I feel like a broken clockwork toy

[Daffodil]

It's not often I write or start a new post these days preferring to respond to other posts but on this dull and dank Autumn morning in the UK it has got me reflecting on how my brain and lifestyle has changed since my SAH and resulting hydrocephalus and I guess I want to get that out there into BTG land.

Prior to my SAH I ran life like many of us; at full tilt, leaning into the wind and busy busy busy. I am mum to two young girls , I worked near to full time and managed a fair social life into the mix but much of that description is different now I sit and reflect nearly three and half years on from my 'event'. I am able to work part time these days, I am fortunate I can do this mostly at home over video calls and computer with occasional trips to the big city. That helps money wise. I drive again, not far and not long but I am mobile. I can walk at length but nothing 'spinny' or high velocity so I have a little exercise routine that works for me , I don't drink at all and am in bed by 9.30 most nights as my battery runs out but then.

I feel my brain acutely most days. That's a strange thing to say isn't it but I imagine most of you will get it. I know most of the people I come into contact with Day to day won't give a moments though to their brain and how it's doing but having spent some serious alone time doing nothing but watching and observing my brains thought, it's pain, it's changes since SAH I can honestly say I feel I know my little grey neurons a lot better these days and so I give it more attention and consideration. If I don't it just knocks me to my knees anyway so respecting the limits is an important part of my new mode of operating.

The pain , discomfort and fear that sat with me in the early years are really reduced these days but I carry the weight of my personal change of capacity and ability and it sits quite heavy some days. I miss the old me, the reliability of knowing I could just do something without having to weigh up or make a choice of what I can do today. Understanding and judging my capacity , pace myself, is something I have begrudgingly had to learn to do but I'd be lying if I said I had fully accepted those limits, it's more I know I need to do it that way if I don't want that pain , discomfort and fear to notch up.

I miss being included in things, people don't ask me so much these days as they know I probably can't manage the travel to a venue or to a big noisy event without bailing early so our social life has shrunk. I still have great friends, don't get me wrong this isn't meant to be a sad post it's just one from someone who is still adjusting, still changing and can't help but occasionally looking back. I celebrate how far I have come , I really do, my consultant thought I would never work or be independant and thankfully I am able to be both but like most I guess we never stop wanting more progress, more advance. Greedy really.

The thing I struggle with still is that my brain never gets fully wound up no matter how much I rest, how much I pace, how much water I drink, I still always wake tired. I'm like a clockwork toy that you can't keep wound up. In fact most mornings I have to be woken up . The family have a routine, my daughters and my hubby are all getting ready but I am left sleeping and you know what I don't hear a thing of the noisy morning bustle and then they wake me with a cup of tea

It's really sweet of them and it's a gentle start to my day but with you I can share I feel guilty that I just can't manage to wake up any earlier and when I do wake I sit with what I only describe as hangover head for a while, no bounding Out of bed for me unless I want to fall. My hydro team suggest this is more the shunts effects than SAH but it's a hard legacy, a small legacy really to swallow all things considered but I start each morning with renewed reminder and knowledge of my limits for the day.

Oh it's a strange thing to live with a rearranged and damaged noodle but it's is glorious to have that challenge of life and be one of the lucky ones. Onwards. Keeping hope. And singing of course.

[Winb143]

A lovely post Daffs,

 

The shunt I need also but I was speaking to my hubby about it here's the conversation.  Win~"Al my shunt is really swollen today I must be stressed out again".   Al~"Your shunt cannot get bigger it stays the same size Win so don't talk stupid" .  (love the stupid word)!!

 

Well it goes something like that but it's in my head and I know sometimes it feels bigger than others, so I just muffle rude words under my breathe and give him a dirty look lol poor hubby, he has to choose his words a bit better now days.​

 

You are not one for moaning Daffs so I think you are on a downer and what with the rain etc. it is telling on you xx pressure etc.

 

We are here for you also so go ahead say what's getting to you, we all need an escape xx 

 

You put it so nicely I felt sad for you, and I know you don't want pity just getting it off your chest helps.

 

Love you and remember to turn mouth upwards towards eyes when possible.

