04/01/2017 06:50 GMT | Updated 05/01/2018 05:12 GMT

Living With Chronic Illness: Why The Holidays Are Hard


Being ill, regardless of what time of the year it is, is hard... Summer, Autumn, Winter, Spring, it doesn't matter when it is, each day, each week, each month, is really fucking difficult. What's happening outside my bedroom, regardless of the time of year (because there is always something happening that I want to be part of!) is a constant reminder of what I'm not doing and not able to do...

I write that last part through gritted teeth - saying I can't do something is still so hard. My stubbornness and determination to be well hates that I need to write that and own the reality of where I'm at! I don't fucking want to! I want to be well! But, paradoxically, I am also aware that I need to say where I am at, because it is part of the harsh reality of life, and has been for a long time... and that actually it's progress if I can say that I'm struggling, I can't do something, this is where I'm at, etc...

I just need to also look the other way a lot, too, and think about something else! Or forget my reality of where I find myself health and physical abilities wise, because if I really look my reality in the face it leaves me feeling so depressed I don't want to live.

There's something particularly challenging about Christmas time. It's a marker in the calendar that is unavoidable. I can dodge (well kind of dodge) other times of year that are particularly difficult. For example, my birthday feels hard, because it marks another year passing, and is a reminder of where I am compared to where I wanted to be, but on my Birthday it's "all about me". It's just one day (or one week, depending on how celebratory I'm feeling!), and I can choose something restful and cosy to do as celebration.

I can - to the best of my ability - avoid feeling all of my heartbreak and frustration about what I want to be doing compared to what I actually am. Whereas at Christmas time and over New Years Eve, this is much harder. There is so much happening that I want to be a part of - and usually would - but instead have been desperately trying to pretend isn't happening.

It has been easy to feel like everyone is doing stuff over this holiday period, and the truth is that a lot of people have, but not everyone has... There are lots of people in similar situations to me, and people in heaps worse situations, too. Keeping that perspective helps me remember that I'm still doing okay despite what I'm experiencing health-wise, and that the stories I'm telling myself in my head aren't true. They feel true - so convincingly true! - but they're not! It's the crisis of comparison, or my inner critic throwing me into the middle of a self-judging shit-storm.

It's the time of year when there are more parties, more gatherings, and it often feels like I'm the only one not there or not going to things, but there are plenty of people who aren't. And it is just a time that extenuates feelings I experience throughout the rest of the year, too, so feeling able to build resilience and strength within these feelings of sadness that I'm missing out on things is a gift I can give myself to step into the rest of the year with, no matter how much it still sucks and doesn't really make it any less easier, it just makes it a bit less

Plus, these things come in phases - this won't be forever. 2015-2016 New Years Eve was amazing. A bunch of us danced in a friends kitchen and hung out in the hot-tub in his garden. I arrived home at 5am. This New Years Eve I was in bed with a killer bloody migraine and debilitating abdominal pain! Ugh.

I appreciate getting older for this reason - I am beginning to notice cycles, and how I have lived through intense periods of being confined to bed, or health being relentlessly insanely difficult with no breather, but then there always is. Things never stay the same - the thing that has stayed the same though is that health has been continuously difficult and an intense problem for 10 years now, and so this changing is something I'm really struggling to imagine, because it's been my reality for so long.

However, within this 10 years there have been so many ups and downs. I have always been struggling with health throughout this time, but within this long struggle, the level of struggle has been different - the level to which my health has debilitated me has been different. It has ebbed and flowed throughout these 10 years. Sometimes I've been bed bound for months, other times I've been able to push through and do heaps of stuff I've wanted to do (still not nearly everything but the fact I've been able to do what I have been has been amazing). Sadly the last few years the pendulum has swung way more towards the former than the latter, but within that I've still had amazing periods of doing loads of beautiful things. I just wish it was constant and I wish that even during those times I could do the things that I'm unable to do (snowboarding, kayaking, etc, etc).

I hope that with the years that come, I continue to build resilience in coping with the emotional effect that hitting holiday periods and significant dates bring me (and resilience within moments I just really look at the fact - and remember - that my life is not at all as active and busy and full as I want it to be, and it used to be). I also hope I continue to remember that the stories I tell myself in my head generally (always?) are not true! And I hope you can, too.

Happy New Year.