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Daffodil

Super Moderators
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Daffodil last won the day on March 1

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About Daffodil

  • Rank
    Super Moderator

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  • Website URL
    http://popgoestifty.blogspot.co.uk/

Profile Information

  • Gender
    Female
  • Location
    Bucks

Converted

  • 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
  • Interests
    Swimming and baking
  • Occupation
    HR Consultant
  • SAH/Stroke Date
    8/3/2012

Recent Profile Visitors

1,961 profile views
  1. Iola, I get you. I’m at 7 years now ,my anniversary just passed in March and like you also feel I’m at a crossroad. Things are more stable, we have had these years of getting used to the new version of ourselves, our new limits, our new capacity and then also testing those and pushing and striving ...and then....you find the energy you have to offer other people is not the same, the BS is not something you want to deal with and people can be so ignorant of what an everyday struggle things are, and somehow what you work towards getting back to doing just rings a little empty. I hope part time helps you find the answers. I’ll post if I find any !! Keep on keeping on, you are doing so well...you’ve got this!! Daff x
  2. Hi Jean, My core and balance post SAH was dreadful, i had lost all muscle tone, massive amount of strength and weight and I used to just topple over and also had lots of unexplained back pain. My answer was two and a half years afterwards I got a puppy...not maybe the best plan I know but I already had a older dog in the house but one which was quite happy if I didn’t walk him, much happier to snuggle up on sofa, whereas puppy meant I had to do daily long walks, if not twice. I ‘engaged’ my core when walking and always took my stick , even then I used to fall, so much that both my dogs know that if 8 drop the lead they have to stand still ... it became a training point but I built my stamina, my core, my distance and it’s been massive therapy. Also it helps to just give me quiet brain time. I cant do hard high energy exercise, swimming is tricky , yoga out now for any inverted moves so walking has been brilliant. So much so that last last year I tried paddle boarding and guess what? I can do it and that’s great for core, and if I get tired I can sit or kneel...so massive progress on that front. Just in the last month i have I have stopped taking my stick on my daily walks unless I feel wobbly and I probably now walk 3 miles each day ...But that’s 7 years since my event...some days I am still off , and can’t go as far but progress is still to be found. Hope you find what works works for you . Be curious and don’t look in the ordinary places for what helps. Walking can lead you to some amazing views. Take care daff x
  3. Just adding link to post which has some links in it to other threads from doctors who have had a SAH or NASAH. Click through to their profile to see some of their stories Search and look at some of @kpaggett historical posts as also worth looking at , she is a neurologist I think so had some pretty good insights to share but no longer comes to site.
  4. Hi Ami clare gives some good advice and any neuropsychologist will tell you that the effect of blood across the surface of the brain has a very different impact on short term memory than say a traditional stroke. You may find that you can’t retain the new memory in the same way to previously and so have to do things differently to be able to retain And keep facts and information but more importantly to retrieve the memory is a little broken/ corrupted. main thing I learnt ( and I had an amazing memory pre SAH) is write it down at the top of a pad if I am meeting someone for the first time ...and that doesn’t mean I don’t still get names wrong and I’m not a doctor but do work in a business where people recognition is important , I have been up front with people about my injury but you may decide that’s not appropriate for you so I would just say, I apologise if I get your name wrong , I tend to find it takes me a few goes for names to stick. Loads of people without brain injuries forget names, we are now just one of them...but seriously, wrote it down,give yourself a break. Also I’m going to say one thing that’s really important . Slow down at the start of the meeting and your consultation. Look a5 the person, pause. Say their name back and consciously write it down. That may help. Ask if they would be happy for you to take a picture and keep in file? You are different so try to adjust to that and well done for being back at work. . We have a few doctors come through and @frmertd is someone at present on site who shares your vocation. I’ve shared their latest post and you may want to look back through some of their posts and replies and who knows they may be along to answer as well. @Catwoman23also a medical professional who has had patients and friends with SAH and probably will be able to share some good advice and I’ll try and post some links from previous docs.
  5. Hi Bev, i do feel for you as I remember only too well the big highs and lows and what felt like lots of step backwards in the first year of healing. It was exhausting to cope and try to come to terms with the impact of my bleed, at the time I found everything terrifying and the worst part was it felt like I would never recognise this new version of me, I felt oh so unfamiliar and broken. Try to keep a diary of what you are doing, are you maybe asking too much of yourself, trying to pick up life exactly as you left it? Maybe dial things down but I do hope they help you source the reason for the pain and help you with that. I had to return to hospital when the symptoms of my Hydrocephalus returned post bleed. The extent of my bleed and volume of blood that passed into the ventricles meant mine never recovered their full function and despite discharging after my initial long stay for the SAH I eventually had to return and have an operation to place a Shunt. I also had to have numerous LPs prior to see if they could kick start the ventricles to work better...they couldn’t in my case. Before having shunt placed I had dreadful balance and increasingly bad sensitivity to noise and light and also neuralgia pain. Post Shunt it made recovery harder as the bleed impact was still early days but I can honestly say that it was a huge turning point for me in recovery. I wish you well and once you have a plan come back and talk it through and we will Help you through it. X