 

Hope you and family are all well xx

Love

Win xxxx (Leader of the Pack of Shunters Club ) ha ha   xx

[Daffodil]

Aw win thanks. This is why you are the no 1 shunt leader. I guess some days are just a misery day, they also usually coincide with rainy, weather changing days like today when like you the pressure changes and sits really heavy on me; makes my head hurts, I feel slower, my shunt area is all sensitive and I feel, well I feel ' bleurgh!' .

Nothing is amiss though, no more drama than usual at home and physically all is well so i feel a bit of a misery complaining but well I guess most days it's a struggle and uses so much energy just to do the everyday stuff and today I'm tired of always being worn out. Family wonderful though they are don't get it, it's their norm now having a tired mum/ wife and they cease to expect it to be different but I do, I still wake and hope everyday that maybe today will be the day my fatigue lifts a little.

I know the effort that goes into managing All that we all do and I need to remind myself again how amazing that is. Going to take my own advice and be kind to myself today. I'm still smiling Win, promise. X

[Winb143]

Daffs,

 

You cope well, I remember back to when you came on here and we spoke about our shunts and how the pipes don't seem as big as they did etc.

 

You are what I aim to be like.  No not Younger as I'll never be younger (joke but true),  but  you,  like all on here have been through it and when you type I went on train to London or wherever you go off  on one of your trips,  I think lucky moo lol.

 

You will have a good sleep tonight and wake up and go out for the morning and all will be well xx Yes I winked at screen lol.

 

Love you pal and be well xxxx Coffee anyone ?  snatches Keith's line 

 

Win  xx xx xx Like the bleurgh word and I know what it means ha ha  xxx

[Macca]

Daffs,

I totally get that.  Brilliant though doctors are, I’ve not heard of any that have suffered a SAH other than one in the US who wrote a book ‘My Stroke of Insight – A Brain Scientist’s Personal Journey’ by Jill Bolte Taylor PhD. (ISBN 978-0-340-9805-7).

 

After five years I still have fatigue and have plotted the new path of many things that I once took for granted.  I now put up with comments about my short term memory such as “That’s your age” and “We’re all like that at our age.”  Except that we’re not.  I know the difference because I know what I was like before.  They don’t mean anything by it, I know, but deep down it stings and it means they now see the way I am as the way I am, not as I was.

 

The old me, to them, is a distant and fading memory because this is the here and now.

 

Sometimes not only can I not remember events but I cannot remember the discussions about them let alone the contents.  That is frustrating.  I wake late and for my family, it has become the new ‘normal.’  Like you, I deal with it but I don’t accept it.  I deal with it because I have no choice and because I want to get on with life, not sit moping about what might have been.  There’s no point, because this is how it is.  Doesn’t mean I don’t think about it, but I don’t whinge about it to others because deep down I know it’s five years ago and they don’t want to hear it any more.

 

That’s ok for them, but I live with it, as you do too along with so many others on this site and those who visit it.

 

I am happy that I am alive and that I can watch my two sons develop their family lives and my grandchildren grow. I am happy that I can continue to enjoy the company of my wife, a continual source of joy and inspiration to me. 

 

I marvel at the skill and craft of the doctors and nurses who saved me.  However, despite what they say about the effects afterwards, and for all their brilliance, their knowledge comes from critical analysis of clinical procedure, data and of talking to people who have had a SAH.  It is an external knowledge, not the internal knowledge that we have as the experiential consumer from within.

 

It is this experience that makes the vital difference between those ‘who think they know’ and those ‘who actually do know’ and therefore ‘get it.’

 

So have a moan Daff, then chin up and get on with it, because it’s like the Second World War, - we all know it happened but we can’t change it and we have to make the best of the future!

 

Good luck,

 

Macca

[SarahLou]

Hi Daff,

I totally get all that too.

It's 5 years since SAH rocked my world and whilst I cherish every day I do still miss the old me at times.

I yearn for the wife, mother, daughter and friend that I once was.

Like so many others here I have to plan and pace everything I do, and my lil re-arranged brain still always kicks out to remind me that it has been injured.

I've worked hard to get where I am today and I'm very proud of all I've achieved (recently just passed work exams, a tough year of studies, I cried I was so chuffed with myself, I did it!)

Fatigue still floors me. I still have headaches and temple pressure every single day. I wake every morning with head pains that take about an hour to ease off.

