Some days I feel as though there's a dark shadow, lingering in my peripheral vision. This shadow of dark thoughts and feelings. I try to ignore it but I know it's there and I hope it doesn't get darker or bigger. I have to try and go about my day without looking at it directly, trying to ignore it, while all the time feeling that sinking in my stomach everytime I do think of it.

Some days it's like black smoke, like a curse in a storybook. Everyone runs from it but ultimately know it will catch up with them in the end. The smoke envelops you eventually and all you can see is darkness, all you can feel is sadness and fear and anger and hopelessness. 

Some days the anger just bubbles up. Everything is too much. There are too many things I've missed out on, things that have gone wrong. Too many hospital appointments, treatments, drug side effects. Too much anxiety and worry and pushing myself to try to overcome them. So much fear of doing things that come so easily to many others. There's jealously about why it's always me having to deal with all this.

Some days there is nothing. Just laying staring for hours where anything else would be too much to deal with. 

Some days it's so hard to see what is causing me to feel this way. Panic attacks and PTSD? Steroids and their mile long list of side effects? Diabetes highs and lows, pain, increase in medication and hospital visits? New drugs? Different side effects? Depression? A mix of all the above? 

Some days I am desperate to talk, to get it out, to get answers. They don't come. Some days I don't want to see or talk to anyone. They don't understand, they say stupid thing. I feel isolated, lonely, hopeless and helpless. I wonder if anyone would care if just disappeared. I want to hide under my duvet and not resurface until I can cope again and the world isn't such a scary place. Some days the tiniest little word can bring such a feeling of gratitude that someone cares or understood in some small way that it makes you almost lightheaded and so grateful for your friends who stuck by you when you feel like you are not worth knowing.

Some days everything is too much. There is literally nothing I can think of to do that doesn't make me irrationally so angry I could do serious damage or so pathetically sad that I go about trying to do whatever it is and just cry and feel so miserable I could sink to the floor and never get up.

Some days I hate myself. I look in the mirror and see the weight gain from the steroids and the moon face. I see the bad posture from years of hunching over to breathe. I see the hair that changed texture from my anti rejection tablets, that all fell out and had to grow again. I see the scars. I wonder what I would have looked like if my body hadn't been blighted by illness. I wonder what anyone could possibly see in me that they would like. Why anyone would choose to listen to all my crap or share my worries because if I had the choice I would run from me as fast as I could. 

Some days I feel such heavy guilt. It's like a cloak tied around my shoulders weighing me down. Why am I still here? Why aren't I happier/ better/ more grateful/ more like others are? Why don't I do more? Why are some of my friends and fellow comrades in fighting these hideous illnesses not here and I am? Why wasn't I taken and not them? What would they and my donor think about me and how I live my life? Would they be disappointed? 

Some days I can make no sense of what has happened to me.

Some days it's like I'm drowning in all of the horrible thoughts, and insecurities and no matter how hard I fight to get away I can't. The fighting is exhausting.

Some days I can feel ok. Hopeful even. Some days I can see better times, feel joy, plan ahead and not feel the heaviness. I can have happy times but always worry it won't last and that I could wake up the next day with that terrible feeling again. 


  1. I read this and felt I simply had to reply. I'm sure I won't end up saying anything that you haven't already been told hundreds of times, but still...despite all the things that you've been through mentally and physically, you keep making the choice to try and keep going. That's something you have control over even if your mind and body seem to be giving way, and it's a really impressive choice. I don't currently live in England anymore but if I did I would ask if we could meet up because I've been reading this blog for several years and I feel like I have loads of hugs stored up for you and it's the only concrete thing I could probably do to help. I'm lucky to not have experienced a major illness yet, but I have experienced depression. Just keeping going even when it feels like nothing is worth it or ever will be is still an achievement. You're doing just fine as you are, I swear.
    Many long-distance hugs,
    Katie (YamiKatie)

  2. Tor, I've followed your blog for many years and I'm sad to see that life isn't easier for you.

    I have a chronic illness and the book which has helped me a lot is How To Be Sick by Toni Bernhard. I can't promise it will fix everything but I do think it would help you a little. It really has helped me.

    I hope you manage to read it. You have survived so much. I can't imagine how it must feel like to be you. Keep going, you have huge worth.