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.


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?


All in all is all we are

I like to think I’m an honest person and call a spade a spade but I will, if possible, do anything to avoid hurting others even if it means hurting myself instead. I am quite a closed book (believe it or not) until I get to know someone and then when I do I give my all. I am a loyal person, I value loyalty and maybe this is my problem. I put expectations of my own values and behaviour on others. This is a mistake I make over and over again, so I guess that makes me a bit of an idiot right?

Since my accident I have noticed a pattern emerge, there has been a gradual peeling off of friends. Now I know I moved away and I know people have busy lives BUT it doesn’t take much to drop a quick “hello, how are you?” I also know I could make more effort with contact but in these circumstances I’m allowing myself a bit of a free pass on that one as I was too busy trying not to die.

I was involved in a team sport back in England, a sport I put my heart and soul into. I enabled others to access this sport and in small ways changed some lives. I’m not the only person doing this, there are many around the country that do the same thing week in, week out. ¬†There are many good people in this sport that I used to play but there is also selfishness too. Like any walk of life. This team sport is demanding in many ways both physically and emotionally and when you carry a large number of people’s shit around for a while it would be nice to have forged what you feel are good friendships.

Since my accident I’ve had regular contact with 2 people from the team. 2. Out of around 30ish. Yes 2.

Now this could be a reflection on me, I could be a knob of the highest order and it serves me right. But having put everything into something and being helpful and encouraging and taking the griping and bitching, well, it kind of sucks. It’s hard for me to sound so negative about people but I’ve spent so many days upset and alone I had to let it out. It’s inevitable when life changes happen that some people drift from the shore but I never wanted much, just someone to ask me how I’m doing. Let me just clear up there are people outside of the sport that have buggered off too!

Talking to other TBI survivors it would seem that it’s not an uncommon theme. I think some people can’t handle trauma, it scares them, they don’t know what to say so they say nothing. This is understandable but my advice would be to say something, even if its admitting that you don’t know what to say.

It’s not all doom and gloom, whilst some have scuttled away there are others (some who I already knew, some who I have never physically met and some who I was just getting to know) who have been brilliant. There have been unexpected gifts of books, letters, Netflix subscriptions and even some seedlings for me to grow. Private messages on social networks encouraging me, standing with me and generally being complete rocks.

It’s time for me to let go of the hurt I feel and focus on the flowers that are blooming from this instead. Having days and nights to sit around and wallow and churn the brain over means I obsess over the smallest things. I look for reasons for everything, I cry and blame and get angry and pour hate into myself but after that I also rationalise, find hope and try to look at things in a new way. It’s very hard, especially when I’m depressed to find hope in anything, but I have to if I’m going to survive.

Whilst it’s sad to feel rejected by people its also a lesson for me, a lesson in friendship, a lesson in saying no sometimes and not giving all of my time to people, especially when I can see that its unappreciated. It’s OK to take sometimes too. I’m bad at accepting help, it makes me feel funny. I like being strong and independent. Right now though I can’t be, I have to lean and save my energy for myself.


Stoppin’ on the red

Weekends huh? Weekends are supposed to be fun aren’t they? But when you have no discernable ‘week’ then the weekend is just another pair of days that drag into each other.

My weekend has been spent fighting my trio of enemies

wanted poster

Days like this are boring, stupid, exhausting, pointless smelly poo bums.

Days like this make me rage against the world and myself.

As a result I have done nothing of note, this bugs me. It bugs me to my very core. I like doing things. I also like not doing things but it would be nice to have the choice. I think that’s the issue. Having choice taken away is very disempowering, it feeds the cycle of mood, feeling and outcome I have going on. The self fulfilling prophecy that takes up all my thinking time and wont just bloody go away! So this is where Braingirl has to put on her cape and fight, even if it seems to be the same fight over and over again.

I will eventually break the cycle, I will, like a freed battery Hen feel the sunlight on my face once again.


What is TBI?

Here we get a little serious and talk vaguely scientifically about my various afflictions. The first one of which is Traumatic Brain Injury (TBI). If you’ve read my blog you will see that this has been a fairly recent occurrence.

A TBI is an acquired head injury that can range from mild concussion to a major loss of consciousness and coma. It can be caused by an impact to the head or as in my case, a ‘shearing’ injury (like shaken baby syndrome). There was a bleed in the subdural level of my skull (not quite in the brain but in the layer between) and this caused a build up of pressure that had to be released via Craniotomy.

Craniotomy involves removing a flap of skull and getting into the bleed. I had most of the right side of my head taken off (from top of scalp to ear). This flap is then replaced or stitched to the stomach to enable it to live whilst swelling in the brain reduces enough to replace it.

I was lucky I didn’t have to have my head stitched to my stomach!

The severity of the bleed, how fast treatment was sought and subsequent coma very much determines recovery. The thing with TBI is that every case is different even if they seem the same. That is, someone with the exact same injury as me could heal in a completely different way.

There is a possibility of physical effects such as palsy of the eye (which I had for about 2 months) or loss of use of limbs, difficulties with speech, memory and sight. These could be temporary or permanently disabling.

But the part that I find the hardest work is the psychological effects. Sustaining a trauma such as a TBI where you face death and have your life upended in such an abrupt and violent manner brings with it a process of grieving and with grieving comes depression, anxiety and panic. Meld these with fatigue and you have a pretty potent mix.

TBI can be an invisible disability if you have no long lasting obvious physical effects, this adds to the frustration of the whole thing as sometimes people don’t believe or can’t understand that you are ill.

TBI is also extremely common, more common than people realise.