5.13.2011

No words...

Thank you for all your fantastic messages of support after false alarms 6 and 7, it really does mean so much to have so many people wishing me well. I have had several emails from blog readers too which made a huge difference in the dark days immediately after the call; they have all been read and I will am to reply to everyone but probably not for a few weeks. Apologies for the delay.

After a week I am beginning to feel more "normal" although normal still means crap! I was worse than usual after the last call, feeling and being very sick, dizzy and unsteady on my feet, shaking, spending even more time than usual in bed, unable to think or concentrate and my lungs felt more unbearably sore, tight and overwhelmingly tired than they usually do. I had old blood in my sputum from where I had over done things and even silly things like my skin and teeth felt sore and sensitive.
Usually after a call I can see a gradual improvement day by day but now there isn't actually much to improve to. Everything listed above is an almost daily occurance at my current state of health, the call just exacerbated it all. I don't expect to feel "better" anymore.

It's difficult to explain how I'm feeling at the moment, but frustrated and sad is a good starting point. I feel like my whole life is in catch 22 mode. While my lung function is remaining the same, it is as my dr put it recently "consistently awful". At around 18% of normal. What is more frustrating is how I actually feel and trying to express it to others. In July I will have been waiting 4 years for a transplant that still hasn't materialised. If I look back on this blog I know that I would see the same old phrases repeated over and over again, "difficult", "unbearable" and "struggling" to name a few. It feels almost trite to use them now. 4 years have passed but no one has invented new words to capture the increasing "struggle" of those early days compared to now. Struggle cannot begin to touch on how much worse things are for me on a daily basis, by using the same old words I feel like I'm cheapening the immense battle life has become, compared to when I started out on the list. Everyday is so bloody gut wrenchingly difficult to get through. My world literally consists of my bedroom's four walls. I get downstairs maybe once a week, and haven't been in my garden since at least last May. I have been outside of the house about 7 times this year and 4 of those have been to hospital visits. Some days I manage to keep smiling but other days I just despair that life will never get better than this. There are no guarantees it ever will. I am desperate to spread the word about donation, to enjoy my life while I can, to impress upon my care teams the extent to which my illness now controls my every move and to finally be able to move on with my life in a way that isn't 'settling', but I am limited in every way.

Four years is a huge amount of time to live in a state of extreme ill health, fighting through each day just to get to the next. The treatment is neverending and at times takes me over, dragging myself through each day. I am very lucky to not have to spend a lot of time in hospital but that doesn't mean I'm doing ok at home. It simply means that the hospital have nothing left to offer me to in order to improve my quality of life. I'm on the maximum of meds that will help but lung damage cannot be fixed. I don't suffer with infections very often but if I did in some ways I would at least feel that there was a chance that when the right anti-biotics were used I would feel better. When I tell my team that I can't breathe and am able to do less and less, they have nothing to say to me. I have given up saying "I can't cope like this" because no one is going to step in and say "this might improve things for a time", there is no let up, and saying "I've had enough of this" falls on deaf ears. Sometime I wonder if being at home actually hinders my medical teams understanding of how ill I am, if they saw my struggle would they understand it better? Then again why waste days in hospital when we all know IV's won't help the problem. I often feel that people don't realise how bad things have become because using the same old words doesn't do it justice. There are so few people who have waited this long how can they possibly understand anyway?

I only know one person who waited this long for a transplant and when she got one she was too weak to recover. It is a scary and sobering thought. It is extremely difficult to see others getting transplanted while I continue to wait. It's not that I begrudge them but I wish I could be in the same position. Seeing other people get the very thing you wish for most is heartbreaking, some of them have been assessed, listed and transplanted in the time I have waited while I still wait in the strating blocks.

