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Daffodil last won the day on March 1 2019

Daffodil had the most liked content!

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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/
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    Bucks, UK
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    Swimming and baking
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    HR Consultant
  • SAH/Stroke Date

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  1. Fatigue Is so different to anything , it’s hard to explain unless you know it as we all do. It can creep up on you, then bang you find yourself losing words,balance, cognitive function, appetite , the list is long and inglorious. It’s hard for families to witness and they can often just want it to go away after time passes. ‘You’re better now right?’ ‘ you’re back at work why do you need to rest so much’ or the one that used to kill me each time , ‘ why are you always too tired to play?’ I can only say educate the entire family. Let them know this rest, this complete lock away from stimulation is like you placing yourself on a phone charger. Thing is you can’t ever reach 100% but when you are in that red zone of charge then there is a real risk of switching off...explain it like that, they’ve all experienced the phone suddenly shutting down , it does it to protect the battery charge, that’s what we need to do with our fatigue. Keep our batteries charged, don’t run low and make sure we power down regularly I'm 8 yrs on now, fatigue massively improved, or maybe better managed and known but my now older daughters are the first to spot if I’m too tired, I’ll be irritable and have no focus or recall, and will just tell me straight ‘ mum go lie down’ . Good luck . Don’t beat yourself up, you are doing the best you can. And you will play, do more , it’s just a time game.
  2. Majella, agree with all that has been said. Sah is a fine tutor of patience as go too fast or push too hard and your brain will let you know the signals and it’s time to reign in, steady yourself and rest. It means you have over stimulated the healing nerv3 Centre that controls everything, that takes a bit of getting used to. try to see it as an opportunity to be curious about what is this new possible, what can you do today you couldn’t yesterday. Celebrate every small success. Know some things out of reach today may return but only at the pace that’s possible, not the pace you might wish. Practice gratiitude , it helps with patience as you can mark progress and there’s will be. Take care. Steady now Daff
  3. Rajdeep, welcome and I am sorry for your trauma but also happy you got treatment whilst visiting your parents but can understand it has been difficult , but your family must have been so relieved that you were at least able to get the help you so desperately needed and I hope having your family around you is comfort even though travel home to Australia is not yet possible for you. take time to be gentle with yourself, no stress if you can, let others help you , eat well and allow time to rest your brain , if you can meditate or have quiet space that will help you rest your hurt brain. i had a SAH at 39 , I was fit and well before hand and my daughters were 6 and 9 at the time. They were scared but we were honest and they learnt to help their mum , to be more considerate and I think they have really gained something positive from their mum being so unwell. That was 8 years ago. I have a VP Shunt placed and was told it would never be removed unless there was risk from leaving it, but for me my damage from the bleed means my ventricles were too damaged from the blood and the condition that caused it, hydrocephalus, is now permanent. You may wish to ask your current doctor team in the hospital more about your Shunt placement I think but maybe you can also discuss with medics in Australia when you are able to return. Do ask if you have questions take care daff
  4. Lynne , agree I would speak to GP and ask them to refer as well but definitely speak to the consultant in June i think we all are wary to be in hospital inthese times but equally I think if the procedure was deemed to require surgery and now things are not improving but actually new symptoms it’s time to have the conversation. Stent diversion is less invasive people have reported than being clipped, so through the groin as per coiling I think but I’ve not had that experience of a stent. Others may be able to reply on that. Good Luck, keep us posted x
