Jump to content


  • Posts

  • Joined

  • Last visited

  • Days Won


Everything posted by Daffodil

  1. You’ve been in my thoughts today Ann. I hope the meds they gave have been kind and the surgery has gone ok. Now take your time and recover gently and use all the wisdom and tips of what you have learnt over the last few years to help you in that, Go steady,healing thoughts being sent your way, daff x
  2. Hi there I hope you are gaining some comfort and confidence from the replies that regardless of what has happened that caused symptoms then and now, it is about what can be best done moving forward to be able to make sure you are ok now. We cant give medical advice but asking your doctors for blood tests would tell you if you have any deficiencies that might be making you feel worse and which can show up after any brain event, as can just keeping your own eye and diary of daily blood pressure and taking action if that’s outside normal ranges. Do call and talk to someone like Super Mario advices. Worry eats away at you and combined with knowing the risk of SAH from your grandfather’s history means that you have rightly had concerns about this event that was unexplained. Jess is right , the effect of blood on the brain would show in an MRI but you have clearly had an event which has rocked you, made you feel incredibly unwell and worse, nothing was found leaving you with a massive uncertainty. You are doing some great things right now, you are asking for help, you are proactively trying to get help and support so please continue that road no matter how hard, and we are here to help, you just have to post. Rest. Be kind to yourself. That’s a good place to start daff
  3. Daniel Have to jump in on this one too as impatience, ego, ambition , drive, determination , stubbornness, well all these traits are shall we say something that can make for awkward company in recovery but equally they are blooming good traits to own post a brain bleed as you will explore, question, be curious and fall down and get up . BUT, and yes it is a Big BUT, they are the same traits that make acceptance and patience post a brain bleed incredibly hard and fleeting . My opinion to you regarding mindfulness , meditation , stillness is think about the effect the gardening has on you, if you can open your view that practicing gardening is mindfulness in action , it is the paying of attention to one moment, one act, something that can’t be rushed then maybe you may be open to trying some practice yourself. If you don’t want to go to a group buy the book Finding peace in a frantic world and do the short course in that. If you hate it then burn the book! Regarding counselling , it’s fine to have a view that you should be able to cope, to weather, to soldier on, lots share that, but also it’s ok to acknowledge that some things when broken need more attention to fix them then previous breaks. They need extra arsenal , a perspective that talking to someone may help you carry the weight of worry is not a weakness it is a sign of your continued courage and strength to move on with this, to change, to explore what you might not have done before. Headway was a big deal for me. First asking them for help and then Accepting I needed it, they came and assessed me and they helped me put back some of my confidence foundations, one was to take me swimming as up until that point I was scared that my hole in the head or the shunt might let in water!! Yes really. Getting back to contact sports I would think hard about, and then think about what you might fancy trying instead. Like Sami I can’t do high impact stuff anymore, and yoga was out as can’t do any inverted moves and I’m too competitive not to want to do anything ...so what did I do...three yrs in and I took up paddle boarding. I may have been falling over on dry land at the time but my wise , now departed, mum said well give it a go as hurts less falling in the water. And she was right. And so I got good coaching and now I paddle weekly and yes it’s slow, but it’s exhilarating, I’m learning all the time but single focussed , it’s everything my brain craves and if I need to I sit down on the board , drink water, eat a snickers and chill. My pace, my terms, my way. So continue with the reinvention. Continue to regain what is within reach and that doesn’t hurt you and if it does, look for something different that gives purpose. You’re learning a new way to dance and there’s purpose in that Go steady daff x
  4. Well that’s one way to solve it 😂 Glad it’s getting looked at still just to be safe and I imagine hitting your head gave you a bit of a scare too so yes get it looked at. oh and paddle boarding I really recommend for gentle cardio that helps core and balance. And of course falling over in water hurts far less than on land...