Life is different, but I've learnt a lot about myself and I look at a lot of things very differently now.

Many of your posts have given me strength and courage, you've given me hints and tips, especially in coping with (rare!) social situations, I still use my 'trusty survival kit', earplugs, sunglasses, bottle of water and still use my stick now and again when my balance is bad.

The best thing I've learnt really is that it is OK to not be OK, I can have these moments when I feel a bit mardy about the way things are because those feelings don't last long, I see the rainbow again, when I look around the people in my life and I know how very lucky I am.

We must always keep hope and we must always keep singing!

Take care lovely lady,

SarahLou Xx

[Sharlua]

Very moving posts which I think put in words some things that are difficult for many of us to express. Whilst I am in early days and feel like I got off very lightly not having a shunt or worse effects from the bleed, I still feel that life has changed. I guess to most people I am classed as cured and they do not understand SAH. It is daft things which get me, I drive somewhere and totally forget where I am going cannot tell you how many times missed my turn off coming home from work, it is like the alert message in my brain switches off.

 

I forget words and that can be embarrassing. I have only what I can describe as brain fog some days, but I am learning that this maybe the new normal for me and whilst I do grieve sometimes for the person I was - life looks better this month than it did last month. All four of you have been enormous support to many on the site and I think posts like this help us to realise that yes we are alive but to survive this trauma does come with significant impacts.

 

Thank you for sharing x

[Winb143]

Thanks Sharlua,

 

That Jill Bolte Taylor is one funny lady she made me laugh so much as she described her SAH.

 

I really think laughter can help us mend our poor broken brains. (No Doctor but my theory).

 

When I am happy I feel like I could walk more and do so much,  I was told I'd never be able to do.

 

Daffs hope today brightens you up even though it's overcast  !!  but sun is trying to break through in Kent.  

 

Be Well one and all and I do love my BTG pals xx

 

Love

 

Win  xx Keep on the Sunnyside Daffs xx

[Daffodil]

Beautiful responses by you all. Thank you. It was like someone wrapping me in a hug and giving me some hot chocolate ( someone singing funny songs too...win? ) I just needed to speak to those of you that get it. And you all do get it as I know as you live it also. It's not a bad thing but as Macca says we are the 'experiential consumer' in all this, why would anyone else get it?

Another day dawns and despite a shocking nights sleep I feel ok this am.

Sarah Lou I really appreciate your comment and was so thrilled with your recent achievements. I am glad the ear plugs and kit still help you, it's still my fall back emergency coping kit still too and only yesterday my neighbour asked did I still need my stick when out walking..." Yes unless I want to be sitting "was my reply . but I keep looking up and forward to see those rainbows.

Sharlua, a bleed is a bleed, yes they are all different but that brain fog and the stealing of words is just as darn frustrating to us all as we know that wouldn't have been how we were previously but you're doing really well. Keep going.

Macca and Win. Big thanks from me for your words. Win, you are a marvel and I would love to whisk you along with me when I do those trips sometimes but in a way you are travelling far and wide as the amount of people you now have singing in strange circumstances means we carry you with us, I know I do.

In the words of Ernest Hemmingway ' the world breaks everyone and afterward, some are strong at the broken places '

[Louise]

Hey Daff

 

Just reading this and thinking I could have written it – tired brain that is never fully charged up and raring to go.

 

People well with me its family seeing me as being different, so their method to cope with that is don’t see me at all…

 

I am not sure its more shunt than SAH I think SAH has a lot to do with it, its how our brains work now we’re re-wired maybe you not for sound…

 

We are indeed the lucky ones because there are lots (I saw some in the rehab hospital) that just don’t do as good as we do, even though we end up with other hang ups like you wishing you could be part of the breakfast mayhem, and me wishing that family never ignored me because of something that I couldn’t help happening or changing..

 

I feel my shunt stress yes mostly weather changes though.

[ClareM]

So well put Daffs. After 8 months I think I am coming to terms with my new brain. The mornings are the same for me, gone are the days when I was up at 6.30am all times of year, off and out running with my dog. Hopefully I may get back to that even if only once or twice a week. I too get stuck with words, those who know me well help out with a reminder of the conversation. I too can't bear those who say- 'I'm just like that' or 'I do that all the time'. It doesn't make me feel any better just makes me angry because I didn't use to do it.