  5. Hi Sean and Julie. great reply from SM which I hope will Help you. Hydrocephalus itself is pretty damaging to the brain and like SM I think the impacted balance and dizziness was mostly the lasting effect of that although equally caused by bleed too but 8 yrs on I’m so much better now and can do most things. Sean not sure what Shunt you have placed , I have a Meithke ProGav, but most placed these days have gravitational valves, adjustable external magnetic setting which also can be checked using a special tool which the specialist nurse can look at. (Mine is being monitored because we aren’t sure if my valve is playing up but no Shunt failure symptoms thankfully . To check setting Its very simple , a sit downpainless procedure. ) Pre any MRI they will confirm what Shunt you and as a result there should be no issue to the setting but the scan team should confirm that before you go in. Do speak to the Shunt specialist too if you have concerns To check on actual Shunt function they’ll often do a ‘Shunt series’ which is a X-ray of the tubing in the abdomen and neck to check any blockage etc and then will often elect for a CT scan as they just look at ventricle size changes. When they do a MRI it is going to get that closer look at the blood vessels plus check ventricle size so that’s more about the SAH bleed , how the coiling is holding and other aneurisms, overall brain health. That’s been my experiences and how it was explained to me. With my decisions for changes in setting we based it very much on what I thought would improve my quality of symptoms and frankly my getting worse not better. Also because I had had three months of living without a Shunt I knew exactly what high pressure hydrocephalus felt like for me and equally low pressure symptoms as well as I went on to have many lumber punctures which drained off CSF before Shunt placement but which sent me low pressure. So I could tell that my setting of ‘5’ kept me way to low pressure for me. I would fall over , I felt nauseous all the time, I had pain in my eyes, neck and had fingertip pressure pain all over my head but always felt better lying down. So we gradually increased the setting over a period of months. It wasn’t an easy period , I went back in overnight a few times because they were concerned I could have CSF leak etc but over time we found ‘my’ setting and I had to then adjust to living with a Shunt whilst recovering from bleed. With a Shunt Our brain juice control system is not the smooth automatic system it was anymore but a little clunky and awkward , I hear it whirring n . draining, as it does it’s overflow work but I know when I have had a big valve release and I have an ultra sensitive reaction to barometric pressure , (that’s a symptom and something we all have shared and find we have in common on here.) SAH recovery with hydrocephalus and dealing with effects of a bleed is essentially two conditions , both causing brain injuries colliding and it can be a little bewildering at times but do keep a diary and track how it sits with you. You will know your body and what feels right. i know the MRI scans are tricky but yes agree maybe ask if they can work with you to help you feel more comfortable with the procedure . take care and glad it’s helping to talk.
  6. Iola, It’s nice to hear from you, I’m sorry you are finding things troubling at the moment but you are doing the right thing which is to come here and talk , we will listen . stress is rubbish and doesn’t sit well with our damaged brains. yes we heal, we adapt to change and we go on to rebuild lives but our resilience to weather emotional trauma I think is never the same, we react differently, it effects us in much more vivid ways and so we have to try and notice both our triggers and our traffic lights. what do I mean? Well for me being around toxic people is a real no no. A trigger which will raise my BP and my cortisol levels , I jettison them fast these days or just exit the situation ( safer than saying what I feel) which makes me less popular that I may have been previously but I don’t want their complaining, ( I can hear Win echoing that to me from years ago to stay away from those that moan, she was right! ) . also when I do too much or am emotionally strung out my brain shows me in odd ways, stiffness in jaw, pain in phrenic nerve , and I know I need to heed that and slow or stop and take some quality quiet time. Healing space to be kind to me, my body and my brain. I dont want to run a red light, Ive run so many , it hurts too much, so I pay heed now, it’s all I can share. I wish you well.
