slept through a whole night yet without waking because my breathing is so restricted. I cant walk anywhere, even going the bathroom I come back gasping. I tried going shopping in Tescos with mum on Saturday. My throat became so tight that I felt like I had to physically suck air into my lungs, my chest muscles where killing me. Mum could tell I was struggling. She kept asking if I wanted to go and sit in the car. I said no. I couldnt tell her that I didnt want to sit in the car alone incase I went into respiratory arrest again. I was starting to panic, it really did feel like I was going to pass out.

Its really not a nice feeling, struggling for breath all the time. I could manage it when it was only struggling for breath on things like running up the stairs, but half the time Im getting this now just sitting still. It is exhausting me so much that I have been getting up late and still going for an hour nap in the afternoon. Problem is, I still wake up from my nap gasping and having to jump straight on my nebuliser.

Mum said before that I cant live like this and I think she is right. As much as I dont want it, im going to have to look into a permeant Tracheostomy. Just the thought of it makes me want to curl up in a ball and cry. But I think that I have pretty much reached the stage now where things are unbearable. I really dont want to consider having it done. Plus I dont have time now till the summer to have it done. Can I last that long as things are? I have a lot to think about.

I cant keep complaining about this to my surgeon, I already feel like he has had enough of me. I bet he regrets taking my case on. I dont see him again till two weeks on monday. That seems like an awful long way a way to live like this.

Saw my GP on Friday. The amlodipine hasnt even touched my pulse or blood pressure, they where both still very high. She has doubled my dosage now up to the maximum of 10mg. My bloods all came back clear again apart from my white blood cell count. I have to go for an ECG on monday now and I have to have more blood tests to check my hemoglobin and fasting glucose. She is still looking for the cause of my high blood pressure and wants to decrease my effexor dose again next week when i see her.

She started asking me all kinds of questions about if I was self harming and if I was suicidal. Mum was in the room so of course I lied my way through and said no I was fine. She asked when I last harmed and I just said about 3 weeks ago. Which is true as I havnt had the energy to do anything lately.

When we got out the doctors mum said to me, so what happened you got straight out of hospital and started harming again! I just shrugged and said I only did it once. I couldnt tell her I was doing it in the hospital. I think she may have had a heart attack if I did.

I needed a break so I went out with Alison on friday night. We went out for a meal. It was nice. But the topic of conversation soon turned to Peter. And of course in turn that went to Dave and me in hospital an all those other fun subjects. I kinda felt distanced from them all while talking about them and blocked most feelings out. Still not nice though.

Stressful weekend

What a weekend and its not over yet.
It started on Friday, when my friend phoned me to say she was being admitted to hospital. She had started new anti depressants but had gone into serotonin syndrome. I got lots of random texts off her that didnt make a lot of sense. by evening she was being discharged, which judging byt he way she was talking, I didnt agree with at all. She left the hospital but she hadnt been fully discharged as of then. The hospital rang her and asked her to come back as they wanted to give mer some meds. She didnt want to go back, but after a bit of persuasion, she did. All they did was give her a couple of days worth of sleeping pills. She went home took one and was out for the count.

Saturday she was hyper again, talking to her on the phone she was speaking so fast I could hardly understand her. She went out with a friend so I thought she would be safe. Her friend took her to a club, where she said people where listening to her thoughts through the music so she came home and took her sleeping pill again.

When I came online later on she was freaking out. Apparently someone was out to get her, they where outside the window and had swapped her meds as they now had a funny smell. I rang her and she said they where in her room but they had gone when the phone rang. She went to sleep but was awake fairly early. And that brings us to now. She still thinks people are out to get her, but she is hyper again.She wont go the hospital incase its them out to get her. Just wish there was more I could do. I would be down there in a shot if i was well enough.

But last night, I nearly chocked. After bragging the other day that I had gone a few days without needing my nebulizer, last night I blocked up good and proper. Got to the point where my breathing was getting stuck when i breathed in and out. I had to take huge big gasps to get it in and cough really hard to get it out. I was running my nebs again while I was doing this, but I was just about ready to say to mum get me to A&E. That would have been fun. Why is it always a saturday night? Anyway, after a lot of scary coughing, I finally managed to clear it.



