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Wednesday, 20 September 2017

Life through a Facebook Tinted Lense

It's well over five years since I started writing a blog after finding myself back in the hospital needing to have James ( shunt) added to my onboard equipment. In the years which have passed since then I have learnt a whole lot of patience and taken the opportunity to observe up

close a little of how my brain really does work and what it likes and needs to run better especially after all these knocks but it's a slow old process.

So much of what we do is governed and regulated by the brain ( I'm learning about circadian rhythms at the moment which is just fascinating), and all the brain functions requires immense energy just to complete unseen tasks , regulate chemicals let alone then navigate and process the everyday and unexpected. When your brain is a little damaged already and impaired daily by the clunky operation of a shunt then the energy just doesn't flow or work as efficiently as it might otherwise or how you would like.

It is a hard but normal reaction I think to listen to ego though and want to be all you were before but like any moment in history that is gone forever , and I have had to make peace with that but At the same time I realise that the internal commentator that exist for us all is probably still placing the greatest pressure and expectations in my ongoing recovery and is mostly responsible when I haven't heeded my own traffic light signals. I need to be honest about my new hard edges and limits that exist now and not feel I have to hide them.

I have grown up in a world that typically measures success by what you do, how well you do it, how fast or competent you are at a task all set amidst a mix of noise, rushing pace and general landscapes of chaos and it can be hard not measuring up but one answer is to stop measuring against those same labels.

I would never advocate doing nothing at all or stop putting myself out there for challenge  but just like when you find yourself in new circumstances you have to find a new rythmn and pace that works for you , tailored to your limits, your effects and that will probably  keep changing for a while yet much like the rythmn of life and that's still a work in progress even this far out as it is still shifting and changing.

I think I manage now to fully embrace my new normal for me of what is possible each day. It's not always pretty but I am much better versed in my brain battery levels now and I still keep pushing to see where all the hard edges are of what is possible and they in turn keep shifting just to keep me on my toes.

This summer I decided to conduct a little experiment with myself to see what impact it has on my fatigue levels which involved taking more breaks whilst the girls are off school. Last summer , with more going on I found it very hard to get balance and my brain threw a little hissy fit so I thought it worth trying out a different approach to looking after the kids and balancing my energy and one big cog in that was I took three weeks off work. I was fortunate to have had some saved up my holiday but the big plus I have in my corner is a very considerate employer and kind colleagues who right the way through since coming back to part time work have been willing to listen and understand and most of all support me as I try to maintain a balance of what works.

The decision to take a longer break seems to have had a positive effect as when I was using more energy to do activity I was able to rest and take time out. and my usual habit of putting 'pauses' throughout the day was protected , something I know I didn't do last summer. Now summer is over my energy feels a little more balanced and whilst I still feel very fatigued post holidays it's nowhere as bad as last year , just don't get me started on the British weather though as all the barometric shifts have played it's usual havoc.

I planned a day out with the girls in London during summer, something I'm quite versed in these days, but equally I know there is a toll from doing it. The lovely smiley FB posts I shared about the visit didn't show a girl who falls through the door completely exhausted after the cognitive demand that is London and all it's noise and hustle shows its wear on my physicality. I don't post a live feed of my tired and damaged brain at the end of it's busy day as it chucks away words from me at will nor show that eating is a struggle but the kindly 'him indoors' knows the drill well by now and brings me something simple but nourishing.

The next day means doing nothing. Literally nothing. Music turned off, conversations to a minimum and I look like I have been on a ten day bender and that's definitely a photo post no one wants to see. The 'polished stone' of the outer image that I present means that people meeting me would probably have no idea of the deficits I now have or the work I'm putting into doing 'normal' activities and I'm sure with my Facebook posts portray a pretty different story to one I've shared above. That's not saying that my posts aren't true, they are truths in the moment they get taken, but I definitely cultivate what I choose to share and for me that doesn't include posting the crappy days which are part of the living with brain injury landscape.

When I choose to post a Facebook update for the most part it is about putting on the lens of my more happy moments, my triumphs and discoveries or just sharing opinions and inviting other people to see those and share in them. I don't however often use it to share the not so good. Sure I'll tell you I might be heading for a hospital check up ( early October if you're interested), but sharing a picture which shows the true and awful days that brain injury can give you even years on? no not so much.

