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Leaning in , keeping on learning


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All of us are different in our bleeds, our experience is unique to us  which is one of the trickier things that comes with our new found adjustment to the new state of us. Yes we can compare, we can definately learn from others having trodden a path before , BTG is a sanctuary for that but at the same time we have to work out our own possibilities within our own recovery.

 

I had a pretty major bleed, level 4,complicated by hydrocephalus which then returned after a length stay requiring even more surgery to bring the permanent additon of a shunt into my life equation. The prognosis once I left hospital was pretty much " just do what you can" and so ever since then I have tried to figure out what that "can " is.

 

Working and the return to it at the capacity I had before has proved impossible for now especially keeping the balance of home life with two young daughters so I do it differently these days but I think just being curious about what might be possible in a new way has been helpful. 

 

We all know about regains , or retrains as I now think of them , and we learn about pacing, about spoons and we make sensible decisions every day about how doing something might mean not doing something else. Thing is whilst doing that I found I was becoming less open to stepping outside my comfort zone. So the further I stepped in my recovery , the steadier I was becoming the less I was likely to rock that boat so this week I rocked it.

 

I really pushed myself physically and cognitively and whilst I couldn't do the entirety of what I set out to do I learnt a huge amount on the way and feel a little more positive as well that this recovery of our is definately something I'm on for the rest of my life and that it's kinda cool that I get to understand and really try different ways of doing things. 

 

I havent been been online for a few days as of course the efforts of my adventure wiped me out totally but that was worth it and I 'stopped' before it became painful. And I mean I really stopped and switched everything off. My mum even brought meals on wheels whilst I rebooted. 

 

So that's what I wanted to share. We get to know our traffic lights system , our Red Amber and Green moments and I guess I wanted to say pay attention to them all but always listen to the red and then at that moment really do stop because then you will be able to go again when the green comes around. And who knows we may go even further ?

 

If anyone wants to know what I've been up to they can check out my blog , link is on my profile page. 

 

Go steady and keep being curious everyone to your new possibilities and of course always keep singing. I did a fair bit of that this week Win. 

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Brilliant Daff!

 

I relate to much of this.  How many of us take the time out to take stock?  Not many I guess.  Once we have found a 'safe' path it is easy to stay on it and not take risks or push boundaries because of the mental strain a SAH inflicts upon us in wanting to hold on to life and get back to as near 'normal' as possible (by that I mean what was normal before SAH).  It is important that we recognise the new 'normal' post SAH.

 

The change was imposed suddenly and without warning, but when you analyse it, we are all getting older, wiser and weaker and we have to adapt to change whether we like it or not.  I am 60 now.  I cannot run as fast I used to when I was 20.  I walk now rather than run but I still get there.  If I don't feel like walking I get the bus or a taxi but I still get there.  Change happens, it's how we deal with it that counts.

 

You are so right that it is important that we rest properly.  Some days I feel like I can go on forever, some days I feel I struggle to get out of bed and it is incredibly frustrating.  That's how I am these days, but I am walking farther now than I have done in years and this represents progress for me.

 

When taking stock, it is important, I feel, to take account of not only the physical things I am capable of but also the mental aspects, such as stress, irritability, frustration, depression, confusion and the like.

 

Well done Daff, an inspirational post and thank you for sharing it.  I hope others take heart from it and use it to make their own assessments of their individual circumstances.

 

Macca

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Brilliant post Daff,

I can also relate to this, I have at times pushed myself beyond my limits and I have paid for it, I still want to try and push myself to achieve things, sometimes though I do go above and beyond what I should and then I am no good to anyone for days.

 

2 years down the line and yes I can do more than I could in the first year but I still feel I need to be doing more. I was scared to walk my dog alone in the first year, I can do that now and in doing that it has helped me to gain a little more confidence.

 

I do things a lot slower than I used to, I used to scurry around like an idiot rushing from A to B, I just am not able to do that anymore because I know it will have consequences for me.

 

As Macca said he still gets there just the same only at a different pace, I have to agree with him. I used to be able to deal with any amount of stress, can`t do it now and I try to avoid it if I can.

I still have trouble coping with a lot of people and noise, although I am getting a little better with that, it`s still a work in progress for me, I`m sure I`ll get there in time, if I don't well I will just keep trying to find different ways to cope with it.

 

A very thought provoking post Daff, thank you for sharing it,

Love

Michelle xx

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As usual Daffs writes a good post,

I mean it Daffs and it doesn't hurt if we do not cook, or we rest up for a while as we always say to each other listen to your body.

 

I know you do not have the luxury of being able to go bed when body tells you as you have children, good job you have your Mum to help you Daffs and when body/brain tells you full steam ahead, take Mum and you out or what you do with Mum. 

 

You must have been wiped out to stay off here lol.  Now remember to rest up and don't be brave be a lazy moo for a few days, as that's what I do lol xxxxx  Keep smiling and singing and get Mum to join in xxxx

 

Sorry you are on a downer but I know my Shunt pard, she will  be okay after a rest, so be happy and never give up as I need my shunt pals for my  barometer head days.  Now smile and sing and do not overdo it.  Wins Orders !!!

Take care Pal xxx feet up and rest xxx   Tap dance coming up later, the one where I slip into the sink xxxx

 

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