3

Where do I go next?

Hello fellow headbangers and non headbangers.

It’s been a while huh? Or at least it feels that way as Winter often does. Slowly crawling through the cold dark nights until the faster warmer energy of Spring hits. February often brings a great feeling of hope for me as I feel new life begin to stir and start to think about my new season of seed sowing. My energy levels definitely match the season, I‘ve been half asleep for most of Winter, wanting to hibernate and sleep, a feeling we all get I’m sure.

Despite the urge to curl up I’ve been active when needed, I aged another year in January (I’ve started counting backwards now!) and just last week I did two more Horticulture exams, exams number 5 and 6 out of 8. I revised for two months for these exams because they were hard. Lots of Latin names and features of plants to learn. I ended up dreaming about trees and randomly had names of shrubs popping into my brain like intrusive thoughts whilst I was driving or in the shower. There has literally been no time for anything else whilst this was going on. No more multi tasking for me. One thing at a time please.

I only have 4 months left now until my last pair of exams and the end of my 2 year course. This has brought up so many strange feelings. I have LOVED doing this course, yes it’s hard, but I’ve loved it. I love the fact I’ve learnt about something totally new, I love that it meant I had to get out of bed, I love that I met new people and I love that it’s something that has felt so heart-full. Something that resonates with who I am. But this now leaves me feeling a bit in limbo, where do I go from here? When this is all over what do I do next? I know I want to continue with Horticulture but I’ve no idea how. There’s a level 3 course available but no one in Northern Ireland teaches it, it would mean distance learning via Edinburgh and hopping over there to take exams. A lot of faff right? I don’t want to learn all this wonderful stuff and just leave it lying dormant in my brain to eventually disappear.

Horticultural Therapy is a route I’ve considered but on researching it’s difficult to find just HOW you get there, no specified route, just like post-TBI life I suppose. I’m in equal parts extremely happy and grateful to have nearly completed the course but also sad and lost about it ending. This as always has parallels with how Brain Injury feels. You spend a lot of time wondering just where you go next or where you have gone or how you fit into society anymore. It’s a strange limbo too.

All this time I’ve been unplugged from what is deemed the accepted way of living, I’ve grown. Just like one of my beloved plants I’ve rooted and shooted into my own space. The further I go into discovery the more and more I know that modern living has got it all wrong. Believe me, it has. I’ve always known really but never been brave enough to step outside of it fully. My TBI gave me a chance to peep behind the curtain properly and show me what is acceptable to me to help me grow and finally learn to love myself. I never did, you see, always so hard on myself chasing perfectionism, chasing chasing chasing…….well nothing really because ultimately it was always here. As a kid I was totally uncensored and brave and in the moment then life knocked it out of me as it does with us all. The young me didn’t question about being ‘enough’ or wonder if so and so would approve, she did it anyway. I like to think some of that has come back since my brain got a factory reset.

There was also the realisation that I no longer think obsessively about what happened. There are weeks now where it doesn’t even enter my head. I can still get frustrated about my LACK OF ENERGY and my inability to sustain activity. Do I wish I wasn’t fatigued? Of course I do, but I am, so that’s where we are. I still have a cry at times but I don’t think about it every day. Therein lies acceptance. All this time I’ve been waiting for a whizz bang explosion of glorious acceptance showering me with golden light but instead what it did was slither quietly into existence. No light bulb moment just gentle, expansive post traumatic growth.

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So I reckon with lots of falling over and near drowning and howling at the storm I may have, just maybe finally learnt to surf.

8

We can’t take back, what is done, what is past

Did you hear the one about the woman who moved countries to start a new life and ended up nearly dying? Sounds like a book plot. Something I thought that never really happens in real life. Until it happened to me that is.

I’m three years into that story now, a story that initially felt it ended with that unlucky turn of events, a story that would no longer have exciting twists and turns and if it was a book it would be quite an effort to read filled with existential woe and misery. I’ll not lie, it was filled with woe and misery for a long time, it still can be at times but what I’ve realised now I’m at my THREE YEAR ANNIVERSARY is that my book is still being written, there’s still chance for me to have exciting chapters.

Tedious book analogy aside, I compare the woman I was three years ago to the one I am now and there’s a world of difference. If like me, you have an invisible condition you don’t often see the improvement especially when life can feel like one long drag, it’s only when I reflect back and compare that I see it. Three years ago I thought I’d died, if not physically; spiritually, emotionally and psychologically. I’ve spent a large proportion of the past 36 months mourning that loss. I still grieve in pockets to this day, grief never goes, it stays with you but becomes a transformative process as opposed to one that keeps you heavy and stuck. Boy oh boy grief is tough.

