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Macca

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Everything posted by Macca

  1. Devastated by this news. My SAH was almost ten years ago. It was some time before I found out about this site and when I joined Win was one of the first people to greet me and she told me about singing and having a laugh. I didn't think much of it at first but then one day she said something very profound and it has stuck with me ever since. She told me there was always someone worse off than yourself, and rather than be miserable and look on the down side of life, I should look for new opportunities as the 'new you.' It didn't dawn on me until a couple of days later what she was really saying- my flash to bang time wasn't very good after my SAH - that she was indeed talking about herself, and she was basically telling me I should count myself lucky. I could still see my kids and grandkids grow, I could still walk and talk and look forward to going back to work, albeit in a reduced capacity, and so on. The more I thought about it, I thought that's one savvy, gutsy lady, what have I got to cry about. From that realisation day on, I always tell people to look on the bright side of life, have your sad moment, but then get back on your feet and take the world on and get the most out of life. That's what Win did for me - and she told me in that most British, English way - with classic, understated brilliance and simplicity that I only had to open my eyes to see. Thanks Win, RIP Sleep tight. Macca
  2. Hi jenni, What a great bloke you've got there! A good man! Brains are complex and need time above all else. You will find that testing will probably continue until they do find and answer, and if they don't then you should keep pushing for one! One thing you will find without visual stimulation is that your audio stimulation will become sharper because your brain will be working to make sense of what you hear, rather than both what you see and hear. I've no doubt it is hard to adapt, but maybe answers are just round the corner. Patience is what you must learn at the moment. Even after these tests they may not know, you say. But then again, they may know, or be nearer to knowing - and once they do that, they may be able to find a solution for you. So again, try to look on the positive side. And next time your partner decides to do the school drop say "Wait, I'll get my coat" and go with them. Then you can walk back like you usually do - just take an umbrella with you! Don't let a bit of rain put you off! You will still have taken your daughter to school. And your partner will be impressed too! When you feel negative ask your self what the positive side is, turn things around to your advantage. I realise it is difficult for you at the moment but it will be better for you if you can see your way to try and change your mindset a bit. Maybe that won't be overnight, but doing small things successfully will start to help build your confidence. When you have set the ball rolling, momentum will build. Macca
  3. Hi Jenni, You sound a little sad today, but you are looking at the negative side of events. Have a look at the positive side and it looks a lot brighter. 1) You survived 2) You are still with us 3) You gave birth to a beautiful daughter. She is better with you in her life than without and that will always be the case. 4) You are the apple of her eye 5) You haven't let anyone down 6) Four months after a SAH is no time at all - recovery can take quite a time 7) What's wrong with walking to school and cuddling on the sofa? A Nothing. Your daughter will appreciate those times when she grows up, probably more than she appears to now! Nothing makes you closer than cuddling your Mum! Fantastic. 8 Don't dwell on the past - concentrate on the future, after all, you can't turn the clock back 9) Turn your activities away from purely visual ones for the time being, think about learning another language which you can do audibly, or listening to audio books, or learning a musical instrument. What it takes is determination and a positive attitude. 10) get your daughter to join in and help you. You can teach each other - activities you can do together. 11) You are the partner and Mum you always were -it's just another problem you've encountered. One thing you learn about after SAH is patience and that your body needs time to repair itself as best it can and for your brain to re-route. I'm sure over time things will get better. In my own case it was over two years before I started to feel 'up' again after having been 'down' for so long. But I got there and you will too. 12) Start learning to know what you can do, what you can do with assistance and what you can't do without help. It will alter over time, but doing this will in itself be a challenge, will keep you occupied and will make you feel more positive about yourself. Lastly, talk to people and try not to dwell on 'that night.' People are more receptive, I find, to helping you if they can see you are trying to help yourself rather than just waiting for things to happen. Involve and talk to your partner too who will appreciate your positive attitude and reassure you. Get a coffee group going and get talking to friends, you will be amazed at how much they will want to help you but were afraid to ask. So make the first move, that's all it takes. Get this problem by the scruff of the neck and tell yourself it isn't going to beat you, because you have a daughter who wants to see her Mum be the best she can be whatever the problem, because to her, her Mum is Supermum. And that's the way it should be! She loves you, so be the best you can be, nobody can ask any more of anyone than to try their best. Be under no illusions though. It may take quite a time for improvements to filter through. The doctors will do what they can, but you have to play your part too. There will be steps forward and maybe a few back with a few tears. That's normal. Don't be afraid to cry or be frustrated. No-one says life is easy. Life changes in one way or another for all of us. It's how you deal with it going forward that counts. Just keep batting and you will get through. Good luck. With that little girl behind you and with your partner at your side, what better team could there possibly be!? Nobody is an island. Nobody gets through life alone. Everyone needs help - it's just that now it's your turn to need it, so ask and don't feel one bit guilty about it. I wish you well Jenni. We've all been there, We know how you feel and well done for being so candid about the way you feel and for sharing it with us. Now we can help, so keep posting. Best wishes. Macca
  4. Macca

