Big step backwards

When I was first discharged from hospital after my transplant, I had to basically learn to walk again. Most of my muscles had wasted away with lying still and not moving for 3 months. After 3 months on a ventilator, even breathing on my own seemed a huge task. But once I started getting about, I swore that I would not go back to being like that. Spending most my time in a wheelchair, then on to a walker, upgrading to crutches. It was a long task, it took months, well more so years as I kept hitting set backs, like needing further surgery. But I did it.

When I was in ICU last month, as soon as I was awake, I started doing all my old physio exercises I could remember so that I didnt seize up. Within hours of getting the breathing tube out, I was sat up and sat out by the next day.

But today, was just to tiring. It was a simple shop, we only had 40 minutes till closing time. I ran my nebs sitting in the car as I was rattling without them. But walking from the car to the shop entrance I was gasping. I couldnt do it. So I agreed to use a wheelchair. This is a huge step back. It feels like I have done everything I can to avoid this, yet have ended up here just the same. Why did I bother to work for it?

The worst part is knowing that things might not get better. Sure I can go for this permeant tracheostomy, but the one the surgeon wants to put in will be a closed system so I still breathe through my mouth as opposed to my neck. But my throat is still going to be narrow, so I doubt it will make much difference. I need to speak to my surgeon, but I dont see him for another week. Wish it was tomorrow I was seeing him, but he is away. A week seems like a long time when every breath hurts.

Mum asked me what I wanted for christmas, I said jokingly a new throat please. She welled up and said if she could she would have by now. She tried talking to me about this trachy the other day but again she kept welling up. I couldnt discuss it.

In other news, I am being referred to a cardiologist. After the GP doubling my blood pressure meds, it hasnt even started to come down and she dosnt want to take chances while its so high. So theres someone else I have to go see. Dont know when thats going to come through. Feel like I am falling apart.

And this has taken twice as long to type. stupid tears. I wish I had the strength that others seem to have. The type that fight on bravely and courageously instead of being a whiner like me. Oh what I would give right now to paint a happy face on things. But its hard enough keeping that face there infront of family and college people, let alone when im alone.