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Lost and Found


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I think I have shared that I started a blog , pogoestifty when I was back in hospital again post my SAH waiting to hear whether I needed a shunt which did. I found it great therapy ever since and it allowed me to track my progress and share with family and friends how I was doing. I blog less these days but have just posted for New Year and I thought I would share some of my list on that post here on BTG which as a forum helped me so much to make my adjustment and peace with what happened.

 

"So as we head to the start of another year I thought I would share my lost and found list of living and adjusting to life post my SAH bleed and the subsequent surgeries for that and my shunt James which has left my brain changed forever.

 

  • I lost brain a lot of brain cells 8/3/2012 due to the severity of bleed and through the surgeries and hydrocephalus but I have learnt , regained and found new ways of learning since then and I now treasure and treat my brain a lot more kindly and tread a little more gently through life.
  • I have lost touch with some friends since that time but have gained an understanding of what true friendship looks and feels like. I am blessed to have the people that I do and I don't ever take their friendship for granted. I just hope I can one day help them the way they have helped me .
  • I have lost a lot of worry and fear, it's strange how an event that forces you to know your own mortality can do that but I have found I am much more at ease and accepting of situations and really don't worry about much.
  • I lost a little of my ambition. Well I think it's safe to say I have realigned it to the possibility of achieving whatever my current state allows but in doing that I have found I enjoy just doing what I do, for now anyway.
  • I have lost respect for people that just moan and witch about everything and everyone without doing something to change but have found courage to walk away and distance myself from that. You don't ever need that stress in your life and it appears my brain hates the effect of it therefore I do not allow it in mine.
  • I have lost a lot of social fun times and this has been hard to adjust to as you see I liked a bit of scene, a party, a loud concert but I have found I adore a 121 conversation just as much these days , it requires less energy and booze than dancing on a table and I don't care too much about the subject on offer as long as it's one that interests, intrigues or inspires and is with good company.
  • I have lost living for tomorrow or in the past. I have found I can only do what I do and live in today and with a bit of luck and a fair wind I will have another one tomorrow and if it doesn't well I can say,'well today was a good sort of day'
  • I have lost the ability to sleep completely flat due to the effect of my shunt at night so now sleep Barbara Cartland style propped up on cushions but without the pink nighties and feather boas but have found that you really can get used to and adjust to anything if you keep a positive outlook. I mean every time I forget and tip my head to far or back I get to hear my gravitational valve work and move, how cool is that, I get to hear the internal workings of the rubies at work with the hamsters.
  • I have lost count of the pills, procedures, scans and doctors I have seen but I have found that progress is best measured by looking at your lowest point and then where you are today, nothing else really matters.
  • I have found it always good to try help someone else no matter what your struggle is and so I have the lost the inhibition to offer help if I think it's needed.
  • I have lost the feeling that I have to go it alone for something to matter or be worth something and learnt it's actually better to #lean in , you can take the corners better and it makes it easier to hug other people if you do. "

What did you find and lose?

 

Happy. Healthy 2016 to you all.

 

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I found some people on here who seem surprised that they lived, I am glad I came back  from a deep sleep.

 

These are my feelings

 

I keep away from Doom and Gloomers, I mean that in a good way as I need happiness in my life.  Like Daffs  already said !!.

 

I found my friends on here a great help and although I go on Facebook I come on here to unwind.

Laughter and as you might know songs are my life (Apart from the odd  rant and raves)

I have found a  lot of good  people on this site who I class as my Pals

I have to say I feel blessed that I am still here (you poor lot) xx

 

My Family and friends a lot of whom are my pals also have never turned away from me.

I would say I am a very lucky woman who has trouble walking but will never give up.  So for 2016 tomorrow waddle then walking then??

 

Happy 2016 All and as Rose  Marie  sings in Auld Lang Syne

 

If all the Love in all the world was mine to give to you

Then everything that love would bring would be ours the whole year through

 

Have a good 2016 and Farewell 2015 you did us well xx

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A very thought provoking post. I too have been thinking about the things I have lost and gained since my SAH, maybe as it is almost one year since it occurred and I am now under investigation to try and find out why I am having so many issues waking (turns out it wasn't just fatigue - ah the fickle nature of SAH recovery!).

 

In terms of loss:

My stamina - I used to get much more done in a day (although this has improved enormously over the past year and I feel I am at a reasonably sustainable point currently).

 

Many aspects of cognition, which I took for granted before this occurred. The ability to multi-task, my speed of thought processing, my ability to filter out things, my attentional memory.....the list goes on......I simply never appreciated the amount of things my brain did before the SAH.

 

My physical fitness - this has got much more worse recently. I (and my specialist and OT) had put it down to fatigue, but after a another assessment it turned out that my issues were different from what I had initially after the SAH and were getting worse (which the hospital have never seen before post-SAH) so I am being investigated for the cause currently. I especially miss that I cannot dance, which I guess also fits into the loss of certain aspects of social life that you mentioned Daff.

 

My career - prior to this I worked full time as a teacher, with two additional managerial roles. I have already dropped one of these additional roles and am about to start an 8 month phased return to work (after 6 months in rehab). To be fair I do not know what the outcome of this will be, so I haven't actually lost my career entirely, however I imagine it will be different to what I once thought it would be.

 

The illusion I had that I could plan my life out fully. Pre-SAH I had a plan for everything. Now I have to deal with the fact that I don't know what is going to happen. I do not know what the outcome of my return to work will be or what I will be like in 6 months/a year/two years time. I will simply have to wait and see and take each day as it comes.

