There’s been no activity on here or my YouTube for a while. I uploaded something there today. Turn it up and I hope you enjoy.
There’s been no activity on here or my YouTube for a while. I uploaded something there today. Turn it up and I hope you enjoy.
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
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
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.
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?
There’s a statistic from a 2013-14 study commissioned by Headway that states that every 90 seconds someone is admitted to hospital in the U.K. with a brain injury. Let that sink in. Every. 90. seconds.
That’s a lot of brain injury. Considering the complex nature of brain injury that’s also a lot of uncertainty, confusion and heartbreak. Let us also not forget the practicalities such as loss of employment, social lives and the ability to ‘contribute’. With no real formal prognosis, aside from the age old (and untrue) two year recovery timeline, there’s a lot to consider.
I’m going to be writing this from my personal perspective as a citizen of the UK but I will say that I have heard many similar stories from many brain injury survivors world over.
Firstly, right off the bat let’s get that very British habit of shaming dealt with. There’s this tendency to tell ourselves that at least we’re getting some help and should be grateful, irrespective of the quality of that help. There’s also the old chestnut ‘there are people starving/being bombed/homeless/non specific event that makes them worse off than you’ (delete as appropriate). Yes this sentence can get dragged out at most opportunities, so whilst acknowledging there is terrible stuff happening it doesn’t mean that we don’t get to discuss where we have been failed and the fact that these failures have far reaching implications on a societal level (think numbers of people affected) is pretty important.
The most common complaint I’ve heard from brain injury circles is the discharge from hospital procedure (or lack of it). I was sent out into the world after 9 days, 5 of those in a coma, with absolutely zero information. I had no idea that I’d even had a brain injury, I still to this day am unaware of which regions of my brain were affected. I wasn’t told I shouldn’t drive. I wasn’t told that there was any help help available should I need it and wasn’t given even the most rudimentary information about potential symptoms or even just a ‘make sure you get lots of rest’ on my way out the door. This, unfortunately is not just my experience. Why oh why would someone with damage to their brain, the most vital sensitive organ, be sent home with nothing? A universal leaflet with some contact numbers and a list of possible symptoms is all it takes. I’ll make one if you want.
If I had presented obvious physical or cognitive deficits I’d have been packed off to the big modern rehab unit and in all honesty would probably be fairing a bit better right now as a result. I truly believe my recovery was held back by lack of information and aftercare. I came out of hospital thinking everything was functioning so every subsequent symptom that manifested sent me into a tailspin because I couldn’t figure out what was wrong with me.
My recovery began in earnest when I empowered myself by reading what I could to help me understand my new brain and my new life. I was referred at the 9 month mark to a Community Brain Injury Team (CBIT). This is where I got an OT, a physio and a neuropsychologist. This is a NHS service and they provided me with some stability during a very difficult period of my life. They did some great work with me but if I’m being fussy there is some disconnect because of the lack of lived experience. This is something that can’t be helped, I don’t want everyone to acquire brain injuries so a better understanding can be achieved but if a system was implemented where previous service users could be paired with the newly brain injured and integrated into the CBIT this would be extremely beneficial. In those early days you just need someone to say that they understand and have been there too. Also not all regions have the same pool of health professionals, I’ve been desperate for a physio recently but my particular region (I moved 2 years ago) doesn’t have one so tough. Not the fault of the CBIT, they work with what they’ve got but I just wish there was more consistency.
Outside of the NHS there are a handful of charities that provide counselling, activities and support groups. On paper they are a lifeline and I have no doubt they have helped countless number of people but it is a narrow slice of the brain injury population that fit into these services. I am termed a ‘high functioning’ brain injury survivor, I present well, I’m articulate and mostly physically able. My issues are invisible. When I have tried going to activities provided by charities, I don’t fit in. There’s not much differentiation for the differing levels of ability, most charities cater for visible cognitive and physical disability and I get sidelined. I have been spoken. To. Very. Slowly. at some and across the board all organisations forget you had a life pre brain injury, they don’t look at the person you are aside from your brain injury, they don’t see the skills you have or the experiences that have shaped you because they just don’t ask. You are not an individual, you are a set of symptoms. It’s difficult not really fitting in to either world, the abled and the disabled. There are many like me who feel they have no home in the world of brain injury rehabilitation yet we are not catered for.
My main gripe with charities though is the absolute lack of communication. For some reason they don’t answer emails, they ignore you on social media. I’ve been waiting on a reply to an email I sent in September to a particular charity, I was enquiring about a service they offer as it would have really helped me. No response. It is not my job to constantly prompt them until they reply, so I did what I usually end up having to do and sourced something myself using my own energy and money (both of which I don’t have much of due to aforementioned brain injury!). There is one national well known charity (who I won’t name) that have THE most apathetic attitude. They are unwilling to share anything that may help others because it’s not their ‘brand’, they ignore my queries constantly on social media (maybe it’s just me they’ve taken against, who knows?) and never respond to emails. Feeling lonely and ignored is common amongst brain injury survivors and this lot just reinforce that. Come on folks, get it together!