 

Went to my nieces wedding at the weekend and had to have a 2 hour sleep during the evening. My daughter said I was no fun anymore, I used to be the life and soul - not nowadays, or yet anyway! Told her she would have to take my place and learn to dance madly! At least I was here for the wedding and hopefully hers in years to come.

 

Thank God for Karen and this site. If not for BTG I would have no one to talk to and compare life post SAH. Experiential consumers - I love that expression, but it is what we are and at least we have each other to share our experiences with. 

 

Clare xx

[Winb143]

Right I know I will get told off for this but it seems apt so sorry all Mods and Karen but it is for a Mod

 

Hit it Win ...Earplugs in All

 

Well there's a dark and a troubled side of life.
There's a bright and a sunny side too.
But if you meet with the darkness and strife,
The sunny side we also may view.

 

Keep on the sunny side, always on the sunny side,
Keep on the sunny side of life.  Yahooo (I added that)
It will help us every day, it will brighten all the way,
If we keep on the sunny side of life.

 

Love to All xx

​

Hope it cheers you all xxxx

[Karen]

I'll let you off, just this once Win! 

 

Such a lovely, honest thread and some equally lovely, heartfelt replies. xx

[Winb143]

Phew thanks Karen xxx it was to cheer our Daffs up  xxxx lol xx

[Gemma B-B]

Hi Daffodil,

 

A very interesting post that I think sums up how many of us feel a lot of the time. Thank you for sharing as it is interesting to hear your perspective as someone a few years down the line who has useful advice and reflections to offer.

 

The sudden change in activity level after a SAH is a hard one to take. I am still adjusting for it now and trying to accept that I am still in the early stage of my recovery, 9 months down the line. I find it hard to take that I constantly have to weigh up my options and decide on what I really want to do, rather than do everything I want.

 

Having gone from a full-time demanding job and an active social life I am still off work and partaking in a year long rehab programme. Whilst I know I am VERY fortunate to have access to this level of rehab to assist me with my return to life and work, it also makes the changes hit home on a weekly basis as I am confronted with the evidence of more things that have changed and have to be worked around.  

 

I also find the unknown aspect of the future a difficult one to come to terms with. At the moment I am going into work on a 'therapeutic' basis (so still on my sick note and not actually doing any contractual work) whilst also going to rehab with a plan to start a phased return in January, which will be a whole year since my SAH. I do not know the extent to which I will be able to return to my previous job and might have to accept part-time or something similar, which is not what I expected at 28. It is encouraging to come on here and hear other people's experiences and successes in returning to work and I guess time will tell on what I can achieve.  

 

I particularly find your comments on never getting full back to full battery very interesting. I completed a fatigue diary as part of my rehab and found the same thing. No matter how little I had done, how much I had paced and slept I am never back to a 'full battery'. I guess it is just a matter of trying to manage it as best as possible.

 

Thank you again for sharing your thoughts and insights.

Gemma xx

[Colleen]

Hey Daffodil,

 

Just wanted to chime in with a big "I hear that!".  I didn't need a shunt or have the same degree of problems you and some others have, but do know what it's like to not be yourself, or at least the self you were used to knowing.  It really is kind of interesting that the med teams that are so great at saving lives don't give a little more direction or insight for changes to expect in your future life.  Guess they are just too busy, kind of like the world these days - on to the next one.

Sometimes it's such a comfort to just get a little validation and that is what BTG is so wonderful for doing.  Daff, I truly hope your weather has brightened and that your spirits have lifted.  After everything you have endured, you deserve to feel good about yourself and the things you CAN do.

 

Take care, sweetie.

[kpaggett]

Daff,

 

I'm so glad you posted this because most of the 'elders' here just respond and we still need support too sometimes.  

 

I too feel that morning dullness, you feel as well as night time shut down and I never had a shunt.  

 

The fatigue is a different form than right at first too for me.  Often I can make it through things, but I'm biding the time until I can just get relief from whatever it is.  When I find myself deploying some of these 'white knuckling' techniques, it's usually because I'm not fully embracing my deficiencies.  Acceptance is a weird state for me and I've learned that it isn't static at all.  So I do accept the fact that I will oscillate from total acceptance to unacceptability.

