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Everything posted by Daffodil

  1. Hey Gam, just glad it was helpful. Try and give yourself that gift of space and silence each day if you can, even if it’s just 10 minutes 15 can help , genuinely your brain will thank you for it. As a society ‘busy’ is worn as a medal but your brain is always busy, doing all this unseen work and yours is healing and trying to adjust to the damage from the bleed. So giving it some ‘quiet’ time is a great way to allow it some time off from all the other processing. Even now as far out as I am in healing if I am in busy situations I have to step away and give my brain ti
  2. Jean that is kind of you. ( I don’t do colouring either !! ) So one of my things of finding ‘new’ version Daffodil post SAH was I decided to train as a Business Trainer of Mindfulness. Gosh it was hard on the brain, I wanted to see if I could do it , I did and qualified if that’s a thing and I now do it for self reward really but it’s a way of my practising using my work day... I offer sessions each week for colleagues and it means I get to take that pause too! 8 years on I still need that and actually I’m finding lockdown hard as everyone is back home in my work space and so the
  3. Hi Gam Glad you checked out ok. Tinnitus when it comes on or ramps up is horrible and of course the more you notice it the more you notice it. It’s exhausting and we are fatigued enough. And there is the brain providing commentary ‘ what’s that’ ‘ what’s happening ‘ and of course the natural responses for the worry to creep up on us that something is wrong, that could it be another bleed, and then the fireworks really start going as this all spins together and can easily create the perfect anxiety storm. First thing to say is you are not alone o
  4. Hey Phil. no apology needed as we all know the fatigue fog and how heavy that can be. It is hard for others to understand really how this feels for youand the everyday hard and struggle and of course as time passes from your event people have an expectation that you are ‘better’ now...and of course in their eyes you are, back at work , able to function to an extent as before. Of course what they can’t see, know , is the toll that effort takes and actually the sacrifice of then other activities just to be able to allow you to work. Paying the bills is al
  5. Vincent, these strange times we find ourselves in have no doubt complicated what is already a head scratching, somewhat mysterious process of decision making at DVLA. the missed opportunity to take tuition was maybe a factor but the fact your assessor felt with tuition you could be reassessed May be the avenue to follow up here , that and speak / write to your Neuro consultant and ask for a specialist ophthalmic consultation maybe as their assessment may bear weight? things beyond our control are hard to accept but you let no one down, it was how it played out on the da
  6. Hey there Seleh, So my simple and quick answer to head and neck pain is yes, but there is no exact ‘normal’ . The blood takes a good while to fully disperse from a bleed and that tracks down spinal column and of course you also have a Shunt I think you mentioned which means you have surgery scarring and healing to contend with as well. Main thing is when faced with pain is to make sure you are properly taking any prescribed medication and then make sure it’s not escalating,so if symptoms are getting worse then do something, seek help, but if there is constant then it’
  7. Brenda, I am so sorry that your husband has had another stroke and you are both apart at this time. I imagine seeing him was a relief in one way but hard as well with the enforced restrictions making visiting difficulty but yes I hope he will Be able to come closer to you and home and get some rehab help. i hope he is receiving good care and was able to talk to you but one day at a time is probably very sensible. be kind to yourself and do ask family or friends for help or just to talk if you need support. That’s ok. And if you are worried or just want to v
  8. Like that , ‘no brackets’ .... I have a lot of people I know now who know nothing of adding a bracket but others for whom it will always be there. Thanks weedra .