  7. Hi Sean, fellow National patient here and I also have a VP Shunt fitted. Here to tell the tale thanks to the amazing staff there and the work they did and have done since. I remain a outpatient at the National and attend Shunt clinic annually now but I had MRIs annually until last year as also have smaller anneurism and a neck on my coiling they kept watch on. They are a great team, and I recommend the Neuropyscology follow up if they offer it as really helped me in the first couple of years post mine. MRI scanners at NHNN are very loud ... I take my own ear plugs to wear under their headsets and I also make up silly songs to go with the strange banging and clanging ....oh and suck a polo before I go in , that calms Me and was a great tip I got from a lovely woman I met here who reassured me - Win. I think I must have had over 10 scans in my first year which is crazy really as initially i didn’t have a Shunt fitted just an EVD but after my first discharge after 7 weeks in I ended up back at queens sq and requiring more surgery for Shunt placement and then it took a fair while to get setting right for me. I’ve tracked on here my recovery with hydrocephalus so I’ll try and find that and link for you. Feel free to ask me any questions, Go steady and slowly. No race or rush needed. Try to sleep a little upright and make sure you eat frequently Ps have you seen the cat statue in queens sq gardens, I visit every time without fail. First thing I remember from when I finally wheeled outside for fresh air ... Edited to add link :
  8. Oh Sarah, I’m so sorry about your lovely mum. She leaves a huge hole at BTG and I’ll so miss her cheer and optimism that she often shared with us here. She was one of the shunt gals gals and I Loved my ‘Mrs O’ chats in the green room, she even changed her picture to Mrs O. She was a special brave lady and so proud of you, her Al and of course Tilly. take care in the coming days. Let the tears flow. Let us know if practically there is anything we can try and Help with as her community of online friends. I guess The singing just got a whole lot louder where she is now. They are blessed. Will miss you Win. 💕 Im just editing to add , this from one of Win’s posts in 2016 “Be Well, smile and sing (My answer to everything) !!”
  9. 29-4-2020 Emilia Clark shared on FB tonight her reading the poem by Hafiz on loneliness, "I wish I could show you when you are lonely or in darkness the astonishing light of your own being." Emilia dedicates this poem to all brain injury survivors, who have survived such trauma only to emerge to this new, changed world we currently have. The charity ‘same you’ makes the offer that if you are a recent brain injury or stroke survivor in need of connection and holistic rehabilitatio they have funded a 6 week free service to help you recover safely at home. Check out the link here: https://spauldingrehab.org/paving-the-path-emergency?fbclid=IwAR0L9SROLelGN-C8_-GOPywdDd5c8OIFm9mP0SUF-2arZVyIiDKBrTnZn0o and register with Spaulding Rehabilitation Hospital Boston. It is a six-week virtual program over Zoom for patients with low income who have recently experienced a brain and stroke injury. Please note they state Maximum enrollment is 30 openings per session due to capacity. I personally think back to how unwell unwell I was post SAH and discharge and having had access to comething like this could have been helpful even without C19 The poem, along with many others, is in @thepoetrypharmacy 's book available via the link here https://www.thepoetrypharmacy.com/books/
  10. Welcome to the group. And also welcome to the slow movement.its a pretty good thing, you can see and learn more as you take your time. A quality thing! so there is onesilver lining straight off which is brain injury and SAH gives you a different perspective and level of resilience when it comes to living through a pandemic. And you have a benefit of a quieter world right now and that’s a very good thing for the brain when it’s hurting. Glad to hear youve finished nimodpene, that’s a milestone and now you need to give yourself some space and kindness to heal. No need to rush to be back to what it was before, current circumstance is proving that to a lot of folk right now, it’s ok to just be And do what feels ok today for your brain. it’s hurting And healing and in the next weeks I’m not going to lie it will knock you on your bum I expect with how it can make you feel. Come here if it does for reassurement but each day have quiet time, eat well and often, move then rest, drink lots of water and celebrate each highlight in a day, taking each one day at a time. ICU I felt when i was there was full of love , that’s comforting to me right now knowing that people in there have to weather that experience all alone, so well done you for going through that without visitors . You were amongst the sickest and you came home , that is a very special thing. Cherish that and go on from here. Slowly . Steadily. Find a new balance, it will Be there. Daff
