4.08.2012

happily ever after....?

This was supposed to be a a post about whats been going on since I got home from hospital, detailing the ups and downs of recovery and finally catching my blog up to present time (it's really difficult to write about things a while after they've happened). Instead though, I find myself in desperate need of an outlet for a tummult of emotions and feelings that seem to have plagued me since transplant, and although it will be a very difficult blog to write I think it can only be cathartic to get it down on the page instead of having it eat away inside of me.

The reason it is particularly hard to write is that there is a general consensus that things must be perfect for me now I've had my transplant, after all my dreams came true and the thing I needed so very badly thankfully arrived in time. I can never express how grateful I am to my donor and their family who at a terrible, heart wrenching time made the decision to give me new life and save my family from the unbearable agony of losing a child/sister. However, that doesn't mean to say that there aren't still issues and problems to deal with post transplant, just different ones.

For most people the breakdown of a relationship or a change of career is a big change, some would say often a traumatic change and while that can often lead to positive things is still scary and hard at the time. Now try to imagine this change happening to every sector of your life all at once, nothing is certain anymore, nothing is familiar anymore, everything you knew has all but disappeared; this is the enormity of transplant. And although its hard to admit, I'm not coping that well with it.

Physically a lot has changed. Breathing obviously being the biggest. My whole body works in a different way, feels differently and its learning how to adapt to that. It's getting used to no more oxygen, wheelchairs, not being sick all the time, being able to do more, having different medicines and the effects they produce; positive changes yes but still different from anything I have ever known. It is hard for people who haven't been there to understand but for the last 4 years (and many before that to a lesser extent) every minute of my time was devoted to surviving until the call came, you didn't think you just auto piloted doing everything you could to keep going. Fighting every second for survivial. Suddenly thats gone completely from your life. What's left? I don't have a job, or a partner, I don't have many friends or experiences to build on because for years I haven't been able to do any of those things that together create an identity and a life. At 24 when most people I know are married, or in a long term realtionship, with a circle of friends, at the start of their career or at least qualified to do what they want to do; I have stayed where I was 5 years ago.

Over the years as much as I tried to avoid it CF became a large part of my identity, all I've ever really known has been being the "ill girl". Without that I don't know who I am. There will be people that can't understand this or think I'm ungrateful but sometimes I think I was in a way more content then because I knew exactly who I was and my role. Serious illness knocks your confidence, it eats away until you feel as though you have nothing of value left to give. I'm a shy person anyway, but add to that feeling like you have nothing in common with 99% of people, only having medical stories to dazzle with and feeling like the odd one out and it doesn't make socialising very easy. In fact it makes it absolutlely terrifying. One of my transplant team told me that physically I wasn't even in the stadium, let alone on the starting blocks of getting back to normal physically because I was so far behind normal people and the same applies to mental and emotional strength too. Everyone else has moved on with their lives while I've been waiting to start mine, left behind.

To the feelings of lost identity, add huge physical changes looks wise too. My shape has changed, I have huge scars from the operation and chest drains, I have bruises from my injections each day, multiple expanses of stretch marks and my beautiful long hair that has always been my trademark, is now falling out at an alarming rate due to my new drugs, looking thin and dull. Not big things in themselves but all part of the feelings of being completely lost and not knowing where to begin looking for myself. I am proud of my scars they are war wounds to prove what I have been through but its still hard to accept. Will anyone ever find me physically attractive? Most women worry about the size of their hips/bum/boobs not the whacking great scars accross their chest. Not feeling attractive in turn doesn't really help with the whole confidence issue either.Also inevitably when you get close to someone at some point you have to explain about transplant, always an awkward moment, I mean how do you bring that up? Almost evryone post transplant has somethting to build on, whether thats a partner, friends or job but at the moment I just feel completely empty and confused with nothing to build on.

There is also a lot to process. In the last year to 6 months I have gone from dying to living. I have gone through a major operation, spent time in ICU, been under the care of a hospice, been asked if I'd thought where I would want to die if the worst happened, been told I might not make it past Christmas and begun the greulling journey of getting back from terminal status to full health. I can't say I have even begun to process most of these things and they themselves feel very raw and numb. I didn't deal with them at the time, just found a way to get through them but now its almost like a form of post traumatic stress.