I might message people if I need some extra help but I mostly rely on the fact that the people around me can see that I'm 'struggling today' and often they spot it faster than I do and they help me to act. Youngest daughter can even just pick up from the tone in my voice, she tells me, "mummy you're tired , your voice has changed" and that's a good prompt that I'm just about to run out of brain juice.

Everyone we meet carries hidden scars, is facing battles or anxieties they may or may not choose to share , often they carry heavy burdens and sometimes just sharing a smile in the street , a cheery hello, and yes even commenting on their post on their FB when scrolling through offers a little act of consideration and kindness as they walk their own daily path. I try to consider that when I like posts on FB that make me smile, as I share and celebrate other people's happy adventures, jokes and moments of pride, that probably just like me behind that cultivated image of happy, forward looking and hopeful posts is a truth that the road is never entirely smooth for everyone.

A Facebook lens offers a gentle filter on life for the most part but it's worth bearing in mind that things are not always as they seem in the pictures.

Tuesday, 7 March 2017

In this lifetime

Curiosity has served me well but it has got me into trouble throughout my life but being curious fuels the soul and I have now learnt the brain more so. It nourishes it and heals it.

My mum will attest that my curiosity at the early toddler age led to a number of incidents where without any idea of self preservation and fuelled by my desire to explore something there was often less than favourable circumstances the worst of which I think was having to have a needle extracted from a leg vein as it travelled porcupine quill style in my bloodstream. But it didn't put me off being curious.

I look back now on the events of Five years ago and my SAH with similar curiosity. I have never had the courage to ask exactly about the events that unfolded that day and no memory of them but instead turned my questions to the why of where I was in a particular moment in the days and years that have followed and then started to figure out what I could do next with that.

Exploring all the new possibilities in my reconfigured brain became my focus. Could I do this? What happened if I tried that and why did I feel that way? It helped me plot and learn about limits that now exist for me but also to explore new ways of doing old things.

I remain just as curious today but more accepting of my daily trade offs. I know now that in order to do something that requires my cognitive demand I have to allow for it and trade off that extra demand with extra rest and so I adjust accordingly and I say no a lot more and worry far less.

You see Brain injury is a strange condition to live with and I have the added condition of having James Shunt in residence and so my daily rhythm changes as frequently as the weather despite trying to bring regular routines. I attended a useful session recently with Martin Gremlich about brain injury and learnt something that has passed me by. Your brain doesn't feel any pain and so it lets you know that something is broken or not quite right by sending you different signals. I now know my signals for when I am doing too much, when I need to ask for help, when I need to stop but I wonder how many of you do too? How many of you ignore the signs of tiredness or high emotions or illhealth and dismiss it? Maybe it's time to think about the exertion upon your brain and how you are treating it?

And so in honour of five years on of intensive learning more about how to be kind to my brain and what has helped me to create a environment where it continues to heal,  learnt from watching it rebuild connections, learnt from hearing the CSF that it is bathed in shift through my shunt and just coming from my everyday experience since it all went pop here are some of my tips to help you nurture your  grey matter whether you are healing from a brain injury or just want to invest a little more in brain health.

  • Learn your fatigue and stress signs and don't push through or ignore them. Think of it as traffic lights, when you are at a green it is safe to proceed but amber then slow and red , stop. Observe when you feel certain ways and take action and steps to try and solve the cause.
  • Get some regularity with your sleep routines; go old school and read a book and wind down but whatever works for you do it.
  • Go easy on yourself and work to your limits of that day, that moment. Try to silence that inner critic that tells you 'I should' or 'I didn't ' and just know what you 'did' do.
  • Ask for help. This is a biggie and it's something we should all of use do more. Know when you are struggling and say, 'please could you' to someone. Mostly they really want to help you and you in turn will be better able to help them should they need it.
  • Offer help to others. It may be something you least feel like doing but there is always a way t help others. Share your experiences and people feel less alone. Have a helping hand and tasks aren't as hard. Offer a listening ear and you'll make a difference. 
  • Don't ever give up hope  or fully accept today's  limits, always be curious and seek new possibility. It may be painful to do that but that curiosity opens doors as well as shutting them so it's always worth the exploration

Five years ago I permanently injured my neurons. Some of them  are now forever out of order but with gentleness, time and  continued exploration of the new brain routes on offer I have my lifetime left to explore my possibilities.

So do you.