  5. Brilliant news Kerry. Tell him go steady and expect to feel more fatigued post drive and to not push through that but have extra water and rest. good luck with the baby
  6. Is it wrong that I am loving this thread? You probably sum up what a huge amount of us feel at the outset....annoyance, sadness, frustration , loss..... Daniel, welcome and you know what? it’s absolutely ok to be questioning absolutely everything right now and also to feel downright p’d off that life pulled a rug from under you and all those things that you knew about yourself, the trust you had in yourself and your capability to approach a situation has changed overnight...and the reason why...well a bleed on the control centre which no one knows how it happened given as the cause. no it’s not helpful to be told you are lucky to be here. I mean yes you are but no not helpful and tbh I couldn’t read the dented image book , I personally preferred ‘rebooting my brain’ by Maria Ross. Her tale is extreme but her attitude is what sold it to me. Try a sample on Amazon maybe? so it’s time to try an adjusted dim sung approach to post SAH living. You strike me as someone who went full at everything, and I admire that, but now it’s time to approach in the small bite size amounts that work for you today. And celebrate each achievement in that. So gardening, great, but you have to build stamina up slowly and I don’t just mean physically wise but cognitively. Everything you do right now is taking and consuming energy that your brain doesn’t have to offer up , so it steals from other areas and then you feel crud, and then that feels worse and you can spiral. look at the possible in today. That’s it. If you want to trade and you previously would have done that for three hours maybe then just do half and hour and see how that feels. Track yourself, become a master or working out your energy spend and balance that. Eat well, replenish the lost nutrients. but most of all, give yourself a break, spend time with the cat, watch how she deals with her visible injury, how she nurses it. You need to do the same. you will go forward from this, just not possibly at the pace you’d like or have been used to, daff x
  7. Hi there, I am wondering if you mean the burr hole scar from where the extra ventricular drainage was placed? A shunt is placed under the skin and remains in situ with tubing unless removed or there is need for further surgery? I have a burr hole and it can change a little which I associate with barometric pressure but it sounds like you may have a little cyst or something , possibly a damaged hair follicle, BUT, go get it checked out as soon as you can.
  8. Hi Dawny, I am hoping you feel somewhat reassured that how you are feeling is entirely normal but that yes members have come through who have required similar treatment of additional coils being placed. It sounds like they are saying the impaction of the coils could do with some topping up, so not a threatening issue but one that would benefit from that extra coiling. The view Clare shares is so true in that coiling in a non emergency situation is dramatically different and carry’s a different risk to when we are coiled to stop a bleed and that should be a little comfort. But keep talking to the doctors and also come talk to us when you get news, we promise not to miss you again. I have a neck on my coiled Annie too and get it checked regularly, in fact I go up to my treating hospital next week for a MRI visit, so know this could also be a possibility every time they scan. Take care and keep us posted, we will try and help you through this part of the story,
  9. Kathy , really touched by what you have written so thanks for sharing how my blog made you feel and I’m really glad it helped at a time you felt was useful. We all keep on keeping on. And yes the art of possibility is a good skill to practice , that and curiosity. keep being kind x
  10. Welcome Ilse, sounds like you have a great attitude and I applaud your talking about your wishes , I did likewise after mine and updated my will and talking about death is not a taboo in our family, although obviously not a cheery subject. Glad you plan a phased return and to delegate more, and the extra sleep and rest will help
  11. Hey everyone, so it’s my nine year anniversary today. I collapsed at an event I was running for over 300 colleagues in central London, should have been my day off and which was the saving of me as a friend with me whose husband died from a SAH realised what was happening and insisted on calling 999. A paramedic fast responder doc was a neurological SME, I got rushed to UCL after a Grand Mal seizure and was at the National hospital for neurology and neurosurgery and in the operating theatre within 6 hrs of being admittted. I had a grade 4 SAH with acute hydrocephalus and went on to spend over 5 weeks in ICU acute care and hospital and was later readmitted to have a shunt fitted ....who knew that is what a day I would have, it was all shaping up to be such a fun day So today I wrote a entry for the blog I started after I was readmitted to hospital a few months on with complications after my SAH that blew up my life on this day nine years ago and led to James (Shunt) being placed. It was as you all know and share a horrid and hard time and I just wanted to track it somehow. I don’t write posts to my blog much at all now, just do it really to mark that days anniversary and more for a marker for myself. It’s an odd one as the main part of ‘surviving’ really came in the years after and which you all share as an experience but of course the dramatic event was such it marked me and plays such a factor in who I am today and so I choose to take stock. Read if you wish, not if you don’t. https://popgoestifty.blogspot.com/2021/03/what-difference-year-makes.html. Sending love and light to anyone who needs it today and always hope and look for the small wins each day. I always think they are there to be enjoyed no matter how hard won Daff x
