Monday, April 22, 2013


My mind is in a mushy phase and I am not sure if I can explain it.

Things right now are not ideal. I think everyone knows that. Right now, I am spaced out and tired. My pain issues seem to go in an inflammatory patter. As if my body says ouchie ouchie lots and I have a lot of pain. Then gradually, it lessened  it forgets about the pain and forgets to remind me. I get a few days of no pain. Then one night, I will wake in agony again, as if my body has decided to say, oh you do know that pain is still there right? Let me show you where and I will be as loud as I can so you cant miss it.

right now, I am in the midst of one of these flare ups. Which means that I am dosing myself up on numerous meds including my morphine. You see when it hits, I have to keep on top of it, every 4 hours or so to take more. Whereas just days before, I wasnt taking anything.

It is frustrating, but the most annoying part is how the meds make me feel. They suck away the last of my energy, they make me tired beyond belief. But heres the funny part, I cant sleep. I will close my eye, and begin to drift off and then I will stop, stuck in that place for hours between asleep and awake.

Then comes the itching. I take piriton and such, yet I scratch so  much people must think I have fleas. Scratching feels good though. The sensation of scratching an itch is a wonderful feeling of relief and pleasure. But the more you scratch, the less pleasure, as your skin becomes raw and even my finger joints swell from the movement.

And the added side effects, the long term disadvantage to all the surgery, is that the pain gets worse. Operations have complications. Where as my pain at one point was limited to my throat, it is now also between my ribs and in my thigh. Today, I almost cried while standing in a clothes shop. It felt like someone was stabbing me in my leg. Its been numb for months, kinda like when you spend to long moving stuff in the freezer. But this was differnt, this was sharp. I just hope that it is the graft growing, rather than dying.

But do I really hope that?

My first answer would be of course I do.
But on reflection, the risk of making things worse is high.
I have had this trach in for over a year now. The wound has healed. The tube is steady. And I cant help but think back to last year, where the tub get drifting upwards, leaking lots of fluids and causing so much irritation that every part of me ached from coughing.

I know that the trach will be coming out, then going back in after the surgery and hopefully out again a month later. I hate dealing with a new trach.

Of course, to add to that, is the possibility of more complications. Of ending up worse than I am now.

Of course, it is a risk I will take, but I dont go into it blindly. I know the potential for reprecussions. I know the risks. And that is why, I stand my ground and say, this is the last big op I will risk. Once the trach is out after this surgery, My wishes will be made clear and documented.

Its not that I am being negative.
I guess i just know, deep down, that I can be an awsome person. I can do amazing things for myself and others. But I cant do it with this leash around my neck. It is holding me back and there is only so much of that I can take before I go crazy.

I wasnt born to be a hermit. To talk to virtually no one. I shouldnt be terrfied to go to sleep, nor stay up till the early hours of the morning trying to avoid sleep and thinking. Yet I am and to add tot he comical features of that, I am also terrfied of the day time. Of the work I need to do, the tasks to complete, the potential for things to go wrong.

Its like I am scared to sleep yet dont want to face waking. So I end up not really doing either and getting nowhere because of it.

I know my fears are getting out of control again. I know my anxiety is rising and I know my risks are too. Choking in the middle of a shop, whilst people stare from a distance. The worried looks, from both the passers by and whoever I am with. Tears running down my face from the pressure of clearing my throat. To finally clear it and feel totoally overwhelemed as a wave of exhaustion hits.

To have to put so much force on my narrowed airway, to get the crap out of lungs, that I often bring up my stomach contents at the same time. I have been on meds for over a 18 months, to try to prevent coughing up blood, but little controls it. I barely even notice it these days, just another chronic to add tot he list. Since when did blood become just one of those things, like breaking a nail or stubbing a toe.

My body is in such disreagard. My lips lacking colour, my nails snapping or falling off completly, my skin flacking off and my memory being so poor that I am able to watch a film one week and rewatch it the following week not recalling any of it.

and yet I know I am lucky and I am oh so greatful to be here. I know that there are people in much worse condition than me. And yet it is the fear that holds me back. It is the fear thatbrings the toneof everything down. Now if i could just sort out this whole sleep mess crap out instead of falling asleep in the most odd places and positions, then perhaps I can deal with some of these mushy brains and ideas and memory.

I am thankful. For so so much.
For the chance, for the hope, for the time.
But I am at a cross road, balanced on a needle tip, having everything on one side and absloutly nothing on the other side. spining, spining, round and round and out of control. Where will it stop, nobody knows. damage control, traffic control. permission to land.

Sleep, the enemy and the best friend as my heart pounds away, eager to see how tonight will end and the next begin.

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