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Daffodil last won the day on June 25 2016

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About Daffodil

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    Mum of two daughters, married living in leafy buckinghamshire. I had a Grade 4 SAH and presented with acute hydrocephalus in March 2012 when I was 39 but the bleed was was successfully coiled ( just a teeny neck left) and a drain fitted to balance fluids. I spent a long 7 weeks in hospital before discharge with a fair stint in HDU . Unfortunately my hydrocephalus reoccurred post the SAH and I was readmitted with flashing blues and ended up spending another 4 weeks eating the hospital food and having an adjustable shunt placed in July 2012.

    Now nearly four years on and life is more steady for me ,I'm back working part time for a large consulting firm in HR strategy, my neuro folk check my coiled and the second uncoiled anni yearly and despite there having been lots of bumps in the road with some grey days ( excuse the pun) throughout it all this forum has been a very helpful and reassuring place to come for help.

    I'm mostly enjoying some better days now and am now privileged to be a moderator. I also started blogging whilst in hospital having my shunt placed and still blog occasionally about my experience .
    If you want to read my more Personal account of my SAH recovery you can find it at http://popgoestifty.blogspot.co.uk/
  • Location
    Bucks, UK
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    Swimming and baking
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    HR Consultant
  • SAH/Stroke Date

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  1. One thing to add, no marriage is perfect, it's a partnership that requires effort and work and sometimes it can be completely out of kilter so you're not being a pain actually you're being very honest and brace. The SAH really throws a spanner into the Worksop our predictable patterns,, we, who have the bleed don't quite operate the same way any more and the partner had to witness that loss and shoulder the burden of all the worry , caring and taking on everything, so basically both worlds and routines are rocked in similar but also very different ways. Sex is hard to talk about sometimes. My libido was non existent post SAh and to be honest I had no physical energy for nearly a year afterwards and he was scared for me too. I can't tell you things are back to where they were previously because they are not but we our relationship is different now, I'm different now but we talked throughout and made sure we kept up some levels of physical intimacy and caring and sharing contact even if that's just little touches.. Let him know what you need , ask him? Request hugs and offer and give him hugs too and both make more of an effort, baby steps to rebuilding that confidence. I guess that's what I meant by lean in to each other. You both feel fragile and a little broken right now but together you are stronger.
  2. Hi Vermont girl, why would you feel you have wasted this time? Rest is important and using physical energy will take more out of you right now. Put your energy into the things that make healing better, work out what works for you and what doesn't. if you had broken a leg you wouldn't be thinking oh I should go out for a long walk, now think about the the injury your brain got, imagine it like a big bruise across the surface of your brain where you bled and be considerate of that whilst you invest in getting better. Go steady
  3. Agree with super Mario, this is one for your neuro team as diving I presume will bring considerable pressures to bear so definately check before you resume.
  4. Hi, it's very difficult to predict what the outcome and regains will be as each bleed is individual but a lot will depend on Dad, his attitude and desire to recover some of his previous abilities. I personally got sent home and had a rehab plan at home from docs and Headway but I had young kids so just wanted to be there but he will definately get assistance in rehab that will help him set the foundation for the future. Good nutrition is so important and rest essential. when the brain is in acute healing immediately post SAH there are a lot of things firing and trying to switch back on but not necessarily all in the right way and the effort to do things uses up energy really quickly which makes it hard to concentrate. Main thing is if you think anything is deteriorating then ask questions to medical team. One thought, is the rehab somewhere where his dog can come and visit? That would be such great therapy. When I got back home after a long stay absent my dog was so pleased to see me but so gentle with me and he has been a huge part of my recovery. I couldn't walk more than a few yards when I was discharged , I had to be help to shower etc but I was determined I would walk him again. And I do. I always take a stick when I walk uneven ground as in the early days I face planted more than I would have liked but he always stayed close and then two and a half years ago I took the plunge and got a puppy who I have trained and of course who needed walking everyday. My dogs have been part of my ohysical rcovery but equally my mental recovery. They came at my pace, gave me unconditional love and soaked up the tears. so keep hope, encourage Dad, listen to what he wants too and notice his signs when he needs to rest his healing brain, dont overstimulate but keep him curious and if you can get him some time with his four legged friend
  5. Hey Ash, I had a lot of sickness and had grade 4 but I also had hydrocephalus which was primarily the cause for me but depending on where Dads bleed was it could have affected his balance and getting up swiftly triggers an effect like a motion sickness. my suggestion is just to note how he moves especially from lying to being upright, do it gradually, sit a while. He could also try sleeping slightly propped up on pillows and see if that helps but I would get it checked at the very least with GP if not your treating neuro team. also note his eating habits, more frequent snacking so as not to get hungry and let the brain run out of energy.