 

In terms of gains:

 

I have to say my gains focus mainly around two areas. The first is a loss of fear about some things. Some of these are silly things, for example I was terrified of the dentist before all this but now I am fine with it (to be fair after a SAH the dentist seems quite tame and also I have so many medical issues that no dentist wants to do any work on me anyway). However I also have less fear of trying new things and going after the things I want.

 

This also ties in to my other gain. It sounds corny but I do think I appreciate my family and friends more and have more of an appreciation of the small things in life. I think to be honest those closest to me like my husband/parents/in-laws have also gained some of this and now we make more of an effort to see each other and spend time together.

 

A healthy 2016 sounds like an excellent plan :-) Happy New Year xx

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Thanks all for sharing and some very poignant posts. We all have losses but also many gains from any experience but a SAH is such a monumental experience which touches so many aspects. I think my biggest loss has been thinking I am invincible, suddenly this brings into focus that life can change in seconds.

Gains have been many, including giving myself permission to slow down, that people and relationships are what matter and small crisis do not matter. Good health is my focus for 2016 pushing myself to take up some challenges in improving fitness and having more fun.

I hope everyone reaches their own personal goals or at least has fun trying x

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Daffodil, so eloquent thank you. Gemma, you are on a similar time line to me so perhaps in a number of ways my thoughts are similar to yours.

 

However, not quite a year in, I'm not sure if its delusional but I don't yet want to think what I may have lost. I will keep on trying things and see if they get better or easier (perhaps not too frequently). Back in early March a bought a ticket for a gig this December, and had to give it away. At the start o this journey I thought I would be OK by December, but this year not. I will buy another ticket when they come on sale next year, and we will see, I'm not quite ready to say good bye to that quite yet.

 

I think one of the things that I have gained, is a perspective on all the really good friends and people locally that have come forward more in my life thanks of this SAH malarky.

 

Anyway, I've side tracked myself. I logged in tonight as I wanted to wish everyone here all the best for 2016. This time last year I had no idea what SAH was, but in just 20 days that was all about to change. I've have had the fortune to meet a great bunch of people here at BTG drawn to gather through our experiences. I may not be a regular inputer to the discussions but the support both in just being able to read what other people are going through and in participating in some of the discussions has been some of the most important support over the past year.

 

Here's to a happy and healthier 2016 for us all

 

Cheers!

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Daff, Greg. Gemma and all reading in

 

Very eloquent and thought provoking.I think we have all been on a journey, some of us having travelled more difficult terrain than others.

 

The one thing that links us all is understanding, understanding of the event that has befallen us all, but not beaten us. We are survivors and should be thankful for that fact even though sometimes we aren't. We all ask  - 'why me? why now? and what if?. But no one can answer those questions. I am not the same person I was and am not sure if that is good or bad, But as someone said in another post today, family are key to our recovery and I am eternally grateful for mine.

 

Clare xx

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Thank you for this. I really needed it today. I did a bit of feeling sorry for myself today. The one thing I've lost is the ability to forget how I feel for a little while. Meaning, I am always intimately aware of how I feel. At a restaurant, the movies, work, etc... The only time I think I do forget for a moment is when I am gardening. Physical labor helps me feel better for a short while.

What have I gained. A respect for others in real pain and the understanding of wanting a reprieve from that pain. I totally get that.

And, I wish it would never rain again. Kidding but not.

Iola

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Daff, what a very eloquent and thought provoking post,

 

I like you have learned to distance myself from stressful situations,

simply because I can`t handle it anymore.

 

That`s why we spend so much time at our caravan, it`s my sanctuary.

I have also learned how fragile life can be, you just don't know what`s

around the corner for you,

 

I used to worry about stupid little things, not anymore I don't, life is to short. 

 

I`ve had some difficult times with the problems post SAH, I`ve had a wonderful

GP, I have been able to go and talk things through with her, sometimes it helps

sometimes it doesn't, I find talking to Verdun about the way I am feeling quite difficult

now as he thinks I should be over it by now, which has made me quite sad at times,

 

I have however still got memory problems which I still find very frustrating, the loss of

words still affects me sometimes, I am learning to live with these things as time goes on.

I still don't like being alone in the house, I still find that quite unnerving at times, silly I know.

 

I want my life to be more worthwhile, I don't take anything for granted anymore, I want to spend

more time with the people that I love, especially my parents with my mam being ill, I feel that time

will run out if I don't do it now.

 

I also have to thank everyone at BTG, without this forum I would not be where I am today, the support

and the friendship here has been a god send to me, no one understands more than those who have been

through it, we are a unique group of people, each having a story to tell about our recovery journey, what

we have lost and what we have gained during it and the fact that this will help so many other people during

their recovery journey is a great thing, it`s a nice place to come and let off steam, have a chat and have a

good laugh also, I feel very grateful to you all.

 

Love

Michelle x

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  • 5 weeks later...

Each year we keep on keeping on.  I actually had a normal feeling about my birthday this year.  The last 4 years, I have felt like I had a new birthdate, the day of my hemorrhage.  This year, I forgot the anniversary of my SAH until someone reminded me.  I didn't however, remember how old I was turning on my birthday....48 or 49.

 

I think I can't get my mind to understand that I really missed a few years of me during my recovery.  I forever hope that I will live and feel like I am back to 44 when the bleed happened.  So far, not quite there yet, but almost!  I see how each year, I can look back and find something that has improved!  That is cool.  I'm going with that.

 

~Kris

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