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  1. Today
  2. Thank you all so much for your replies. Your support is massively appreciated
  3. Yesterday
  4. I found this line did the trick "I look well from afar, but I am far from well". The problem is you can't put a bandage or a plaster on your brain for people to see. Explain to them that if you'd had a heart attack, then people would be telling you to rest and take things slowly. Well the fact of the matter is, your brain has had a "heart attack". I soon realised that the best thing for me was not to worry about what people thought, but how I felt. I'd tell people that I was fatigued as this was a result of the SAH and that I needed to rest - it really is up to them to deal with, not you - your main priority is getting you fit and well xx
  5. Hi Carolyn, yep I get that looking good outside doesnt follow you are inside, so get that.... When I was in the Rehab I got psychologist support that continued a bit when discharged... You are early in the recovery process remember its the Brain (not a broken bone), keep hydrated, and know that we really do understand... Take care, stay-safe...
  6. Also does anyone else get this. When someone comes to see you they say how much better you are looking and stay for a cuppa etc for an hour or more. I can most often chat fine with people and if I start to get tired they don’t always see it. Just remark how well I look. I feel they think I’m fine but inside my head is a different matter. It’s buzzing/tiring etc. I wonder if people think I’m putting it on because I look well. Inside vs outside??? How do I explain that?
  7. Last week
  8. Thanks - I’ll see if there is anything like that for me. Covid has made things more tricky it seems. I’ve had next to no support apart from 3 x 10 min phone calls from a GP who’s never met me. Still no follow up from hospital
  9. As I said in my last post my Neuro-psychologist has been my saviour. I was referred to her over a year post bleed as I had fallen through the follow-up net when discharged from hospital. I have been seeing her for a few years now and it's all been on the NHS. Her main goal is to settle me into work again but that has involved a lot of mental support too. I believe there is a confidential helpline you can access through Headway. May be worthwhile looking at their website for some info. Good luck xx
  10. Thank you all for your replies. It’s always very reassuring to hear from people further on than me. Did anyone get any mental support and if so what? NHS or private and did it help a little or a lot? onward and upward
  11. Hi Carolyn I too am a get up and go person and to put it straight I have struggled. Like you I had a NASAH with no physical deficits but the mental toll has been huge. I have gone from being a high functioning individual to someone always questioning my judgement and ability. Changed my job 3 times since bleed and reduced hours from 41 per week to 22. Fatigue is much better now but memory still bad - I appear to have lost the ability to pay attention and therefore often can't remember what I have done 5 minutes ago. My saviour has been my neuropsychologist who has nursed me through the last 4 years - metaphorically speaking. All that said though, I am physically fit and regularly run 15 miles over a week, physical activity isn't a problem. You are so very early in your recovery - take it slow and steady and you will in time find your new normal. To be honest I'm starting to accept mine at last - I think Clare xx
  12. Macca... your words are so inspiring "sudden change foisted upon you, in a surprise attack that damaged you, but didn't finish you off... Carolyn amazing words from Macca, I am 3 years 4 months from my SAH and Vasospasm. What I wrote above from Macca is exactly how I felt, i was surprised (shocked) but it didn't finish me off. Carolyn you are still in the early days of this, I know you know that. I had no patience for the slow movement of my recovery and pushed hard to do some things that made me feel in control. I had this visual in my head thinking I wanted to see it in the rear view mirror...haha, I don't know why but that seemed to make sense to me. It has moved over to perhaps my side view mirror but it is not standing in front of me anymore. I will talk a bit about the fatigue, I simply must surrender to this on occasion. I find if I continue to push I start feeling a bit out of control of everything...I have made it a priority, sometimes I just need to sit down for half an hour, sometimes I need more. Dealing with it mentally has also been a slow process for me but I continue to learn to be good with myself. I did go for some mental health therapy and it was helpful...A good session of visualization makes me feel content inside...I practice at home now... I wish you the best Carolyn, please come and post whenever you need to or want to, we all share something here xx Jean
  13. Thank you, Jess, Tina and Macca. I was so looking forward to my 10th anniversary and this happened. Truly a shock but again I’m grateful for my 3rd life. 😊
