Saturday, December 07, 2013

going slightly crazy.

The last month has been one of the longest I have had to go through in so long. I have scraped the bottom of where I stand, faced a few truths and evaluated where I things are.

I am home and sleeping in my own bed, for what feels like the first time in months. In truth its only been about 6 weeks, but the fact that 6 weeks isnt a long time to be away for, shows where things stand.

After hoping to be discharged from London, I knocked heads for the first time ever with my consultant. I was feeling pretty grim, my mood had bottomed out and for the first time ever, I actully begged my parents to come visit because I just couldnt stand my own company any longer. I mean when have I ever been clingy. Now is not an ideal time to start.

The consultant said there was no way he could discharge me, as my airway was a mess and without imediate treatment, I was in danger of dropping my oxygen levels again. there are only so many close calls you can go through before your luck runs out. I couldnt stay so far away from home any longer though. After about 40 minutes of negotiating, I talked him into letting me be transfered to a hospital closer to home for IV antibiotics and I will be readdmitted on Monday for surgery.

I used to deal with these things, these complications, like they were nothing. Take them in my stride and make the most of what I can. But these days I seem to be a shadow of my former self. This year I have spent more time in hospital than I have at home and the cracks are begining to show.

Mentally I am struggeling, and what terrfies me, is ending back up in a deep depression like I had a few years back. I just bearly made through the last depression, and only then due to friends and hospitalisation. Now, things are much more complex and to lose control, however briefly, could be much more disastrous. These days, I have much more access to harmful things like medication and its not uncommon for me to be home with direct venous access to my heart. I dont want to get tot he phase where I no longer care, to be at that point, would be too late.

But its not just mentally. Physically, my body is no longer able to keep up. When I first started treatment, I used to be able to travel to London, go to theatre and return all in the same day, now it is closer to 5 days from home for the same thing. I have many more complications, much more infections, more chance of things like clots.

So after this admission, the aim is to take 6 months off from treatment. I am not niave, I know what that can mean. I will get more breathless, I will lose my voice, the infections will get worse and my airway will scar up. After 6 months I have agreed to review things, but chances are nothing is going to have changed and so I dont think we will restart treatment. Delaying the inevitable seems pointless.

I used to compare myself with others, used to think, I cant be that ill. Ill people have lots of A&E trips, lots of rides in ambulances and lots of complications. I never had them. But this year, things have changed a lot. The amount of trips I have done this year via ambulance is just silly and thats without counting the ones I have talked myself out of. Its at the point now, where A&E staff actully remember me and the equipment I need to keep close to home has doubled.

So I am looking forward to some time off. Some time to regroup, to heal. to find myself and evaluate at this point, what I want to achieve. I always beleived that I could be anything and do anything that I put my mind to, but even that now seems to far away.

So I am taking a step back. Seeing what things take my intrest once again. Finding myself and rebuilding what is important. It is the only way i know at this point to save myself. But what that will mean long term, may not be as viable with a long and healthy life as I may have orginally hoped.

To say that I am not sad, would be a lie, but I know that I went with the right options from the start. I still lie my money with my current surgeon for one day fixing the issues I have and I am still part of the research comitte that is looking at treatment for tracheal issues. I play a fairly important role, on a trial streering comittee at present, which is something that I am very proud of, given that I dont actully hold any qualifications.

But more of that some other day. Right now, its nebs and bed, as my airway is still misbehaving, I am needing to sleep lots.

1 comment:

  1. Hi there, I was just reading up on a few of your posts and had a quick question about your blog. I was hoping you could email me back when you get the chance~