  6. Hi, you are hanging in there there and I think it’s ok to say that. if you are not feeling fine then say you are not feeling fine. If you are feeling tired, say that, I am all for saying what is true and whilst we try to protect people around us it’s also important to be true to the reality as that helps them help us which is a good thing. You don’t have to scare them , phrases like, ‘taking each day as they come’ and ‘ aiming mostly at steady’ are some of my favourites but I would honestly just say to people this if I was back at your early stage. ‘Thanks for asking, it means a lot, actually still feeling pretty rubbish most days as lots of healing going on invisbily which makes me super fatigued as what happened Has really given my brain a knocking but I’ll get there , just got To give it time and care’ I wish you well.’ Take each day as they come ‘ 🙂
  7. @weedrea shared these great links this week and thought it worth making more known in forum the news of young actress Emilia Clark sharing account of her SAH and now founding a charity to help rehab for younger folk impacted by this. She has had a large bleed and lasting effects but 8 yrs on has talked for the first time about this. https://news.sky.com/story/game-of-thrones-star-emilia-clarke-almost-died-from-stroke-after-first-series-11672030 https://www.thedailybeast.com/emilia-clarke-game-of-thrones-star-reveals-she-had-2-aneurysms "Clarke's decision to break her silence over her health problems comes as she launches her own charity, SameYou, aimed at supporting young people with brain injuries and helping them to access resources." Also interesting piece in the New Yorker about it. https://www.newyorker.com/culture/personal-history/emilia-clarke-a-battle-for-my-life-brain-aneurysm-surgery-game-of-thrones
  8. Hi there, the main thing here is to check with treating Team as others have said as they know your case and can best advise. I used to fly a lot and didn’t want to be scared to fly so we went to Spain about 15 months after my SAH but i also had Shunt surgery later on so had to be cleared to fly then. Main things though when you do, and you Will, is to allow more time and plan your trip allowing for what the flight will take from you effort wise. invest in some really good noise cancelling head phones and wear them in the airport if you need to. Try to give yourself some time out when travelling.. Drink lots of water before and during flight. Also Birmingham airport now have a invisible disability /condition scheme where you collect a lanyard from the airport assistance and it means staff will go out of their way to help you....may be worth checking if where you fly has similar. Insurance wise, the last few times I have used https://www.enabletravelinsurance.org.uk/ disclaimer that I know one of the founders who was inspired to set this up after hearing some of my horror insurance stories and some of his friends who had cancer treatment. Been very happy with the online quotes and service but other good ones out there too.
  9. This is my thread charting my visit to a Neuropsychologist .. Worth just putting the word ‘neuropsychology’ as a search if you want to learn more from others experiences in this space,
  10. Caw, there is a great threadfrom a couple of years back which @Claire M started which talks about testing and the pros and cons and importantly not doing it too soon. I will also see if I can find my thread from when I attended some follow up sessions at my treating hospital .
  11. Thanks for sharing this Cel, good to see that DVLA have actually made it a little clearer which circumstances mean what Impact than it was previously and used to be hidden in lots of doctors guidance notes. I wonder if has come after Headway petitioned them on this.... as far as I read it the main point remains which that Most SAH survivors can expect to be able to return to driving once their doctor deems it safe to do so. This summary I wrote I think still applies: So I think you need to see your doctor first and confirm ‘clinically you are cleared to drive’ but no longer it seems do you have to notify DVLA unless you have a Shunt, surgery or interestingly a Non aneurysmal SAH which you ‘Will need clinical confirmation of recovery and, if no other cause has been identified, a documented normal cerebral angiogram.’ Be good if you can share any advice here if you do decide speak to DVLA anyway. thanks
  12. Caw, I’m not sure how long it is since your bleed but I can tell you that 7 years on I am still seeing strides and improvement in terms of what I can do and also process cognitively. The medical profession will say it plateaus at about two years but for me that was more my medical state and healing. It took me that long ( well a bit longer) before I moved past the daily pain and discomfort that I personally experienced, again maybe I just got used to it. regarding work, I decided I wanted to go back to work as for me it was something I really enjoyed and purposeful but equally I wanted to know what I could do. To be honest my consultant and Team were supportive but also cautioned me to be patient and I went back after a long absence of 17 months. The key to my getting back to work and staying in work and being valuable as an employee was to build up my stamina and exposure to the things I was required to do. I can’t do things the way I used to, but I can do them and I can be an asset butI had to build it up really slowly. Now my employers have