2

I’m ever so lost

I’ve never really been one for fashion, clothes have always been functional for me. They keep me warm and allow me to go outside without being arrested. My wardrobe is firmly stuck in the 90’s (think jeans, t shirts, hoodies and converse), I sometimes get yearnings to be a bit more stylish but they usually pass. I have noticed though that since my injury I became even less concerned about how I look. I spent a large part of the past 17 months living in pyjamas, baggy t shirts and slipper socks. Getting dressed was a function of attending appointments and the occasional jaunt to the post office, so as you can imagine I just threw on whatever didn’t smell bad and put a coat on over it.

The more I have swum up to the surface though the more I have realised that it was just another part of my withdrawal from the world. I felt like rubbish and I wanted to hide so why bother thinking too much about my appearance? It didn’t help that my energy was low and my hair was wonky, I didn’t want people to look at me – my transition to bag lady was almost complete. The clothing was just a part of it though, it was more about how I felt about every aspect of my life. I had been wrenched out of my routine, put into freefall and had begun an existence outside of ‘normal’ society. I felt lost in many senses.

lost

I began to question everything, who I was, what purpose I served, where did I go next? how would I slot back into the real world? WILL I slot back into the real world? It’s a very confusing dizzying feeling not knowing who you are, it’s also, much like everything else about this journey, a very scary one. You exist on the outside for so long you begin to wonder if you know how to function anymore. When I am finally ok to work again how on earth will that go? I know I want to do something drastically different but it means retraining and starting again, I am grateful for the refocus that the injury has given me because I always kind of drifted before this, I went through a variety of unsatisfying jobs because that’s what you ‘did’ in the real world. Earning money was put at such high priority that you were considered a bit useless or weird or invaluable if you couldn’t do this. Well I can’t earn money at the moment, I have to rely on the welfare state to eat and pay bills and the current political rhetoric is that this makes me less than human, less than useful. I try to ignore all that though, I am useful and I can continue to be useful in my own way outside of the rat race. In fact I don’t ever really want to step back into it unless it’s on my own terms. No more slogging in a job that makes me miserable just to seem of value to people who I don’t even care about.

It’s not just in employment, it’s other facets of myself. I have had to reassess EVERYTHING. Look at my relationship with others but also with myself. I’m being totally honest here but I didn’t like myself very much. I was sad and lonely, I still am in some ways. I would often use words about myself like ‘useless’ ‘unlovable’ ‘stupid’ ‘worthless’ and that I would never amount to anything. I would do this so frequently that it was an automatic thought and so of course this is how I felt, we all know how thoughts and feelings link.

What happened is that I had the brain injury, the body and soul rocking trauma and this triggered years and years of negative self talk and things I was told as a child by significant adults and being led to believe that feelings are wrong and need to be suppressed and this my dear reader is at the root of my depression and anxiety right now. It’s been easy for me to pin it on health anxiety from the injury and say I’m scared because x happened so I need to have control over my health but it’s this ingrained need for control coupled with my impossibly high standards and me being my toughest critic that has created this perfect storm.

My core beliefs are difficult, ingrained and scary to face, so what am I doing about this?

Firstly, I’m trying to acknowledge that I’m smart and kind and sometimes funny and that I don’t have to make people like me by doing things for them. This is hard for me, my whole self esteem rose and fell on other peoples opinions of my worthiness. When people didn’t return my care or didn’t bother getting to know me properly, it cut me very deeply. I felt it was a slight on my person. Since the injury I’ve been physically unable to run around after everyone else, this has been a HUGE lesson for me, a difficult lesson to suppress my natural urge to people please and I have to see if people like me for…..well…being me.

The answer also lies in the simplest but most difficult thing I’ve ever tried. I’m acknowledging my feelings, I’m trying to FEEL them no matter how tough they are. I’m trying to remove the labels I’ve attached to them for years. Sad isn’t ‘bad’ and happy ‘good’ they are both just feelings. So if I have a sad day or a low day I’m trying to not write the day off as bad, it just ‘is’. I let the feeling be, I say hello to it and then I get on with things. You see when I was giving these things a platform or trying to fight them off because they are ‘bad’, they just clung on harder and overwhelmed me. If you just let them exist within you they go quieter and become a mere grumble. Feelings and thoughts are just that – feelings and thoughts, they cant hurt me. In fact the only thing that’s been hurting me so far is me. I suspect this is true for a lot of us.

