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.
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.