 

In the sprit of sharing thing later in recovery:

I don't know if anyone else thinks of this, but doing something for the first time after the event always brings up anxiety of, 'Can I do this?  what will I do if I can't?'  Every time.  

 

Then, if I successfully complete the task, I am fine the next time.  We went through this when we were children, but we didn't have that sense of making mistakes.  Our parents told us when mistakes were made and then we would change.  Having an internal dialogue with myself now because I've had years of formulating what a mistake is and reformulating the idea from 'I should be able to handle it myself' to 'I can get the issue at hand solved by asking for help' is really hard sometimes for me.  This anxiety that precedes a new situation seems all pervading for me now.

 

I do think we, who are farther down the path of recovery, should post more often in the spirit of asking for help is a new better way to go about life now.  This site is for us still too.  And what a good role model we can be too.

Thanks, Daff.

~Kris

[Chelle C]

Daffs,

 

Although I don`t have a shunt fitted, I really do get what you are saying. 

I still have to take my time getting out of bed, I also have a fog in my head

and that really frustrates me.

 

When I get a headache it doesn't just affect my head, it affects the way I function,

certain people in my life think I should be over this by now, I WISH. 

No one understands because they can`t physically see it.

 

My memory is terrible and I forget a lot of things again this can be annoying to others

I don`t do it on purpose, I really can`t help it.

 

I don`t say anything about having a headache anymore because I can`t handle the eye

rolls from certain people if I mention it,

 

I still get so tired but I don`t mention that either, I just keep it all to my self,

 

Here is where I unload I am able to come here and talk to people who understand,

people who won`t and don`t judge me for being me.

 

It`s lovely that you were able to come here and off load all that you were feeling Daffs

I cried when I read your post,

 

We all have the Wonderful Karen to thank for  giving us all somewhere to turn and all

the wonderful people who help us all get through the really difficult times.

 

We are lucky to still be here and it`s learning to live with the hand we have all been dealt

that can be the hardest part, but somehow we will do it.

 

I hope you are feeling better Daffs

Love

Michelle x

[Daffodil]

Michelle, Colleen, Gemma, Clare, louise and Kris thanks for your kind and thoughtful words. Yes it has been easier as the week has gone on but it's been a week of a bad head. I have my annual MRI next week so no doubt that is casting a shadow of uncertainty and is unsettling me but Bottling things up isn't an option any more for this head of mine So i have learnt I have to put it out there so thanks for being on the other side and listening and understanding,

Kris in answer to your question. Yes. Every time I have tried to regain , whether it was walking in the early days or getting in a swimming pool for first time again (threading a needle took me months to learn and coordinate to do) there is that fear and inner self judgment of what if I can't find a way through or learn a new way to do it.

 

Then there is the frustration at the realisation that some things still are out of reach but after the sweet success of doing something again for the first time again , regaining it, there is a little inner comparison knowing that you do it differently now and the energy it takes to do it is so different and greater. Externally people don't know right, they can't tell ? After all whatever it is you do still gets done, only we know the cost of having had to learn and find a new way to get there.

 

I do ask for help more these days, I learnt that lesson very early on when everything was out of reach without help but now people see me do so much more of the 'normal' that asking for help becomes harder for me but maybe that's my ego talking.

[momo]

Wonderful replies here Daff for a wonderful lady, thank-you for the support you and others have given me on this site.

 

I can't really add much more to what has already been said such wonderful words,  but would just like to say (I think I may have said this before somewhere) recovery from this I think is ongoing it doesn't really stop. I see improvements from even last year , I am now 7 years post SAH (just)...

 

I would say that's maybe the same for all of us I would like to think so. The only problem is that it is such a slow recovery...when i feel a bit down I just remind myself that I'm getting better and there is more improvement to come. I'm sure this will be the same for you Daff.  

 

Regards to all.

 

 

[Sammy Anne]

Dear Daff,

 

This one's for you.

 

"I WANDERED LONELY AS A CLOUD"

I WANDERED lonely as a cloud
That floats on high o'er vales and hills,
When all at once I saw a crowd,
A host, of golden daffodils;
Beside the lake, beneath the trees,
Fluttering and dancing in the breeze.

