Monday, August 13, 2012


Why is it, that no matter how much I organise my wires, leads and tubes, they always manage to get tangled.
I have a pretty good system of the bits I need close to my bed, although the floor where the machines have to be kept looks a little more messy. My suction machine, is heavy, so has to be based on the floor, my humdifer has to be way below the level of my neck when I lie in bed, incase any water collects, to stop it pouring into my lungs. So thats 2 machines taking up floor space. But then there is my neb, which is huge, but cant be on the floor as the filters drawing air in would get clogged with dust. But, near my bed, I have my cords set like this.

Ignore all the junk. The humidifer has to be stored up high, to allow it to drain and dry, which is why it gets the top peg. But of a night, when I set it up, I always get go to connect up and find the wire has to no give. When I look down, there it is wrapped in pretty knots and braids with the other two cords.

On the news of my rash, it seems to have gone, except in a few very small patches. I wish I could say I was feeling better, but last night, was a hard night. Everytime I drifted off, I started coughing and choking myself awake. The coughing then annoyed my stomach and so I was in and out the loo and not much sleep occured.

Today has been chilled out day, with lots of sitting still, not even the energy really to make things. It gives me to much time to think. I have been reading the Hunger Games as distraction, but even that makes me over think. The rest of this entry is going to be ramble, so I suggest tunning out now.

I will try not to give away things out the book.
A lot of the time, all the characters, expect and accept the ones who have been through a bad experince, to have trouble dealing with it. Now what they have been through in the book, is a huge thing and I am not comparing mine to that, but there is so much of it I relate to. When you want to hold everything together to prove that you can, but sometimes its just out of your control. To be given the space in a way to be allowed to go crazy and come back from it. And I guess, for others to notice when you do go crazy and instead of judge, help and accept.

Why oh why does this not come out as elquontley as it does when it plays in my head.

I dont know. I know a lot of my mind is messed up, I understand why and I do accept it. Its kind of funny, that some of the worst memories I have, that set me back the most are often from ICU. That in itself is understandable. When there is so much uncertainty, so many treatments and procedures, yet death is never far away, be it from yourself or those in similer postions around the room. Its not unusuall to hear the alarms of someone machines going off, and know exactly what is about to happen. To watch, from a distance as people gather to sort out the alarms and keep the person there. You can escape it in ICU, the patients are at their most vulnerable and it takes so much work to keep each one going. more like an art than a science. In a place where all patients need the same sort of care, they all need to be seen and heard. And as a patient, you can usually hear and see most of what goes on.

Its worse again when you hear the alarms go off close to home, when you know they are your alarms. When you feel things that you know are not right. You try not to panic, to keep it together, but often it is those who rush to your side, that give the game away. The look on their faces as they stare at the monitors, each forming their plan, and you not knowing your fate. Not knowing if this scary bump will be the last, or if it will set you back weeks in your progress, or if it will just mean more pain, more treatments, more time.

Coming close to death, is something that I think that has to change you. It would be impossible to go through something like that and not come out feeling different. Maybe for the better, maybe for the worse, but change they will, and it is a change that will always effect you.

But, there is something far worse than ICU, a time and space, where you must pass. A place where you learn where your own skin is and how to be comfortable in it once again.That in itself can vary in length from a few hours to years. The place, the knowhere land, where you are well enough to not need subjecting to hospital treatment, yet in the place where you are not well enough to get on with things.That place that you never know what will come next, you dont know how long you will stop there or how you will get out. Away from the countinous beep of the machines next to you, reassuring you that things are fine.

In this place, nothing is set in stone. Things can change at a moments notice. Noone knows what to expect. Your mind tricks you, it takes time to remember how things should be. This waiting land, is harder than anything else I have ever experinced. Not knowing what are good signs and what are bad. Not knowing if things will get better or worse. Having to fight on, with no rhyme or reason. Just hoping each day will be better than the next.  This is where it is hardest. This, is what my new nightmares are made of. Stuck in Limbo. No way in, no way out.

This, is where crazy makes itself known. And your true test, comes to how well you cope with crazy, be it running away screaming, or embracing it will arms wide open. It will always be a test, one I hope I am able to maintain a good result in.

No comments:

Post a Comment