I can see you sat there rolling your eyes going ‘yeah right, like I can just do that so easily’ well no, it hasn’t been easy and I still have days where I feel like I can’t cope, where I feel lost and scared but you see there’s that word again- ‘feel’. I get through it, I wake up the next day and start again. I’m not perfect at this but that’s ok, striving for perfection constantly makes us unhappy because not reaching that imagined top of the mountain just feeds the beast (it’s trite and a cliche but who you are IS good enough, I promise).

Make a start, try to acknowledge your feelings without judgement, try to sit still for a while and let your mind and body just drift wherever they need to. I hope this helps you a little.

I think this is the start of acceptance for me but it’s tough clearing out all that baggage, it’s tough to face it and feel it. I’m not saying I’m a zen master, I still cry in the shower but when I cry now more often than not I tell myself it’s ok to cry, it’s good to cry so cry it all out lady.

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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.

4

Hello darkness my old friend

It’s cold out there now, bloody freezing in fact. So this becomes excuse number 45 in my list of excuses to do nothing.

Before the accident I was very active, I did over 5 hours skating every week as well as going running up hills, walking in beautiful Craggs and generally keeping busy. Then the accident happened and all that went out of the window. Imagine losing all that overnight, I lost everything.

Brain Injury is a lonely place. I don’t know anyone in real life who has experienced it, the people I have met via the Internet are too far away and so you become a tribe of one. Also factor in that it happened just as I moved countries and hadn’t had a chance to really build up a social life and you get a lot of staring into space done in a day.

I’ve read all I want to read about my condition and subsequent mental health issues for now, there has to come a point where you put the books down and start just ‘getting on with it’. That is the problem now though, just getting on with it has suddenly become the hardest thing in the world. I have no motivation whatsoever and the anxiety still lurks telling me that everything is dangerous. That voice is becoming less strong now but when everyone works during the week there’s no one to kick my arse out of the door. I need that right now, I’m not doing it myself yet, I think that will come but I just need a boost initially. As a result I’ve become very deconditioned physically, the only way I’m going to get energy back and beat the anxiety is to get active again.

People might think I’m lucky, there are some who would love to stay at home all day and do nothing but believe me it gets very boring very quickly. I would like the choice, I would like ‘normal’. Normal seems pretty damn good from where I’m standing right now.

0

Here I’ll remain while my heart can hide.

It’s been a few weeks since the dizzy heights of my 12 month anniversary of TBI. I was very hopeful and going through some ‘good days’. With TBI you measure time in days. Not weeks or months. You don’t look ahead too far, you have to stay in the here and now. This is both good and bad. It’s good because living in the now is exactly where you want to be, it’s mindful and what I strive for with meditation. It’s bad because it’s hard to do and it’s only sometimes used as a form of protection. ‘Good days’ can turn into ‘bad days’ a mere 24 hours apart. I’ve mentioned in previous posts about the frustrating nature of TBI recovery and it’s back and forth nature so I won’t labour the point here but let’s just say there’s been a few ‘bad days’ since my last post.

I want to talk to you today about the particular breed of anxiety that manifests itself for me. I sometimes have the generic ‘everything is out to get me’ anxiety, though to be fair this is becoming much much less of an issue these days. The other type I have is quite funny really, I have to laugh at myself because I know how ridiculous it is when I get it.

The TBI has gifted me with health anxiety, now don’t get me wrong, it’s not constant and only flares up when I’m low generally or haven’t slept properly for a while. The thing with health anxiety is any tingle, zap or flutter anywhere in my body sets me off on an Internet quest to find just ‘what exactly is wrong with me’. Now you can see where this is leading, I end up convinced that I have TB, Beri Beri, my legs are going to drop off or some such nonsense. The Internet you see is a wonderful tool for knowledge and connection and understanding the world BUT it is also a place for quackery, misinformation and convincing a very bored Braingirl that I have EVERYTHING EVER.

To combat such silliness and general malaise and crappery I am trying to gain control of my thoughts and feelings. Instead of letting them run away with themselves and tell me all sorts of dark horrible nonsense I want to lighten my load and make life a little easier for myself.

This wee article sums it up for me http://tinybuddha.com/blog/3-steps-to-practice-acceptance-have-a-peaceful-life/

i’m trying very hard to let go and find beauty in things again. It’s difficult and I don’t always get it right but it’s a start.

Here’s some beauty in music form to start you all off.

1

Along with everything that was lost and won

It’s Autumn now. The nice part of Autumn where it’s still crisp and sunny and bright, not the soggy fart back end of Autumn that leads into the misery of Winter.

