Hospital chronicles

Things have settled. I feel calmer.
The last week was difficult, I know I could have handled it better, but that dosnt mean that I am not proud for how far I have come in actully handling things at all.

I knew I needed the antibiotics.
My doctor knew I needed the antibiotics.
But the ward doctor didnt think I did.
the problem partially comes from my hospital records being spread through so many various hospitals.
Even my local hospital is split into 2. I see my doctor in clinic in one part, but he admits me to the ward in another part. Simple enough, but the notes he writes, dont come to ward.
The other issue being that my body dosnt do anything normally.
We know my lungs are infected. We know the infection is wrecking havoc on my body.
Yet my body dosnt show the usual signs like tempertures or raised white blood cell counts.
Our theory is my body is just supoer friendly and welcomes every bug and germ in with no question. Practically sits it down and offers it tea and cakes, rather than attacking it and telling it to get out.
By this point, we know my body is odd.

So anyway, the doctor who dosnt know me, wants to follow what he has been taught as a doctor. So he didnt want me on the meds, but at the same time, he wasnt prepared to take responbility and discharge me. He was suppossed to get in touch with my doctor, but who knows. 2 days later, I was still sitting there feeling like crap, stuck in a small room all day, going crazy while it felt like no one was listening to me.

It was hard, because I have to trust that doctors know best. But to then say, well wait a minute, that is not what is planned, took a hell of a lot of stress.
But I did it. They still wouldnt listen, so I packed my bag and told them I was leaving the ward. That they could phone me when  they had made a descsion on what to do. Within 20 minutes they decided that I did need the meds and I was once again all hooked up.

Just annoying that it had to get to that point.

So after having about 4 of these in 2 days, not to mention at one point having to have fingers taped to gether to support the needle.

My arms are pretty messy and I look like I have been street fight. The first rules of fight club, there is no fight club.

So a nice doctor took pity on me (was requested to and is being ultra nice to me to make up for last week) and fitted me with a long line. Which is basically an ultra long needle that is threaded in to a vein in my arm and goes right up into my shoulder. Making it a little more durable that the silly venflons.

I also managed to get out for a couple of hours the other day(Who am I kidding, I treat this place like a hotel ha. When things are going ok, I generally get all my treatments and tests and stuff done of a morning. Then after my afternoon IV meds, I go home till my night time ones. Comes in handy living close to the hospital) But, on this occasion, a friend came to visit from Wales. It was nice having a catch up. Though, she was a little taken aback that she came to visit me in hospital dn I then demanded that instead we went to the pub. haha.

Alas, it was nice to catch up. She was the same throat issues as me and it is just wonderful sometimes, to be able to say something and know that someone truly gets it. That yes, I can look good and go out for a couple of hours and nobody would know any differnce. But there is a difernce in that it takes hours to get to that point and I will need the next couple of days to recover. Alas rant over. Anyway, there are negatives and postives to both of this, but I shall leave that for another night.

I havnt seen her in a while and she commented on how long my hair had gotten. Its odd, I hadnt notice until then. But then, I had actully striahgtened it, something I have not done for about 2 years.

I have not had hair this long since I was about 16. Its odd and it annoys me but I love it at the same time. Though, I think its time for a colour. Nothing to major but watch this space I guess.

anyway, super time then sleep I think. If I can sleep. I made the mistake of sitting on my bed at home at about 4 this afternoon and the next think I knew it was 8 oops. (Just for the record, the yoghurt is the tastiest. nom I do love meringues.

unwinding.

I feel like I am held together tonight with thin threads and tape. I look whole and if you were to glance at me or talk to me,  I am my usual self. But if you look close, you will see the cracks and should I move wrong, it will all come crumbling down. Holding it together is not so much an act like it has been in the past, I do feel okay most of the time, but then something small happens and everything becomes so heavy, that I wonder how I will make it through.

Yesterday was my visa appointment in London. Long story short, I am not getting my visa. They cant issue me one under normal conditions. I can apply to homeland security and may get one, but there is currently a 6 month wait for these to come through. So once again, I have to tell my niece that she isnt getting her holiday. I feel so bad for her some times.

I also had clinic in London, mainly for a check up, but my breathing has been getting tougher and nosier. so they had a check down with the camera. Turns out, I now have scar tissue below the trach. This is not good news. We suspected that it would happen, but silently hoped that it would be a long way off yet. So next Tuesday I have to go back to see the boss and come up with a plan.

In the meantime, I am back in hospital and on my 3rd IV of the day. This afternoon they fitted a long line, which is a tiny tube that goes through a needle and is then threaded up in to the vein. It goes in at my elbow and extends to about my shoulder. These are thinner and last longer than a normal cannula, or they should. I have just had one dose of med through mine and it blocked 5 times. gah my arms are starting to look pretty shades.

Im tired. Really tired. London wore me out. I got to bed about 2am, they came to put the IV in at 6am. From then on, I have had a few 30 mins naps here and there. I came close to getting in trouble this morning. My machine had finished but it took about 90 mins for them to turn it off. I wanted to sleep and couldnt due to the alarms of the machine. II was about to just shut it down myself, but right now, need to avoid making enemies of the staff.

So tonight I am hoping to sleep. And hoping that they come up with a solution tomorrow, as coughing and breathing is getting scary and scary is harder to come with when exhausted.

But other than that. I had a great time in London. It was wonderful to see my niece relax. To be away from everything and having fun. Acting like a 12 year old should act. And today, she has been curled up on my bed with me watching tv. I really hope that she knows how much she means to me. I will try and post more tomorrow about London and some photos.