"Sit down drink some wine. You are going to be fine". A little out take from date night a couple of days ago. I couldn't drink wine for a lot of years when I first became ill. The last year of two I started having a glass again and it's been okay. I figure if I'm going to be ill anyway why not at least have a bit of a fun reason for feeling so crap. Sometimes you have to balance up life and decide what's important. What brings you joy. And what things are worth the price of payback. And there is always payback. But there's something satisfying when payback is something you enter into willingly rather than it being foistered on you. It's a bit of a "Fuck you!" to the universe, my body and life in general. And it feels damn fine. I do love this old @asos_au dress for its pop of colour. #dysautonomia #upanddressed #dysautonomia#chronicillness#fashion #frockingup #fashionblogger #ootd #wiwt #everydaystyle #40plusstyle #disabledfashion #disabledstyle #ruraldisability #ruralstyle #ruralfashion #Australia #gippsland #greenhair #Spring #chronicstyle #chronicfashion #365dayswithdisability
It's been a huge few months. I look back and I realise I've squished a lot in. I've pushed myself. Gone with my life motto of "Fuck it!" and said yes to things and put myself out there. It's been exhausting and exciting. I want to say it means I've been riding a good patch. But I haven't. Not even remotely. But I've done things. And that is rather glorious.
If I wait for the good patch I'd never do a thing. I'd still be lying here in bed like I am today. Waiting to get to that point where I feel well enough, or at least on that even keel for a bit, where I feel up to doing something, anything.
Instead here I am. Typing on my dog drool stained laptop, lying in my darkened bedroom, swallowing down vomit, and writing a long overdue blog post. I want to say I've worked out pacing but the last four days of pushing way past my safe physical limits in Melbourne put paid to that that lie. In reality I hate pacing. Hate it with a passion.
I try. I really do. I tell myself I'm going to do it. I write blog posts about it. And then I fall back into old habits. Why after 10 years of illness and increasing disability, and my psychologist training, do I still fail to follow what I know are the recommended ways to manage energy in a life of chronic illness?
Time and again I fall back to spontaneous leaps of frantic action, followed by spectacular falls. But that can occur because I decided to sit on a couch or pot a plant, so I might as well push it, get dressed up and sit in a bar on a Friday night and have a glass of wine with my husband.
Payback is an unavoidable consequence of living.
No matter if I pace, or embrace my inner Mayfly, payback is there to greet me. And I'd rather embrace "Fuck it!" and go out in a blaze of glory aka fall flat on my face as I lose my tenuous grip on bodily control and am once more reduced to a messy, weakened pile of symptomatic sludge.
Because if I wait it'll never happen.
'No', is easy is some ways. Just like excuses. And I have an extensive list of very valid ones. 'No' can be a really healthy option. When I first became ill my inability to say no was a burden. I put myself last and kept trying to be the woman I was before my body reached the point of no return. I became sicker as a result. Everything I did was half-arsed (actually one eighth-arsed might be more realistic). And I beat myself up for my failures, while simultaneously trying to meet yet another now unattainable role. Because I was conditioned to always say 'yes'. Because I was the go to. The confidant. The one who could always be counted on in a crisis or to pick up the slack. I was the solver of problems and completer of tasks. 'No' wasn't in my repertoire. But now? That useful purpose is lost and mired in unhelpful behaviours.
No is best friends with my anxiety. No is my easy out. When my self doubt rises to choke me or when I lose sight of myself, no reigns supreme. At times the sheer overwhelming nature of illness means 'no' continues to be a survival mechanism, a route to self care. But more often than not, it is also the path that stops me from being part of life. It allows me to crawl up in a space that has the dual process of safety and respite, whilst holding me tight in a really unhealthy frenemy trap.
I walk a fine line with no, with pacing, with "Fuck it!" I make many mistakes along the way. But I am finding that when I embrace the "Fuck it!" side of the ledger I am happier.
Every scrap of payback becomes bearable because it is an issue of my own making.
And every time I try to force myself down the sensible road of pacing I am more uneasy with myself and my world. Sure there are times where it makes sense. I'll give my old professional self and all the professional and personal advisers a nod and say, yes, pacing helps. It is part of my recovery process when I hit the really bad patches. The patches where a flare is measured in months rather than days. When I think I'm managing things and my body sees that as a "challenge accepted" moment. Those are the times that pacing help. But outside of that?
For me it is not a salve to pain and malaise. It binds me tight and sits uneasily on my shoulders alongside all the other burdens of illness. So I continue to tread, shuffle, stumble, and crawl my way through life with spontaneous short-lived moments of glory.
I drink the glass of wine. I say yes to a talk. I stay up until midnight and roll around the streets of Melbourne. Or eat all the things I shouldn't at a Korean BBQ because it tastes so so nice.
And damn it feels good.
Three things I am glad I said yes to are linked below.
Firstly, I agreed to be part of the Fully Sick Podcast with Jenny O'Keefe. I'd listened to earlier interviews Jenny had done and loved, a) that it was all Australian stories, and b) that it was far more conversational than a regular Q and A. Jenny is such a lovely person and so easy to talk to. I probably said too much and I know I wish I'd rephrased or expanded in certain parts. But hey if I didn't beat myself up and over analyse my actions and words after everything I do it wouldn't be me. Plus, I blame the fatigue and brainfog.
Secondly, I agreed to be part of the Digital Writers Festival 2016. I was part of a panel with Anna Barnes and Katerina Bryant discussing Chronic Illnesses Online. I will say that pushed me. I was exhausted, had some family dramas going on and that disconnect of talking via the net, vs in person is still really hard for me. Not talking on the phone hard, but still a struggle and quite exhausting. But both Anna and Katerina were lovely and I'm glad I had the opportunity to share the time with them.
Thirdly, I agreed to be part of the Her Words interview series. And not only agreed, but put myself forward, which is so far from my normal behaviour I still don't quite believe it happened. It was an exhausting and long process, plus I'd spent the night before and that morning, wrapped around the toilet bowl in our hotel room. But the women involved were amazing and encouraging. It was a safe space and a space where their dedication to diversity and supporting women's voices was clearly evident. I ended up feeling like death not even slightly warmed up by the end, but also energised and excited. Nothing like being in a room of people who all just get it. I spoke about Self Love especially rediscovering it after becoming chronically ill.
My first reaction for each of them was to say no. But I said yes. I pushed through, crashed after, and was glad that I ignored that first reaction.