2

video#3 TBI and Grief

My next video in the TBI and … series. I managed to do this without mad lip-synching problems, equipment malfunction or grumpy thumping rabbits. Hooray!

Anyway, please take a watch and comment below. Share too if you fancy!

Advertisements
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.

image

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

Make it go away

It’s Monday morning, it’s dull and rainy and I’m tired. The Spring, like my mood has gone a shade on the grey side.
I’ve been sat up in bed today on my Twitter and realised I’m in that lovely place again. I’m setting up camp in hopeless and lost town. I’ve no idea how long I’ll be here for but all I know is that it feels horrid and I seem to grind to a frustrating and upsetting halt.

There is usually a trigger to my jaunts into this place and I have to sit and think about what has caused it, it’s usually something that occurred a few days earlier and seemed fairly innocuous at the time. I had a busy (for me) old time of it last week, I was on local radio and TV for Action for Brain Injury week. I had to go to the BBC here in Belfast and do a quick interview and then get filmed at home. It was an early start but I pushed through even though I knew it would make me fatigued because it was important to spread awareness. I was very pleased to have done it and it brought a little bit of excitement into my day. That day I also had another appointment later in the afternoon to go to so by Tuesday evening I was completely done in.

Add to this my period (sorry) it’s not something often talked about in brain injury circles but when you do mention it, you get lots of ‘oh my god, YES!’. The menstrual cycle, often a time of mood swings and cravings becomes ‘Period Part 2: The Revenge’ when added to a brain injury. I get deep sadness and also fatigue on top of tiredness on top of fatigue. I also get more aches and pains in my surgery site at this time which gives me lots of nerve pain and thuds and pins and needles, these make me anxious. As a result I often become completely immobile for a few days. It saps my will and my precious energy. I cant even begin to describe it adequately but again, unless you experience it yourself you’ll never understand. It’s not I assure you, a very fun time.

So yes, I’ve been a sobbing tired mess for 4 days. But there’s been something extra this month and I couldn’t figure out what it was, then the penny dropped

penny droppedI had another epiphany this week, one that sneaked in quite quietly but means I have to readjust myself once more and this readjustment always unsettles me. I have just started accessing a vocational service called CEDAR, its a service to help me get back into education or employment as well as finding my way back into my hobbies again and it was during my meeting with them that my mind shouted at me “YOU’VE GOT A BRAIN INJURY!” well yes, you may be thinking dur, no surprise there, but let me explain.

I have up until this point thought ‘oh, I have a brain injury’ now I KNOW I have a brain injury. I have rather foolishly been thinking it happened to me, but I’ll be the one, the one that it didn’t affect in any way, the one who will be 100% better. Well sorry sunshine, but this aint necessarily so! I am a service user of agencies put in place for people with a disability, I have a disability, I finally realise that now. I have a disability that makes me sad, tired, unable to do what I used to do and here’s the clincher, IT WILL ALWAYS BE THIS WAY, it’s going nowhere. It makes me have to look at what I want to do and see how I can make it manageable, is it even a possibility for me anymore? This made me incredibly sad and feel defeated. This has been the cause of my retreat into myself again.

As always though, I sit with these feelings, I accept them and I start to see the other side…. eventually.

For now I am sad, frozen in bed, I am tired and I am hating my injury, hating how it’s changed my life and crying for my loss again. The grief in full swing once more. THIS IS NOT EASY.

I know this song is on a very specific subject but there’s a lot in it that resonates with me right now.

2

Blackbird fly

Happy 2014 everyone!

In the time since I last wrote I’ve grown another year older and experienced another turn on the merry go round of mental health. I have been pondering this post for a few days as there were a few topics I could have written about and seeing as though I’m kind of on an upswing right now it’s often harder to write about the BAD THINGS so I thought I’d look at a subject that has come up many times, not only to myself but a common story heard across the board from TBI survivors. It is ‘things I was/was not told about TBI when leaving hospital’ AKA

the listThings I was told when I was in hospital

You are in hospital
You have had brain surgery

and erm…… that’s it!

