Friday, August 27, 2010

Baby food

I have been staring at the screen for 10 minutes wondering how to word this entry or how to start it. I have no idea what my head is telling me today.

There has been good aspects to the last few days that I have enjoyed, there have been frustrating ones when I wish I had my voice to speak up or I had the courage to stand up to people and voice my opinions. Mixed in with all this there is an underlying fear and heck of a lot of denial. My brain feels like baby food, all differnt flavors, colors consistencies all mixed together. All going on together and yet all the tastes are there.

The doctors have written me up for painkillers again. Volterol and Codiene. I asked for painkillers they asked why. I said (yet again) that I am coughing that much that every morning I wake with so much pain in my chest, back and shoulders. They didnt bother examining why suddenly 2 weeks after surgery I am getting such pain or having such a bad cough, they just wrote up the meds.

Yesterday a friend of mine was admitted to hospital. Its been a long time coming, but that dosnt make it any easier. I just really hope that this admission actually helps her and gets her the support she needs to get through this rough patch and out the other side. But of course, I still wish there was more I could do. Find the magic words that make everything better. I hate to see others suffering, especially sweet, lovely nice people like her.

The nurses are being nicer to me now. I think they see me as the easy patient now as there is very little for them to do. A lot of the nurses and some of the doctors even wave on the way past or have short conversations whilst on the go. But I still get pissed off easily. One nurse who was being nice to me yesterday
left me very annoyed at meal times. My friend Cam was visiting as she has been everyday since my mum had to go home. It breaks up the day and allows me to socialize. They were bringing dinners round and in my bay at the time there was only me and one other girl in the bed opposite me (we shall call her moaner.)

My friend got asked to leave the bay whilst meals were being served, which ok, is fair enough if thats who the ward operates (though its the first time she has ever been asked to) but moaner had 2 people with her and neither of them got asked to leave!! To me that just seems unfair.

But anyway, we christened her moaner as that is basically what she is. She had surgery the day before so it wasnt even like it was that day. But al you could hear was moaning and whining and she even called the nurse at one point to pour her a glass of water, which was pathetic as I had heard her opening the drawers in her unit which was further away than the water. She was complaining that she didnt have enough pain relief even though she looked stoned and kept falling asleep mid conversation. She has told the nurses she is in to much pain to eat or do anything, but when no one is around all you can hear is the rustling of sweet and crisp papers. Gah some people annoy me. I do feel for those who have been to surgery with general medical conditions, but hers is technically self inflicted and is cosmetic. Oh well she has been told she is getting discharged on Sunday, but I bet she hangs around till at least Tuesday.

This morning has probably been the most mixed emotions. The last few days, I have found that I have been getting more breathless. In true Kim style, I have been ignoring it. You never know if you ignore it long enough it might go away :) But anyway, I didnt sleep last night as I kept waking up gasping. At one point I sat bolt upright for about 20 minutes as I felt like I literally had to suck the air into my lungs. I contemplated calling a nurse, but in the end settled for putting some saline down my throat having a good cough and going back to sleep.

I had weird reams when I did sleep to. Something about I had been hacking and coding something to do illegal things with it. However, I had managed to unleash a virus type of thing, that spread to humans. :/ Those who had it, basically had to be killed, including my elderly neighbors, which was sad. The government thought they had control of it then and al the hyper died down. But then it suddenly came back and infected nearly everyone. There was one building left where they thought it hadnt infected and they were working on securing it, when suddenly one person started showing symptoms and the whole building had it and yeah. Very odd.

So this morning, I was meeting a friend, so I got up early to run a load of nebs in hope of clearing my chest. A few days ago, I could potter around the bay the bay and such without getting too out of breath. This morning though, I bent to get my stuff out the locker which took about 2 mins and I literally had to sit down for another 5 minutes to catch my breathe and stop going dizzy. Even moving from one side of the bed to the other, I would feel I couldnt breathe. I coudlnt get the air in and out of my lungs quick enough. When I got finished in the bathroom, I noticed that my nails had a blue tinge to them. Again, I chopped it down to being psychosomatic and thought perhaps I am just whining as I have had a bad night and I am getting fed up. But my friend commented this morning that she has noticed that I am getting more breathless the last few days. Frankly this scares the hell out of me.

If my breathing is getting worse while I still have the stent and trach in, what hope do I have next week when it comes out. If I am getting more breathless, it has to be either below the trach or my lungs. Neither of which are a good sign. My lungs are crap, but not that crap and it cant be an infection as my obs are all stable.

I am not sure where this leaves me. I can tell the nurses but the first thing they are going to do is look at my oxygen saturations which are fine. But my sats are always fine. I mean I went into respiratory arrest and still had 100% sats. I hate this feeling of uncertainty and I am holding back the tears. This surgery needs to work! And all the signs are pointing towards it not having worked. I have been positive and I have done everything they have told me. I have followed the routines, I have rested, I have pushed myself and I am trying to remain mobile, but its so frustrating when your body dosnt agree.

That being said, this morning, I felt as normal as I have felt for a very long time. I was meeting a friend for breakfast. Some people flourish with routines, but not me, I feel much better without a routine and with different and spontaneous things. So we decide to go for breakfast in the hospital. I got up and washed and kinda styled my hair as best I can without gel. Then we went for breakfast. It felt good, kinda normal, kinda what you see people doing in films. Getting up and ready of a morning, meeting for breakfast and a gossip, then going seperate ways about your own daily tasks. Yes, mine did start on a downer with my breathing and the rest of my day will be spent sleeping to recover, but for that hour, it felt good, I felt normal.

Its strange how you can feel so crap yet do something to feel good. The crap dosnt vanish of course, but for a moment its not at the forefront of your mind. Its not defing you and who you are and what you are able to do. I dont ever want to be defined by an illness, but it gets so hard not to be sometimes.

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