Fear

Thursday, October 12, 2017

This isn't going to be a fun blog to write, or read in all probability but I'm hoping it might help to get some of how I'm feeling out of me. Cathartic in some way.


Where to begin. 

I'm not coping right now. I feel bad about it and guilty and like I shouldn't feel like this but that doesn't change the fact that I'm not coping. It's a whole host of things, only a few of which I will go into here but together it's left me feeling completely lost in somewhere very dark indeed. 

If you've read my last three or four blogs you'll know that I've been having a few problems with my liver and the veins in my esophagus. Firstly, I hate the word veins so I will be calling them anything but that for the rest of this blog. Liver disease is not anew thing for me. I have an enlarged liver and spleen and portal hypertens and cirrhosis. It's never caused me much problem but has always been there. When I was around 8 I remember sitting in the Drs room with my parents while he told them in front of me that bleeds, coughing or vomiting blood were a risk and something that could happen. Also that they needed to keep a close eye for liver cancer. Being so young the cancer thing didn't stick, but the blood thing did. The only experience I had with blood was the hideous frightening needles to take blood from my arm and the scary bottles of dark red. The idea of it coming out of me in copious amounts has ever since been one of my biggest worries. I won't even watch anything that might involve it on tv. 
So hearing the varicies needed treatment now was always going to be scary. Realising something else is going wrong inside without me knowing is also frightening. Add to that that this week we lost a hugely inspirational and amazing transplantee who was the longest surviving transplant recipient, to complications from a burst ulcer and internal bleeding and its all just a little too close to home. Aside from the reason he died, I think most transplant recipients will feel grief for a fellow patient who dies, whether they knew them well or not. It's a commerade, a fellow fighter and you know all too well how hard they fought to be alive. When they lose you feel that loss. CF patients and transplant patients deal with loss on a daily basis, most people wouldn't believe how many friends we lose. 

I've also reduced both my steroid dose (any change makes me go completely unstable) and my anti depressants. This was done to try and solve another issue I was having and I was quite proud with how I was coping on the lower dose. I still am but it's really not helped with all the extra stress on top. 

I had the banding procedure done on Tuesday, my 6 year anniversary of transplant. It went well, the staff are just a complete dream team and other than not having much appetite and being sore it was ok.
Until last night when I burped and one of the bands flew into my mouth. 
I should say that it's fine, that's ok, I've spoken to my long suffering consultant and he's reassured me. But I'm not afraid to admit I was terrified. Terrified I'd bring up blood and be at the mercy of Drs that don't know me or my conditions. Terrified I'd sleep and wake up choking on it. Aside from that, the shock that something like that which could be potentially life trphreatening can happen just like that. And there's nothing I can do. 
Most of you know the repeated fractures, fatigue etc that seem to work to hold me back are draining. It add this new fear on top that anything can happen and I'm free falling. What if my mum dies? The only one who is there no matter what? What if I'm hospitalised and in ICU? What if my lungs fail again? What if I need radiotherapy down the line for rejection? What if what if what if? 
It's like something's snapped in me. I didn't sleep. I'm exhausted, drawn, and keep bursting into tears. I looked in the mirror and all I see is this scared little person looking back. I don't want to go out and I certainly don't want to go on the days away I have planned. 

Even my home doesn't feel safe any more. I'm consumed by fear. 

I've got no real support. I feel alone which is even more terrifying. I have my mum and dad and a couple of good friends. They are the only people I feel I can confide in and sometimes not even them. They have their own problems and a lot of time I feel like a burden. I should snap out of it but I just can't. I also feel angry. Angry that others can walk away and not feel frightened every second of every day. 

It feels as though life is over. Every time I try to make myself less lonely or chase my dream of acting it just fizzles to nothing as there is always something medical that needs attention and my energy is limited. There will always be that issue that has to take priority because it could be dangerous if not sorted. 

I'm sorry for such a negative post but it's all I can do right now. The band coming off isn't a problem. But tomorrow or today or next week something else could be. 

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7 comments

  1. What makes you think others do "not feel frightened every second of every day"? It seems to me that you have never been responsible for your own life let alone someone else's. How do you think parents feel? What if I lose my job and can't find another? What if I can't make rent this month? If I lose my home, will they take my children away?

