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Daffodil last won the day on March 1

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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. 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.
  2. 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,
  3. 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 .
  4. 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
  5. 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.
  6. 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.
  7. 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
  8. 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
  9. Hi Jess i think some of the tips of what helps bring comfort may work equally for a child; so don’t overstimulate, lots of water, healthy food intake anD eat more regularly , probably check vitamin and mineral levels regularly especially as she’s growing too. Different strokes help young survivors of stroke which SAH is a type of . They may have more experience to share https://differentstrokes.co.uk/
  10. Sarah. You are welcome, glad it’s ok news and six months scan I will hope will bring reassurance. I have never regained full work pattern and now work mornings with one day off. Very different life, career trajectory than I had thought but it is enjoyable and purposeful and allows me to keep steady which is where I aim plus manage being a mum to teenagers and doing the odd social outing. Finding your new normal is going to take time. And yes good weather is better for us, rainy days and many of us can tell you the post sah head is a perfect barometer. X
  11. Sarah, really hoping it goes well for you, do come back here if you need to chat anything through, people will Try and Help. i posted a link to a video I found about ‘flooding ‘ in the SAH hints and tips section which may help. I wish I had seen it early on as I have come to the rhythm of it only in the years that have passed since. We are all unique in our bleed impact so return to work for instance is a complex one as our bleeds are different, varying in scales and extent , damage in different places to equally unique brains and we all do different jobs...main thing I think is to talk and be open and I do believe if you are good at your job then people for the most want to find a way to make it work and keep you. Consultation and risk of redundancy is a hard thing especially post SAH, take more time to rest than you think you need and try to notice when you are getting close to overload maybe. My sign i am about to run a red light is a very stiff shoulder and increased grumpiness. If I ignore that I can expect some head reaction that will no doubt leave me worried and unsettled but I’m a little more used to it now. I for instance lost sight in one eye for a while last year, had to get scanned, everyone panicked , but a lovely neurologist concluded it was my brain reacting to a migraine. I don’t get the pain now from a migraine it seems but instead it just switches bits off...misfires! BUT ALWAYS CHECK IT OUT they never mind. And try to find ways to relax in the middle of that. My trick is if it’s not getting worse then you are probably okay and have to just sit and watch and breathe. Hard though. So Im really glad you are getting checked out . Good luck , I had frequent MRIs in early years at behest of Team and only recently got news I now no longer need an annual scan, I came to find them a positive thing and of course it gives a great baseline for your team of how things are.
  12. Once of the most distressing things for me post SAH was my ability to cope with cognitive demand and sensory overload. It was painful. In time that’s passed since, 7yrs, I have learnt more about my triggers but also how to pace and rest in ways that’s right for me but I still know flooding can and does happen. I still wear sunglasses and earplugs on many occasions and still alway carry them. lots of people come to site and struggle with the sensations and how this feels And I think this is a great education video that explains it credit to Northern Brain Injury Association
  13. I’m with Weedra , grumpiness is a great sign for me. In fact my kids are best at saying to me ‘mum are you ok, you’re really grumpy’ , if I hear that I know my fatigue is notched up at Amber levels and I need to rest. If I don’t I’ll push through a red and that’s not pretty, I then have some pretty awful reactions where it’s like the brain throws a temper tantrum with me....I try not to run a red light anymore, but did early on and was left reeling. first I think the slower pace you have to adopt, are forced into after our events is not laziness. It’s the best pace you can manage at the time but because we were all travelling at 70 mph through life it’s like suddenly finding yourself sat in roadworks and contra-lane. You have no choice but have to slow. You have to stop when required. It’s all part of going forward. Be kind to yourself right now, the more time you take the better it will be down the road. Everyday fatigue for me is my normal. I can get a good nights sleep but still wake up tired so know every action each day is a bit of a horse trading game with my energy bank. What can I do, what do I need to drop if I do that, when can I get rest time, the internal conversation is just my natural state now. And I do loads now compared to post SAH. But I do everything more consciously and with consideration, I don’t rush and I don’t multi task...I am a skilled uni tasker who has little pauses afterwards. The best analogy is that of a battery pack. We damaged our charger, it probably can never charge back to its out of the box state, so you need to spend it wisely and know the capacity . the level of energy we can hold is unique to us as individuals. Some people will get back to being able to do everything in time but probably differently. Others won’t , time will tell you that but tiredness in the first twelve months is the brain telling you it needs some pause. You can’t see the bruising, the hurt , the damage...but it’s there. Let it heal .
  14. Hey Julian, I agree on the water front but also find my headaches can push up in winter with less daylight and I now take a low vitamin d supplement even though I spend quite a bit time outside each day , anyway I think it helps me keep balance and I also change my food in winter to eat more fish etc. Now do check with doctor before taking any supplements and maybe ask for a blood test to check your mineral and vitamins but do think that we absorb some less well post SAH, that’s just me speculating, but I always like to try and find a logical explanation. Water is probably the safest bet. 😄
  15. Hi there Caw, glad to hear you are doing well and continue to look after yourself . It will help. under the disability act you can request adjustments at work and I think that every job can accommodate some change and flexibility but often it’s not asked for because most of the time no one else has ever done it previously at that employer . Most informed and enlightened employers want to help you get back and stay in work so be creative. as weedra says maybe consider how you might flex hours or at least inject small breaks. What you have to consider is how you give yourself cognitive respite during a work day. It will Improve but you may find going back you are fine first few days and then the cumulative is just too much. Maybe do some small tests at home of what impacts your energy most, is it a long walk. Listenening to an audio or podcast and see if you can take notes, talk to a lot of people and see how the effects sit with you? Knowing what triggers and drains you post bleed is important as then you can make allowances temporarily to help you build stamina. Your family is right to have concerns, you had a bleed and you can’t pick up just how you left it. Time to shift mindset an£ be open to doing things differently. Ask and at least explore that is my best advice. Other folk have got back full time work , we have had doctors on forum who managed to get back to their shifts but jumping back in is not something I’d ever advise someone who has had a brain injury and make no mistake, that’s what a bleed is.
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