been fantastic throughout and very enlightened but then again I was part of the team that looked after all our diversity and engagement of employees so that probably helped me. BUT early on I couldn’t look at excel, if I had a conversation I had to lie Down afterwards, I couldn’t travel into London so had to work at home... when you lay it all out it’s surprising they were so accommodating but by doing so it meant that eventually I was able to do most things again and do them well but it does take its toll and I have to pace accordingly as I have two daughters And all the day to day life to balance with as well, no point giving all my energy over to work. What i learnt is be honest, ask for help, but also be realistic. I don’t now do the job role I used to before my bleed, I earn less and my ambitions are very different but I absolutely love doing what I do, I’m curious about my possibilities still but also say no a whole lot more. you mention a “reduced intellect” , with respect I disagree. I have brain damage which means my processing power is less, my ability to recall short term memory is poor, and I have other issues but I am just as bright as I ever was, and I’m more empathetic and I more sure of my strengths and also where I may need help. In my eyes that makes me better than I was before. i had neuropsychological testing before I went back to work. It helped me understand what my deficits are, how I could better allow for them but it also meant working with my employers was easier as we had a third party view on where I might struggle. I would really recommend doing that when the time comes. And I did. Struggle. I don’t work full time anymore, doubt I ever will but I measure from the day’s post bleed so the fact I work at all is a blooming miracle as I couldn’t remember anything, anyone, walk, stand unaided, read.... Go steady. It’s not a race, you have to build this up slowly and steady giving yourself a strong new foundation. We broke bits of our brain but given time, care and self consideration you can see remarkable progress and I’m still seeing that today.
  13. Bev ,no not on your own, and not ‘not coping’ , not ‘overreacting’ , not ‘being weak’ , it’s a very real consequence of our bleeds, It has got better for me. I still alway carry my super duper noice cancelling ear plugs ready in bag together with sunglasses. I wear a hat easpecially if it’s windy...(wind really affects me, it’s like it shakes the neutrons up ), but it’s way better for me these days or maybe I’m just more used to it. But I recall what you describe so well , it was always just around the corner and so much used to wipe me out and then would make me physically sick, fall over and just Be full of dread. It can still happen but usually only if I’ve completely ignored signs and just plowed in through . So make allowance when you know something will have an effect and recognise the cognitive effort of all the things our brain used to just be able to filter. i look at it this way. Our brains basically sponged up the blood, I think that furs up some of the processing ability for all the millions of tasks that it does without us noticing, so add healing effort and energy in the mix it’s no wonder it goes a little haywire and throws us blips. It’s pretty blooming amazing when you think about it, glad you found the video useful. Go steady now.
  14. Hi Nikki all the mineral levels get completely whacked out after a brain bleed , it’s one of the reasons they are constantly taking bloods if you have a lengthy stay in hospital. I think it takes a lot of time before the blood ,that is in a place it is not supposed to be , gets fully absorbed and tidied away. And that can hurt and it has caused havoc and injury everywhere it spilled. Sometimes we then get ‘blips’ in our recovery as I like to call them , and everything goes a bit haywire, but one member on here, Kris, used to speculate that often these were then followed by a boost or big change in recovery terms and I have to say looking back down on the road (which for me is 7years long tomorrow ) I tend to now agree with her. My biggest blips are often followed by a period where I realise I can do a little more, or have regained something I hadn’t been able to manage, or just feel a bit more me. If i run things together, try to multi task, try to push through the brain fog then I know that my brain will firmly let me know that that’s not going to happen And I will get all the symptoms you mention and more. Have I ended back in hospital? , yes early days I did and each time was told you’re asking too much, too soon, too fast....my consultant told me he knew I’d have no patience and that was a conversation after he put in my Shunt!! Its great you had had a good recovery and as a non surgical case stats show you have a better prognosis for continued recovery and I’m definately not saying stop pushing, I push daily, but equally be kind to yourself and find a new pace and know when to stop, to rest, to pause. It’s good you got checked out and then maybe look at what you are doing and maybe take the foot off the pedal a bit. Wish you all the best
  15. Jess, you are welcome. I seem to have managed to delete the last bit of my post that sent you all positive vibes. So sending again. Try to take each day as it comes but find and notice something good in each one whether it’s the sun shining or managing to brush her own hair. tell her for whenever she has a next MRI that I try to make up silly songs that match the clunky sounds , ( had loads) it helps me not worry, You could also maybe consider learning together some mindful relaxation techniques that will help both of you when in a medical situation. I practised it before my SAH and it’s helped me through no end. Ive recommended before Finding Peace in a Frantic world is a good entry read and self taught practice. If you did it then maybe you can help her with it, . good luck and as Sarah said, do ask because some things folk here will get irrelevant of age. Daff x
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