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Daffodil last won the day on June 25 2016

Daffodil had the most liked content!

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About Daffodil

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    Super Moderator

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

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  1. Daffodil


    Penny, they wrote and contacted both but the GP was quicker to respond. I had to really chase up my consulting team as the DVLA medical team wouldn’t budge until they had that. If you have both consents already then hopefully they will be fast but it may need chasing. Not driving is so hard, you can get a free bus pass but it doesn’t always help depending on where you live. Also access to work can help as well and worth looking at as they can help with travel costs on occassion. Someone who has done this more recently and been in touch with DVLA this year like Johnny may know more as processes change all as do the scope of reportable conditions good luck.
  2. Daffodil


    Penny, if you are cleared by your neurosurgeon and GP then you can reapply. grand Mal Seizures, invasive surgery which includes shunt or EVD means an automatic revoke of licence for a set period but once this time has passed you should be able to reapply but Johnnie is right it is a slow process. Like you I had Shunt surgery a few months on from my SAH so reset the clock and so was without license for over 14 months if I recall rightly . I didn’t get asked to take more tests just the confirmation from my doctors was enough ...that said I couldn’t and wouldn’t have driven sooner but I was very glad to get back behind the wheel , felt blessed to have the opportunity to do so and took it slow. Be warned though, cognitively it takes a lot out of you so build up slowly when you do get it back and share with us how you get on.
  3. Hi, I lost two stone in hospital and I wasn’t overweight to start with and then after discharge I found eating was tricky, no really interest but I had five/ six smaller meals a day and never let myself get hungry and that helped me rebuild energy and put the wieight back on I needed to. Like Penny I used to supplement with build up drinks like complan and found that helpful and always could manage things like porridge. some things I couldn’t eat at all but with time it improved.
  4. Daffodil

    Work/life balance

    Tina, great suggestions there from Clare. Taking on more meant my girls had to understand that maybe today I wasn’t able to make tea and actually they needed to make me tea, it built their compassion.My girls did take on a lot of responsibility then and now and it’s actually now as they are older that they see mum able to do more that I have to remind them I still need them to take on some of the burden so I can function and also accept that not everything gets done To their timescale or with them as priority ...but then I think that’s living with teenagers not just post SAH living! one thing I wanted to mention is that often when we are really poorly and physically incapable after hospital discharge then we get masses of help at the time but it does drift away. I couldn’t look after myself at first but once I could do more people gave me more space which was considerate but because I couldn’t drive for 15 months and so I had lifts to places I practised the habit of asking for help or saying ‘today is not good for me’ and that really helped me to feel comfortable asking for more help to do everyday things. I also learnt to let things go and also change habits of how I might have done something previously. Regain is good but it is more relearn and adapt I found. Most of my old ways didn’t work anymore. Classic example. I really wanted to hang out the washing. It was a goal when I couldn’t even stand. Bizarre I know but I enjoyed doing it and the smell of fresh laundry. But for months and months I had to ask someone to do it for me, then when I did do it I fell over in the basket as I couldn’t bend over, so then I got a laundry basket on legs and voila I found I could do it. Slowly though. Couldn’t get a full load out in minutes like I would have pre SAH, now I hang it mindfully! I wrote a blog post on it I stopped trying to hide from my new limits and not to hide them from others but that is still work in progress so be kind to yourself Tina, just take stock and you’ll find a way through this that’s right. Best wishes.
  5. This quote is from MaryB member in the US sharing the advice given by her surgeon not to drive for 3 months post SAH. Members report different advice but unlike the UK there seems no US wide requirement to refrain from driving. This attitude seems to be the same for Australia as well. If you live in a country other than UK it would be helpful if you can share here if you come across advice, restrictions or received help getting back to Driving that might help someone else in a similar position.
  6. This quote is from fellow SAHer Annec who gives some advice for anyone who needs to have an eye test at request of DVLA
  7. Cleared to drive Once you have been cleared to drive by doctors or DVLA depending on circumstances then you may be itching to get back out there but the best advice is to take things very slow indeed. Members who who have been through this report that the cognitive effort of driving exhausts them fast in the early days so build it up slowly and don’t rush into long journeys too fast some tips that may help taken from other historic threads: Take a passenger on your first trip out for some moral support and also in case you need to switch places. on first few trips in the car driving allow time to rest on arrival at destination even if it’s just sitting in the car avoid other distractions whilst you drive, no music , no chatter, it will take a huge effort for your brain so ease it in gently practice night Driving build your stamina up Driving some members have attended refresher lessons and courses . I personally prevailed on my husband to come out with me at first before I would take the kids in the car. I wanted a second opinion, ( third if you count consultant and DVLA) that I was able to drive safely. My confidence was lowered and I needed time to build it back up. Be sure to share what helped you when you got back behind the wheel. Or what not to do!
  8. Daffodil


    Swishy, I really enjoy gardening and it was and is an important part of my recovery but I did struggle at first and yes the bending over meant more often than not I ended wrong way up in the flower bed. Time has improved this but I actually have a cushion and sit down amongst the plants. I surprise a fair few people in the season when i pop up out of nowhere. i think you can get kneeler frames for the garden too which would be good and also if you can invest in a few raised beds as you can sit on the edges, have pots a bit higher etc. My garden changed with me post SAH
  9. This advice is taken from the Quadtrantanopia thread and the quote is from BTG member Hoofbeat sharing advice on reapplying with a visual condition , more can be found on that thread and it is recommended you read the entire thread.
  10. Daffodil

