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From the dark icy fingers of Winter

Greetings to you all from my bed, the wind is howling outside, Agent Cooper is snoring like a little piglet at my feet and I’m bored out of my tiny mind.

I’m sat here as another wave of relapse washes over me, one that I was getting warnings for in the shape of dizziness and emotional deregulation but ignored because, well, I thought I was done with all that by now.

I managed to navigate the festive period without too much stress. Whenever anyone asks me what I’m doing for Yule I always say “something nice and quiet”. I can’t stand the fanfare of that time of year, the noise, the rush, the pressure. It’s just not me, I never really enjoyed it pre brain damage. As for New Years Eve I was asleep by 10pm. Rock and roll eh? I find New Year problematic because it’s a time when the slate is wiped clean and we all act like this is the year where everything changes….except it doesn’t.

It’s funny because I’m actually a very optimistic person but I’m also a realist. I know my 2020 is going to look a lot like my 2019. Gone are the heady days of my youth where it was all exciting. In fact most of our 2020’s are just 2019 rebooted. Of course it’s nice to plan change and look forward to adventure but sometimes with the society we live in it can feel like pushing against a very big, very solid wall.

I do try to not let political shenanigans infringe on my life, we know it’s all panto right? It’s best not to rely on those in ‘power’ to make things better. I mean as if Politicians are going to sort your life out. But when people all around are losing hope, what the eff is midnight on December 31st going to miraculously do?

Anyway, I didn’t want to depress you all. I suppose I’m saying this time of year as the muggles celebrate it is not for me. I much prefer honouring the Winter Solstice, the return of the sun and more importantly the return of HOPE. We made it. We will see the long days of Summer again. Those days of sweet breezes blowing through the heat. The abundance of colour and life. I do romanticise Summer but isn’t it great to have this nugget of excitement stirring.

Mr Braingirl and I have plans this Summer to do a driving tour of Ireland (please please please let me have the energy). We want to find those little hidden places and ancestral landscapes. We want to seek forgotten standing stones with stories to tell and peek into fairy raths. Now that’s worth smiling about.

So even though it seems like it, not everything is shit. Maybe tuning our eyes and ears a little more into the good stuff helps create positive change.

Myself and Mr Braingirl do small things, we don’t have much but what we have we share when we can and I think that’s the important thing here. It’s about getting stuck in at the grassroots, lending a hand or an ear or a vegan sausage roll when it’s needed and spreading a little bit of love and joy.

Let me know what is worth smiling about for you.

x

 

 

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Keep hope alive.

We’re in the strange twilight zone between Xmas and new year where you don’t know what day it is and there’s a feeling of impatience, of waiting. Waiting for what exactly, you don’t know. It’s a time where I notice I go inward, even more so than usual, I start thinking about what I’ve acheived, what I haven’t acheived and how I’d like my life to look. The reality never matches my imaginings (think sunshine and cornfields with floaty dresses and bare feet) but I still do it or things will get very bleak indeed.

I have recently had a downturn in my mental health, I have been very exhausted but mainly my cells have been full of sadness. Waking up every day and feeling like it’s an obstacle course is tiring and disheartening . I’m also aware I’m not accepting what has happened, I refuse to, because living like this is just not good enough for me. Then comes the guilts and the shames for still feeling this way, wondering why a smart person like myself just can’t get over this. There’s the rub you see, it doesn’t matter how smart you are, it takes the time it takes.

As a result of my decline I’m back at Counselling and have been referred back into Brain Injury towers, that amusement park of services where you close your eyes and hope for the best. I’m grateful that they exist, I am, but it all just feels too little too late, too disjointed. A session I had at Counselling the other week brought up the notion of hope and how throughout all of this I always had hope, it was this that made me still have my imaginings of a healed braingirl and all the amazing stuff I was going to do, it was hope that made me carry on, it was hope that was sometimes the only thing that made me brush my teeth and go to the toilet.

But recently, my hope had disappeared. This was worrying, as in the absence of hope, I had nothing. That’s when I felt REALLY broken. That feeling of the final straw. I was starting to think I couldn’t do this anymore, to keep getting up after having your legs swiped from under you has its limit it would seem. I am a stubborn mofo but I was starting to feel I had no strength left.

