It’s been a while. There are many reasons for that, but the most important one is this.
I have been living.
Life with chronic illness is a curious creature, that shifts like the tides throughout the year, only less predictable. When I’m gifted a good day, I have to grab onto it tightly with both hands, and let it carry me away. When I get a few days, I’m pretty much euphoric, scrabbling around, cramming months worth of excitement into a finite pocket of time.
If I am stuck and housebound, I am ever present in cyber space; it’s my life line and enables me to be connected to the wider world. I rely on the connections I have online to keep me sane and busy, the friendships I have made and the endless support of my online community. When I am lucky enough to get a good spell, I disconnect from this world, and enter with some nerves, the actual real live world. I worry I will be missed… Where did you go? The reality is I will always be back. I will never get better, and you know what, I am finally ok with that.
It’s always terrifying to be feeling well, but exciting and challenging. I still need rest periods and carefully structure my time to allow for tiredness and pain, but I try to challenge myself as much as possible to grab life by the balls. I feel relentlessly guilty that those people that see me living, think I have been somehow fraudulent or misleading in my description of the majority of my life. Over the course of a year I get 3/12 months when I am ok enough to live. A quarter of my life where I can get out there and do great things. 25% of my life when I can be normalish, within reason.
It’s enough, if I only I can survive the other 75%.
This summer has been immense. We’ve driven hundreds of miles, built dens in woods, taught the kids about making fire, been on a pilgrimage to find some American soldiers that fell in World War Two in France, visited churches and zoos, feed ducks and swam with cormorants, explored shipwrecks and London, seen love and practised yoga on the sea.
It’s been exhausting.
As summer comes to an end, I feel the tug of my other reality. The crap bit. The frustrating, why me bit. But this time it’s different. For the first time in years I feel like I have the power, that I am in charge of my own destiny with my health. Yes I’m ill, yes it is unbelievably shit, but I am not going to let that stop me anymore. I have found my inner fierce, and have well and truly got my fight back.
I have been empowered by all that I have achieved this year with the blog, and my various rebellious politically active bits and pieces, that I’m not going to let myself slip back into the abyss again. There’s fire in my belly to keep the momentum going, and actually, getting more tired and an increase in pain lately, is giving me the time to put into my future. I am not quitting anymore, or being pigeon holed by society as a useless drain, I am carving out a new future.
One where I’m ill but useful.
One where I am ill but valued.
One where I am ill but productive.
One where I am ill but seen.
Every single person that has read my irate ramblings, or shared my blog, or spoken to me about my life and thoughts, I thank you from the bottom of my heart.
You have given me something to live for.
Self Confidence and a voice.
Overwhelming support and empathy.
I feel that I have been a part of a really wonderful movement of kindness, compassion and unity since May, and we are winning. The road is going to be so long and fraught, but we are walking the path together, fighting shoulder to shoulder for a better and more accepting world, and I feel privalaged to be part of that.
Day by day our numbers grow, as people understand finally, that we aren’t some crazy hippies that need to ‘get a fucking job’, we are simply good normal people that value fairness over anything else. We are fighting for everyone, not just ourselves. Like many that have come before we will not stop. Ever. And now we have a man leading the revolution who in days has created a majority female shadow cabinet for the first time in history. Change is already afoot, and I will continue to do my best to be part of it, wherever my path leads me.
I am back.
I am strong.
I will never quit.
Screw you Stills disease, you messed with the wrong woman.