I have found a common thread in the UK that services are a little more reluctant to use lived experience as a tool to help others whereas across the pond in America and Canada (particular shout out to Brain Injury Society of Toronto) they actively embrace survivor testimony to spread awareness of brain injury. We’re a little overfond in the U.K. of health professionals sitting together in big dusty rooms talking to each other but not including the people with the most experience in these discussion – us! This is why the slowly increasing push towards using service user voices to inform and improve rehab is a great thing (the Oliver Zangwill centre are great at this). We are dying to be heard, to get our chance to speak, use us.
Do you have your own experiences with rehabilitation? What helped and what could be improved?
Well fellow travellers, we’re here. I made it.
It’s anniversary day and if we are to pay attention to conventional timelines it’s been 4 years since my accident and my brain injury. I say conventional timelines because after brain injury time becomes somewhat irrelevant, it’s all wibbly and wobbly and can stretch and contract at will.
Firstly I wish myself a
I couldn’t forget this date even if I wanted to, my body reminds me. In the lead up to today over the past few weeks I’ve experienced the anniversary effect, a strange remembering by the cells in my body of some distant thing that happened that was traumatic and life changing. Trauma is a somatic experience and It’s not something I consciously switch on, it just happens. The past few weeks I’ve been exhausted and crying and extremely sensitive but these things aren’t something to fight they are simply what is.
I have found this past 6 months that acceptance is a lot more present than it used to be, there are still days (such as yesterday) where I want to scream and shout and pull it all out of my body, where I get angry and feel sorry for myself and grieve for what once was or could have been. This is especially present when doing something that I would have just got on with in the past that now gives me a pay off in days of sludgey, treacle-like, emotionally painful fatigue. An example being I started college at the beginning of September (studying Horticulture, so I can deepen my love of plants and nature), just 3 hours a week on a Thursday but by jingo for 3 days after I’m a mess. The difference being now, more often than not, I ALLOW myself to be a mess. Isn’t the messiness from where the beauty germinates and begins to grow?
As I sit here and write this and take a deep breath and try to think about what I want to say to encapsulate the past four years, there is so much contained within me that I don’t know where to begin. I suppose I just want myself and others to know that I’m still here. I still dance with the injury but after 4 years of lessons my rhythm is improving. I also want to give thanks, to my husband, my family and my brain injury community for being understanding, supportive and full of strength and love. I’m lucky. I know this. To have people around me who let me be, who let me expand and shrink and ebb and flow as I need to without looking at their watches or tapping their feet. For those of you who don’t have this support, I’m sorry and know that from the confines of the Internet I am holding the space for you should you need it.
I know there’s a part of me that’s lost forever, a reminder of that part, on occasion can break my heart into pieces, suddenly and swiftly, but I’ve also (mostly) said goodbye to her and let her disappear off into the sunset, her time here with me, for now, is done. I want to no longer talk of ‘battles’ and ‘fights’ regarding my trauma because if I’m fighting who am I fighting? Who am I hurting? Usually myself. There is no need to fight if I let my suffering go. A battle only becomes a battle if I make it so.
There’s still so much growing for me to do, I need to build trust again, in my body and the world. All of this was stripped away by trauma. I’ve not got my energy expenditure balanced yet, there’s still a lot of famine and feast in my cycles of energy. There’s a huge part of me resisting this because just existing isn’t good enough for me, I want to LIVE. But as with everything throughout this ride, everything evolves and has a lifecycle of its own, I’m letting resistance run its course until it morphs into what comes next. In brain injury terms I’m STILL young, there’s plenty more healing and shifting to come, a fact that both frightens and excites me. There’s also a potential official PTSD diagnosis to come, though giving me a label only helps when dealing with infuriating red tape but not so much on a personal level. Doesn’t really matter to me what this ‘thing’ I have is called, its impact and subsequent learning is dealt with the same way regardless.
As always I’ve chosen a song for this post and I’ve chosen ‘There is a mountain’ by Donovan mostly because it’s a cheery little number but also because with brain injury “first there is a mountain, then there is no mountain, then there is” this song speaks to me about perception and how magic can be found if we look at things differently. 4 years ago my mountain appeared, but through love, compassion, determination, hibernating, sitting with myself and searching and changing my view, the mountain is something that undulates gorgeously, something that becomes a beautiful part of the landscape instead of an obstacle to tackle.
(if an advert pops up at the start of the video, I do apologise. YouTube meh)
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.