  14. Hello Ann, Sorry you had to go through this twice Ann, that really is unfortunate. I remember my surgeon telling me that over time coils can compact themselves under their own weight, but that 'it was as rare as hens teeth' was how he phrased it. So you really have been unlucky. The good news is that you survived. I would certainly go looking for answers, if only to understand what happened. On the positive side though - you survived. I've never heard of it actually happening before, but I knew it was a possibility from something I read once. Thank you for sharing! Best wishes, Macca
  15. Hi Carolyn, Great question. I'll answer from my own experience and I'm sure others will add theirs. firstly 6.5 weeks is virtually nothing in recovery terms. Months and years is more the order of the day. What I did, and it was completely wrong, in my opinion, with hindsight, was to set myself a goal of getting back to normal. What's wrong with that, I hear you ask? Well, what was 'normal?' In my head, It was back to being the old me, where I was the day before I had the 'event.' But then, that was all I knew. I realised later that was never going to happen. What I failed to realise when I woke up, was that this was the new me and was the new normal. I just had to find out what that was, and what it meant, for me. If you look at old photos of yourself, you see big changes in yourself that you took in your stride as they happened over time, almost without you realising. It was only when you looked at the photos you realised how much you had you changed and you probably had a laugh about it with your family and friends. At your haircut, your height, your weight gain or loss, your shoes, the car you had then as opposed to the one you have now. They all evolved over time. What you have now is sudden change foisted upon you, in a surprise attack that damaged you, but didn't finish you off. You survived, and what you now have to do is take stock of what happened, how much damage was done and try to adapt and get on with life as best you can. To put it into a context, think of any military conflict where a commander has insisted on a surprise attack and what the response was. The Japanese commander, Yamamoto, planned the attack on Pearl Harbor in WWII. They surprised the fleet there. The American response was to dust themselves down, assess the damage and set about repairing themselves ready to strike back. All the battleships were sunk, but they survived the attack and planned their return strike by using what they had left - the aircraft carriers! This might, at one level, sound absurd, but what I am saying to you is that you have suffered a surprise attack on your body, you have survived, you have to assess the damage done, and you have to find a way to strike back by getting on with your life, adapting to what you have left of your faculties, bodily strength, circumstances and so on. You will find what your new boundaries are by assessing what you can and cannot do. Those you find difficult you will delegate, or avoid, or change. but you will adapt. You will find what works for you. You mention several things in your post. This is how I look at them: 1 Your brain was attacked 2 You survived and got that 'wake up call' and still have your optimism (a great tool in these circumstances) 3 You recognise you are overweight so you have started to assess - now find the right diet and exercise regime with the help of your doctors - maybe that will help you get your 'mojo' back 4 You have realised recovery takes longer than you anticipated - so plan in the time to give you the space to do that 5 You have friends and family - use them to help you in your recovery - you will be surprised how many people will want to help - but you have to let them know you need that help - so tell them - all you need to do is ask! You can't live in splendid isolation all the time. Look on it as how much have you done for others - now it is time for them to give a little back - so lose any guilt complex you might have after being independent for so long. 6 Keep a diary and write things down - including progress and your assessment of where you are, what you need and where you want to be. review it regularly. Embrace the fact that change has happened, deal with it and move on. Learn from the past but don't let it rule you. It sounds harsh, but it is reality and like it or lump it, none of us can turn the clock back. yes you may need a period of recuperation and going through the 'Why me?' phase, but eventually we have to get on with it, so make the best you can of it. All our journeys are different in some way, so why not make it as fun and as useful as you can make it? You have a positive and optimistic attitude - that will make a big difference. Life is worth living, making a few adjustments won't change that in your case. I hope this helps, Best wishes, Macca
  16. Headway has a branch in London. https://www.headway.org.uk/supporting-you/in-your-area/
  17. Thank you for replying so fast, i would like to know are there any support groups in london i would be able to connect with?
