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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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  • Biography
    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. 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.
  2. 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
  3. 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.
  4. 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
  5. 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.
  6. 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.
  7. 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
  8. 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.
  9. Jenni, Macca has given great advice and I agree with every single thing he says. You must please keep in mind that just because you can’t see you have injured yourself you have and you are very early in your healing and so you need to allow the brain time to heal and adjust to what’s is different and find new pathways. I couldn’t watch a TV for ages and then nothing cognitively demanding ...took too much brain energy so used audible and tried drawing and other things. I painted furniture, took me ten times as long as it would have before but hey I still did it. I taught myself how to upholster which was hilarious...I genuinely couldn’t even thread a needle post bleed. That took a year before I could do it...but my solution...my daughters are very good at threading needles! Accept help, look for solutions and do differently...it’s ok. i am a big one for using an analogy . Say you were walking down the stairs, took a massive tumble and sustained a very nasty break, you would have no choice but to accept the limitsthat this would place and also the cast and crutches would all signalto all that you are still battered and bruised. Well that’s your brain right now honey. It’s on crutches , you can’t pick up where you were and as it’s in the driving seat of your body so it can enforce slow. Please listen to it. I was and am a mum to young girls too, I know that loss of identity and purpose but equally they just want YOU. Genuinely If you spoke to my daughters now 7 years down the line ( they are 14 and 16 now) I know they’d say I am actually a more enjoyable mum. We do things differently, slower, but they have my attention, my listening and most of all they still have me. They have friends without parents and get loss can happen. Let yourself off the hook. You cannot change or reverse this event, you have to go on and rebuild and regain. And you will honey.
  10. Brilliant, so pleased for you and thanks for letting us know. Go steady now. And do rest after journeys for a while yet
  11. Roberta I self studied as an aromatherapist just out of personal ambition when I was in my twenties alongside a very different career and I used that from when I discharged after my SAH and Hydrocephalus. I had a grade 4 and also a Shunt placed. I have to be very careful with oils, i know the ones I can use and to avoid. if I have a massage even now after nearly 8 yrs I can’t have a full body without it effecting me greatly, but light touch and arms and feet are a great relaxation I found. I wasnt offered any alternative therapies, I used to use a lot prior but not all sit well with brain injury as over stimulate sometimes..now just meditation, occasional massage and regular use of oils and mindfulness. I think .you will be an insightful practioner I am sure due to your BI so go easy and be kind, it’s hard work studying for everyone. You’ll get there, no prize for rushing it,
  12. Hi Bri, Try and get hold of your neurosurgeons PA and ask if she / he can email a copy of report to you to then send to DVLA. Tbh if they have cleared you neurologically that’s all they are looking for. I had an EVD and then later a Shunt...15 months no drivingafter being revoked !! Some of that down to DVLA and consultant delays but it took a letter from consultants finally get the yes from DVLA. I never had to take an eye test. but more recently had an over eager locum decide that a short bout of blurring which was full investigated by emergency ophthalmic consultant m full eye and vision test and no issues but he decided in his wisdom ( or lack of it) that it meant I couldn’t drive ( basically he was annoyed because I didn't agree with his assessment that I should have an LP, i pointed out Had he ever had one and that I’d had at least 10 so I would have to decline as hospital was happy ) but he informed DVLA anyway! I was floored and very distressed, I actually paid to see a neurologist privately,cost me £100 , he tested me, reviewed my latest notes and sent report to DVLA confirming my fitness to drive and I was immediately told I could continue without it being revoked and they would confirm in writing. Good luck. But yes patience is key, that And dogged pursuit of anyone who can influence !
  13. Hi Jenni Please believe me when I say that your daughter will not care about missing outings to shops and for now you need to give yourself permission to heal, slow everything down and just be here enjoying the now as best you can and to take each day as you can. Explore different ways to share Christmas with your daughter,go on short frosty walks to get the fresh air and winter sunshine when it fleetingly appears, make mince pies together, make old fashioned paper chains, get partner to drive around looking at xmas decorations and counting trees... these are all things that will still take you effort, still use your energy but won’t have the same cognitive overload that Christmas shopping will take from you early in recovery. If you do venture to shops avoid weekends, wear sunglasses and ear plugs and limit your time there and rest after. Everywhere will Be busy and noisy an each is an assault to the brain whilst it heals. Do your shopping online!! Better yet give someone else the list this year! i understand entirely, you feel you should be able to do this after all it’s so easy right? but try please to see that right now everything that used to happen previously without much thought and effort has changed as the brain ability to proceed and filter stimulation is a bit bruised and altered from blood going where it should not have been. Invest your time and energy wisely now and it will pay healing dividends. Post mine, I had to contend with further surgery , couldn’t drive for 16 months,there was no way I could shop unaided for even longer, absent from work for longer still and That was with me Being rushed into hospital within one hour of mine...and surgery within 3 , that said I was working on what was usually a day off. For sure Had I not worked that day I would not be here. Look for the positive if you can, yes you were seen, you were helped and thankfully you are here and home. 2 out of 3 sadly do not make it home. Of the 1in 3 of us that survive a SAH 1/3 of us live with lasting deficits or disability from the bleed and that is going to take adjustment and it won’t happen fast . You can’t change the past, you can only count from now, onwards with curiosity about the possibility of a slightly altered course. Go steady , we are with you.
  14. Jenni, The fact you’re were walking and talking when you went into hospital meant they didn’t recognise the symptoms ,not great I know and others have experienced similar and then sadly they couldn’t get the positive confirmation of a bleed with a LP . As I understand it a CT scan isn’t as clear as a MRI to confirm blood in ventricles and arachnoid space and whilst all bleeds are incredibly serious , depending on the grade of the bleed it may mean less blood is present , as does where the bleed is located, there are so many variables so often the LP becomes the check point if unsure. My daughters were 6 and 9 when I had my SAH and they had to adapt to mummy being very poorly for a long time An day unable to care for them and then not driving for well over a year and generally not able to do everything as I did and everyone here told me not to worry, that they would weather it, just to Be honest with them and kind to myself as I healed . They were right. My girls are 16 and 14 now and they have grown into compassionate and independent young women, and a deal of that is down to their experience of supporting their mum, and that’s ok, and you know what ? They wish it hadn’t happened but they also see the value of having lived through it. Life goes on. We learn, love and go on. You will too. The BTG gang knew when they gave me that advice over 7 yrs ago that the best way to recover and adapt to change is to look after yourself and don’t beat yourself up and about the whys and regret. Your little girl has her mummy, that’s the key thing to celebrate , nothing is going to change the fact that our bleed happened, so slow it all down, don’t worry about what you could have done differently.
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