I’ve just spent 4 weeks in bed. Now when people normally say I’ve spent all day in bed what they usually mean is they got up and watched TV at some point or maybe nipped to the shop. When I say I’ve spent 4 weeks in bed, I mean IN BED. I got up to go to the bathroom and occasionally snatch some toast from the kitchen. And that’s it. I’ve been on another downward spiral, the Post Traumatic Stress is strong and I cried, panicked and generally felt hopeless. Despite being told I will come through it I didn’t believe it, I thought I’d be like this forever. When I have an episode of such soul crushing depression my brain tells me to stay in bed as there is only one thing that will keep me safe:

duvet of safety

This duvet protects me from everything. I’m tricked into believing that anything outside of it is dangerous and must be avoided at all costs. This duvet repels ALL danger. There is no telling when the urge to burrow will arise, it comes out of nowhere and overstays its welcome. During this phase I mentally and physically deteriorate, I get aches and pains, I panic and get the worst fatigue you can imagine.

But then, out of the blue, it lifts. Again there is no warning for this, I just wake up one morning and all of a sudden I can go outside, I wear a bra and I feel a strange thing called ‘hope’.

I’m currently riding a nice phase, I can keep my obsessive thoughts in check, I can believe I’m healing and I can look forward to going out the door. I hope these phases last longer each time, it’s great being able to think clearly. Don’t get me wrong I’m aware I could drop again any day and begin another phase of hopelessness but I have to take these good days as they come and breathe in their sweet sweet scent to fill my lungs and brain for as long as possible.

I still meditate every day and I think I’m finally beginning to understand ‘living in the moment’. It really helps, I recommend meditation for everyone regardless of whether you are ill. I also started Tai Chi to socialise, to roll out my stiff neck, back and shoulders that occur after a stint under the duvet. Life is still not 100%, I still get the shakes in the morning, I still cry out that grief but it’s easier to cope with when I don’t need the duvet to save me. I want to save myself, I want my life back, I want it back with a desire I cant even describe.

My next post will be an anniversary post. 30th Sept marks 1 year on. As it’s a special occasion it will be written by Mr Braingirl. He’s been there through all of this so you will be getting his story.

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.

3

Cannot find the comfort in this world

The process of recovery from TBI is not a straight line. Its a line that wiggles, zig zags, shoot off round corners and does u turns on occasion. A ‘good’ day in the journey is not a guarantee that tomorrow will be. Yesterday was a horrible day. I was anxious and panicking for most of the day. I had not encountered anxiety for a while so its re-emergence was a unwelcome addition, like a fart in a lift.

Sometimes the anxiety can strike for seemingly no reason and when it hits it’s like “the sky is falling in” as my fellow TBI survivor D put it. Treating anxiety as a part of yourself to try and process it is difficult because your brain is screaming ‘RUN AWAY! RUN AWAY! DANGER!’

Recovery is difficult, it impacts on everything. I have a small business to run, this blog to maintain and appointments to attend as well as my daily battle with my foes. On a day like yesterday where I was completely CONVINCED I was dying it’s difficult to do anything. Socks don’t get packed and posted, blogs go unwritten and the door doesn’t get answered. This is not good for business, customers neither understand nor care that you have been leaping around the house like a jumping bean trying not to die. This leads to questions about maybe giving up the business for a while. Another thing that recovery ‘takes’.

But, and this is the real downer, positive steps in recovery are also scary.

You would think to progress is good news, it’s something to be pleased about. Well yes it is but it *feels* scary.  Imagine, you’ve been a certain way for a while (in my case nearly 11 months) you’ve been through this huge trauma, you’ve put coping mechanisms in place for the droopy eyes, the fatigue, the anxiety. Your world became very small and safe and that’s all you deal with for now thank you very much. Then one day your eyes don’t feel droopy anymore or you have a surge of energy or you start dealing with the agoraphobia and Bam! everything becomes scary again. The energy isn’t something to be happy about it’s something ‘different’ that you don’t know how to cope with. The outside world becomes massive and unmanageable, people and places are suddenly the new enemy.

This is when the hard work starts again, you have to adjust your coping mechanisms to incorporate the new things and that kicks off the anxiety and depression again. This will happen with every milestone and it’s exhausting. It’s a side to recovery probably not understood by most because getting better is a good thing right? Well of course it is, but it’s not easy. Nothing is easy on this journey. I wish for a day where it feels like swimming with the tide instead of against it. A day without fear would be a welcome relief.

I’ll be entering my second year of recovery in October. Second year. Being ill for a week is difficult, so imagine 12 months of it. I have days where I feel that I don’t have the energy anymore, it has to end soon. Please. But I wake up every morning and start again because what other choice is there?