    The problem with the chronically ill is that they think they have a monopoly on pain and suffering. You don't. Every single person has worries and fears and every single person will die.

    “A coward dies a thousand times before his death, but the valiant taste of death but once. It seems to me most strange that men should fear, seeing that death, a necessary end, will come when it will come.” William Shakespeare

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    1. I am very responsible for my own life thank you. If I didn't work bloody hard every day I wouldn't be alive let alone the determination it requires to push through the pain and problems to go out and do things each day. I never once said that being ill was the only problem that can be experienced. It's all relative and I'm writing about my own experience because it's all I can write about.
      Sadly I wil never know what it's like to be a parent as I can't have kids, again due to my prognosis. There are a lot of things taken away because of it. It at the same time my life is richer.
      It's not dying so much that concerns me but the suffering something like a bleed could cause. I've had enough medical intervention to know how frightening and unpleasant it can be.
      Again, no monopoly on suffering but please don't judge my life as carefree, because it isn't.

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    2. I never said your life was carefree. You were the one who stated you were angry because OTHERS didn't have fears and worries. I merely pointed out that EVERY SINGLE PERSON has fears and worries. It is what you do with them that matters. I also could not have children. By the time I was your age, I had lost all of my grandparents, both of my parents (mom from a rare form of brain cancer and dad to heart disease), and my oldest brother (to suicide). I have a genetic disorder that causes cysts to form everywhere. I lost my ovaries at 14 and I have had seven surgeries in the last three years to deal with a jaw cyst. It isn't fears that matter, it is what you do with them. Accept that everyone has fears and push on anyway.

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    3. I wonder why you read this blog. The author has been honest about a very difficult time. Not once does she say that she is the only one who suffers. Not once does she claim her experiences are worse than anyone elses. The fact you post this anonymously says a lot.

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    4. Dear anonymous troll,

      How very dare you. I find it a little ironic, that you use a quote about cowardliness when you haven't the courage to put a face or name to your opinions which seem to be totally lacking in compassion or common decency.

      If you took the time to read Tor's blog, which has been an inspiration to many people who have friends, family or themselves have CF or been waiting on transplant list or been lucky enough to get the call you'd perhaps understand why.

      Here is Tor, who is courageous enough to speak openly about not just the good but the bad of her life. I've seen even online her grace, her fight and how much she makes every day count. And to suggest that by writing about her very real fears she is suggesting that as someone who is battling chronic diseases and the symptoms which are quite unpleasant she has a 'monopoly' on pain and suffering is just utter garbage and twisting her words. Perhaps you didn't notice that even in the midst of all the fear and crappiness she is dealing with, she has expressed her compassion and love for friends and family knowing that they too have problems of their own.

      I don't know your story. I imagine you have fears. Perhaps the ones you've mentioned. But I hope that if you go through a real crappy season in life and you have the courage to speak up and ask for help or simply express your feelings in the hope that someone will listen and even simply say "I'm sorry you're going through this, that sucks" that's the response you get, and not the one you gave Tor.

      Tor, you are amazing, and though I don't know what it is like to be in fear or coughing up craploads of blood or to have so many close friends die...I do know what it is like to fear in a way where you feel like you can't breathe, sleep or have sanctuary from it. I hope you have a good doctor who is there to help you with your mind and not just your organs. And I pray those fears you are having are never realised. For whatever it's worth, as someone who doesn't know you 'in real life', I'm standing with you.

      With love, Laurie

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  2. The only time I do anything anonymously is sometimes when making donations. I would not worry yourself, Tor, about someone who is not prepared to identify themselves when commenting on your blog. They obviously don’t live by the maxim that you shouldn’t say anything on line that you are not prepared to say in person to someone’s face. There are people that you don’t even know, who root for you. Hold on to that.

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  3. Dear Victoria

    I just read your post and was very moved by it. I saw there were six comments and wanted to see what people had said in attempts to offer comfort or hope.

    The anonymous poster clearly has a black heart. Please disregard everything she said and be assured that she is a very unusual specimen. The majority of people in this world wouldn't think would she said, let alone send those thoughts to you.

    I am so sorry for everything you are going through. Life seems so unfair at times.

    Tracy

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