4 years is ages and ages, days and days gone past. It's the length of time my nephew has been alive, in his lifetime he has never had the chance to run around and play with me, never known me when I wasn't sick. It's the length of time it would have taken to get a degree or even an MA if I was up to studying fulltime like my friends. It's countless holidays, days out, missed oppportunities, happy memories, walks along the street, meetings with friends or meals out, if only I had been able to do any of these things. Instead it's been 4 years on hold. 4 years spent feeling the worst I have ever felt. 4 years watching my life get smaller and smaller and watching my CF get bigger. It's 4 years of feeling scared, and watching my family go through hell. 4 years of wondering what might have been. 4 years of not wanting to admit that if a transplant hasn't happened yet maybe it won't ever come, and if it doesn't then what was all this fighting for. 4 years of worrying you have been or will be forgotten, relying on other people to make your life better and having to relinquish all control.

It's also 4 years I wouldn't have been without, despite all of the above. There have been many good times and amazing people that have touched our lives in the deepest of ways. It's 4 years that I know I wouldn't have seen but for a gritty determination and an inbuilt overiding force that desperately wants the chance to live and not simply exsist. I am desperate for my chance at life.

Please pass this on to those you know and encourage them to consider organ donation, the link is at the top of the page. This week is Cystic Fibrosis awareness week, by raising awareness we can stop the others having to suffer in the way that I am now. Thank you x

25 comments:

  1. Tor, is does suck, but all thoses years have not been wasted. You have gained strength, friend ans appreciation. Your call is coming soon and when it does, you can bask in the glory of having made the last few years.

    ReplyDelete
  2. I don't know you personally Tor. Each and every day I read your blog in the hope that I am going to see the words you've had your call and it's going ahead. Sending hugs and hoping your call comes very very soon xxx

    ReplyDelete
  3. I really don't know what to say Tor but wanted to leave you a commment to let you know that I've read your latest update and am thinking of you.

    Lots of love.
    Moll x x

    ReplyDelete
  4. You are an amazingly strong person. Keep it up. Your call will come. I only wish I could take some of your bad days for you. Rick.

    ReplyDelete
  5. Thank you so much for sharing your words.. You are obviously so determined. And remember there always has to be someone first to have waited so long....and survive and live an amazing life! I will look forward to hearing it is you ...very best wishes to you and your family,xx

    ReplyDelete
  6. Hi victoria, l have been told about your need for a transplant via tony salmon a old friend, my heart like others is that call for you. you are in my thoughts & prayers. you are a figter - keep strong in spirit brave courageous young lady lots love j xxx

    ReplyDelete
  7. Hope you will get a positive match,very very soon Our daughter was lucky her husband was able to donate a kidney for her You are in my thoughts

    ReplyDelete
  8. Hello Tor, I am always keeping you in my thoughts and prayers xxx

    ReplyDelete
  9. Hiya hunni, just to let you know you are always in our thoughts and prayers. x x x

    ReplyDelete
  10. I'm keeping you in my thoughts, for what its worth. I know you're heartbroken, I hope it happens soon.

    ReplyDelete
  11. Keep faith in the fact that things will change for the better soon.Because of the preparation that you have had in these last years you will be strong and able to cope with the changes a transplant will bring.
    You say the old phrases "difficult", "unbearable" and "struggling" litter your old posts. You have struggled, it is difficult but you have borne it with dignity and I respect you for it.Hold on for that call that must come!There is a world outside your room willing you to succeed in your quest for a new life.
    You say " There have been many good times and amazing people that have touched our lives in the deepest of ways. It's 4 years that I know I wouldn't have seen but for a gritty determination" use that determination,keep at it and I know things will change :) respect @UKCybernaut

    ReplyDelete
  12. You're right, there are no words. I have been really poorly for 2 years and on the transplant list for 1 year with no calls so far. I feel forgotten and think I feel just the same as you. Then I realise I have absolutely no idea the extent of how you feel. I cannot imagine waiting another 2 or 3 years more and feel for you so much. I want you to get your call as much as I want mine. You are so determined and strong, I do believe it will come and hopefully very soon. You are an absolute inspiration to me.
    Love Kerry xxx

    ReplyDelete
  13. You have touched my heart with your words, Life can be so unfair at times. I am hoping and praying a donor will be found very soon for you. Stay strong and positive. Lots of love xxx

    ReplyDelete
  14. Yes,It is difficult.Yes it is a struggle,but few people could have got this far with the dignity that you show.Been following your posts since told I would need lung transplant.Keep going.It will happen.My thoughts are with you and your family.Bill