I'm caught between two worlds, not quite the sick girl of 6 months ago but not a normal person without illness either. Transplant is not a cure and there is always the possibility and fear that things will go wrong. For many post transplant the worry of things going wrong is a very real fear, it lessens with time but never completely leaves you. I know people who have been unfortunate enough to suffer complications some treatable some sadly not, its like a lottery where you don't want your number to be called but are painfully aware it could be. There is also a thing known as survivors guilt, where you feel guilty to still be here/ or doing well when so many eg my donor, transplant friends didn't make it. You wonder why them and not me? It also adds to the feelings of needing to be worthy of this new life, you often feel like you aren't living up to other peoples expectations (or your own) and maybe you don't deserve this second chance. Its a constant yo-yoing between wanting to rush out and do everything you've missed out on, trying to recouperate, trying to work through and come to terms with emotional turmoil and fear of putting yourself out there.

I am finding it particularly hard lately. I want to do things but at the same time they scare me. I want to try new things but have no one to share them with. I feel very alone and wish I had more friends so I didn't feel this way. I have cried everyday this week because I just feel so lonely and can't se ethings ever being different. I want to be happy, enjoy myself after so long being frightened and restricted. I want to feel loved and worthwhile and be good comapany. I know what I need to do but it is hard, building a whole new life,just as hard as life pre tx but in a very different way. It will take time.

A couple of my good friends post transplant have written blogs detailing their feelings on life after transplant and are definitely worth a read Tori's is here and Oli's is here.

Thanks for reading.

27 comments:

  1. golfinggrannie8 April 2012 at 16:45

    Is there a support network for CF tx survivors? Maybe you could start one? Maybe you could help and encourage each other? It's amazing how being "in it together" can reduce the size of problems.

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  2. Dear Tor,

    I think you're amazing. And I think it's completely natural to have such a maelstrom of feelings and emotions. And I think that the person I have seen in the blog will find that she can make friends, even if it is slowly. And as you get your strength back, you will be able to do more things, and you will meet more people. And if an email/blog/virtual friendship would help, I'd be happy to help.

    Still thinking of you.
    Love,
    Anisha

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  3. Firstly you are amazing and you've been through so much everything is completely understandable. I feel a lot of the same loneliness although obviously it pales in comparison to what you have on your plate.

    I have a lot of belief in fate and you have to make the best of what comes to you and good things will happen, you just have to get through things one at a time.

    Being able to express yourself through your blog is important so I hope you're able to keep it up :-)

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  4. Hey Tor,

    Thanks for the link to my blog.

    Yours is certainly a tough read. I think more than anything you have to give yourself time – you waited, as you say, for four years just fighting to survive. You're not in the stadium, but you know that you can get there and settle into the starting blocks at your own pace, with your own plans on your own terms.

    And your own terms are what matters most - it doesn't matter how other people progress, whether you're faster than them or a little slower, it's about how you cope, move forward and motivate yourself from here on our at your own pace.

    More than anything, you need to embrace the positive changes that have happened and weigh them against the negative. I totally know what you mean about the scarring etc, but as you say, you wear them with a badge of pride: when you find the right person no amount of scarring, drug-taking or any other medical history will be even remotely relevant.

    And, above all, bringing up transplant in a conversation is ALWAYS fun, especially when you say 'double-lung' - it bowls people over!

    Transplantees (can't say I like the term 'transplant survivors') are a super-special breed – we're fighters and we know how to keep ploughing on. All you need now it to find and focus on the next big thing you want to achieve: you've got the transplant, where do you want to go next?

    The world, as they say, is your oyster (only you're not allowed to eat oysters, so that's probably not a great example....).

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  5. Hunny, this is totally normal, you are only a few months out of tx and i promise you that give it another 6 months and things will look different. When u decide its time to get a job when u are feeling better and things have settled down u will meet new people that way. Your hair and general appearance will change slowly as meds are reduced/stopped and u will slowly get back to normality. It took me about 18 months before i went out and met people after tx because of my hair looking awful, fat face, loss of confidence etc. u will get there!!!! If you want a chat at any time, let me know on Facebook. Love Kim xxx

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  6. Tor I wish I could say something to help,what a very honest blog. I think all you are going through must be amazingly 'normal' - whatever normal is. You don't have to be worthy - just be yourself, be grateful and get well. Take strength from people like Oli. Remember that you do have lots of friends - even if they are people like me who have never met. You will find your new identity, new dreams, new plans - just give it time.
    lots of love
    aunty p xxxxx