  12. I was really nervous too and understand why you might wish to delay or avoid completely. But like Chris I felt it was a good milestone opportunity, like it would indicate if I was in good shape and on the right path, yes there’s risk as with all procedures but you are surrounded by folk who know exactly what to do. One thing I remember vividly is I got sent the link as a joke from a friend to the hair remover for men reviews and my MIL read them to me afterwards in my ‘lie flat for six hours’ phase. We cried with laughter I felt I was going to do some damage. So it’s ok to worry, feel nervous, acknowledge all that and that you’d prefer not to but do it anyway. Get a sedative yes, but get reassurance you are doing well, it’s a gold standard check, nothing else comes close. PS the same link I got sent...do not recommend as a post angiogram read or if you are easily offended then DO NOT read it , it’s very rude ! But that good reminder for that all important tidy up before procedure https://www.amazon.com/Veet-Hair-Removal-Creme-200ml/product-reviews/B000KKNQBK
  13. Hi there. I am not on blood thinners only blood pressure tablets but have a shunt placed. I experienced some sudden eyesight changes which resulted in my requiring a full ophthalmology assessment but my experience was very similar to yours, sudden loss of vision in one eye on a number of occasions. Every time MRI, the neurological checks etc revealed nothing , my shunt and SAH consultant happy nothing related to the SAH or hydrocephalus so I got referred to a neurologist and we established for me it was a migraine now presenting itself differently as a result of the brain damage from the bleed. The way they described it is the usual migraine effect of say a blood pressure change and how it portrayed for me changed as it tries to press the usual receptors in the brain, those are broken or damaged and it ends up switching other receptors...so vision. This is taken from an earlier post I made on this : He prescribed a change in BP medication and since then I have been symptom free. BUT, any sudden eyesight changes should always be checked out post a bleed so yes please don’t ignore it, rule out anything more serious and then work with neurologist. But deep breathing helps, checking that things aren’t deteriorating and then if not just try and relax the heart rate. Easier said than done but it helps. Go steady Daff
  14. Ann. Just a big WOOHOO 🙌 from me . So pleased , it’s a nice feeling when everything just sits tight
  15. Hi, some lovely kind advice above and hope you are seeing you are not alone. The truth and reality of our changed brains is a hard one to explain to others , how that feels, the loss and adjusting let alone accepting it is even harder. A lot of the early days is about surviving really, getting through the day, the pain, the fog and slowly slowly clawing back what we can manage and seeing what is else is possible. But my goodness we are hard with ourselves along the way, I mean no one handed us a manual of how to live after an brain injury , and so here we all are muddling along, doing as best we can with our unique injuries to our even more unique brain. What I am trying to say is give your self permission to not feel ok. Do talk, do ask for help, do explain that today It may be a bad day and don’t feel you need to make an excuse for that, you don’t need to, the truth and fact is that today you feel extra fatigue, extra pain, because of your injury. Whatever it is, acknowledge that hitting of a red light , feel a little bitter or cross with it if that’s the emotion but then ask yourself what kindness can you offer yourself to get through today. Try practicing some relaxation techniques and make sure you’re are eating and resting well. Looking after yourself. You are changed. We all are. It’s a truth of our trauma but your kids will love you no less and will have learnt from your struggle ( mine are 17& 15 ) but here’s the thing, we were never going to be perfect mums , bleed or not, ( my goodness the words my kids learnt and that was before SAH) but we are still their amazing mums and here and giving it the best we can . And that’s a happy thing. Hugs. Now give yourself one too and a pat on the back for how far you have walked and overcome in the six years. Daff x
  16. 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 time out so that I don’t overload... steady does it daff
  17. 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 buzz is back some days...I need to take more time now for pause I'd practised mindfulness before SAH and it’s helped through the years since to find still and calm in the many masses of up and downs . For those who want to explore, Ive recommended once before, a book called ‘finding peace in a frantic world’ Mark Williams , it offers ..guided sessions and it’s an easy way to introduce the topic and try and establish a practice ....it’s not at all fluffy bunny....I don’t do fluffy bunny!!