    Susan O'Neal

    Susan, sorry you’ve been left so alone but hope you find comfort and help here. Ask anything, someone will normally voice an experience.
  11. Daffodil

    Work/life balance

    Tina, that took me back as it could be me as I was in exactly the same position as you. i returned to work after about 15 months and built up slowly slowly . Work were wonderful, I had great support but like you I had two young children , mine were 6 & 8 when I had mine and whilst they helped and understood mum needed help like you I felt like I was going backwards. I had got to 12 hours work at the point we had to dial things back . In fact I let it go too long before acting and ended up in hospital being checked out and the result was we took my hours right back down and brought them back up again gradually to the point I’m at now which is my absolute plateau of capability, reserves and energy. I choose to work, like you I get purpose from it but not without balance at home and if I can’t have both then it’s no point working. I have to be careful to adjust my pattern of rest and work if other things come in but I think the advice above is good. Work out what Is possible, what runs your energy down fast, check you are getting enough breaks and rest each day , pause, not just running to the next task and see what you can outsource. So for instance we had a cleaner for a couple of years as I couldn’t do that at all and it was money I happily spent from my wage. Also look at the cooking and ways you you can save energy there with pre prepared meals, bulk cooking and get the children organisiing their own breakfast etc. Work out a point system for when you do things, drive, cook, work, etc and work out how many you think you realistically can do in each day. If it’s not working right now you need to reduce the points you give out and something has to give. I now work mornings. It allows me to rest before the kids come home and also I am a lot more versed at saying ‘no I cant do that today’. My big battle was my ego. I wanted to do it all. I couldn’t and I’m happier once I’ve realised that but I haven’t got it anywhere near right yet as life continually keeps surprising me so I just aim a thing keeping steady and when I get that in a day it’s a good one.
  12. You must tell DVLA if you have a driving licence and: you develop a ‘notifiable’ medical condition or disability a condition or disability has got worse since you got your licence Notifiable conditions are anything that could affect your ability to drive safely. They can include: epilepsy strokes other neurological and mental health conditions physical disabilities visual impairments SAH is listed by DVLA as a notifiable condition but it does not automatically mean a revoke of license. NASAH is not listed as a notifiable condition but some doctors will insist on a report to DVLA. Most SAH survivors are advised they can get back to Driving once they are well enough to do so and they are considered to have clinically recovered. A license is typically only revoked post SAH if there has been invasive brain surgery e.g for an extraventricular drain (EVD) , Shunt, or a epilepsy developed since the event or if there are visual of physical defecits which means you are not safe to drive. Typically for lasting physical and visual defecits you will be asked to attend an assessment or have a doctor/ consultant provide proof of fitness to drive. In most cases in the U.K. people can return to Driving once their treating doctor deems they are fit to do so. The exception is for those who hold a license for driving HGV and buses . They must notify DVLA immediately and are likely to see a revoke of that part of their license. Link to current DVLA position https://www.gov.uk/driving-medical-conditions Guidance to medical professionals https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/670819/assessing-fitness-to-drive-a-guide-for-medical-professionals.pdf ( note, this lists the current guidance for SAH and NASAH but if you have a VP shunt or an EVD placed or developed epilepsy then you need to read those sections too and often this means 6 months minimum revoke of license. )
  13. Our decision to add a separate section to the forum about Driving after SAH is in response to the common questions asked about Driving after the event , regaining a licence if it has been revoked, and to share experiences of driving whilst living with common defecits post bleed. The threads that follow should not be taken as absolute fact, or provide any definitive answers, as to whether someone could or should drive. This site takes no responsibility for your actions, because you must check your own rules and regulations (both driving and medical), whichever state or country you are in. This is common sense, really. It merely seeks to advise you of other peoples' experiences. We do our best to moderate any postings we find that we feel are not appropriate, or need toning down, but you are responsible for anything you do once you get behind the wheel of a motor vehicle of whatever type. Everyone is urged to apply common sense, good judgement and complete their own due diligence, or what is appropriate to their own situation, and of course, to follow the laws in their country. Please seek and follow all appropriate professional medical advice with regards to Driving post a SAH. If there is a reason why you are not driving now, ie vision problems, dizziness, loss of movement, surgery , lasting disability, medication, insurance, then whilst these threads may share some experiences that may help you, it is important you defer to your treating Medical Team, and then your Driving Authority, for their assessment of your driving capability. No one has all the answers on getting back to Driving after SAH. Each person's situation is unique to the individual and their bleed. Sadly, for some it may never be a possibility, but many members have shared experiences of how they have found getting back behind the wheel, from how long it took them, to the obstacles they overcame on the way. Remember that you have a responsibility to other road users, drivers and pedestrians alike, to ensure you are fit to drive, before you get back behind the wheel. Safety is paramount, for all our sakes. In many cases, the biggest hurdle to getting a license back is time. We hope these threads and discussion can shed some light and bring hope. Good luck to you all.
  14. Daffodil

    Car Insurance post NASAH

    Jill, once they reissue your license there should be no penalty to your insurance unless you have special conditions . It is worth informing the insurance company I always think but if that means a boost To premium then I would challenge it.
  15. Daffodil

    One year later...

    Congratulations and enjoy that Mexico sunshine. Onwards! X