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  7. I am a bit sad to read this blog but I understand perfectly what you are saying,recovery takes a long time.
    I agree that making friends is hard to do when your confidence is eroded by years of illness.I am lucky I have my family, but I have lost contact with most of the people I knew before transplant. Making new friends at my age is still hard.
    Don't worry about what you feel you should be doing.Decide what YOU want to do and do it.
    Join a local club or society doing something you like.Do something creative, art is good for getting out feelings.
    You have a lot of issues to deal with I think that post traumatic stress is the right way to think about it. There maybe a need to talk with someone, I found C.B.T helped me a lot through a local psychologist.But the best thing would be to do new things! even if it scare you, it will get easier the more you do:)

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  8. There just aren't any words.. the only thing I will say, having read your blog for the last 4 years, is that if anyone can get over these latest set of problems you can. The thing is you understand what the problems are fully and can articulately them perfectly in your blog, that's half the battle. The problems you face now may seem more significant than the ones you faced before, but I'm sure they are note. You just need to focus getting better and doing normal stuff. The more normal stuff you do the more those problems will go away. That's what I think but I'm no oracle, but I'm sure I'm right. Sending you big hugs.x

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  9. Dear Tor,

    You've gotten some great advice from others who have commented. I especially thought Oli's was right on target. Set your sights on the next big thing you want to achieve and you'll be on your way and feeling better about yourself very soon.

    I think you have a wonderful gift for expressing the emotional challenges of being on the transplant list, waiting and hoping for the gift of life. Perhaps your calling has found you. Let your passion show when your ready, but I'm sure your experience will save countless lives just by telling your story. You're an inspiration!

    Wishing you the courage to continue the journey.

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  10. Tor,

    I can't pretend to understand what it is you're going through, but what I do know from reading your blogs in the past is that you're an incredibly STRONG person. You've got through so much in your life and stayed positive when many others wouldn't have been able to. Even through your hardest times you've still been raising the profile of Cystic Fibrosis so that others in the future might have a better chance of beating it.

    I've followed you on Twitter for a long time now, and have been moved, inspired and motivated by you on more than a few occasions. Even though you don't know me, I hope that the knowledge that you've had this influence on someone else's life proves to be a comfort to you.

    You might not have achieved what some of your friends have achieved, or what you might expect to have achieved at the age of 24, but you've achieved MANY things of a completely different nature which are arguably a lot more important than mundane things like jobs and husbands.

    I'm not going to say the worst is over, because I feel that's patronising from someone who simply doesn't understand, but I can at least say that SOME incredibly hard times are over. You've proved you can cope. You're a survivor. Nobody can answer why you and not others, but there is a reason that you lived. You're worthy of a fantastic life full of things that you enjoy, and I'm 100% confident that you'll be able to get that life.

    Of course it takes a long time to adapt to. Coming to terms with the fact that you might not live is hard, and then to suddenly have the goalposts moved completely will be difficult. In the grand scheme of things, these changes have only just happened to you and you haven't had any time to settle into life again just yet. But you will. You have a supportive family who will help you through it, and I know you're so, so strong.

    Never give up. Keep smiling, keep dreaming.

    Gemma xxxx

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  11. Hi Tor
    You don't know me, but I've been following your blog for several years, but not often posted - sorry!
    I don't have any great advice or useful thoughts as I can't start to put myself in your position, but i just wanted to let you know that I am thinking of you, and continuing to wish you the strength you need to move through this stage of your life.

    I hope that you find some small steps to focus on taking, as we all know that those journeys of a thousand miles always start with the small steps.

    Take care and stay strong, but don't put pressure on yourself to rush through this, it took four years for your transplant to come, you have to allow time on the other side as well, not to put it behind you, but to put it into perspective of the part it has played in your life.

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  12. Hi Tor
    I have been following your blog for a long time but have never posted before. Your openness and willingness to share your thoughts and emotions, both good and bad, is really amazing. For those of us fortunate enough to have never had to face what you have been through, it's a gift to be able to even begin to see the struggles that you face. Though I have never met you, I feel close to you in a strange way - I tell my husband what updates you've put on your blog, I think of you daily and hope that you're doing ok. You have touched so many people's lives through your blog and the way you have shared your story, with such passion, such clarity and such downright honesty. Though I have not been through the same as you by any means, in my late teens I had a serious illness which caused me to withdraw from my friends and everyone around me for a number of years - it's hard to rebuild your life, but I promise, it's possible and you can make it.
    Love and hugs,
    Katherine

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  13. Dear Tor,
    It’s Josie I was a complete stranger to you, but introduced myself to you at Harfield Hospital – after reading your blog both prior and post my own transplant I just had to say hello.