As you may or may not know, I came off all social media last year, because it was so full of hyperbole that it was sapping my will. I stayed on Instagram because I enjoy the pretty pictures, I also enjoy the fact that you don’t have to say anything if you don’t want to. I was lazily scrolling through my feed earlier and dipping into some comment sections and I noticed that a lack of hope was creeping in there too. There was one particular individual (not on my follow list) who was just plastering Vegan accounts with despair and nihilism. He was a younger fella so he may be doing that teenage emo thing but it got me thinking about the nature of hope and how intrinsic it has been in recovery. It also got me thinking about hope on a wider scale. It doesn’t take much to trigger my PTSD and I am very careful about what I feed my brain so it only took this one kid to send me into a despair spiral about climate change and why intelligent people (who think of themselves as fair minded) still keep oppressing animals, why don’t they get it, why nothings ever going to change, the sky is falling in etc etc etc. Then I stopped myself and realised that firstly I felt sorry for this person, to be so young and so free of hope must be very scary indeed but it also kick started my hope accelerator. How can he have given up I asked myself. There is always hope, there has to be. 

I don’t want to live in a world out of hope, heck, I don’t even want to live in my own body without hope. If you’re out of hope, plant something, make a list of things you’d like to do, let yourself lie in bed and have your wild imaginings about that day where you are healed and free. The plant may die, the guitar may go unplayed and you may never be fully healed but for that second, you got a boost in your hope centre and your neurons laid a stepping stone that helped lead you towards a moment of sunshine.

Now playing: ‘No hard feelings’ – The Avett Brothers

I found this poem called ‘Wild Geese’ and somewhow it fits. It’s lovely. Please read it.

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Along with everything that was lost and won

It’s Autumn now. The nice part of Autumn where it’s still crisp and sunny and bright, not the soggy fart back end of Autumn that leads into the misery of Winter.

I’ve just spent 4 weeks in bed. Now when people normally say I’ve spent all day in bed what they usually mean is they got up and watched TV at some point or maybe nipped to the shop. When I say I’ve spent 4 weeks in bed, I mean IN BED. I got up to go to the bathroom and occasionally snatch some toast from the kitchen. And that’s it. I’ve been on another downward spiral, the Post Traumatic Stress is strong and I cried, panicked and generally felt hopeless. Despite being told I will come through it I didn’t believe it, I thought I’d be like this forever. When I have an episode of such soul crushing depression my brain tells me to stay in bed as there is only one thing that will keep me safe:

duvet of safety

This duvet protects me from everything. I’m tricked into believing that anything outside of it is dangerous and must be avoided at all costs. This duvet repels ALL danger. There is no telling when the urge to burrow will arise, it comes out of nowhere and overstays its welcome. During this phase I mentally and physically deteriorate, I get aches and pains, I panic and get the worst fatigue you can imagine.

But then, out of the blue, it lifts. Again there is no warning for this, I just wake up one morning and all of a sudden I can go outside, I wear a bra and I feel a strange thing called ‘hope’.

I’m currently riding a nice phase, I can keep my obsessive thoughts in check, I can believe I’m healing and I can look forward to going out the door. I hope these phases last longer each time, it’s great being able to think clearly. Don’t get me wrong I’m aware I could drop again any day and begin another phase of hopelessness but I have to take these good days as they come and breathe in their sweet sweet scent to fill my lungs and brain for as long as possible.

I still meditate every day and I think I’m finally beginning to understand ‘living in the moment’. It really helps, I recommend meditation for everyone regardless of whether you are ill. I also started Tai Chi to socialise, to roll out my stiff neck, back and shoulders that occur after a stint under the duvet. Life is still not 100%, I still get the shakes in the morning, I still cry out that grief but it’s easier to cope with when I don’t need the duvet to save me. I want to save myself, I want my life back, I want it back with a desire I cant even describe.

My next post will be an anniversary post. 30th Sept marks 1 year on. As it’s a special occasion it will be written by Mr Braingirl. He’s been there through all of this so you will be getting his story.