I’ve had a couple of appointments with neuro and psychology this past week and they both said how different I looked, not because of my Dave Hill (look him up youngsters) style fringe from my hormonal fringe trim rampage a few weeks ago, but something from inside, something that can’t be described. You know what? they’re right. Something has finally clicked whether it’s the beginning of acceptance, a peace within myself or a confidence in who I am now I’ve no idea. It doesn’t even really matter to me which of those it is I just know I FEEL different.

The new routine I’ve implemented has helped tremendously, the almost cessation of mind chatter is delightful and I’m having moments of true joy, they are fleeting but they’re there and I sit and appreciate them when they come. Finally, after years of stop-start, cyclical episodes of depression, grief and anxiety and a pervading sense of hopelessness I’m finally believing I have another life to get on with.

Thats not to say I’m ‘cured’ I never will be, this brain damage is always going to be there, it will sometimes knock me sideways again, it will sometimes make me sad, it will often make me exhausted and fed up BUT that’s part of me now and that’s ok. I’ve finally embraced impermanence, we are so fixated on control and micro managing and being completely sure that we have everything locked into permanence and we know how things are going to turn out, to deviate from that shocks us to our core, it shakes our world. I now live with my mantra ‘this too shall pass’ – everything does, EVERYTHING, including even us. I got to kiss my mortality on the cheek and it’s changed my life.

I have big plans for myself for the coming year (with a nod to knowing things may change) including starting a Psychology degree. I also want to see how far I can take brain injury awareness in the UK and Ireland. I have an absolute burning passion to reach out and touch (not in a creepy way) brain injury survivors and let them know those four simple words ‘you are not alone’. With this in mind I have started a brain injury support group on Facebook come and join us here. This blog will also evolve too, I’m not sure where yet but the possibilities are endless.

It’s also invisible illness week this week a time to remind ourselves of the battles some of our friends and family may have, but also the absolute strength and courage we chronies have to never give up, to never stop trying and starting each day with fresh hope even when we feel like we can’t keep doing it anymore.

I want to celebrate my three year milestone with a word to my younger self, here I am in this picture with a poem that really touches my heart. This small girl had no idea of what was waiting for her as she grew but I want to thank her for the resilience and courage and compassion she gave to my older self, she is unaware of just how much she’s helped me. She was free and open and full hearted. A girl with sunshine in her heart and wings on her feet. Thank you.

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And finally, I couldn’t do three years without including the other man in my life, so here he is (this song has got ‘acceptance’ written all over it, it’s very uplifting. Who would have thought that from Damien!).

4

Shakes me, makes me lighter

It’s just past Midsummer now. The longest day has been and gone and there was lots of reflection on what has gone and what to bring forth into the remainder of the year. I approached this Solstice with a bit of a spring in my step, I was moving more freely through the sludge and I attribute some of this to something I did for myself earlier in June.

Whilst researching trauma some time ago I came accross a PDF of a booklet called ‘Sky before the storm’ it was an easy to read piece of writing about the effects of trauma and how to navigate it. After I read it I noticed it was published by a charity that existed in Northern Ireland called The Wider Circle and that they specialised in helping to heal trauma. On further investigation I found out that they run a weekend retreat that you can attend and try to start assimilating your trauma story into your life. The retreat is free to attend and includes food and a room for the weekend.

I tentatively telephoned the number to request an application for a place on a retreat that was coming up in Ballycastle in June. I ended up crying at the  very nice lady on the other end of the line and kind of realised that yes maybe I REALLY need to try this.

Forms were sent out, filled in and returned and after some time I found that I had secured a place on the retreat. Now this is where the doubts and fears started to rush in. ‘Do I really want to do this?’ What if I can’t handle it?’ ‘Am I too ill for this right now?’ This was something I had to do alone (no safety person allowed!), something that was going to stretch me. But hey, maybe I needed a little stretching!

As time drew closer I was sent a pack with directions, housekeeping type stuff and the itinerary for the weekend, THE ITINERARY FOR THE WEEKEND! This is where my brain, to put it bluntly, crapped itself. The days were long and went beyond my normal bedtime, the time I jealously guarded because it kept me safe from, heaven forbid, feeling tired and being scared about feeling tired. I was starting to doubt the whole endeavour and told myself off for having grandiose ideas about healing.

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As I know by now though, healing is tough work. It’s messy, it’s hard, it’s scary and for it to work I have to push myself. So the day arrived and I set off up to the North coast in my trusty car and decided to just go with it.