    I think you are pushing yourself too hard and too soon. Life has drastically changed for you, and you need time to adjust, taking little steps is the way to go. Start with a list of what you want to do/achieve. Then at your own pace, work your way through the list, it will all come together at the end. When your strength is better as others have mentioned, joining a class whether it be yoga, art, pottery, book club and over time, you will build friendships. Your ability to write could take you into journalism and/or write your own book.

    Wishing you all the very best; and I will look out for you at clinic again. Love Josie xx

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  14. Beautifully written. Thanks for sharing. I hope this may be step in the right direction for your emotional recovery. Don't be too hard on your self. Wishing you all the very best.
    Emma

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  15. Tor, so many people have done nothing with their lives by the age of 24. You have maturity and strenght which are great qualities when you're ready to get a job. You're in the middle of a degree. So you're not that far behind in terms of life choices. I have so many friends who restart a new career at 28+ and don't think twice about this being late in life. Join your theatre group, even if its backstage work to start with, and let yourself by pleased with what you have achieved so far in life. It isn't as little as you think.

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  16. p.s I've got scars all over my stomach and legs from lots of other operations when I was little. My husband loves them, wouldn't change them for the world. There are wonderful men out there who want a partner with character and strength.

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  18. Hi Tor, I found your blog randomly flipping through the next blog section on blogger. I love your openness and vulnerability! Thanks for sharing your story, for being such a fighter, and for, well, just blogging and keeping it real. :) If there is ever a way I can encourage you, just email me - my email address is on my blog site.

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  19. You are not the "girl" you were 5 years ago, you are a woman who has survived illness and transplant. You are not alone, there is a huge transplant community out there, pre and post op. I am sure that there are so many opportunities out there for someone with your experience. Have you ever thought to work with a transplant co-ordination team?,you could do some training and start counselling post-op patients who feel like you do now. All the best. I know you'll do great.

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  20. I don't intend to be insensitive but it might come across as such, I hope it doesn't. Like many people I have admired you from a distance, you're not the first person I've known to have CF, you are the first person I've known to beat it though.
    I wonder how you would have felt 12 months ago if you had been told then of the problems you would have now. You see, I think it's fantastic that after all you've been through you're now worrying about boyfriends and careers....I'm an old man and I can tell you in the years ahead you'll look back at these times and wonder why you were so worried.
    Have a great life Tor!!
    David

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  21. Hi Tor, I'm so sorry to read what a massive set of hurdles post-transplant life has presented to you, but I think you write about it beautifully and help those of us who haven't been through it to understand what effects it brings. Like you say, most people think that getting your health back must be all wonderful and positive, but how can you possibly go from being terminally ill and coming to terms with dying right the way through to having "normal" lungs and all that whipped away in a one day, without it creating a massive set of issues and problems? I had major surgery when I was 13 (but in NO WAY as major as transplant!!!) and I was told to expect it to take a year to get back to normal. So it's no surprise that after all you have been through you are in a very confusing place just 6 months on. I hope you find a way to take one day and one step at a time as I am certain that this time next year things will feel so very different. Take comfort in the fact that others have felt as you do now and have come through it. Sending you the biggest hugs xxxx

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  22. Tori, sorry i have not checked in on your blog in quite some time. but what excitement to find you post transplant!!!! i am soooo excited for you. after reading your feeling on post-transplant....i wish i could find some words of wisdom to give you. those feelings so raw and true. i hopes i have for you as a young lady with your life in front of you, anything you want to obtain is all there for you...including those great red shoes. On the bright side, unlike the rest of us that had to make stupid immature mistakes, you can jump in with the clear mind of a 24 year old woman! all of the rest...the hair ....the scars....they are you and you will always be beautiful...inside and out.
    so happy for your new life
    Laura from Florida

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  23. p.s...HAPPY BIRTHDAY!!!!

    Laura

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  24. Tor - You're just doing so well! You must expect to be suffering so many doubts, worries and frustrations. It's all very well being told 'everything will get better eventually' but surely you must need some help in understanding your new life and your new self. Please please, if the hospital hasn't already put you in touch with someone, find yourself a counsellor to help you feel more positive about yourself and to understand your new world. Lots of love to you.

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  25. Change is always hard, perhaps even more so when it's a 'positive' one - so you feel you can't really admit that it's hard without feeling ungrateful. But it's totally normal.

    Also, as a fellow 24 year old I can safely say that most of us are feeling just as directionless/not making the most of our lives, etc, as you feel - I think a quarter-life crisis is pretty much standard for us all, and most of us don't have any excuse!

    Don't push yourself - just enjoy every breath :) life will work itself out in its own good time x

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