I really didnt mean to come across that way, I guess more than anything, I was just frustrated at everything. Frustrated and angry. Life as I knew it was changing in ways I swore I would never let it. I was thrown into the world of being a patient at 16, with very little prior experience. But from day one, I was in a world, where I was considered expert on my own body, where I was consulted and taught, things explained and gone over in stages that were easy to learn as I was able to cope with them. The last year was different though. The staff in my hospital were brilliant, they really were, but I was out of their depths, I had all these immunocompromised problems and ENT problems, that they were not used to dealing with. They specialized in Cardio Thoracics and surgery, basic cases, where they would care for wounds and get you mobile to go home. Then my frustration grew as the people who called themselves specialists didnt seem to know what they were doing. I didnt want to live in a fog of maybes and lets see. I hope I have moved past that phase now.
There was also some points to what I read. Mainly about breathlessness. And although, I feel restricted at the moment, its nothing, compared to last year. Last year, I was begining to get breathless just sitting still, least at the moment, its only on movement. But, the restrictions are getting greater. I feel like I am holding out for this appointment tomorrow. If I didnt have it, in the last few days, I think I would have started to seek help pretty quick.
The last few days, I have been charting my peak flows, and I guess I can now see how they are declining as they are now hitting in at about 150.
Things are beginning to get scary once more. Coughing fits that leave me gasping, climbing stairs, that give that panic feeling as I cant get the air into my lungs that they require and getting out of breath moving from one room to the next.
I dont know what will happen next. I assume they will probably try some scopes and laser, but there is a lot of things I may have to face up to. Realities are already beginning to sink in. Trying gentle to approach the subject with mum, that I may need more surgery and possibly another addmittence. But she was clued up more than I gave her credit. She said its like last time again isnt it. She also said that she thinks I will end up with the trach back in. Obviously I hope this dosnt happen, but I need to keep it in mind that it might happen.
Mum has been great, I have to give her that. She hasnt been on my back about chores, not even asking me to do tea dishes or help with tea. Usually she tries to get me out the house everyday even if its only for 30 mins, but deep down she knows I am not up to it. She is offering me the choices to stay in, letting me sleep late in bed and generally not complaining at me resting a lot.
I guess there are times to push and times to rest. When I first got out of hospital I pushed and enjoyed every minute of it. Now, I find I am needing my rest again.
Lets see what tomorrow holds.
Oh and my hair is redyed! yay.
Bright!! yay. Though the pic dosnt do it justice and I will be trimming my fringe and such later.