  9. Such a gem of a man and the generosity of his family in their time of loss is humbling. Les said more than once on this site; “Keep talking to us and we will offer our support.” And he always listened and answered here and I hope his legacy means many more people feel less lost post their SAH thanks to that gift. I think Win would have also added, “we are gonna miss you pal” 💞
  10. I need a head massage today...too much weather and too muchness of doing. Congratulations on your first popiversary , it continues to improve. For reducing or living with anxiety do look at mindfulness breathing techniques and I use S.T.O.P as a way to anchor to my breath which helps me but always apply some gentle self kindness and nice words to self then when you feel anxious , S: Stop. Whatever you're doing, just pause momentarily. T: Take a breath. Re-connect with your breath. The breath is an anchor to the present moment. O: Observe. Notic
  11. Louise you wonderful warrior and Shunt gal, as Tina said you welcomed me here and you have been a support since. You always offer A steadying hand when people feel worried. Yes you have your rock but you also one of our rocks here too. determination ; it’s one redeeming legacy I think of a SAH that we know we can weather new challenge, and find a new way through! Sending love x
  12. Hi there. Just want to send you postive thoughts and healing wishes for mum. Keep sending her that love as trust me she will feel it wrapping her even when sedated. I did. . I had a sudden grade 4 SAH with EVD, although I had an anneurism so a bit different to mum. The blood dissipates down the spine after a bleed, this is painful and takes months to fully disperse but great that your mum got fast and prompt Help, this will help her recovery but it will be a long road. take baby steps for now if you can, it’s a big shock for all but this can’t be rushed and you need
  13. Tricia, so sorry to hear this , what a worrying time for you and the family and your husband will be finding this setback so de-moralising I am sure so definitely. Try and get some help for his coming to terms with this change in his health and loss of independence. I wonder if you could push for some neurological assessments, maybe Headway might help in these Covid times as he won’t be the first patient to have had set backs like this, he may not realise he is doing this if he also has a deep seatedbladder infection as they can make you really go off radar...worth checking it r
  14. Those less sad day so are the ones I celebrate the most. Things seem sharper and more colourful on those days, youve been such such a great advocate on here Chris. Keep on running x
  15. Bev i think you are doing amazingly. It’s hard the letting go of who we recognised ourselves as and the anchors of jobs, purpose and all the other markers which we built our life navigations around. Those fall away and then it’s an adjustment of what next, what’s possible in today, in tomorrow and celebrate the good and small things amongst that. so a few things that help, still help me. 1. Mindfulness. I practiced before and I practice now but harder but with more gentleness. So I’m not rigid in my practice and can find mindfulness in many things I do, it helps me stay pre
  16. Hey Bev what a time you are having with this and I feel your pain as this is a hard time, I recall it too well. We cant give medical advice as you know but what has served me well is if something doesn’t let up or Is getting worse then go get checked out or at the least call your Neuro Team. i had a lot of piping discomfort early on after my VP shunt was placed , they put it to the pipe work settling down , I also had a lot of nerve pain under my shoulder and under rib cage which took my breath away, heat definitely helped with some relief for that as did baths wi
  17. Hugs and healing vibes. Let us know what the team meeting outcome is xx
  18. I have friends who just think I’m boring because I don’t drink but also I think having me around scares them, makes them think how fragile life is. i don’t worry, they were decent friends and we had good times but understand they want the old version of me and I can’t bring that, so I just let them drift and new friends appear when you least expect it
  19. Macca hope the anniversary was special. You always bring words to situations that offer realism, hope and comfort and I know you continue to look forward to the possible of what’s in each day so I am sure it was a lovely day. Thank you for your friendship and help on BTG. You are a wise warrior indeed. X
  20. Hi Claudette, thanks for coming back to site and sharing how you are doing and wow what great news on the new study and seeking a new profession. I always think the anniversary posts are often where people first visit and read after they come to site. It’s that hope of things getting better, that there Is still life to be had post SAH, fulfilled, interesting and always progress. Yours a great example x
  21. Jess. Happy anniversary and have a great day at work. You have inspired so many people in the time since especially those I know who had concerns about having kids post SAH. So a big hurrah and well done for all you have weathered. Onwards x
  22. Welcome DD . Glad to hear you are doing well in your recovery and also that you are journalling how you have felt at times. That can be very helpful indeed. Sounds like you got fast help and be sure to post if you have questions. MK is my local hospital and I have been there a few times for Shunt investigations although I remain an outpatient at Queens in London but have found the local team for the most part very responsive and they get better each time. Go steady Daff
  23. Ann. Bless you, what a time you have had. It’s a no guarantee thing any of our fixes I guess and if you need a stent in future then I'm sure you will face that with the same courage as you have faced this set of circumstances Go steady and pace yourself. Recovery with young children is challenging but they can understand how they can help you and will Be more empathetic as a result of their life experiences. Don’t push a return to rush but enjoy the enforced world quieter pace, find time and way to be in nature and just go steady Take care Daff
  24. I found early on the best way to explain was to simply explain I now need to give my brain some time out and space to heal carefully and that means being quieter than I was before, avoiding over stimulation and ask for their Help and consideration. Say to people you are going to need to take regular breaks , don’t worry about giving yourself timeouts essentially, and to be honest cut yourself a break of whatever anyone else thinks. Who cares. You are here and just celebrate that and yes, be kind to yourself. The shock of this event, forced upon on takes a long while to
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