Thoughtfulness

Tonight my feature for ITV westcountry will be aired. It has interviews with my nurse and doctor and what i believe is a frank interview from myself. For those of you who can't tune in, I will put the video on here. I hope it includes everything, I tryed to be as honest as possible and hope i didn't erm and errr to much lol. Let me know what you think if you see it.

I'm also doing a interview with BBC radio Devon in the next couple of weeks.

Health wise, I'm not great, but then I'm not really sure when the last time I had a good day was. I'm always compromising something I planned to do, or cutting back. I have a terrible cold and its left me gasping for breath and having to sleep upright which is not comfortable.

The other day i read something brilliant.click to find out about  Spoons. I explained this theory to my physio and we talked about how I use my spoons, Sometimes I have to decide on weather to shower and then rest or not shower and teach lessons, ect. I find I'm often the sort of person that will trade in spoons just so I can have my few hours of normality teaching. But we did discuss the fact that one day I may not be able to teach at all whether it is just sitting there and would I be able to give that up? Iv been so determined through everything to maintain my lessons and keep my own income, but I know its coming to the fact that maybe I will not be able to do them at all, when my day is only left with a few spoons and perhaps I need to spend them enjoying a few simple things. I hope it won't come to that and that with each deterioration I can hold on to as much of it as possible. Its hard to thing that the busness I took my time and care to build up, is getting smaller and smaller and seems to be slowly closing in on its self. I worry that If i get a transplant that there will be nothing left of the business I took my time to build up and that I will have to start all over again. But then again, post transplant I plan to have a bit of time just for me, where I can enjoy my fiance, who will then be my husband and time with my pup. Catching up on holidays we have missed out and time alone together just enjoying eachothers company rather than having him having to look after me or worry that im gettting to tired.

I sit here under the realisation that my world is dramaticly getting smaller, I feel the deteriation in my illness is just to rapid for me sometimes and feel that if i were to blink to long i would open my eyes and everything will have dissapeared. Its a sad and scary thought, that all you knew and know is changing, that you simply cannot hold on. Me and my lessons is me holding on so tightly and in a way holding on to the world and my life in which i spent so much time to build, to get to where i am. I guess the only way do deal with that is for me to create new goals, new visions, things to buissy myself with, raising awarness, I am the sort of person that likes to feel useful.

Today seems to be a very thoughtful day, I have also been thinking about my second transplant appointment coming up, When I first went I was worried they would view me as to well, they told me i wasn't and im now under the realisation that im not and neither could they think that, but I have a new worry, for me there was always only 2 outcomes I was to well or they'de put me on the list. But I never thought for a second what if something else is wrong, what if I go for these tests on the 14th and they find out some other reason not to put me on the transplant list. This thought has invaded my mind and scared me to the bone. What would I do then? Would i simply have to admit defeat and say CF has won, when there is no way out but to sit and let CF take over my body. I know that without a transplant I will eventually die, but if I wasn't to be put on the list, if that chance was taken away from me. More If the hope was taken away, that I will be saved from this? I don't know how I could deal with that. I know I could go on the transplant list and never recieve a transplant and although that would anger and upset me, I would always have hope, hope that that call would come and that would get me through, even if it never did. But if i wasn't on the list there would be nothing. No hope, no nothing. Just waiting, waiting for the infection that could kill me and the painful deteriation that I know will take my life.

I MUST GET ON THAT LIST I MUST GET NEW LUNGS

I want to leave you with a picture, me and kia. My puppy Who is the sweetest pup ever and loves to hug, lick and let me know she loves me, she even knows when im not well and trys to help me.