  18. 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 or the first ( or the last ) to feel like this and have this happen. Getting checked out is never a bad thing if you feel things are escalating so give yourself a break for seeking help... and just notch this up to being one of those times you had to get checked. I certainly have got my fair share of those hospital visits for a check. Things that help, have helped me.... Turning off all competing noise and switching of devices. Try and have some complete silence. It may sound strange as then you hear every buzzing more but allow yourself to just be still, do nothing. I practice mindfulness so I will often do a breathing practice and that helps but if that’s not for you then do something you find relaxing but gives you focus. Colouring books, yes really, sitting and drinking a cup of tea or watching the everyday out the window. Try and focus on the moment you are in and the sounds you hear around you and what you are doing. Every time you realise you have come back to the tinnitus sound just note, oh yes there you are, and gently focus back on what you are doing to relax. You are really early days. Your brain is still invisibly, but tirelessly working to recover from a bleed. A foreign spill of liquid where it had no place being. Your worry, other stresses are not easily processed right now, so you need to be gentler with yourself. Give it time. You have to practice a little the stopping and pausing and focussing away from the buzz, and it’s not a fix. It doesn’t stop the noise but with time, you learn how to divert your focus from it, it’s less loud. Also when that feeling of worry creeps, try sucking a mint. A very wise member called Win, also suggested singing a song and yes that helped me too. This video in this post may help also. Go steady daff
  19. 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 always that spectre, trying to maintain things as we had, in the way we had before SAH, but equally there needs to be a level of balance. Is there a way for you to work differently, can you adapt how you work so you get some respite and time to rest. i didn’t get back into work until a good 18 months after. I was fortunate I had some insurance to tide us through but that said I physically would not have been able to return earlier. The key though was building up slow and then noticing every time I hit a block slowing and adjusting and then building up again. My ‘blips’ are what I named them. The loss of words, severe pain, crushing fatigue, vision changes....it all kept me on my toes,I still get them now but so much less now and when I do I heed them as signs I have over extended my battery capacity. The four year part is a strange time so I think you might enjoy this blog post I wrote back on my four year mark http://popgoestifty.blogspot.com/2016/08/balance-takes-huge-amount-of-practice.html it was a time of realising I had regained some of what I lost,that my health was more stable m but that somethings were gone. I had to start exploring again, finding balance in life so I had the energy to explore that, investing in me. I still felt dreadful a lot of the time but the possibility of change was around then. Maybe it’s your time too. But go steady. Be kind to yourself. Still healing down the line. Mine is still revealing. Evenwith the Shunt on board my balance is still getting better...thanks to paddling I think!!
  20. 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 day. I hope you have renewed opportunity post lockdown to try again best wishes
  21. 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’s probably the effects of your trauma and you need to heed it as a sign to be kinder to yourself in that moment. Ask what might help you? Shutting your eyes and resting? Getting a good nutritional snack, meal for all the healing you are doing? Drinking some more water? Lying slightly prone but with head raised, a vpilow can be a good friend in early days. I also found heat helped me, so a hot water bottle or heated wheat bags just provided comfort. I also practice mindfulness and that helped with the anxiety anxiety of the pain which can be equally debilitating, everything is a worry, and that’s entirely normal. do keep a diary of things, how they feel and celebrate each day’s successes. All the small stuff . Try not to overdo it. If you do something, anything, then rest after it without fail. And just go steady. If you are worried, come here, someone will spot and answers. We have all worn the shoes. gentle hugs, you know resilience, you will use that well now as you heal . go steady daff
  22. 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 vent feel free to come here. Someone will listen. Take care, go gently. ANd look after yourself, eat well and rest too. That’s important so you have strength in all this.
  23. 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 .
  24. 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” 💞
  25. 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. Notice what is happening. What is happening inside you, and outside of you? ... P: Proceed. Continue doing what you were doing.
  • Create New...