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 '

Hi Andrea.

Not unusual at all . I have a key ring on my front door keys with a medical ID symbol and engraved on the back of it states I have acquired hydrocephalus, my hospital number and also SAH and the date. I Also have a summary card I created in my notebook that stays in my handbag which summarises my treatments for SAH, my ' other' anneurism , my shunt settings and key contacts personally and medically and last but not least I carry a Hydrocephalus alert card in my purse.

I think even if I didn't have a shunt I would have wanted to keep some form of record with me when I started going further from home. It helped my confidence initially to know I had something with me and also as my kids were young I wanted to be able to convey history without relying on them should the situation ever arise. I have used the card of my history a number of times at hospital and when meeting new registrars at check ups etc and actually having a simple condensed version of facts helps get across the key information so maybe try something like that.

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

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.

Hey Luke. So glad mum is home!! That's an amazing feeling when you get to come home but yes slightly odd as one of the first of many realisations as you cross the threshold that you are a rearranged model of the one that left. You look the same, recognise yourself in the mirror but your thoughts jumble up a bit differently and you may not do all your did and that's odd and hard and takes a good while to adapt to. But adapt she will.

I was slightly euphoric when I got home which created false energy levels for me, it was almost a chemical state. I think I was convinced in my mind I would pick up where I left off But physically my body didn't join in for me so For me it meant I would just fall over all the time...it was a time of many bruises and I had a babysitter for a good while after discharge

If your mum is feeling well and her energy levels are proving constant and she is drinking well then as you say it may be a good thing, try and get her to pace things if she can though, don't baby her but suggest that after each thing she does she just rests that brain for a few moments. Also if her feelings , energy or mood change and you are worried she is doing too much you can always talk to the GP. They won't discuss your mum directly but may offer you some advice.

I would be surprised if the critical illness doesn't cover stroke and as Karen says I think that's the angle to go for. Also an offer of a letter from Gp consultant may well change opinions. Ask them to clarify exactly why an SAH and bleed on the brain is not considered a critical illness , there's not much more that is critical than that and most don't survive it . Go back to them. Don't accept the first answer.

Luke. Good to hear about Mum and glad headaches are under pain management , it makes a difference to mood and wellbeing when that is controlled , sounds like she is having good attentive care.

Super Mario is right about the water, you will hear it mentioned a lot on here. Even now if I don't drink enough water or fluids in the day then my head lets me know so let mum know this is a new habit for her to get used to and its a good one. In hospital that was the one thing they were not compromising about was to keep drinking so keep encouraging her.

They will monitor the minerals and levels closely and if needed can supplement so she's in the right place if there is any change. Your Mum had coiling yes but not a external brain drain fitted? Remember her brain is working hard to get rid of the unwanted blood and which has disrupted all her natural levels but my personal theory is they think drinking water has something to do with flushing and replenishing the CSF which of course got contaminated with the bleed but don't think that's proven anywhere but based on our shared experience it really does help.

So I'm not going to tell you not to worry as its natural to question and wonder but I agree with the other two and also the time spent worrying will just rob you of some time you could spend doinb some more enjoyable stuff.

Sometimes the NHS can surprise us in its ability to be efficient so hopefully that's what's at play here and if it isn't then just hold onto the fact that there can be nothing too amiss as you would have been straight in by now.

My annual MRi date just got scheduled , a little later than it should but they called me to explain that's because they wanted to give me a later appointment because they know it's a journey like Wins and want me to avoid rush hour and it was the first they could offer. Sometimes human care, logic and thought does come into play!

Hi Luke, sorry to hear about your mum and of course she will be disappointed not to be able to come home but she will soon hopefully.

Words of wisdom, well I was 39 when I had mine so my kids were a lot younger than you I suspect but things that helped was having everyone understanding I would need some space and time out for peace and quiet and rest and encourage me to do that, also not all talking at once when I was home, allow me to build the noise tolerance back up gradually . As Win says any drama is not good so understand that situations may affect her differently and be tolerant.

Also I found having some meals ready prepared by friends was fabulous as I could t stand up for long after my long stay and ops and neither could I cope with laundry and cleaning, i couldn't do that for a long while so friends and family stepped in to help hubby do it. Made a big difference. Sad to say I am now back cleaning and washing

Also just offer to accompany her if she wants to build confidence in things she used to do before and feels a bit nervous about doing them, that can happen post SAH.