  18. Hi it’s me again - sorry to bombard you all with questions! I’m now 6.5 weeks (not that I’m counting lol) post a NASAH. I have no side effects physically so feeling very lucky. I am finding the speed of recovery a bit challenging as I’m a get up and do person and sitting around isn’t really me. I have however become best friends with daytime TV (arghhhh!) as I simply can’t sit and do nothing. My question today is how you managed with this whole thing mentally. I don’t mean the anxiety attacks that wash over me unexpectedly but the whole thing about what just happened to me, what the future holds ie will I get back to normal? And how I regard the future. A friend asked me if I had had an epiphany moment....a phew that was close I’d better get on and live fully going forward and make most of my time. I said I was as deep as a puddle and no I hadn’t really. Thing is the fatigue means I’ve lost my mojo a bit. Although if I’m truly honest I think I lost it before the ‘event’. But the event should really be a wake up call!! I need to lose weight (about 2 stone would be good) but have battled with that all my life so why should this make any difference? I need to change my thought processes whilst recognising that this recovery could take longer than I ever imagined.... I imagined about 3-4 weeks tops cos no one told me any different lol - ever the optimist me!! I’m sure the answer is pace yourself, be kind to yourself and just focus on recovery but for me part of recovery is this whole mental thing too. What did you do? Did it work? Any ideas or tips or thoughts much appreciated. Onward and upward Cx
  19. Hi Ann So very sorry you have had to go through this all again, Bless you, what a nightmare. Thank goodness the surgery was a success, so very scary for you and your family. Well done on pushing for a scan in December. I guess with Covid etc everything is all delayed. I agree with you to fight for your yearly scans especially in these unprecedented times. Thank you so much for sharing and know that we are always here for you ❤️ Wishing you well with your ongoing recovery. Keep in touch and let us know how you are doing. Take care Love Tina xx
  20. Hi Ann sorry you had another bleed hope you have a speedy recovery xxx
  21. Hello everyone, My name is Ann from Calgary, Alberta, Canada. I had my first SAH December 10, 2010. My ruptured aneurysm was coiled. This site was very helpful to me during that time. I was grateful to know that I was not alone. It took me 10 months to fully recover and Behind the Gray has been my constant and loyal companion. Although, I was not an active participant I found comfort in knowing you were all in “my team.” Fast forward to July 16th, 2020 around 9pm, I was in bed trying to sleep. My 7 year old son came to the room and asked if I would watch TV with him. As I was getting up, I felt a sharp pain on my head and felt pressure as intense as the one I felt almost 10 years ago. My husband took me to emergency. I remember bits and pieces of that night. I woke up the next day in a hospital bed. Two doctors came to talk to my husband and I. It was the same aneurysm from 2010 ruptured again. The coils somehow detached. They were unsure if coiling would work again or if they have to put a stent. I was annoyed that they would discuss this in front of me. It made me really scared that I might die. I was sad that I couldn’t even hug my son before I go to surgery. Only 2 designated visitors are allowed per patient and no children younger than 14 because of Covid. Thank God the surgery was successful. They had to put 4 new coils. There’s a discussion of putting a stent 4-6 months from now. I have mixed emotions about this but if it needs to be done I’m all for it. I go back and forth to wondering why? Why again? I vividly remember asking my Neurosurgeon in 2010 the likelihood of this happening again and he said it’s unlikely. I had scheduled CT scans and MRIs every anniversary after my first SAH. In 2016, it was cancelled for some reason. It was rescheduled for 2018. I believe because of budget cuts. I urged my family doctor to book me one and it’s scheduled this December 2020. Would they have seen the coils falling off had they kept my scans? I guess we’ll never know. I wanted to share my story and hope it might help someone. I wish I advocated for myself more to have the yearly scans. Knowing what I know now, I will definitely fight for it. Thank you for reading my story and thank you for keeping up the site to support all of us. It means a lot! ❤️ Ann
  22. Hi, sorry to read that you have no motivation to get back to your pre SAH fitness routine. The effects of brain trauma are so varied. We have many members who have slowly rebuilt their stamina in an effort to regain their fitness. For some the motivation is there but the body and brain are unable to deal with high levels of physical exertion. One year on is still early in recovery terms. How are other factors in your life such as work, dealing with the family and coping with inter personal relationships with family, friends and work colleagues? Perhaps you could tell us more about your SAH in the Introduce Yourself Forum. Meantime this link will provide helpful reading on exercise post SAH. https://web.behindthegray.net/search/?&q=Exercising&search_and_or=or&sortby=relevancy Please keep in touch and don't hesitate to ask any questions as all our members have faced the challenges of living after SAH. Subs
  23. Hi Every one, I had a brain Aneurism on 8th august 2019, its been a year now and i have had a coil and stent put in place, i used to work out twice a day and jog 4 km a day now i cant find any motivation to jog or get back in to any form of exercise. is this normal ?
