Tuesday, 3 May 2011

Smiling because thats what I do

How am I feeling? I don't really know what to say, I wish I could say everything was alot better and that I felt alot happier and less stressed, that I'm not struggling financially, but I am. Every time I think I'm getting somewhere, I feel another set back.

I feel pretty ill, I'm struggling more and more each day and the pain is becoming an issue again. My MST (long lasting morphine) isn't cutting it. I have this paralyzed feeling in my right lung and deep throbbing ache, which is new and unpleasant. My nurse asked me on the phone if I wanted to come back in, I haven't quite hit rock bottom yet, but also see no reason to go back in. All the treatment I have in hospital I am now receiving at home and unless I want to start using my bi-pap at night then there is no other reason to go in.

Financially, I'm very broke and I did think things were sorting there selves out. But now it just seems to be getting worse and worse, I won't bore you with the logistics of it, but its pretty bad and its leaving me feeling pretty stressed.

I wish I could wave a magic wand and everything would be sorted, but I know the world doesn't work like that. I hate the fact that I have no good news and everything seems so doom and gloom, but I guess that's because being on the transplant waiting list and being really ill isn't easy its the hardest thing I think I will ever face but I just hope that I will get these new lungs and a sense of perspective on what is important in life and how important it is to live life to the fullest each and every second. Well I suppose Iv already got that, I just hope I get a chance to put it into practice. I also hope out of all this the face of the organ donor register is changed so no one has to wait in uncertainty, I guess that's kind of sounds big headed as if I alone will do that, but I mean out of all the people in my position out there doing the same thing and trying to get people to sign the organ donor register.

Is there anyone who read my blog and still hasn't signed the register? If so why? I would love to know your reasoning, so perhaps I can give you more information and fill in those missing steps to help you make the decision.

Also I'm looking for a free hobby, something that won't cost me a penny but I can fill my time with, I know theres probably not such a thing, but any ideas? I already do card making, but getting a little bored of that one.

I know these posts sound so down at the moment and yes I am, but I'm still smiling, because that's what I do.


  1. Kirstie

    I just started to follow your blog we live a little way from you in Somerset. My 7 yr old Daughter has CF, its heart breaking too watch her some days depressed at such a young age, and asking why her life has to be so bad and if god hates her. I know there are varying degrees of CF Minty my Daughter at this stage has chest infections and we have IV drugs too, admitted last earlier in the year, but we are so lucky compared too you. Keep your chin up,(easy to say I know) Keep praying for a miracle yes that's what I do, and when things seem to be really bad they do get better and keep fighting to get more people on the transplant list because then all of what you have done will not have been done in vain and hopefully one of those people you turn will give you a breath of new life and help you to be free from the suffering that you currently have to go through daily. My oldest Daughter wont go on the transplant list and it cuts right through me with everyone else in the family willing to give other people a chance at life when you no longer can carry on. All the best I will pray for you too Katherine xx

  2. Its not totally free, im afraid, but have you considered jewellery making, its fairly inexpensive(infact i now rarely buy shop jewellery because I know I could make it for a lot less)and its quite addictive.

    Do you knit or sow?It took me a lot of hours, and its far from perfect but i spent last summer making a patchwork quilt, I love it and use it as a kind of cover at my head end of my bed, because i have a metal frame. You can make it out of old clothes and such, thats where a fair bit of mine came from

    Also I think its totally ok to not be smiling and happy all the time-i do the same as you, smile, laugh and joke, because i find it easier than people facing the truth-but it doesnt always work.

  3. I am praying that you get your lungs befoer to long and that you are able to live the life you dream of, and get back to teaching your classes! I have been following your blog for awhile now... I have CF as well, but I have not yet gotten to where you are. I am glad you are able to smile some days. That says alot about who you are (: Thinking of you...

  4. There are not many free hobbies, but if you like cardmaking, what about expanding on part of that? For example, right now, my new favorite thing is watercolors. There are pens called aqua markers (their fairly new) an mixed with some watercolour paper, can give really lovely effects. If ou can draw, but have some stamps and waterproof ink from card making, then these are ideal to begin painting. If you have a shop called the Works near you, then you can get the paper pretty cheap as well.

    Other than that, what about learning something online? During a long hospital stay, I did a few hours each day learning how to photoshop things. Silly things, but having that skill is fun. And you dont have to have photoshop, there are free versions about that do the same thing. And hundreds of sites dedicated to tutorials.

  5. How about getting someone close to do a regular library run for you - you can even get out books about hobbies for ideas

  6. I havent but not because I dont want to but because I don't think I can. Do you know if people who are not allowed to give blood can donate organs? Ive got M.E which is moderate to servere at the moment but has been really dreadful on two occasions. Since November anyone who has or has had M.E has been unable to give blood so I assumed I can't donate organs? I would love to though.

  7. My daughter has cf, shes 19 now & when she was at her worst, on oxegen & very poorly she was on her laptop a lot & we used to watch dvds together or do jigsaws, she had a double lung transplant 4 years ago & shes doing brilliantly its as if she was never ill so i pray that you get your new lungs & are able to live your life to the fullest, we are all organ donors now its a wonderful thing to do, i cant understand why people wont do it, take care of yourself kirstie xx