4

7 years later…..

Hello headbangers!

It’s that time of year again. The heavy woolly overcoat that is my TBI anniversary. This year I’ve made a video. Please do watch and comment, I value everyone’s input.

Also if you have a YouTube account you can subscribe to me as I do put up little videos in between my monthly posts that don’t get shared here.

On with the show as they say

4

These things take forever

I can sense Autumn in the air, I can smell it. We had a glorious Summer, which served as a battery charger for me but also gave my anxious brain opportunity to worry about the damage we are doing to our beautiful earth. Too much heat, not enough water, it’s time to drop those selfish habits folks.

The last time I left the house and went further than the end of the drive was the 6th July. I dipped outside briefly in this time, not often, to check on my veggies and catch some sun but every single step drained me. I’ve been in bed for over a month, the longest most testing time I’ve had for years. I always knew my recovery would peak and trough but I thought at least that those long dark days of despair were much reduced. How wrong I was, it’s like my brain knows when I’m too comfortable and decides to remind me just how out of control I am. Maybe it’s a pattern that will repeat until I JUST BLOODY LEARN to stop dropping into old habits, or maybe, more realistically it’s the nature of living with a brain injury. Funny that I can STILL forget that sometimes.

So the past month has been spent in partial darkness, listening to paranormal podcasts, staring at the ceiling and crying. I was at points, at the very edge of my mind, hopeless, frustrated, scared, in that liminal space between living and ceasing to exist. I’m slowly surfacing once more, there’s a gentle coming together of mind and spirit that is one of the most hope-filled feelings I’ll ever experience. I thought that was it this time, I wasn’t coming back, so when you do the relief is palpable.

What can be done at these times? To be frank, not much. I accept what is happening and let it do it’s thing. I know it eventually passes. Aside from that I rest, I rest like a sloth taking some time off. This is all that helps, I am too fatigued to move so anyone who tells me I need to have  a short walk to energise myself is told in no uncertain terms to eff off. It’s more than enough for me to make sure I’m not peeing myself. I’ll say this louder for those at the back HAVING FATIGUE AFTER A BRAIN INJURY IS NOT THE SAME AS BEING TIRED. Oh to only be tired!

Now, taking time out from the world to fully rest is not ideal in some aspects, it’s a long time out of action, things go undone, life gets unlived and you become dissociated from everything. I didn’t know what day it was and when I looked in the mirror, it took me a while to realise that it was me looking back. Due to the insular nature of this aspect of recovery, I also don’t reach out to people. A time when I need it more than ever. There’s a few reasons for this, one being that I’m just too knackered to interact but also there’s the fact that there’s nothing anyone can do so I don’t want to bring anyone down with me. I realise these are just excuses I tell myself to avoid being vulnerable and believe me, at these times, I am massively vulnerable.

I ended up emailing The Samaritans, it was a strange experience. Useful but also somewhat robotic. It helped me through the hump but also made me think about how despite writing this blog and attending psychology I’ve still never shown the guts of all this. I’ve never fully raged about how devastating this TBI has been. Showing such depth of emotion can make people uncomfortable, they don’t know what to say or do and can often say things that make you feel invalidated so you end up not bothering.

I think next time I’m alone in the house I’m going to scream my lungs out. I’m going to shout every single swear word I know and expel that energy that is swimming around in my tummy and chest. The thing I have noticed about this layer being removed though is that my passion for music is back. I am more focused and determined to play guitar and sing again. More so than I’ve ever felt. Maybe it was just waiting in hibernation ready to be catapulted outwards.

Listen to: First Day of my life – Bright Eyes

 

 

 

 

 

2

“They say I got brains but they ain’t doing me no good”

I’ve not really been in a time or headspace to write any posts recently. Lack of inspiration, lack of energy and a tsunami of ‘life events’ have prevented me doing anything else.

Firstly it’s May and someone needs to tell the sun that. We are having small breakthroughs of nice weather punctuated massively by grey, drizzly, cold and miserable shite. This does not help my mood or my energy. At all.

Then there’s been family stuff, exam stuff, legal stuff and the biggest humdinger of them all was 2 months ago when our landlady told us with regret that she is selling the house we rented. As we all know with the ‘law of the way things are’ stuff happens in life ALL AT ONCE. Pre injury me would don my uniform and fire fight with the best of them, with a POW and a CRASH I’d see off all enemies and then go and have lunch. Post injury me and my brain just says “aw dude, this IS NOT what I’m down with anymore, I’m just going to go and nap”. My reserves deplete very quickly and I’m zombie braingirl shuffling through peril whilst looking for a hiding spot.

As you can imagine when we were told that the house was going on the market, I just crumpled, literally and figuratively. I sank to the floor and cried my little heart out. It brought out all my feelings of vulnerability, of feeling unsafe and at the mercy of the world. I was losing a magical place where I could heal and feel safe, a place that held me when I couldn’t hold myself and where me and Mr Braingirl loved enough to get married in the garden. I needed time to process and adjust, change is not an instant thing for me now, I have to wait for my brain and my energy levels to catch up. It took me about a week of feeling melancholy and paper thin before I could activate myself and then we had to solve the problem of finding somewhere new to live.

