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Everything posted by Daffodil

  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.
  16. Bev, so you will have been high pressure before surgery and living with that and now the Shunt is going to regulate it to keep it lower, your brain is going to take time to adjust to this new state. I imagine you are feeling very sick, noise and light sensitive. Make sure they keep your anti sickness medicine smoothed out m I had sub cutaneous slow release pain release which meant I didn’t have spikes so much of pain, Try lots of small meals, ask people to bring you snacks, you appetite will feel supressed but try hard to eat small and often, also if you feel really bad have a can of full fat coke. I don’t think this is medical advice but it’s what my neurosurgeon suggested post my Shunt surgery. try and Lie as flat in bed as you can bear and then when you get up to sit go really slow, really really slow, imagine your head lifting but tiny bit by bit. Then swing your legs around and just sit on side of bed. Take your breathes and stay put for a few minutes, five if you can. Then try standing but don’t go anywhere unaided and always sit back down before lying down if you can. Then lie back but slightly elevated this time. Notice the difference. Suggest you ask for commode or wheelchair to bathroom in the early day’s, Practice that kind of movement before you start walking movement on your own and no sudden ones for now.keep your sunglasses on in ward! youve just had major invasive surgery, it’s going to have a real shock to the system I’m sorry to say but you will learn what is new state of balance. Not sure if yours has a gravitational valve , that can make a difference too. Ask if if there is an hydrocephalus nursing team, can anyone come and talk to you, that helps too. Shared experience of post surgery. Practices breathing and relaxation. And sleep as much as you can, it helps the brain settle from it’s heightened state of attack . sending gentle healing thoughts. You’re in the Shunt club now. Xx
  17. When I was back in hospital in 2012 I was pretty destroyed if I am honest. I had my grade 4 event, grand mal seizures, acquired hydrocephalus , EVD surgery, coiling surgery and , endured the weeks of intensive care, of hospital stay. It was a long 7 weeks before I was allowed home and then when I did get go to home I could do nothing. I had sitters, I couldn't Cook, wash, sleep normally, let alone do any of the grown up things like look after my young girls or cook, work, or drive. I was 39 years old. But I tried to start putting the pieces back together but three months afterwards ended up blue lighted back up the M1 to my treating hospital with dangerously high level pressure of hydrocephalus. Numerous lumber punctures followed, some falling out of my hospital bed, the odd bed pan hilarity all led to my then having further surgery on my traumatised brain and a VP Shunt fitted. It was awful. I remember this time vividly. I have never felt such pain tbh, I was so ill, fair few near death moments, but again I was one of the lucky ones, I came home. That time, that new birthday started 8 years ago today. International women’s day. A time for looking forward and so have always tried to do that since. I started blogging after having my Shunt placed and still in hospital and found BTG not long after I got discharged before that I couldn't read a screen or at all if I’m honest, I had hidden the effects of the hydro so scared I was of going back in. So I blogged today about a few learnings. https://popgoestifty.blogspot.com/2020/03/annie-versary-post-transformation-and.html I have regained so much my fellow BTGers from that day but have also adopted a new style of being. No rush, try not to ever worry, about what I can’t change, lean and try and accept the pains in life and hope they will pass and mostly just enjoy this day. Even if all you can do today is wash your hair then that is an achievement as I know how it was not to be able to. Celebrate and see the good and the possibility and go steady. And reach for Help. BTG has been here for me along the way, someplace I could ask those question that’s filled me with fear, where I could tell someone else, hey that ‘s ok or me too , and where I allowed myself to adjust to a life’s that changed forever in the instant and go on from that. Privileged to be part of the gang. As Win would say I think, I gave myself permission to sing again...or maybe she did!! Go steady everyone Daff x . Postscript, my post SAH life continues to unfold, twist and turn, in the years since my girls have passed exams, with one about to start to drive, I have lost my darling mum, two aunties and countless friends through illness, I am back at work doing a job Im good at but done to my limits and I have got three dogs now, and the latest is a corgi puppy ( cuteness overload) into the mix so I walk everyday with them and am better for it. I struggle with memory but have prompts everywhere and by phone an day have retrained my brain to remember stuff differently, I am kind to myself, if I mess up that’s ok and I struggle daily with fatigue. But on the whole still Improving and a complete transformation from 8 years ago. Keep on keeping on
