Sunday, June 26, 2011

cest la vie

lalala if I ignore things they will go away right?

That is what I have been telling  myself for a while.
Or maybe not.

My breathing seems to be getting slowly tighter. I find myself panting at times, when I am hardly doing anything and my resting heart rate has jumped back up to 110. Im  still doing well, I mean, I have no tubes in and I can talk, mostly in sentences. But the exhaustion of keeping up is starting to take its toll. I have made a plan, that I am trying to stick to. If I go out one day, then the following day is spent inside not doing anything too strenous. So far so good. Though my room looks a tip, but that is mostly because our washing machine decided that it didnt want to work anymore. Actully thats a lie. The washer is kept in the garage, but the soap drawer needed cleaning. Instead of taking it out and doing this, mum instead gave it a nice clean with the hose pipe. It worked, as the drawer is now sparkly and no longer clogged. However, it will remain clean, as she has blown the circuit board inside the washer.

Yesterday I helped with the shopping came home and slept for 3 hours, had tea, then went to bed again. Today, I got up at lunchtime and spent the majority of the rest of the day running nebs, apart from the few hours I have just sat on the floor with some craft bits to play with. When I woke this morning, after spendng the night on my humdifier, I couldnt stop coughing, yet could not actully move anything off my chest as it was too thick.

This is where I struggle. I seem to run near constant infections, but when they get bad, it is hard getting treatment. For some odd reason, no matter how ill I am, my chest does make auduiable rattles, not even to doctors. So if anyone examines me, they say, oh your chest is clear, even when I have pneumonia and my temp is through the roof and cultures come back growing all kinds. Of course, due to being a liver transplant patient, doctors are already reluctant to prescribe anything stronger than a multivit.

But then, I have run so many antibioitcs in the past year or so, that I have developed an immunity to them. So for the time being, I shall wait this one out. I have 2 weeks to last. Though, I am hoping that this new chest dude may be able to give me some answers, or at least that he will request cultures, as right now, that could be fun.

In other news, things are getting tough again for my mum. Whereas I have learnt my limits and know that if I go over them, I will regrette them, she still seems to want to push on, under the guise of 'oh well we needed xyz' When there was no rush. And then she becomes to exhausted to function.

But, her hair has now started to come out in handfuls. Its a very sensetive subject, which will set her off into floods of tears. So today we have played with headscarfs, which I dont think are too bad, but each to their own I guess. Im trying not to show any emotion to the hair loss, its jsut one of those things, but I dont like to see it effecting her in such a way. If only I could have it instead, would make things easier.

cest la vie.

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