I won’t go into too much detail about the nuts and bolts of the weekend as it is not my place to discuss the method used by The Wider Circle, I don’t want to send anyone off half cocked into trying it themselves and getting all tangled up. I also will make no mention of any other participants, this is highly private and confidential stuff. Suffice to say though, it seemed to…. well it kind of…. it worked.

There was a brief meltdown on the Saturday due to only getting two hours sleep the previous night and it making the day seem like an extremely long road to go down. This my friends though was where the biggest learning  occurred. I attended every last minute of the sessions, even the ones that went past my bedtime, even the ones where I was bog-eyed with fatigue and guess what? I DIDN’T DROP DEAD! There was a time I wanted to run away, the Lauren from eight months ago may have done just that. But I stayed, I tested my very limits and realised that my limits went far above and beyond where I had set them nice and low, in my safe place.

It helped that the setting was beyond glorious. We were right on the coast overlooking Rathlin Island.

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Everytime I got nervous, I looked out at that view, took a deep breath and realised that I’m a speck in amongst the vastness and beauty of all that is out there. This made my heart fill with joy to think that my trauma isn’t even remotely the biggest thing in existence. Perspective that I am only just coming to realise and accept.

I came away from this retreat lighter. Something had lifted. It was a simple process but highly effective. I had some integrating of healing to do when I got home but even now three weeks later I’m somehow less consumed by my trauma, I don’t think about it as much, I have a renewed enthusiasm for life and the drops, when they come, which they do, are easier to scale out of. I’m not saying this is an instant cure, do this and you’ll be healed forever. We all know by now recovery doesn’t work that way. I am however uplifted, hopeful, excited and most importantly more at peace. Also ‘tired’ is much less of a threat than it used to be, I think tired has been the place where I needed to stretch and learn.

The Wider Circle are a registered Charity and rely on donations to provide the wonderful work they do. Please take a look at their website here and donate or buy publications if you so require. Also if you are in need of some trauma healing in Northern Ireland please be brave and get in touch with them.

11

Cause my day was rough


Knackered, tired, worn out, fatigued, exhausted, weary, spent, drained.

All of these are words I use on a regular basis. When people ask how I’m doing the response is usually one of the above. Brain Injury and fatigue are common bedfellows. They are a frequent and inevitable Tango that dance through the daily life of a Brain Injury thriver.

Up until approximately 24 hours ago I was in denial about my fatigue, it has taken 31 months for me to stand up and say “hello I’m Lauren and I have a fatigue problem”. This may seem like a strange thing to say after so many posts on here mentioning my fatigue and it being such a presence in my life for so long, but yes there was a part of my scrambled egg brain that despite evidence to the contrary, decided that my fatigue ‘wasn’t that bad’.

I knew I got tired but what I didn’t see was just how low my baseline energy really was and just how much impact ANY activity had on my fatigue levels. After another particularly bad run of what I termed relapse, the light went on that all these episodes were fatigue related and it’s about time I started to take it seriously. The fatigue presents to me as tinnitus, glassy eyes, emotional lability (no control over my emotions which generally leads to crying spells), low energy, helplessness, ‘what’s the point-ness’, aches and pains, craniotomy scar based thuds, zero motivation, zero excitement, fear, anxiety, dizziness, jitters, nightmares, sleep disturbance and all round just damn well fed up. Trying to do anything with all that going on and I can understand why life becomes a drag. When the fatigue is below the base line it has a knock on effect to everything else. My anxiety and sadness worsen, my apathy digs in and all becomes lost once more. This is why it’s so important to manage it more effectively.

Sometimes I can get up, dress, shower, go out, study, read, chat, write blogs, garden, walk, engage, be happy

Sometimes I can get up, dress, shower, go out

Sometimes I can get, up, dress, shower

Sometimes I can get up, dress

Sometimes I can get up

Sometimes I …………

I’m basically having to go back 31 months and start again, look at this fatigue business with fresh eyes. I have to accept even on ‘good’ days my starting level for energy isn’t actually all that high. So from waking anything I do depletes me, that includes brushing my teeth, showering, walking up and down the stairs, surfing the net, talking, daylight, most sounds, reading, thinking, driving and well, ABSOLUTLELY EVERYTHING. Add to that any outlying events like visits to cafes or from family and the fatigue becomes overwhelming. My family visited a week ago and I spent a lot of it crying, fun eh?! Sleep doesn’t ‘top up’ brain injury folk as much as everyone else so even a good sleep doesn’t stave off the effects of fatigue for too long, it can certainly make a difference but the fatigue is insidious and creeps slowly in. This has been another huge lesson for me, I was floating around thinking ‘sure, I get tired but going upstairs a few times doesn’t affect me, nosiree’  and the old favourite ‘I just need a few good nights sleep’.

