Usually I have a pretty good idea about what I'm going to blog but today I just felt I needed to write to try and make sense of things so please bear with me.
Last night I was watching tv, a show about mentally disabled people being encouraged to work in a hotel. It was a great program where you could literally see young adults who had difficulties, grow and blossom before your eyes; just because they were given time, support and a chance to show people their amazing personalities. Anyway, there was one guy with Down syndrome who had terrible panic attacks, and when they showed him unresponsive and almost begat ive during the throes of an attack it was truly heartbreaking and a very tough watch. One of the people caring from him was concerned and phoned his mum. Despite watching him in a horrible state, her voice was cheery, she reported what had happened and told his mum she thought he was 'fine'. I couldn't for one second have anticipated what came over me. I went from being okay, watching tv, to shaking and sobbing.
Suddenly, I was back to one of my most disturbing times in ICU. I had a nurse looking after me who I'd never met before, she didn't know me, and so she couldn't know that the way I was behaving/feeling was in no way usual for me. I was suffering from a build up of CO2 in my bloodstream, not always immediately obvious, and usually fairly smiley I was shaking uncontrollably, cold, crying and begging to see my mum. All I wanted was to see my mum. I was trying to text her, utter nonsense but it was the best I could manage. Every time I asked I was told it wasn't visiting time yet. I was panicking so badly and I have never felt so absolutely powerless. Mum actually phoned through to my room because she realised something was up and my nurse cheerfully told her I was 'fine'.
As the CO2 built up I felt worse and worse, I can't describe how terrified I was and all that mattered in the whole world was seeing my mum. I couldn't get anyone to listen to how bad I was and I just couldn't cope. I could feel myself slipping down a dark hole and I honestly thought I was going to die. I gave up. I couldn't make anyone hear me and I resigned myself, the first time I ever had, to slipping away.
As it turned out I passed out, medics rushed in, stabilised me and finally people realised I hadn't felt too well. When my mum was allowed in I clung to her like she was the only thing that ever mattered. I couldn't e plain properly how awful I'd felt. I was stone cold and soaking wet from sweat. It was the worst time of my life.
I could never have expected that that tv show could take me back there. I've thought about that day a lot over the years since transplant, often sadly, often angrily but never with such a pure emotional response before. In a way, I think it was really needed. Much of ICU and post transplant hospital time is very vague to me with certain memories, that one being the clearest, standing out against the rest. I don't know why it happened but I think it was probably a good thing it did.
Lately I've been struggling a bit, emotions running a bit wild and drugs doing their thing are causing me to be a bit all over the place. I think another major fact is that on October 10th I'll be 4 year, I'll say that again 4 YEARS post transplant. This seems inconceivable to me and has quite a lot of emotional baggage tied to it. Only 50% of transplant patients make it to their 5 year anniversary so that's a big thing to contemplate. It makes you look at how far you've come, what you've achieved, what you haven't. It makes you want to rush out and do all the things you want to while you can and simultaneously consider all the problems you still have to overcome.
I am also nearly 30. Another huge milestone that makes you sit up and think, 'oh my god, everyone's getting married and having babies, what's wrong with me?! ' .
It's filled me with despair and terrible guilt for those not here who could be doing a much better job than I'm doing. But tonight I feel a strange sense of hope.
After last night, I have thought about post transplant a lot. I'm not in the perfect place. I'm often in pain, tired and I don't know if I will ever achieve the dreams that mean so much to me.
But I am still here. I can use my voice, my story to make a difference. I'm still breathing and alive and I can change my story. I have been through more than I think I often realise I have overcome. And for now, right this minute, that's enough.