Good luck, regards to you, mum and dad

Mandie. Physical stamina was a big thing for me and really bugged me if I am honest. I went from high speed to less than snail like and like you had two surgeries in quick succession. It felt like I would never get my stamina back.

Here I sit three years on and it's very different picture and whilst i can't do what I did how I used to do it I have new and improved stamina levels but I just need to make allowances for myself.

As an example I have two kids who are now aged 12 and 9 and on our recent holiday we walked everyday for quite a few miles with the dogs. My allowance was I took my walking stick which I needed for standing and balance when I was discharged but now walk without so that I could stop and rest if needed as my balance can still surprise me. I also then added back in my little time out rest in the afternoon. That way grumpy mum didn't show up from too much fatigue....well not that much anyway.

The key is too build up very steadily and if you get the funny head feelings then it's time to stop and try again another day. Some things I used to enjoy I can't, so yoga with inverted moves are a no these days but I exercise every morning with light hand weights for a gentle cardio work out but done at my pace. Kids giggle at my efforts but it wasn't long ago that I couldn't lift anything, I even practice balances although still topple onto bed from time to time keep hope and you'll be hiking again mandie

I was advised to steer clear by my neuro more to make sure my BP remained steady so the most I ever have these days if I am feeling adventurous is a small lager shandy! I figure I had more than my fair share in my youthful days and I don't miss it at all now. If I want somethjng for special occassions I have elderflower fizz which is delicious without the topped up headaches.

Clare. Good advice from Win. Enjoy the holiday. Enjoy the break and try to chill and have some fun.

Employers do have to consider your request for flexible hours or amended contract hours seriously but realistically the consequences upon them of refusing you are small and its pretty hard for the employee to chase so maybe use your break to think about what you would like to do longer term. if he's really refusing your very good suggestion then working for an inconsiderate employer could be more stress than it's worth.

I realised you are on SSP but that doesn't continue long term either so worth putting your suggestion in writing to them, detailing it properly and asking them for a response and then if they say no to that offer them the alternative of how long it will take you to get to full time, be realistic though and ask them to reply. Just sharing my view.

Gemma, sounds like you are getting some good support and I know you have had similar challenges to me with the cognitive issues. Keep taking it slow as much as they allow, it pays off. Occ health is so right about the brain injury taking much longer.... used to be no one who had a stroke or brain injury could go back to work, but we have learnt so much more these days that the brain can heal but it has to do it slowly and without extra demands and not too much sensory stimulation to contend with but work can really help and of course pays the bills!!! That's hard for employers to understand, accommodate so I can see why it falls down so much. Frustrating though!

Great to hear Mrs subs is being well monitored and hard you caught this. Hope it's rectified sharpish for her

Aw honey this sound like a dreadfully hard situation and home life is fraught. Sending you a smile and virtual hug for coping so well with this and your own health.

Like Win I don't have much to offer to be honest. Does your husband accept his illness? Does he have help or counselling? Do you and the kids? Depression is a dreadful illness and it consumes people and families. Your memory isn't the issue here, yes you forget things and you are going lose and forget more the more stressed you get so do yourself a favour and be kind to yourself about how well you are doing.

Sounds to me like you really need some help. Please ask for it, go see the GP and tell them. Ask them to Sign hubby up to https://www.bigwhitewall.com/landing-pages/landingv3.aspx?ReturnUrl=%2f#.Vfp64IGkqrUand also maybe set some rules in the house that if anyone says somethjng negative or unkind they have to follow it with an apology or a nice word or put money in a ' intolerance' jar ! it sounds cheesy but you need action sometimes to break some habits of behaviour.

Hey Clare. Firstly well done for what you have acheived so far, I personally have yet to get past twenty hours but I and my employer have accepted that is all that is acheiveable for me at present and so that is now my working arrangement and I have accepted a role on that understanding.

I think the key is communication , open and flexible attitudes from both you and your employer. Whilst They are right in saying most phased returns are quicker, (although 6 weeks is pretty accelerated) they equally must appreciate that each circumstance regarding health is different and that's why you must put plans in place so both parties understand what you are aiming for.