In most articles I’ve read about fatigue after brain injury they mention two types – mental (confusion, word finding problems, not following conversations) and physical (tired aching muscles, no energy to move). I’ve also seen Psychological fatigue (depression, anxiety, ‘I can’t do this anymore’, no motivation) mentioned but I would also like to add a fourth – hormonal. Hormonal fatigue is when I’m pre menstrual, I used to get tired pre brain injury, now it’s like a whole new level of soul weariness. Looking at all these factors it’s no wonder I’m worn out!

After finally reaching the point of being tired of being tired I’ve decided to look fatigue in the face and take it on. Properly. My first task is to embrace it, I have to acknowledge its existence before I can change it, so with some resignation I am willing to accept I’m not the same as I was. Secondly, I’m looking for triggers, what drains me the most? Are there times of the day it gets worse? Also what signs do I need to watch for that show me fatigue is on its way? I’m looking for the signs then taking myself away for 10 mins to breathe and recharge in the hope that little and often works better than the famine and feast I’ve been having with my energy levels. I also have a fatigue diary where I write everyday what I’ve been up to, how my sleep was, any signals of fatigue and any rest I’ve taken. This will help me root out the big energy drains. To help me in a more kinetic, visual way I’ve got a chalkboard up in the kitchen with batteries drawn on it that get wiped as the day progresses so I can see my energy running down and know how much is left in the tank before I have to stop.

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I’m hoping that implementing new strategies will lift some of the fog of fatigue and enable more consistent activity. I’ve been told that as with most things in brain injury it won’t be a straightforward process, it’ll be up and down and backwards and forwards and some days will seem like mountains. This time though, it’ll be a mountain I can finally, slowly and steadily get to the top of.

Do you have fatigue problems? What strategies do you use to help?

8

I will write my words on the face of today

I’m 2 today, now to look at me you may think I’ve had a hard life if I look like this at 2! Well, I’m celebrating (if that’s even the right word?) the 2 year anniversary of my brain injury today and I want to dedicate this one to you, yes you.

This is the face of a survivor

This is the face of a fighter

This is the face of pain and sorrow

This is the face of joy

This is the face of loving and being loved unconditionally

This is a face that has felt hopeless and lost and alone

This is the face that has seen and camped in rock bottom canyon

This is the face of giving up and starting again

This is the face of a newborn

This is the face of a traveller

This is the face of a learner and a teacher

This is the face of feeling broken beyond repair

This is the face of strength and courage

This is the face of grief

This is the face of immeasurable fatigue

This is also YOUR face

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To all you survivors, adapters and travellers out there. People who have journeyed through brain injury or loss or mental illness or anything that required you got up and fought. I have cried with you, grieved with you, laughed with you, fallen with you, given up with you, stood, sat and lay down with you, picked myself up with you and got through each day with you.

I AM YOU. YOU ARE ME.

And most importantly I completely and utterly salute you my friends, you’ve totally got this I promise.

2

Just give me time

I’m not a particularly festive soul, Christmas and New year are not that special to me. I always seem to find them anti-climatic and the weight of expectation that you’re magically going to wake up to a different you, a different world on Jan 1st is always disappointing. Some may say I’m miserable, I just think it’s just not my bag and that’s ok.

My 2013 has been a mixed bundle, I’ve made some progress but also had times of feeling stuck and helpless in this new world of brain injury. I could make a massive list of resolutions for the coming year but if I’m honest I just want to recover. Properly.

It’s a small yet massive wish as TBI takes it’s own sweet time, I’ve had to learn to try to let go, to try to find that elusive ‘acceptance’, to find new paths and new ways of thinking about life. I’ve lost a lot of my independence and every day isn’t easy but I’m still here fighting.

There’s a saying that if you feel like you’re going through hell, keep going. Well it’s bloody hard sometimes. My PTSD can get triggered by operations and hospital visits (not even mine) and the recent news about Schumacher I have been avoiding to prevent re-experiencing my trauma. Yet it’s still not understood by others why that would still make me feel bad. Why should they understand? After all, their experience is totally different from mine. I am moving towards trying not to be triggered by such things but it takes time. I work hard every day, you can’t rest on your laurels with this. The body stores trauma in the mind and the muscles, it shuts it off initially so you can cope with the immediate impact but it’s all stored in there ready to come out further down the line. I have days where I tremble all day or dissociate or panic or cry it out and I have days where things seem ok. It’s all part of the process. BUT that process takes time, lots of it.

