0

TBI and fatigue (video)

Hello all,

A new video up about fatigue. What it feels like, what it looks like and how to assimilate it into your life (hopefully).

 

 

 

Advertisements
0

Braingirl bonus #4 (second attempt)

Hello everyone,

Another video, this one shorter than the last as it’s a Braingirl Bonus video. I introduce a special guest and waffle on about some changes I’ve made.

As always, enjoy!

 

 

 

4

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.

E6D5B057-C7FC-4A7A-A21F-77254CCEC318

4

I think that’s well understood

I didn’t want to write this, I didn’t have it in me. My brainiversary blog posts are normally fairly upbeat affairs with a nice message and a catchy poem or quote. But in all honesty since July I’ve been feeling anything but jaunty. I didn’t really want to start my next year of recovery on a bum note but here I am.

I then realised that it’s ok to not be ok and it’s even more ok to express that. There are loads of us who are not ok right now. To pretend I’m something that I am most definitely not right now does myself and others a disservice. I’m not entirely sure where this post will end up, so I’m just going to write and see what happens.

The duvet of safety has become my home once more as about 95% of my time since July has been spent underneath it, gestating or incubating or whatever else is boring and still. I’ve got up when I’ve needed to attend something such as my PIP tribunal (which incidentally, I won) but gone straight back to doing my best impression of a plank of wood as soon as I get home. Even the sweet victory at my tribunal got buried underneath the layers of bleurgh that currently hover around my atmosphere.

There are many reasons for the reappearance of my ennui and despair, some that I can put my finger on, others that are hidden within the folds of my temporal lobe (some brain lingo for you there). One of the obvious reasons is that my brain is damaged, mood change 101 right there. Other reasons are the upcoming anniversary that always chirps in, a longer than usual bout of fatigue and a pervasive feeling of stress that is hanging around. There are other reasons that are making me particularly vulnerable due to factors mentioned above. This is stuff that just makes me break inside and feel impotent because I can’t help. When I’m low like this my shell is fragile and I just can’t cope with anything, I know all the advice about worrying about things only within my realm of control but there are times such as now when my faith in myself and humanity goes missing.

I feel so trapped at the moment, trapped by my body that won’t do what I want it to do, trapped by the ignorance and stupidity of others, trapped by society, trapped by the benefit system, trapped, trapped, trapped. There just seems to have been a huge tidal wave of what I will call ‘shite’ that makes my heart hurt. Are you ready for the list of ‘what is currently making Braingirl angry and sad’? Ok, here goes; The selfish actions of farmers in Hurricane Florence territory who despite having 2 weeks warning about the flooding, decided to lock all their animals in cages and leave them to drown in the flood (current estimate is 3.4 million lives) all treated like commodities they can claim on the insurance because we think we own sentient creatures. Hambacher Forest, a 12,000 year old forest in Germany, home to 142 species regarded as important to conservation, casually being torn down right now by a company called RWE for coal mining. The badger cull being rolled out across the UK, where farmers are being offered money to catch and shoot badgers in the head for no concrete scientific reason. Kaporos festival in New York, basically a chicken slaughter festival where thousands of lives are taken and dumped on the streets all in the name of religion. Then finding out 5 species of bird have recently gone extinct in the Amazon due to clearance for animal grazing for an effing beef burger (I’m looking at you MuckDonalds and you can shove your new vegan burger up your golden arches). If this doesn’t make you angry then you’re not paying attention.

This my friends was all in the month of September. This stuff goes on and on and on and yet we still as a society do absolutely nothing (and those that do get the most hideous abuse on social media by people who think ‘bacon tho’ is a clever and intelligent response to a call for compassion). Well I’m fed up mateys, totally fed up. I want to join the Hunt sabs but I can’t, my brain won’t let me, I want to go to protests, but I can’t, my brain won’t let me. I want to liberate animals, but I can’t, my brain won’t let me. All I can do is the moral baseline of being vegan and supporting those that CAN do what I can’t. I can’t be silent anymore. If you’re on Instagram follow @thesavemovement @animalliberationfront @unoffensiveanimal @undergroundbadgersyndicate show them some love and support for being on the frontline.

I massively digressed there but after more than 2 months of inertia and frustration getting that out was very therapeutic! Where do I go from here? I try to reason with myself and give myself that pep talk about feeling what I feel and being kind to myself and all that jazz, so here I am, with you, feeling my feelings. Despite everything I am usually fairly upbeat and progressive, I usually have an inordinate amount of hope in the goodness of humans but right now I want to give everyone a bloody good rattle, WHAT IS WRONG WITH YOU!

I went to my homie (am I too old to say homie?) Rumi for some good talk, here’s what he told me.

D4C4FA60-40EA-4ED9-B7BB-7B7B1BDB615C

How appropriate for just after the Autumn Equinox, dead leaves a-dropping all over the place. I suppose for my 6 year brainiversary it’s time to let the dead leaves drop, time to drop toxic people, toxic mindsets, toxic habits, drop sitting in my own insecurities about how I’m received and if it offends people and start to speak my truth. I need it and my furry, feathered and scaled brethren REALLY need it. Face year 7 in its face, stop stirring your own stew Braingirl and rule your world from your bed if you have to.

P.s. A small candle of good news this month was that I passed my final Horticulture exams with a commendation. All that work was worth it.

This song has been percolating around my noggin for weeks, here, you have it.

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