  6. Hey Yoyo , well done for having the courage to post and join the group and it does take courage to put yourself out there and admit that things feel broken and that you weren't as you are, that's a huge deal but we , as Macca says so well, know that feeling, have had those fears and together we are stronger. first, and this is for you too Andrea, it's ok to be a little lost but when feeling that way offer yourself some kindness and generosity and self compassion the same as you would for others for what you are having to learn and adapt to. It's a big deal and no easy path. the SAH arrive with the force of a hurricane, each of ours unique, no one knows the path or the destruction it wreaks as of course that is as unique as the person we were before. One thing we share though is the brain we had before altered in that moment, it can never be exactly the same as before so change will be your constant as you find new boundaries that weren't there previously. Yes some people make ' full' recoveries and in that I read that they manage to reclaim their previous pace and style of living but many of us have no choice but relearn to do things, to learn the new ways that work for us now, find the new pace, and that takes time to adapt, to adjust. But it gets better with time. whilst we are exploring this new operating brain of ours that our partners also are adjusting to the fact that this other person who was oh so capable before their bleed may not be able to do all they did , may never do it and whilst torn between wanting to protect you and keep you safe they also have a loss to deal with as that plan of your life and how it was going changed is gone and a new plan is to be made, so great advice already. Talk if you can. Love makes that harder and easier. Easier because you want to lift each other up and harder because neither of you wing to hurt one another. But come together, lean in not out and it's the step towards getting this new future inked out together. I was 39 when I had mine. My life today is very different to that previously but Five years on My aspiration and ambitions have shifted to take the reality of my new state but I remain curious about possibility and I find happy in the smallest of things. The two year mark was the hardest to be honest , I realised I was trying so hard to force myself to get back to what I was I was losing sight of what and where I wanted to be. So I focussed just on taking each day, celebrating the little and big victories and sitting out the storms each time they hit. It's a change in pace and you'll find yours.
  7. Hi boom and welcome to BTg, it's good that you may hopefully get some answers and some shared experiences that might help you make sense of how you've felt these past years since your bleed. i had large bleed back in 2012 and looking back to a year before that I can almost pinpoint when I think i may have had a small bleed , nothing was conclusive in scans at that time but I feel that it was probably the case but personal speculation on my part as i cant ever go back and find out for certain. Karen who set up the sight often lets people know that in the time she has run the site it's a rare occurrence of a rebleed but it's always important to get regular checks post a bleed until discharge. You asked the following and I'll share my thoughts: 1. Forgetful long and short memory issues. Yes, I saw a neuropsychologist after my sah and then attended a course to help me learn new ways to improve my memory and it has improved drastically in the last five years but if I'm tired or overwrought I still easily forget. They explained it's not your memory is bad but your ability to process the memory you are making doesn't work as well so you have to create some 'hooks' to what you want to remember, make mental pictures and associations, repeatable things that are said to you, write things down where you can see them. 2 . Confidence and self esteem has left the building. This was a big deal for me as I used to be so independent and hated the dpendance I found myself in and I struggled but you just have to keep making the circle of what you do wider each time and try new things and work out what is comfortable for you now. Easy does it and be kind as you go to yourself. It takes time to build back up. 3.. No bearing in or on where my life is going. This is probably associated with the second point. Sit down and think about your strengths, you still will have many and find a way you can play to them. There will be something , ponder it and follow that path. 4. Very anxious and uncomfortable in social situations. Again, the above wont help but I found sometimes if you can actually manage to go places on your own and just sit and be there on your own after a while it's not as overwhelming to be part of it. Don't cut yourself off but try to find new ways to socialise that you are more At ease with 5. Feel as though the old me died 4 years ago. To a certain extent you have had to relearn what you now can do which before that you had 37 years of knowing the old one. So it's early days testing and explorinh new possibilities. Some things you will still keep doing but others are for finding new ways. Be curious and that may open opportunities that help you. 6. Have stopped going out as I no longer drink alcohol as a result..I don't drink either since sAH and rarely go out more from fatigue but there are different ways to connect that you need to now consider and find sonething you enjoy. Maybe something in your community, maybe helping with a youth programme teaching done of those 'fixing' skills in short bursts...socialising differently. Find your new way. Helping others is a good tonic too.
  8. Sarah, welcome to BTg and what an inspiring and uplifting post of looking forward and dealing with the hurdles that have been put in your path. I did wonder whether you were a David Guetta fan but then realised it was a homage to our platinum coils, I have rubies as well in my shunt so figure We SAHers get a special kind of brain operation where you leave more valuable than when you entered theatre. Im glad youre doing well, and loving the idea of silly dances after working on the pc that might be something for me to try, tell me do you hope to drive again in future or will you stick with public transport? Keep on keeping on and please share some of whats helped you on others threads, that experience is oh so helpful
