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You look so tired, unhappy

This is my June post, very late in the month and not what I intended it to be. I had an outline of a script written for a video but I’ve been defeated by fatigue. I wanted to get something out there though so I’m just writing where I’m at today.

I’m fed up today, I’ve been fed up for the past three weeks. I’ve been fatigued for the past three weeks. Minimal activity, days and days of sitting in bed in my pyjamas staring at a screen watching reruns of tv shows that won’t tax my brain. I’ll not lie I’m demotivated, overwhelmed, sad and really really f****d off.

This is the thing with brain injury, initially it defines you completely, you are each other. You lose who you are and become one with the TBI. This then subsides into a more cooperative existence, you know each other are sharing the same space and some of the time can rub along together quite well.

THEN THIS HAPPENS

This descent into fatigue, this life stopping, mood changing and all round annoying aspect of my brain injury. I said on my support group the other day of all the things that my brain injury took, I miss my energy the most. This is true, without energy EVERYTHING becomes difficult. It’s also a time when you realise that to some degree you are still defined by the trauma. What happened to me over three and a half years ago still runs the show, it’s not as strong as it used to be but overnight it can firmly and stubbornly put the brakes on.

There’s been a few triggers; hospital appointments, general busyness and then the current political state of the UK. I don’t want to talk about it too much here but the recent vote in the Uk triggered my Post Traumatic Stress. The feeling of being vulnerable and unsafe combined with the catastrophising on social media and the terrible rise in racist incidents sent my brain into an exhausting and fear filled panic spiral. I can’t stop this happening, it does it all by itself. What I CAN do is accept that’s how I feel right now.

I KNOW it’s part of recovery, I KNOW it will pass, I KNOW it’s for my own good but can I just say right here right now in this moment I hate every stingy, mean, exhausting and boring minute of it. I hate being stuck and trapped, I hate feeling my brain literally shut down after ten minutes of any concentrated effort. I HATE IT, I HATE IT.

There’s a certain expectation to be used to this by now, to just go with the flow. Well, I am used to it but I still hate it. I do go with the flow, but ‘going with the flow’ doesn’t mean denying my anger and frustration. As I sit here with my ears constantly clanging with tinnitus, my eyes leaking and my brain just refusing to connect up, this is TBI nearly 4 years on. This is my reality. This is the time to rage against what’s happened.

So I’m resting, switching off, avoiding social media as much as possible, eating well, drinking water, trying to connect both sides of my brain up and waiting this out.

And then, one morning soon, I’ll wake up and be able to get out of bed. I’ll have energy and joy. I’ll be able to read a book or have a conversation without feeling like my body wants to shut down. I’m telling you this because each subsequent episode of fatigue is a launching pad, it’s the hibernation period before you take off into your next chunk of recovery and this is what’s waiting for me at the end of this tunnel and this is what keeps me going, I hope it keeps you going too.

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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.