Then I got some more news. Peter Chapman, the guy who I always thought had helped saved me, is being convicted of murder and is s know sex offender. Apprently he met a 17 year old girl off facebook, he was 32, and he killed her I really should remain single for the rest of my life. The last person I slept with is a known sex offender and now a murderer and the person before was a known rapist. Great choice I have in men. (gazzette article)

Pete was so kind to me. He gave me somewhere to go when things got violent with Dave and I had to get out. He went to the police with me, he held me while I sat in that horrible waiting room waiting for the police doctor to examine me. He made sure I ate and he sat and cuddle me all night when I couldnt sleep when we got back to his. When Dave went for me the first time, he pushed him into the kitchen away from me, when Dave caught up with me in the hall way brandishing his knife, Pete went and got help, even if it was to late, its the thought that counts right. He came to visit me when I was in ICU.

Even once I got out of hospital, he came to visit me a few times. He used to come the pub on a friday night with Haley and me. I was going to marry him, I decided at the time. He abused my trust then, but I never thought he was capable of doing what he has done. I was having trouble topping my phone up, so stupidly I gave him my bank card number and asked him to try from his phone. The follwoing week £30 went missing out my account to his phone. I couldnt deal with losing the trust I had in him. It was so hard to have any trust with anyone as it was and so I cut all contact with him, changing my number and such.

And until last night, that was the last time I had seen him. Pert of me is saying, how could he do that to someone after he saw what I went though and how much it effected me. Another part of me is saying maybe its my fault. Maybe, its some kind of psych compliant, kinda like he witnessed everything that happened to me and reenacted it. The girl was 17, he was 32 thats 15 years different. There was 10 years between Dave and I.


For some reason I have an urge to go to his trial. (3rd November) I know it would only cause upset. That I wouldnt be able to handle it in my present state. The urge is still there though. Didnt sleep much last night thinking about it. I cant get him out of my head. Seeing his picture in the paper just bought it all back. Which then of course had memories of him running through my head, which lead to memories of Dave running through my head, which in turn leads to even more nasty memories. Just wish my head would silence for a bit. I have to keep busy or it all starts playing through my mind. Stupid PTSD.

And of course I would normall make a post for support and I would normally talk to my friend about this, but I wont put any of it on her. Shes not well. I will tell her when she is better, but who knows when that will be. Its times like this I realise just how few friends I have these days. I guess I have pushed them all away, to be honest most couldnt deal with having a sick friend. When I first had my transplant, I couldnt do much for myself. They where young, 17/18 wanting to be carefree out having fun, not stuck with someone in a wheel chair who spent more time in hospital than out. From then we just grew further apart. And I havnt had the trust to make new friends really.

Anyway, enough depressed rambling for one entry.

Long way down

urgh I think I am coming down with something.
I slept in till 12 today and by 7 I was falling asleep on the sofa. IIt not like I have done anything today. I had dinner, showered and sat down trying to start my networking assignment. I kept getting distracted though and so didnt get very much done. I will attempt to do more tomorrow.

Feeling fairly low tonight to be honest. Lots of urges to cut my arms. Of course, I wont allow myself to cut my arms, cant risk more scars, there are already too many on my arms and I hate the way people look at them. Especially doctors when I get my blood pressure done or the phlebotomist when they draw blood. Someone male nurse asked me what the scars where off last time I was in ICU. I just looked at him an said Self Harm. He kinda gave me an odd look and went ok and walked off. It was actully fairly amusing to see his reaction.

Im resisting urges to go look at pictures of self harm. When im in this type of mood I often find myself looking at pictures, comparing my level of damage to what others do. I would say I cut my legs fairly deep to most people, but my arms are pretty clean. I dont know what it is, but slit wrists just look so pretty.

I dont know if its the risk to life, the blood, the wound what, I dont know they just look good to me. ha with a mind set like this I really shouldnt be coming of the psych meds. But I dont get a choice in that do I. Of course my Blood pressure is more important. Part of me is saying good to coming off them, to see how low I can get again, see if I have the courage this time to end it all properly. To gain some new decent scars as mine are all fading. But I also know that it would mess up uni again. Not to mention I dont think my family would stand by me to fall apart again.

Ive done the whole psych ward thing, I dont need to do it again. Oh well. See the doc a week on Friday, see what she says.

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.