I don’t tend to live in ‘years’, if that makes any sense at all. Since being ill I’ve lived more hour by hour, or day by day, or week by week, or maybe month by month. Years are such big things. And decades…it doesn’t bear thinking about some days. But I’ll join in in saying farewell to 2019. It has undoubtedly been one of my hardest years yet, if I lived in terms of years. But more than anything this year, if I lived in terms of years, has been my bravest and most transformative ever. It rivals that first year of living with M.E. at the age of 21, for strength and resilience.

This year I have been reminded of something I had forgotten. When you live each day in the depth of chronic illness it is so easy to forget that that is what you’re doing. Stay with me. Sure you are aware that your body isn’t functioning as it used to; as it ‘should’. You are aware you’re unable to work. You are aware of your dependency on others. But you create a new normal for yourself and you cocoon yourself in the knowledge that this is your good life. That there is so much joy to be taken from each tiny achievement. You give yourself permission to celebrate things that don’t even register as ‘things’ to some people.

But you, or maybe just I, forget how much of an impact all that really, REALLY has. It is nuclear. Every single day when I make the best of a bad situation, I am still subconsciously dealing with the fact that my life is not as expected. It is not the expected norm.

I’m dealing with some heavy shit y’all. Every single day. (Sorry for swearing Mum!)

So when I berate myself for forgetting to add something ‘vital’ to the shopping list for Mr Tree Surgeon, or I cry at a change in plans that seems completely out of proportion, or I become frustrated that I can’t get to the doorbell in time, or breakdown with every single pregnancy announcement despite months of counselling.

Sometimes I feel quite melodramatic that a seemingly tiny inconvenience can upskittle my whole day. But it’s been pointed out to me that all of these seemingly small and inconsequential things are happening on top of an already huge thing to be dealing with; life with restrictive chronic illness.

I’m doing pretty darn well when I think of it like that. And I have survived and braved this year in a way I didn’t think I could. I have learnt to say No when I need to. I have owned and accepted things in a way I hadn’t before. I’ve held my head higher in some ways, and hidden away in others, just when I needed to in order to survive and get through.

I read a quote a few months ago that sums up 2019 for me I think.

“You are on the floor crying,
and you have been on the floor crying 
for days.
And that is you being brave.
That is you getting through it
as best you know how. 
No one else can decide
What your tough looks like.”

Clementine Von Radics

It has been, without a doubt, an incredibly challenging year with so much to contend with. Yet I’ve done it. Somehow, I’ve done it. I’m really proud of myself. More so than ever before.

This year I have had to focus more on my own personal journey than on my usual advocacy efforts. 2020 will see a return to ‘normal’ I hope, with the Blue Sunday tea party in May being my main aim and focus again.

See you on the other side.

Anna xxx