A man called Dr David Bercelli says that logic never resolves trauma, he’s right, you can go over and over it in your head trying to find sense but there is none. Not one bit. It’s overwhelming and unbearable and you go to some very dark places. He says it terrifies us by “unveiling the fragility, precariousness and vulnerability of our humanity, it redefines us and tears at the fabric of our identity”. But and here’s the hope, he also says that “we are then forced into a new way of life, we DO come out the other side but in a new expanded experience of life with maturity and compassion”. I am clinging on to this belief to help me through the tough times.

Coming out the other side, that’s my wish. I think I’m 1/2 of the way there but this last half is the hard work, it’s the exploring the dark corners, facing the enemy right in its fat face knowing that it’s going to hurt but doing it anyway.

So I wish you all a better, brighter 2014 but don’t worry about making too many resolutions and certainly don’t worry if you don’t manage some. I would prefer to say dream don’t plan. Dreaming means your mind can take you anywhere.

Remember you can plan all you like but life sometimes has other ideas.

 

6

Latch onto the affirmative

I’ve started going to a Brain injury Support group, its a small group but after the 2 meetings we’ve had so far its been a great source of support and gives me the chance to talk to other people apart from myself.

We were given homework after our first session to think about change. People often say after a TBI that they feel somehow different or that their identity has changed, we had to come up with 2 ways in which we have changed and 2 ways in which we have stayed the same.

I found this incredibly difficult, it would have been easy to reel off the negatives; anxiety, isolation etc but I wanted to try and find positive answers to this. If you’d have asked me a few months ago I would have said that everything has changed, I’m not the same person and never will be. But whilst reflecting on the question I realised something, the way I think about things may have changed, there may be a skew in most things I think and feel but fundamentally, deep down, I’m still me, I’m still Braingirl. Now this was a revelation to me because everything felt so, well, different.

One of the things  I settled on was the change in my attitude to what is important, I used to run around all over the place doing everything for everyone and never just take the time to ‘smell the roses’. But after a year of HAVING to sit with myself and be still, I now appreciate it’s the things in life you miss whilst rushing around that matter. Birds singing, rain on the window, love, friendship, you get a better appreciation of the simple beauty of life. It’s about filtering what is important and choosing what to get angry about. ‘Don’t sweat the small stuff’ is a cliche but it’s true. When it comes down to it does that red light or that person holding up the queue really matter? Truly they don’t. What’s the rush? Does it matter?

This train of thought led me to think about happiness. I’ve read a lot about gratitude and happiness during my recovery and I’ll be honest it was a bit of an epiphany. Most people think that if they line up the ducks as it were that they will somehow achieve ‘happiness’, as if it’s a prize at the end of the game. Be honest, how many of us say to ourselves “if only I can get this job/promotion/car/holiday, I’ll be happy” we all do it. But what happens when we get that thing we were aiming for? We might feel temporarily elated, satisfied but then the voice starts again, “I’ve got the job but I still don’t feel quite right maybe I need to buy a house”. So on and so on, life then becomes a rushed pursuit of something that we think is ‘out there’. I had an income, a house, a marriage, a busy social life but was I happy? No in all honesty, deep down I was not. I still felt on the outside edge of everything, never really fully engaged.  I’m sure there are many rich miserable people who can’t understand why the acquisition of ‘things’ hasn’t helped them. I’m not saying you cant be rich and happy, of course you can but it’s not coming from what you have it’s coming from within. Same goes for not having much either. I’ve got nothing anymore, I’m having to start again and I feel I can be happy with much less than I had

Let me let you in on a secret, a secret that completely changed the way I think. Happiness isn’t out there, it’s within us. Happiness is a frame of mind. If you constantly think sad horrible thoughts how do you think you are going to feel? That’s right, sad and horrible. I’m not saying it’s easy to attain because it involves changing a lot of entrenched thinking but it’s there ready to grab if you try. That’s not to say you will never be sad or scared again, you will because this is human nature and if you don’t get the bad how do you know what the good feels like?  BUT you will handle things better, you will be able to not let things consume you as much. You will see those thoughts for what they are, just thoughts and let things float by.

My good days are starting to outnumber the bad at last. The bad, when they are there, are very bad but they give way to better days of peace and acceptance.

I find myself wearing this more frequently

the bra of hope

Let me know your positive outcomes from what initially felt like the end of the world.