Today, after 5 weeks in Kettering General Hospital (I'm rounding 33 days up to 35 and feeling no shame for doing it), I got discharged.
Freedom, and pure relief.
I'm extremely happy, but as this isn't my first long-term hospital stay I'm a bit nervous about what will happen over the coming weeks and months. When you're in hospital, you do what you need to do to get discharged. Once all, or as many as possible, of the medical boxes have been ticked - you go home. To the uninitiated - as I was before 2010 - this is the end of it. You're well enough to go home, therefore you're better, and all this can be put behind you. Not at all true. Home is where you start your real recovery: where you're able to sleep on your schedule and not the nurses, where you can eat what you like when you like (the last meal of the day at 16:45 is ridiculous!), where you don't have to ask permission to go outside, where you remember and re-establish your routines to suit your new 'self', and have an identity which is greater than the tag around your wrist or the number of your bed. But you also feel a huge sense of bewilderment at life outside of hospital, and it's only when you're in a happier and healthier place that you're able to reflect on "what the bloody hell just happened to me??".
Being critically ill changes you as a person - massively. I didn't realise this in 2011 when I was in the aftermath of a Crohn's diagnosis following sepsis in 2010; it was my (medic) housemates who encouraged me to get help. A counsellor explained that feeling guilty for going home and being less ill than the people I was in hospital with was useless; me not having an ileostomy wasn't the cause of them having one - I was lucky. But introducing the concept of 'luck' increased my anxiety: if it was a random occurrence caused by bad luck, then how can I prevent it? What if this happens again? It was well into 2012 when a very close family friend was terminally ill that my survivors guilt peaked, but then the urgency of enjoying precious good times took over. I accepted bad things happen at random, however unfair that seems, and other people's health is not dependent on mine.
When my epilepsy diagnosis came in 2013 I struggled a lot, but I'd argue the side effects of epilepsy drugs and the implications of my diagnosis on my training had more to do with this than the diagnosis itself. It took less than a couple of months to accept having epilepsy made me neither a good person nor a bad person; simply a person with epilepsy.
I'm not sure if knowing about this grief process (because you do grieve; for the person you were mentally and physically, and for your 'old life') in advance is a good or bad thing. This month I've had moments where survivors guilt very nearly overwhelmed me, but I'm extremely grateful for being alive - and not ashamed. Me developing meningitis was a random event: it's tempting to ask "why me?" but more accurate to think "well, why not me?". My survival of, and recovery from, it is a result of the skill of many doctors and nurses, endless support from family and friends, and a bit of hard work from me. Luck - good or bad - is irrelevant.
I'm unsure where to draw the line with continuing this blog. I'm out of hospital, and can walk for short periods, although I still rely on a wheelchair for most things outside of the house. I'm sure many people lost interest long ago in the minutiae of my recovery, and I don't blame them. However, I now seem to have a following outside of my social circles so maybe continuing to write about my recovery at home, outpatient physiotherapy and regaining enough strength to be fully independent may be of interest/beneficial to these readers? Either way, writing this blog has been unexpectedly cathartic whilst I've been here, and it might continue to be now I'm home.
Thank you once again to everyone who helped me get to this point. I feel privileged to be here.
Love Emily x
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