    ReplyDelete
  15. Reading this made me want to cry for you. It brought back so many memories for me. I had my lung transplant 3 years ago & waited 2 years for mine. I got mine after 11 calls, most of the calls in the last 3 months. I spent my days pretty much as you do, just existing not living. Please don't give up hope you deserve new lungs & you will get them. I look forward to hearing the good news soon. X

    ReplyDelete
  16. I hope you don't mind, but I linked to your blog in my most recent fundraising blog entry. With limited experiences so far of CF, I can't really get across how important increasing the awareness of funding towards CF really is.

    There isn't much I can say to make you feel better, so I'll just tell you that positive thoughts are coming your way, and I wish you all the best. I'm following your blog too :)

    ReplyDelete
  17. Tor, honey, I can't make it better, and I don't have words to placate, but I have read and heard you, and I hold you in my thoughts and prayers. I wish I could do or say something of use...

    ReplyDelete
  18. Tor keep fighting for everyday. Your words capture your situation so powerfully. I was also in your position 3 years ago and spent over 18months on a non-invasive ventilator 24 hours a day. I just hanged on to the hope my life would be transformed and my chance would come. I was very weak and struggled in ITU after my transplant, against all the odds I pulled through and am doing well. The journey maybe tough, but hang in there as dreams can come true. My thoughts are with you and I hope you get your call soon Xxxx

    ReplyDelete
  19. This is straight from the heart and makes me feel so sad for you. I know that feeling of trying to explain to others. Sometimes I'd shut down because I was bored of repeating myself and getting breathless. People would say why are you waiting so long? If it was that urgent they'd do it now wouldn't they? I mean, how I managed these questions is beyond me when I look back. It's so hard at times. I think you continuing to study is credit to your personality and determination to carry on. Remember too in the last four years you've become a public speaker, an ambassador...you rock girl! Keep yourself as well as you can poppet xxxx

    ReplyDelete
  20. Tor, you ARE making a diffrence today with the life you are living. At license renewal time the question of organ donation was an easy one for me to answer 'yes' to, but only because of the way YOU are living your life. I hope and pray that you get the change in your life you so desperately deserve, but understand that you are making a difference right now. I'm sure you've convinced countless others to make the choice to be an organ donor. Your life has and will continue to impact the lives of others in a very meaningful way. Keep up the fight!

    ReplyDelete
  21. I have only been following you on fb and your blog for a year or so but in that time your strength and determination has shone through.I cant begin to imagine what you are going through and it makes my poor health pale into insignificance. Next month I am going to Lourdes and I will light a candle for you in the grotto. meanwhile you are certainly very much in my thoughts and prayers and that your sucessful call comes very soon xxxx

    ReplyDelete
  22. I just want to say, and I really mean this, that it's an honor for me to be able to send you a message. I live in the US and discovered your blog through the bbc news article. I check your blog once a month or so. I hope for good news very soon for you.

    ReplyDelete
  23. Hi Tor,

    you're an inspiration to me. I check your blog regularly and am hoping your transpplant comes through soon as you really deserve the chance of a normal life.

    I've been wondering, do you get any professional emotional support, like a councellor or psychologist? I know they can't improve your physical condition, but you're left alone with this enormous burden and I can't help feeling they'd be able to provide some coping strategies - or even just an ear to bend!
    xx

    ReplyDelete
  24. Hi
    My name is Jenna and I came across your site. U are one amazing, strong person. U are an inspirational hero. I was born with a rare life threatening disease, and I have 12 other medical conditions. I live daily in constant pain and have never seen a pain free day in my life. I also have developmental delays, been in and out of hospitals, on many medications, and have had 29 operations. I get sad, depressed and frustrated lots too. It's hard when you are sick all your life and there is no cure. I hope that one day there will be a cure for you, like getting a transplant. I will be thinking of you, and hopping the best for you. Keep on fighting untill u can, and never ever give up! U are a fighter.
    www.miraclechamp.webs.com

    ReplyDelete

CUSTOM BLOG DESIGN BY PRETTYWILDTHINGS