  9. I used to get a lot of unexplainable cramps and sensations and I resorted to just trying to adjust my diet to make sure I was bringing in a lot of extra minerals and vitamin rich food. I found not letting myself get hungry really helped and I actually had some food supplements for a while. my doctor did blood tests as well which found I was a bit low in certain minerals so I took supplements but you should always consult a doctor before doing that. i speculate that the brain uses so many of the nutrients it gets faster when it heals plus all it's levels are out of whack so for me that's what made sense and over time the termors disappeared.
  10. I agree with Macca and Win and Clare. I think the hospital will always err on the worst case scenario but the answe is no one knows and don't forget in a way this is their normal everyday event so to a certain extent they don't allow for the individual who is behind all the interventions and what that person is deciding and what they bring to the fight. You know your mum and will know what her character and stubbornness may be like. Yes all the interventions are amazing and ultimately save life's but that done it is then in your mums choice to battle so keep encouraging her. The brain is the control centre and it's going to conserve and channel lots of energy into healing and running essential bodily activity so other stuff Is lower down the to do list and the hydrocephalus really wipes out a lot of function for a fair while. Have hope.
  11. Glad it went ok and hope the journey home went well.
  12. Hi Tori, firstly I'm so sorry for the heartache you and your family are experiencing right now but you are doing all you can watching over your mum and helping her to heal and she will feel and know that love. Talk to her, put pictures up round her cubicle sing and just give it a bit of time to see how the effects reveal. Noone can predict the outcome as we are each different , i for instance had a grade 4 and coiling and EVD placed its a considerable ICU stint and like Win I also had a shunt placed at a later date but was fortunate not to have the infections others and your mum have had which does complicate and delay recovery. I now don't think in terms of recovery but more my evolution of adaptation that continues today five years on from my event The effects of all the drugs, the multiple operations and procedures she has had and especially the LPs she is now having will be leaving your mum completely wiped out and can be suppressing any ability to respond. I suggest keeping a diary and getting everyone who is visiting to note anything in it and also to just keep encouraging. In my quietest and stillest of times I still could always feel the love. Talk to your mum, let her know how things are getting on, play some music and give it time. Always hope to be had. Take care of you, she will want that as well.
  13. You are very welcome and hopefully some of the experiences shared here will help you as you assist your husband with his recovery
  14. Hi Andrea , sorry I missed this so I hope your cold has improved nd you are recovering from that now. i had to have a second operation post my SAh , not to have a plate like you but to have a shunt put in so I know some of what you are feeling. They will really look after you in the hospital and the pre and post operative is very attentive at least it was for me but if you are worried when you are there then tell them, ask for someone to hold you hand as they do the meds, don't be shy. its hard facing any operation and especially when you still feel unwell as we do post SAH but remember this is being done in a non emergency situation which is much better and the outcome is that it should improve life for you. So it's ok to be scared but focus on what the benefit of having the operation is. Also I had a friend who had a craniotomy and she had to wait before she had the plate replaced as well and she was said she saw it as a gateway to being able to wash her hair properly so hopefully that's the same for you too once everything has healed well. Good luck.
  15. Hi Topsy, I also have a vp shunt and the balance was off for quite a while before I got it right, and even now if I do too much I will be face first and hopefully not onto a hard landing. Some tips with that first of all, take a stick everywhere, I still have one with me in my car and which I take it on longer journeys and always when walking the dog although I can walk unaided now which I am very grateful for my stick is important to my balance. Dont jump up or try to do any movement too quickly. Sit a while and then do things, think of a breath as a pause, so if you have to turn, take a breath and then turn, it really does help slow you down but also for the message to reach the brain, get some help with anxiety, be it taking medication, meditation, relaxation, walking, sucking mints, whatever works for you, don't suffer it. . I have come to the conclusion through this forum that head injury often triggers anxiety but also that the surgery for the VP shunt can really heighten anxiety as I haven't met one person who has a shunt who didn't have these episodes afterwards. I had counselling and it definately helped me and I meditate as well and learnt coping techniques. remember the fear is often worse than the doing. Phone your dentist and ask him or her to call you, explain what has happened since you last saw them and ask for their help and support so you can get into surgery to see them to assess you.. They will be used to anxious patients anyway and I know the first time I tilted my head back in the dentist chair I was so worried but my dentist was fab and I have had filling injections , dental xrays and cleans since then and I'm sure your surgery will support you and don't go alone. After your visit rest up. Don't me tempted to do to much too soon as it takes longer to recover and as Super Mario said pain is no good to anyone so go get it sorted. You need the pain gone.