Things I wasn’t told and would love to have known in hospital

What had happened to me
What my operation consisted of
What healing FEELS like (that zaps, tingles, aches, tenderness and tightness are all normal)
That depression will frequently swing you by the ankles to the edges of your mind
Ditto for anxiety
That you WILL grieve and that you should let that happen (crying every day is ok)
That you will experience fatigue like you’ve never experienced before (think batteries out and staring at the wall)
That you will be in and out of your GP like a demented jack in the box convinced you are sick sick sick
That you wont sleep properly and dream for MONTHS
That it may be worthwhile getting a hormone check as your Pituitary gland may go wonky
That you will feel very isolated and lonely
That it takes an inordinate amount of time to heal
That there is a very capable and amazing Brain Injury team you can access via the good old NHS (I found out myself after struggling for months with all of the above)
That you can access Brain Injury Matters for all manner of help

but most importantly that all of this is NORMAL and YOU WILL BE OK eventually (I can’t state this enough!).

This is just my list, there are many people with similar lists, they may be longer or shorter or contain a myriad of other stuff. The thing we all seem to have in common is we knew NONE of this as we embarked on our new journeys. I’m not writing this to scare fellow TBIers, I’m writing this to prepare you. To show you the reality and enable you to get your tool kits ready. I’m lucky to have an awesome and understanding GP who sails through this with me. A great psychologist and assorted others through the Brain Injury Team. My point is, if I had been told even just some of this on release I would have maybe dealt with things easier and they wouldn’t have reached the boiling point they did. I really do think having Brain Injury survivors in hospitals to talk to patients, to put together an essential ‘survival’ leaflet given to people on their way out of hospital would be an enormous help. I know Brain Injury is different for everyone but something just saying you MAY experience these things is useful.

I don’t want this to be just a negative post though because there are positives, like being eternally grateful for the surgeon and the subsequent stream of help via health professionals I’ve had since. But more importantly the lessons, the things that can only come from something like this.

Lesson 1

You reach a stage where it does no good to talk and think about it anymore, this is a good stage, it’s a moving forward stage and it’s a great feeling.

Lesson 2

I learnt just how strong I really am. You get many points where you feel your reserves are gone, the battery is dead and then from nowhere an extra tiny bit of ‘something’ gets released and you get through whatever it is that is making you want to curl up and go away. This is endless and boundless and is your greatest ally. It’s also something I am immensely proud of, strength and courage are not to be underestimated and even when you don’t feel strong and courageous – YOU ARE!

Lesson 3

There are certain things that just don’t matter anymore. They will be different things for different people. But I no longer worry about money or status or careers. They are piffling little insignificances and I feel liberated as a result. I know what I DON’T want anymore.

Lesson 4

Life is ultimately pointless. It really is. Honest.

But the difference between worrying about that and accepting it with a smile is THE most freeing thing I have ever gone through.

9

Behind from where we came (how I began moving forward)

WARNING: The first set of photos on here will be post surgery, whilst not particularly gruesome they may not be your cup of tea or be a potential trigger. So please do just scroll past if you need to. The rest of the pictures will be safe.

The 1st of October didn’t exist last year, I was unconscious, I could have been floating about in space for all I knew. The next 3 or 4 days also didn’t exist. So whilst everyone else was rushing around, not sleeping and worrying, I was blissfully unaware of everything. Maybe that’s the best way. It does mean however that I have a bit of a memory gap. But anyhow, for an idea of how mad this all was here’s a few piccies of the first week (look away now if you need to).

head head2This was after various tubes had been removed. What a scar eh?

So as you can imagine when I woke up from my extended sleep I was pretty surprised to find myself in hospital. I had no idea why I was there or for how long I had been there.

About 9 days later I was released (after much grumbling by me about the food and getting needles stuck in me all the time) and it was at this point I began thinking I was nearly better and that all I needed was a few nights sleep, even though I was clearly very poorly.

home

Anyway, this thinking continued for about 7 months, I attempted to go back to work, I attempted nights out and generally thought that all was right with my world.

Then came the stage you have all read about, denial slipped away and I was bereft. I began to face what has been the hardest thing I have ever had to deal with in my life. EVER. You all know this story by now but it was something I was not prepared for. If there’s one thing I would advise out of all of this it’s about being prepared for the psychological impact of trauma. It is a killer. I have had days where I just wanted to curl up and die because it was too painful to bear but hopefully this is something I don’t have to deal with so much anymore. I do worry about the impact of another trauma arriving on the back of this, I’m not sure if I’m strong enough yet to process anything else so I’m crossing fingers for a smooth ride for a while.

