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Daffodil

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Everything posted by Daffodil

  1. Celebrating my 12 year point mark today. Still regaining and changing and my landscape so different to the one that I lived through back then. I still have growth, I have a new relationship now , daughters almost grown but BTG is such a part of my story that I think I’ll always come and say thank you here to Karen and the moderators and also I think of the lovely folk who helped me along the way and who are no longer with us .wonderful Win and the marvellous Macca whatever you find yourself doing today find the joy in some of it love and healing to all
  2. Steady does it. Your brain will let you know what it needs, sleeping maybe you are finding hard to switch off, mine did for ages, like it’s ‘wired’ so try relation techniques, things that settle and calm you, have a good night routine and take naps throughout the day. You know the cranky toddler that can’t switch off , that’s your brain right now so you’re going to have to learn some new sleep hygiene. Pacing is good, and impatience is fine, it drives you but know and heed your red lights that you’re pushing too hard. And we all do, but there’s a better recovery with slow, self kindness , the other stuff can wait a bit daff x
  3. Hey there. First I am sorry about your mum nd all I can say is have and keep hope . Everything is going to be upside down for a good while, the brain is going through trauma and it runs the show as we know so there is no’normal’ . However she’s in good hands and they are going to work to help mum get through this but it will probably feel like you clog back and forth and that’s not a great feeling for you and the family. Talk to her, she’ll feel the love even if not responding or out of it on drugs, trust me in that. the drain will be helping the pressure for her but she’ll be supe confused and short term memory shot. Speak slowly, don’t expect too much too soon. Measure progress from now and progress there will be. So again. Have hope. Welcome and come here if you need to check in or just have people who understand. Oh and rest yourself, she’ll want her baby to be ok, trust me in that too. daff xx
  4. Hi Shellie, yes you are right we are the truly blessed even though some days are still so very hard. So yoga was my thing before SAH and I could not manage it at all , tried lots of times over the years and then suddenly last year I was able to manage it again. the key to me was letting go of my ego of the things I used to be able to do with it and instead start afresh. I don’t do any full inversions like downward dog though and instead substitute a plank and also I have invested in doing more strength work which is great for menopause too. I personally can’t run, jump without pain so so my advice exercise wise is explore and play and find what makes your heart and body sing now, within new limits. For me that’s hand weights for strength, swimming for cardio, yoga for flex and relaxation and paddle boarding for all round. Oh and have a shunt as well so have to be careful with sudden jerky movements as the head pressure and finding balance is a constant challenge.
  5. Hi there Big Al. I recall reading some of your comments when I first came here scared and confused in 2012, thanks for the comfort they offered me then great of you to come back and share a hello and a view from the future .
  6. Diane Simply put , yes in the early years my tears ran very close to the surface and you know what I found if I tried to close that off it actually created a physical pain for me so I learned that letting my tears go was a release and signal from the brain. if you think about it finding a little more tears make sense. Your brain has been through a tremendous assault , shock , trauma, and yet it controls all the emotions, so it finds ways to releas tension or stress that maybe previously you could have just felt less impacted by, it’s shows that you have less capacity for now, trust it that said if you find you are feeling depressed and have uncontrollable crying then always speak to your GP as that should never be left unchecked
  7. Hi there So I am also peri and have done a lot of looking into this. Yes the tablet form appears to be off limits but I was offered and went for the Mirena coil as it is slow release hormone and no contra indicated effects with having had an SAH, I also was offered the gel but I am not using that at present. I have been on this for a year and feel great. The main thing though for us as we enter this stage of life is look at the vitamin and mineral intake and make sure we are getting enough protein and the right things for us and our bodies as we change but also for our brains which are still healing, I now take a protein supplement specifically for the menopause but I also work out and looked at my cardio fitness , so no high impact exercises for me but rather strength training, flexibility, swimming and walking and genuinely have seen a massive improvement to my overall fatigue levels, mood, skin. I am 10 years out from my bleed but am still seeing changes and improvements
  8. Hi Kathy and happy Annie day. Love the fact that you sing and Win will know, I miss her presence on here but she leaves us all with ongoing wisdoms , I for instance am never without polos ( lifesavers) as they just create a moment of pause. Keep on keeping on lovely lady and practise that fierce, you are setting your energy boundaries and your brain thanks you for it, daff x
  9. Get a lovely collection of hats is my answer, especially for windy wet weather, it seems to swirl the neurons less. but barometer head is real that’s for sure and a fast drop in pressure will bring on the head fog !
  10. It doesn’t seem possible that I sit here 10 years on and can survey where I am now. Not that I have a direct comparison from that day as I have no memory of events for a good few days after my aneurism let go , it was not until I left the ICU and moved to HDU and wondered what on earth was all the kit around me for that I have any memory at all and they aren’t that nice. I pulled my ventricular drain out , my catheter, cannula, I mean they were just an annoyance! Those days though are far in the rear view now but for some reading they may be very present and reality and so just know healing is NOT confined to the first two years, regains continue , you learn more, but just don’t try and rush it faster than your brain is telling you it wants to go. Trust me in that if you learn your warning lights and heed them then you’ll gain confidence and move forward. There’s no going back, getting back, it’s all about what’s possible from here. stay curious. https://popgoestifty.blogspot.com/2022/03/lowering-curtain.html
  11. Hey Sarah. Well done on the four year mark and it’s not that unusual to see a bit of a plateau at that point but also you have become more used to this version of yourself and even if you don’t recognise you are probably doing continuously more and taking less breaks . Try and use the time over Christmas season to recalibrate a bit, bring in a few more pauses, check your water intake and take a look at the sensory load you are subjected yourself to, see what you can change, I got diagnosed with optical migraines linked to my cycle at 5yrs out I think, basically neurologist explained my damaged brain processed my migraines different to how it had before. I had a change of BP tablets to candersarten so pm me if you like but this helped and I have been good since. Remember patience with self if you can. I still forget and get landed on my bottom!
  12. 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
  13. 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
  14. 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
  15. 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...
  16. 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
  17. 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
  18. 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.
  19. 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,
  20. 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
  21. 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
  22. 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
  23. 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
  24. 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
  25. 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
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