  18. Clare, Greg, Gemma. If it’s any help I think it does continue to get better, or maybe we just become better at adapting . Either is good though and both is progress. I’ll be 8 yrs next month and my stamina is still increasing but I’ve had to find new ways of doing things for instance like the ways I now keep fit and healthy sit better with new me than it would my old style. So for instance I loved swimming Ipre SAH but just really didn’t work for me anymore , exhausts me too fast so Instead I walk daily and do gentle strength exercises instead which I think has really helped my balance with the hydrocephalus but also dramatically increased confidence in what I Am still capable of. So much so I stretched my comfort zone and learnt a new sport.not too high cardio, adding water based which I love but not high impact and now I can paddle board. This was unthinkable in the years immediately post and yes completely exhausts me , and I wobble and fall too but the trade off of endorphins and pride I get when I do it means it is worth it, new rules are in play, my evolution. Same for my work. I really Built it up slow, had to say goodby to a fair few ambitions but found a new niche and again that’s helped me confidence wise. Hardest balance for me fatigue wise has always been the giving of my energy to my family. Never wanted to limit that but brain had different plan. Girls were 8+6 when I had my event and then mummy they knew changed in a blink. It’s been a slow crawl of knowing what’s possible since then, failing and falling a lot, but I for the most can do so much of it again but honestly think maybe a bit better with boundaries and setting expectations of what I can do and our relationship I think is all the stronger for it. Aim at steady is my best advice, yes may be boring but my view is that from a steady state then you can dare to lean a bit more, reach a bit more and generally wobble a bit. When everything’s wobbly then you know it’s time to reign in and regain the steady and then off you can go again. Daring to dream and always keep hope of what’s possible today. And on the days when nothings really on, the head stops play, then being kind to self and gentle to then totally rest and apply self care and attention (and yes I do still have those days but they are fewer and less frequent. ) I got scared a lot i think , I didn’t want to go back too much as the steps backwards early on frankly floored and terrified me...but now I just try and stick with what I know is possible today. I measure from my SAH yes but try not to think of that state too much and instead just be curious of now. You have all done amazingly, overcome so much pain, so much challenge and change with dignity (and probably some tears and anger too) , keep building just as you are. Onwards and perpetual motion .you've got this x i wish you all well.
  19. Agree with this, you will find new limits sit with you but then stretch them , then stretch them again but it’s a slow thing. But yes be curious about what is possible now, and notice what can you do today that you couldn’t yesterday. It may be the smallest success but count every single one and then push for what else is within reach but importantly without breaking yourself or your spirit. I used to keep a diary about what I had managed to do each day and set little targets too, I would then write what I had done and say how I felt. That list used to include get up and get washed and dressed myself, I remember the first time i managed to ‘self shower’ again...that was a huge moment for me and I appreciate every shower I taken since. I can charts lots of regains in my nearly 8 yrs on but also lots of acceptance of change too...well not quite acceptance if I’m truthful, I still miss my energy and the ability to Be in very loud places but I live in hope. But progress was not swift and whilst Being able to regain things is amazing and takes a lot of time but some things may forever remain changed, i then like to see what I can then do within those new limits. Always be curious, it can get you to places you never thought. Go steady
  20. Dave, yes phone your consultant and ask them to help or another option if it’s a possibility for you which is to pay for a private consultation with a neurologist and take all your scans, history but either way they may ask for an angiogram if they have concerns. i have a Shunt since my SAH and last year had sudden ocular migraine which can be a side effect or possible Shunt malfunction but an overzealous locum GP reported it to DVLA after my follow up visit to the local surgery after a hospital visit who said I must be cleared to drive as he thought I may have had another SAH...I hadn’t, had clear scans at hospital ...anyway once your are in the system I knew you have to get cleared by a specialist and GP’s etc tend to just not have that depth of experience or confident to make decision . So I paid £100 and went and had a complete neurological check with a neurologist whom was more than happy to then write to my usual GP and provide a letter for me to send to DVLA confirming I was clear to drive. But fear not. You do not forget how to do it ...I had a much longer time away first time around as was without license for over 14 months following my SAH and Shunt surgery. That was a real palava getting it back then.