Anyhow, back to the point of this post. Moving on, acceptance, closure whatever you want to call it. My aim for the anniversary of my injury yesterday was to stick a pin in it, to use it as a marker for something new. People who have suffered TBI often talk about being ‘reborn’, I understand this a little now.

Mr Braingirl took the day off work and after a potentially triggering hospital visit in the morning (which is a WHOLE other story) we set about merging the past year with a new reality.

After reading lots about grief and recovery I decided to do a few symbolic acts that whilst on the surface may seem a bit trivial and silly, they represented the old me, the wonky brain and a commitment to reclaiming my life. The past year was hijacked by this injury, it stole my life, it stole my joy, it stole me.

One thing I did was to get things that represented the accident and my life before it and burn them.

fire2These were things to do with Roller Derby, things to do with being sick like get well cards. Don’t get me wrong I don’t dislike roller derby now, I burnt these things with love but I needed to create a healthier relationship with what once was my saviour and had now become something I was very afraid of and at one point hated.

fire

Then we got a chocolate cake and stuck some candles in to celebrate a new ‘birthday’.

me and IanThese small acts, so simple and easy, lifted what had become the third wheel in our life, the passenger we carried whether we wanted to or not. I’m not suggesting life is ever going to be the same or that I’m completely better but I’m getting there and that’s enough for now. The TBI will always be there, I’ll always bear the battle scar but it’s no longer the engulfing shadow it was, instead of blocking my way down the road it will silently tip toe beside me.

Groovy Bruce the rabbit is a welcome and much cherished addition to our little family. He has been great therapy, It gave me something that I HAD to get up for every day. Here he is getting a cuddle.

me and GBI would recommend doing a ritual (and a fluffy rabbit) for anyone who is ready to start letting go. It helps to put a bit of a full stop on things.

My next mission is to start getting my energy back and do something for a Brain Injury charity. I’ll let you know when I think of it. I also want to retrain as a Grief and Trauma Counsellor.

Finally (at last!) I just want to say a massive

thank youto everyone who has been there with real and virtual support. Special mention to Diana who has been there through the very dark times and advised, supported and reassured me whenever I needed it (even though she is in San Francisco). Also my family who despite being over the Irish Sea and the Atlantic (Coppard family!) have given me the space and time I’ve needed to find my feet, space to be sad and gently encourage me to look for Lauren again.

And obviously Mr Braingirl, Ian, without whom I simply would not have survived.

8

Dug from the rubble

It’s 11 months today since my operation. Nearly a year has passed, this is a reason to rejoice, it means it’s getting further away but its also a time to be aware. Anniversaries of such things are often triggering and can cause pain.

I am very deep into the grieving process now. I am finally getting angry, I hate my TBI, I hate what it has done to my life and I hate what my life has now become. I hate that my days are long and boring and sad.

The journey of recovery is not simple as I’ve mentioned before, but the bit that hurts like a very deep soul pain is the re-emergence of symptoms you thought you had dealt with. TBI is the gift that keeps on giving, you don’t get anxious or depressed once, deal with it and hey ho off we go! These states can return out of the blue and as many times as they see fit. You don’t peel a layer of the onion and get a nice fresh one until you eventually reach the middle. The TBI onion has no middle, it just keeps peeling.

onion of recovery

I’ve just come out of the tail end of a crippling bout of anxiety. It lasted about 6 days. I would wake through the night scared. I would wake in the morning already shaking and sweating. I was full of fear. Scared of ‘out there’, something intangible I couldn’t put my finger on but I absolutely knew it was out to get me. I was exhausted. I caved and went to the GP and got some magic tablets. You see TBI is not just the injury, it’s the PTSD, the grieving process and the depression. A mixed bag of fun that stops you just bloody well getting on with things.

I’m currently in a crying phase of grief, a full on all out display of ugly face blubbing. It’s good to release it, I need to, but it’s inconvenient and it hurts and it’s the loneliest thing in the world. The crying releases the grief so I shouldn’t suppress it and it can be seen as a positive thing but why does something positive have to be such a pain? Anything positive about this process hurts, it’s gut wrenching and hard.

I’m feeling sorry for myself right now, I am at a point where I can’t see a way through and I feel that I’m going to be ill forever. The only thing I can do is tell myself I’ll be ok (even if I don’t believe it). Otherwise I may just give up.