  11. Gem, I’m so sorry and hopefully you will be able to start that grieving process but this strange time is changing normals for everyone. Do find quiet time to sit and sit and reflect on happier times with Dad. Let the tears flow but look up and what Spring is offering. Love lives on I think. A poem i find comforting in times of loss When I have moved beyond you in the adventure of life, Gather in some pleasant place and there remember me With spoken words, old and new. Let a tear if you will, but let a smile come quickly For I have loved the laughter of life. Do not linger too long with your solemnities. Go eat and talk, and when you can; Follow a woodland trail, climb a high mountain, Walk along the wild seashore, Chew the thoughts of some book Which challenges your soul. Use your hands some bright day To make a thing of beauty Or to lift someone’s heavy load. Though you mention not my name, Though no thought of me crosses your mind, I shall be with you, For these have been the realities of my life for me. And when you face some crisis with anguish. When you walk alone with courage, When you choose your path of right, I shall be very close to you. I have followed the valleys, I have climbed the heights of life. By Arnold Crompton
  12. Kathy sorry I missed your post and wanted to say hi and congratulate you on all you have navigated . Keep on keeping on ! Daff x
  13. Matt, you use the word ‘only’ a lot to describe your experience of surviving this life threatening event but have no doubt about it that what you have lived through is no small thing, and no yours is certainly not trivial, don’t compare yourself to others, there’s no prize for competitive SAHing! We all share in common the fact our brains bled, yes always will be varying degrees of scale and complexity of course but let’s face it each of our brains is utterly unique , so we each carry a unique experience of how our bleeds have impacted us and sharing that insight can be so helpful and reassuring as we learn and navigate and adjust. So how you adapt to your bleed and it’s effect upon you, your life and what you can offer others as you learn is what will aways be beneficial. Facts I’ve learnt along the way. Only 1 in 3 survive a SAH. Of that 2/3 may be left with a permanent disability or long term effects effect but we each acquire a brain injury the day our brains bled, so I’m so glad you decided to post and there is no ‘only’ about your event. Jean puts it well when she says we ‘celebrate’ our survival, equally we can all just offer support when the days are a real struggle as we try and find that new normal . We know that feeling. Amazing you seem to have a strong hereditary link in your family. I am glad you are recovering ok but it’s a strange landscape fter the bleed. The surface of the brain doesn’t like much getting blood over it so it can really mess about with balance, thought, stamina and cognitive thinking. Placing Lots of breaks in your day will Help now you’re back at work. Do something, then pause and take a breath and be still and quiet. Then resume. Build up in slow incremental chunks and if you add on extra an day hit a wall then like training drop back and then go up in slower increments. (I’ve never run but have a partner who does!! ) glad to have you with us. Daff
  14. Chocolate pie. The best way to celebrate I think just the joy of here and now! Good choice XMom. Some good angels with you that day, living and otherwise if you believe that kind of thing and I hope the headaches improve. I find giving myself a gentle shoulder and neck massage each night before sleeping has helped mine. I use a scented oil I know relaxes me, still won’t ever let anyone else do it, I know the pressure I need for that day. keep on looking forward ...i may grill you for puppy training tips!,
  15. Thanks XMum. You are so right on dogs. When I got the last youngster I was three years in post bleed, still couldn’t walk without a stick and used to fall a lot and the amount of times I used to end of lying in the mud with a couple of dogs peering at me as if to say ,’that’s a bit odd’ but I used to end of laughing and my now very elderly boy used to let me heave myself up on him. Don’t think I’d get far today if it happened as he’d fall over and the corgis is too low to the ground, the whippet not string enough! My odd pack teach me to stay with what I have and am today! One thing I want to add here is the value I find in sharing experience. I came here and felt less scared because I could ask other people like Louise , Super Mario and Win about Shunts and mostly because you know what , hey I’ll say it aloud, it made me realise that death wasn’t lurking at every turn. Being part of BTG allowed me to dare to live new if that makes sense. It’s why I enjoy still being a little part of this, my days, like all yours , are not always easy but if any of us can make someone else’s dark and confused and scary early days a little bit easier then that’s a special thing and a gift the othe folk who don’t survive their SAH would wish us to offer. You all are blooming warriors. We all are.
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