Do you have occupational health support? If not then I suggest possibly putting in place two week check ins with your line manager to talk about the previous weeks how they have gone and put plan in place for next two weeks and regular checks to make sure you are coping with the progression and increase of hours. Whenever you increase try to tack on some extra breaks in the day if they allow this. This collaboration helps the business and It helps you. It doesn't sound like theg are being unreasonable they just want to make plans and understand what may be possible.

Lastly, and this is a tough one honey. They aren't obliged to keep you on sick pay for ever, at some point a conversation has to be had about whether you have reached a plateau of what is manageable for you physically, emotionally and preserves your capability to work whilst respecting your other interests and responsibilities outside work. At that point if you can do no more it may be a change of your contracted hours through a request for flexible working , temporary or permanent, or last resort, a parting of the ways which would hopefully be done in a structured and amicable way.

Please don't get cross, it's not personal and also the stress isn't good for you. Think about what you want Clare. Where are you aiming for? For me, I wanted to know what I could do, I wanted the purpose of work ( the money too!) but most importantly I needed to know what was possible or not but I knew I probably wouldn't get back to full time, my doctors agree with the cognitive defects I am left with .

I was quite a bit different in circumstances as I was off work for over16 months before medically I was considered fit to even start back and It's taken me a long while since then ( 18 months) but in that time I have found new limits , gone past them,, found new ones again within my other life demands and I am lucky to have been able to negotiate and have support to make that work for me. I know not everyone can take that time and their employers firms can't absorb it but flexibility is key on both sides. I am still aiming to increase things and my hours but I will do it slowly.

Talk to them Clare. They value you, help them to understand.

Hi Jerome. So you picked Jerry as your avatar, how apt as you really have been through some scrapes like he does but I hope you will also come through it and get your cheese !

The after effects from the bleed are scary and then there is a horrid cycles of the fear and anxiety we naturally have releasing chemicals which further irritate the injured brain and it's all gets pretty terrifying at moments. When it's bad try and breathe slowly and deeply and let it pass. The more times you can let that happens will build back up a little bit more of confidence in your body.

You're not a freak by any measure, you have had medical issues but you are indeed a survivor of something that takes time to recover from. Maybe you could write a diary, it helped me to keep track and each day find three things I was pleased about. It could be the simplest of things but that's the thought you focus on. There will be things that are improving and those are all worth celebrating. Also set yourself little challenges, not too much and don't beat yourself up if you can't do it.

If the sensations are increasing in any way then you should always get that checked out, that's my mantra in all this, if things get worse then don't ever ignore it but do be be kind to yourself Jerome. Sounds like it's been a very hard time for you. We know.

I also have another aneurysm they watch plus my coiled one but the Wierd sensations continue for me and can still surprise me. I can feel like I am being spun around even though I'm standing still, I get a very 'hot' head sometimes and then there is the ants ...although I like to think of them as spiders as prefer that to ants!

I also get some physical pulls and shifts but that has been less and I put that down to the scarring from the surgeries healing as it feels a little like that. I have been woken from sleeping with odd feelings and just watch and wait to pass. If it gets worse or painful I figure then I need to do something if not then I just watch and wait for it to pass, so far it always has.

Talk your worries out here Davis, it's far better than bottling it up.

Hey Paul, think you've had some super replies from fellow shunt club members and hopefully this will help you as you continue your healing. Do it at your own pace, it's the only thing that will work and you will find it.

Sharing also my thread from earlier in my recovery tracking my thoughts on dealing with the hydro and the bleed effects http://web.behindthegray.net/index.php?/topic/2501-tracking-sah-recovery-with-aquired-hydrocephalus-my-thoughts/?hl=hydrocephalus

Take care. Baby steps.

Staysure but pricey

1. Yes to headaches but can't attribute them to shunt specially.

2. Can't experience a real 'high' pressure as shunt will stop that but I do know what that feels like for me having experienced it a number of time pre shunt. Low, yes I get a few symptoms, exaggerated by low pressure weather front but it has improved with time

3. It's only three years since I had mine so I still get some sensation around site and I know if it has drained suddenly, often followed by a bathroom visit

Hey Sammy. Glad you have had some help, it is important to grab all e support out there even if sometimes it's a battle to ask for it. I had PTSD diagnosed also and the counsellinh really helped me.