Continuous as the stars that shine
And twinkle on the milky way,
They stretched in never-ending line
Along the margin of a bay: 10
Ten thousand saw I at a glance,
Tossing their heads in sprightly dance.
 

The waves beside them danced; but they
Out-did the sparkling waves in glee:
A poet could not but be gay,
In such a jocund company:
I gazed--and gazed--but little thought
What wealth the show to me had brought:

For oft, when on my couch I lie
In vacant or in pensive mood, 20
They flash upon that inward eye
Which is the bliss of solitude;
And then my heart with pleasure fills,
And dances with the daffodils.
1804.

 

Lyric poem by William Wordsworth

 

Big hugs,

 

Sammy Anne

[Macca]

Kris,

 

Well said - it is important to remember that even those of us further down the line also still need support from time to time.

 

Recovery can still be a roller coaster even after years  of learning to live with this experience and after helping others.  Although further down the road, we are not at the end of it yet by any means.

 

Sammy Anne - Lonely as a cloud - I love this poem, such a shame it was maligned by the old Heineken beer advert which slightly corrupts the memory of its brilliance for me.  However, your sentiment is well meant and well said.

 

Macca

[codewarrior_777]

Hey Daff,

 

Although I can't empathize with your physical limitations since the 'bleed', I can with the with the sadness and yearning for life 'pre-bleed'. 

 

It isn't greedy to want your life back. I know if I was in your position, I would too. 

 

Do you feel pressure in your head in the morning? It could be an over/underdraining issue with the shunt?

 

I'm so sorry that you don't feel you can reach your full capacity. It's only human to want to. 

 

Have you tried acupuncture? Maybe it can help you with this. If you can get over the needle thing, it can really help with physical stamina. The Chinese believe the body is ruled by Chi energy and when this becomes imbalanced, your body is not running at it's optimum. Obviously, something like a brain bleed there may be more of a struggle to come back to normal. I just wanted to put that out there as it's helped me tremendously in the past.

[Daffodil]

Hey CodeWarrior , no I haven't had acupuncture since my SAH but I have had some gentle massages which has been good.

I think my shunt is fine , thanks for checking, I've just got back from my annual MRI today which I have as I have a neck on my coiled anneurism so they keep an eye on me and I expect they have a check on the ventricles and shunt whilst I'm there , anyway either way a yearly brain check is reassuring if a noisy event for me.

Anyway I guess I also wanted to say please stop giving yourself a hard time, none of this is easy what with the bleed, the surgery and how they place the shunt , it all plays havoc with emotions and our normal rational thought. Be kind to yourself. That goes for everyone.

One positive , (I think;) ) is that my journey with all this means I have had lots of experience of pressure change which means I do know my signs of both low and high pressure so I would hope that I know if my shunt was over draining or under draining, I am reknowned by my neuros to be super sensitive to any pressure changes. Ive helped them understand the feelings a bit more to be honest and how it physically manifests, it's why I had to have my shunt setting changed quite a lot early in.

No guarantees in this life but plenty of opportunity. so keep smiling even if we are a little bit broken

[poppy1]

Evening all,

Daff you inspired me to write down my thoughts tonight. I haven't posted for a while, as I haven't been at all well and didn't want to be a moanin myrtle , cos I had nothing positive to report. Since last August when I had a stent fitted and further coiling, it's been downhill all the way. The pain, medications, side effects, nausea, chronic insomnia, memory/balance loss. my neuro functions have deteriorated - noise & bright lights set off an attack and to my acute humiliation, my whole body starts to shake. Last but not least, I regularly pee my pants ! lol,..

 

However, it's not all doom and gloom! Last month, realised I had to do something to help myself and engaged a dietician and therapist. It has been money well spent, I am now on a raw high protein diet (with ice cream) and with assistance I can do a bit of excercise. My weight has dropped, my skin is clearer and it seems to have given me the lift I desperately needed. My anni is still there despite 2 coiling procedures and it scares the hell out of me as my consultant has advised further coiling won't be possible. Next scan February !!

One other thing, I am menopausal and my wonderful GP put me on HRT so whichever change or both together, something seems to be working. Only thing now is, instead of the night sweats, I'm freakin freezing! Must be the extra hormones lol.

Night night all, oh my goodness it's past 9pm

Lots of love and kisses for all you special people..

Di (poppy)