  24. Earlier
  25. Hi Carolyn, I didn't find out about the driving thing until my first appointment with the stroke nurse, well over a year after. Although I had a licence I wasn't feeling well enough to drive even by that point and so hadn't looked at the info here or realised I had to let the dvla know. Oops! They were nice about it and I did get my license back but I've lost all driving confidence (never high in the first place) and still haven't driven. It made job applications tricky but I now just say I don't have a licence! As for the fear/anxiety I definitely found the counselling help. It has given me ways to break out of the thought pattern that every headache is a new bleed but it is still there to some extent. I do get anxious when I get a bad headache out of nowhere in the same area that hurt at the time, I can handle headaches that build but the ones that sneak up on me unawares or that I wake up with do still cause a bit of panic, which of course increases the pain. This is also where the counselling came in useful. I have a mental checklist of things to check and should a certain threshold be reached I have a plan of action... The fatigue and mental woolliness have actually been harder the learn to live with, and I do still tend to over do things on some days and pay for it for a lot longer afterwards but I'm gradually learning to both pace myself & to not beat myself up when I over do it. Fluids, rest & listening to your body are essential but so is asking for help when it all gets too much. take care
  26. Hi Carolyn, Remember fluid is in foods too, so it doesn't necessarily mean just water. Tea and coffee, fruit juice,milk etc is ok. There is also water in melons and cucumber, fruit etc etc. Just drink small amounts regularly throughout the day, as well as taking in foods that contain water. Time is the great healer in this, and everyone is different in this regard. Resting well is as important as exercising well, but get the advice of your own doctors before embarking on any exercise regime. Doing what you want to do, and what you need to do, are sometimes very different things and doctor knows best! Also listen to your own body and stop if and when it tells you to! All great advice above, I hope it has helped you. Mental support is vital, and we all benefit from sharing experiences on here. If you are on your own, don't let things build up inside you, or let your imagination run away with itself. You (we) need to balance our own thoughts and you do that by talking to others who know and understand what you are going through. that is why this site is so valuable. You come across people who have the video and the T shirt, so to speak. If you feel you need to talk, come onto the site and say what you feel, tell your problem and someone will answer you. We just can't give medical advice that's all.
  27. Thanks Skippy i fully plan to live freely - I’ve no intention of being defined by this but I guess it’s early days although tbh I thought I’d be back to normal by now!!! Lol silly me! thanks for the inspiration and wise words x
  28. Fear it will happen again is perfectly normal . As for living more freely, well, that depends on your state of mind. My husband loves nothing better than to tell me that I recovered so well because I'm as stubborn as they come - I tried not to let it stop me doing the things I wanted to do. There were times when I paid for it after - exhaustion, fatigue, headaches etc, but I was determined that I was not going to let it stop me living my life. My aneurysms are referred to as "doo dabs" by my Dad and "monkey" by my daughter ( who was 9 at the time and is now 23). Three months after mine I went to a Pink concert - I'd paid for that ticket and no way was I going to miss out!!! Remember, we're all different - our bleeds are all different and our aftermaths are all different. I've been very lucky in so much that I live my life like I did before - the only thing I notice is that my memory, which was near on eidetic, is now no where near as good (to me, whilst others still think I have an amazing memory). Recovery is relative to you and cannot be compared to anyone else. Do what is best for you to recover and, above all, listen to your body and your brain. Macca (Mod on here) once said that it's not about grieving who/what you've lost and being limited by what you cannot do, it's about being grateful for surviving and forging a new you with new limits - very wise words.
  29. Oh no not harsh. Sound advice im not driving either!!
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