Whilst this was going on all the other stuff began to pile up too. Things that required instant action and an abundance of energy. Hahhaha yeah right. I tried to chunk thing up into steps like I was told but when everything needs your attention all at once it’s kind of difficult. So I did the only thing I could do, grit my teeth, rest whenever I could and get on with it. I was also heard muttering to myself on a regular basis “this too shall pass” this was the only way I could stem the overwhelm of everything in front of me.

So you find me here, in my new house after 2 months of packing and stressing and being sad. A new house that is in a lovely place with mountains and forests and a garden I can work in right outside the door. So moral of the story is even the tough stuff can sometimes be for the best. I tested my mettle in a big way and found some of that old fighting spirit I used to have in bundles. Don’t get me wrong. I’m exhausted and not sleeping very well due to not being relaxed and having my brain whizzing. It may take me a good while to get back on my feet again and there’s still stuff to sort out and things I have to do but I got a big shock and upheaval and I’m still here, breathing. My hair is messy and I’m a bit smelly but I’m here.

Suggested track: I jut wasn’t made for these times – The Beach Boys

2

Done and not done

This blog has been popping into my head the past week or so, I took it as a sign to pay it some attention. I haven’t written anything since May. I can’t believe how fast the past 3 months have gone. But as always with the brain injury clock it’s also gone really really slowly.  A contradiction that sounds daft but honestly, that’s how time passes for us who aren’t neuro typical anymore.

The past three months have also been a time of contrasts in my recovery.  I had a huge surge of energy that lasted a while around May/June then I crashed heavily for most of July. My depressive episodes have come and gone and I’ve spent some time hiding from the world when I got overwhelmed with everything. My time off Facebook however has been nothing but positive. I love not having it in my life anymore and I didn’t spontaneously combust without it!

There’s been some awesome stuff happening, we resuced a dog from a sanctuary (adopt don’t shop folks) and he’s a bit nuts and anxious and hyper vigilant (just like his human mother!) but he’s also fun and cuddly and smart as a whip. He’s my new best mate and thanks to Agent Cooper (we renamed him and it suits him so well) I’m embarking on another attempt at exercise. I missed exercising so much, I missed that it made me feel fit and strong. I got a hands free jogging lead for me and the dog and we’re now trying to follow a schedule of short runs until I can start to build up my fitness. This always brings with it a whole new wall of fear and issues to overcome around initiation and motivation. I’m great at ideas but not so great at following through. My brain is just not a fan of initiating action. That’s why I hardly ever cook anymore and when I do it’s simple quick stuff like mushrooms on toast. My lack of cooking activity is a task I really want to conquer, another day, another hill to climb.

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Just look at his face!

Another great thing is my enrolment onto Year two of my Horticulture course. I did 4 exams in my first year as well as attending lectures. I seriously never thought I’d make it through the first year, but here I am, one month away from starting Year two and hopefully qualifying. Then stuff gets real, I have to decide what I’m actually going to do with the qualification. I like the idea of Horticultural Therapy but that could all change by next year.

I also enrolled on a 6 week singing course over the Summer. I used to love singing but I lost it all post TBI. I wanted to give myself permission to use my voice again so did a quick course in Belfast which brought with it more challenges – fatigue, other people, driving around the city centre, going somewhere new and doing something very uncomfortable for me. But I loved it and I can now sing in the shower right from the centre of myself, belting it out with the best of them.

In amongst tears and fatigue and dog walking I’ve also had the first anniversary of our handfasting and had family come and visit. A challenging time but I definitely think I was more ‘with it’ this time than the last visit.

Along with the ‘done’ stuff comes the ‘not done’. I’m told to acknowledge my achievements and be proud (this is actually very hard for me to do) but there are always things that I desire. My guitar, my poor guitar. I still haven’t picked it up. I hate that it’s something I love but I can’t bring myself to do. There are fear issues around making my brain too tired but also the frustration of only being able to do five minutes on it before my brain does a loop de loop in my head and gives up. There’s also the fact that I’m starting again, from the beginning and that annoys me. Any guitar players who want to sit with me and kick me up the jacksy please get in touch.

Also not done is cooking, as mentioned above, no full on kitchen action for me. I used to be quite good at the old cooking malarkey, now it’s just a series of terrifying ingredients that I have no idea what to do with. I’d also like to learn another language. I have Brazilian Portuguese cds for the car but again, lack of initiation is my downfall. Maybe I’m setting the bar too high and need to start getting the basics of life into a routine again but I’m a dreamer and an ideas woman. Always jumping around in my brain from one thing to another of all these things I want to achieve. I reckon in my head I’m a renaissance woman, full of talent and creativity and the ability to do all things but in reality I’m brain damage woman, full of trauma and fear and slow neurons. One day the two women will be aligned and I will live happily somewhere between them both.

What are your big ideas that are frustratingly out of reach right now?