Flying? Well I came on here like you seeking reassurance and found Super Mario flying here there and everywhere and thought, you know what I want to do that too.

I have flown twice now , am off again next month and I can honestly say to no Ill effects other than the effort and exhaustion of the travel itself.

Top tips from me. Get a letter from your doctor declaring you have a VP shunt and get it translated as well if you can't go through scanners. I was advised not too go through but every shunt is different so you may need to check.

Take some good ear plugs and wear them from the moment you get in the terminal. Drink even more water. Suck Polo mints. This one is a gem from WIn. Sucking one of these calms and helps with the takeoff and landing. And wear sunglasses to take the edge off, they may think you are a celeb!

Lastly, good insurance is a must , it will cost you a premium I am afraid but well worth it for peace of mind. But other than that enjoy. It's feels good to reclaim some of that previous independence

Keep on keeping on fella. Hope you enjoyed your day today and sharing a quote from Winston Churchill on marking five years that have passed " It is a mistake to try to look too far ahead. The chain of destiny can only be grasped one link at a time."

Sir Winston Churchill

British politician (1874 - 1965)

Beth, the only way people (family/friends) are going to know how your feeling is to tell them why not get them together, type it up print it out and start of by telling them that you know just how lucky you are to have survived.. tell them that there are others who understand because they have been through the same... Just let the words flow when your typing ..

Louise, I found it so useful writing things down and I think you know I started my blog after my SAH and shunt which I used to let friends and family know how I was feeling and that whilst I may look ok things were very different. I still uodate it now, less frequently than I did but people ask me for updates. Sharing here in case it is of help to anyone . http://popgoestifty.blogspot.co.uk

Hey Beth. Sorry to hear about your drawn out wait to get help post SAH , I read an article recently where Sharon Stone experienced very similar to you with delays and misdiagnosis and she was sharing how she's doing 15 years on. Have to say she did another naked photo shoot to celebrate ...not suggesting we all do that to mark up 15 years on though!!

Anyway, everyone has shared to take it easy as much as you can. If you have to work adopt a new style with much more breaks of just silence to rest up and write down how you feel, it can help.

Anger is a natural part of the porcess I think but keep talking to people, don't bottle it up and be kind to yourself.

Also your 20 year old son is adult enough to understand that mum needs a lot of help and understanding right now if you explain it to him and how it feels, remind him if he doesn't get it straight off, show him some posts on here if needed. My daughters were much younger , not even teens yet but they understand my brain took a knock and help me make sure I don't overdo it and you need those who love you to be cheerleaders around you.

Take care. Keep drinking the water .

Hi. I'm glad you are seeing your doctors again, speak to them , tell them your worries and listen to their reassurance. As Super Mario said I'm sure everyone who relies on mechanics like we do to stay alive worries about the reliability of it but you have to start somewhere and each day you will build up your trust in this amazing device. I know I have.

All I can tell you is that as someone who needed to have a shunt put in some months on from my initial lengthy stay and the Extra ventricular drain that was placed post SAH is that I had time to seek treatment when I knew something was wrong and I knew it. my concentration and recovery nosedived, my balance was off and I had dizziness and nausea and increased pain.

I had time to go to my GP who agreed that I probably was seeing a repccurance of hydrocephalus , I got a scan locally, got an ambulance transfer to my neuro hospital and despite having very high pressure. as shown by my scans even then It was deemed I was able to wait another 24 hr before I had my first of a few lumber punctures

Each time after an LP we waited ( uncomfortably and painfully I'm not going to lie) to see whether my ventricles would work more efficiently . They didn't ( apparently the procedure can sometimes kickstart it ) so I had a shunt put in. It wasn't an easy decision , I had to make it, not my family, me, but I would choose it again in a heartbeat.

No one can tell me if my ventricles will recover but I am reassured that my shunt is there, keeping me balanced , keeping my brain well and it will allow you to recover from your bleed and go on and find your new normal. It won't be the same but you have a fabulous opportunity, don't waste it worrying over something which you have no control over. Talk to someone about your worries, counselling will help.

Trust me the discomfort from going high pressure is something you would know about but Bottom line is if you ever think the shunt isn't working as it should for you based on your feelings then GO GET CHECKED OUT. They will not mind in the least.