  21. Hey Del, sounds like your mum may have the complication of hydrocephalus which I did also, and I had an EVD placed whilst in HDU which stayed in for a fair while and yes I was pretty unwell with different complications. It’s a very unsteady precarious state and family told me it was hard to be witness to this. SAH itself is life threatening and the first few weeks afterwards by no means is anyone out of the danger zone and complications can and do happen, we are all testament to that but also that the textbook and reality can be very different sometimes. Miracles do happen and odds get beaten. Your mum will be feeling battered and bruised and confused from the bleed , the swelling of her brain will mask her, the operations and the medication and now an infection makes things ten times worse for that so it’s a step back here which is a common thing in the early days of a significant SAH . It is good they have picked this infection up and isolated her but yes of course it’s very serious as she has been through so much with the trauma of the SAH. Keep talking to her, even when I was out of it I could feel and know love, it really crossed the senses, and hope and indeed prayer always has a place. Like Macca says we send healing and positive wishes to your mum and for also strength and courage to you as well to just keep hope where it is still offered. Daff
  22. Hey Greg. We all hear and understand you. If I’m honest I really think the five year mark was my worst but also probably the time I accepted and let go a bit more and then in turn this has given me strength to grow in different ways. . At fives years I felt I’d plateaued and was far from happy with the view if I’m honest. Yr 1 was a blur of pain and struggle and bewilderment, yr 2,was to try testing out what was possible..not a lot,yr 3-4 saw la number of regains and small victories , failures too and then five , suddenly progress seemed slower and reality of my new state more ...familiar? And that was a bitter realisation, I wanted so much more.. always been darn impatient.. But then yr six and seven has Seem yet more progress, more true confidence in new ability return. I have stretched myself far more than I ever thought I could but I do iit all very differently to my old version of push push fast fast and now I just March to the beat of my own drum and steer clear of everyone’s circus. As my mum used to say ‘not my monkeys’ Continue to be kind and generous to yourself as you continue to heal, and remember that you are, healing still, keep talking , keep pacing( how I hate that word) . As encouragement Last year I went and did a big concert...Fleetwood mac,, i had promised myself I would do it whatever...and it was crazy but uplifting and amazingly. I danced a little( read swayed) I sang every word( read warbled) and I felt so joyful and alive. I was a wreck getting home, felt Like id been on a vodka bender and the fatigue hangover the next few days felt like that too but it was worth it. Make your fatigue trades well. This is the time I think when possibly peace with our enforced change starts to really settle , it did for me , and then from that steady state you start the real build of what you can, want and are prepared to do. And keep Looking for the unusual solutions, be curious and creative , find different purpose and you’ll increase stamina and most of all gain confidence in the cans and avoid the can nots . Go steady Greg. Keep ploughing at your pace.
  23. Ami, I will tread carefully here because I don’t want to get in the realm of offering medical advice but I had quite a few leaks of CSF from my burrhole when I had a EVD placed post bleed, I had the tube in for over 3weeks so it happened a fair few times..... I pulled a few tubes out apparently....and also afterwards when it was healing , which possible caused the metallic taste and can only say that if this was a CSF leak you would probably know about it instantly. A sudden drop in CSF pressure( loss of fluid) is almost always accompanied by awful sickness, vision issues, balance, aversion to light, and having to be motionless and lying down or at least that is my experience anyway. I experienced this after lumber punctures which I had numerous times before Shunt placing to Try and kick start my ventricles ...it didn’t work. Anyway the more fluid you lose the worse the effects are. If you are worried do push to get checked out, any loss of CSF would require absolute rest but importantly not normal to leak for no reason. I hope that your symptoms are maybe just the impact of the bleed itself and that you doing a bit more.
  24. Hey Ami, did you get any taste /smell with it? did they go ahead and test to check it was CSF? If you presented with hydrocephalus as a complication at the time of the bleed then even if the high pressure corrected the ventricles can be left damaged. That was my experience and I had to go in four months after my bleed and have a VP Shunt permanently placed. I was very poorly but hard to say if that was the bleed itself as I had been hospitalised a long while, had a high grade SAH and EVD but after coming home it was like my senses shutting off one by one. It was thought I may have had leaks during this time because of building high pressure which I tasted in my mouth. My GP referred me back in and I was blue lighted back to my treating hospital as it was considered an emergency situation. High pressure build up does need to be investigated. Now that I live with hydrocephalus If they suspect there is a chance of any pressure changes it has to be taken seriously and you should push to get scanned in my opinion. if there is any concern that my Shunt isn’t working then I am shuffled off for a scan to check ventricle size as this is the only definitive answer on this . And it is always a MRI not CT scan. I would get checked out to hopefully rule out hydrocephalus. The impact of any bleed across the brain surface itself is fatigue, reduced cognitive and physical stamina , short term memory deficits plus many others depending on the severity of the bleed and the location. Good luck
  25. I would definately disclose with a statement in advance. I changed role after mine when 8 g9t back to work after a long 18 months absence but I told anyone about what I needed to be at my most effective. Most employers ask if you wish to disclose a disability and if you need any adjustment at interview . Now you could argue it will lose you interviews ( this is against the law but tricky to prove) But I the way I see it is that disclosing and then getting interview should help if you then went on to get the job as would show they are an open minded employer but also likely to be able to help with any continued adjustment, if you choose not to disclose that’s ok too but as we all know hesitation and losing words can be not ideal in interview. Practice the interview, but also practice listening to something , could be an audio book, and then after a couple of minutes trying to summarise what you heard out loud. The act of concentrating to what’s being said and making connections with subject is testing your memory filing cabinet...short term memory is most affected by SAH and when you struggle with it words can fly away or get mismatched. Slow it down, pause, maybe repeat questions if that helps.
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