    Janet's Story

    Hi Janet, Welcome to BTG. I hope I can give you some answers here but no miracle cures unfortunately! Firstly, two months out from a bleed is next to no time. Please don't underestimate what you have been through. It was a very serious event that happened to you. Yes, a bleed such as you describe is classed as a form of stroke and its classic sign is the thunderclap headache. Very often you won't have the classic stroke signs advertised in the NHS FAST adverts ie Face drooping on one side, Arms, can you lift them, Speech, is it slurred and Time - get you to the hospital asap. Sadly, they don't say H - headache of the thunderclap variety, get to hospital, bluelighted! In my opinion, they should because it is every bit as dangerous as any other kind of stroke. Another problem is that you can't see it - it is internal and you look normal to everyone else so they tend to underestimate it when you tell them! It's not like a broken leg where you can see the plastercast! So you have to communicate with everyone and tell them what's happened. It's like looking at a car without an engine - looks like a car, feels like a car, but it won't start because the engine is faulty! To answer your questions:- 1) How long does recovery take? Answer - it takes as long as it takes. Everyone is different, depending on how bad their bleed was, how strong you are, and how it affected you. Some recover very quickly and for others it can take months and years. In your case you've only just started to recover so don't beat yourself up about it. You could have a way to go yet. 2) Should you quit your P/T job? Only you could answer that in the fullness of time, but give yourself a chance to recover first. You've only just started. How about a phased return to see how you get on? Or a change of duties on a temporary basis whilst you get your strength back? 3) Hit the wall? That will happen, especially in the early days that you are now going through - that's your body telling you that you've had enough for one day - listen to it. You won't need anyone to tell you - your body, remarkably resilient though it is, will do it for you. Heed its advice and rest. If there is no improvement over time or if you are worried then see your doctors again. What you describe is not uncommon after a bleed - it's normal - we've mostly all been there. We know it isn't nice and can be frustrating but there's no quick path - you just have to be patient and listen to your body. Again, if you are worried, keep in contact with your doctors. 4) What caused it? We would all be rich if we knew the answer to that one! My surgeon told me to imagine I was riding a bike - one minute its all ok and then you suddenly, and unluckily, get a puncture. Some believe stress can play a part - but you can't measure that because its effects and causes are variable in everyone so it can't be measured - but avoid it where you can. One last piece of advice - because you can't see it - communicate, communicate, communicate. People can't help you if they don't know what's up with you - so tell them and keep on telling them. Good luck in your recovery! And be patient, the world will still be there when you are ready to face it! I've been there and got the T-shirt!
  5. Congratulations Julian! Glad you are progressing, still on 'the long and winding road.'
  6. Hey Tori, This is fabulous news of your Mum's progress. Progress has obviously been slow, but that's to be expected after a serious brain injury. You just have to stick with it and watch her go! Compared to what you were describing in what seems only a few weeks ago, your Mum has come on leaps and bounds - and long may it continue! So very pleased for you both - keep the faith and keep posting -- many of us are very interested in your Mum's progress. You must be so happy after the devastation you envisaged at the start. You are playing a massive part in her recovery and now you can see the results of your labours and your patience. Fantastic! Beautiful story and I, for one, am very happy for two beautiful people who so deserve the rewards you are now reaping. Best wishes, Macca
  7. Hi Shobs, That's good news and I would expect you will appreciate that time together all the more, for the rest of your life. Onwards and upwards now, although it could still be quite a long road to full recovery for Sandeep. Fatigue will be a problem, no doubt, and he will recover in his own time.
  8. Hi Chris, Congratulations. In my humble opinion, there is no such thing as a minor injury when it comes to brains, because it is at the core of everything we say and do. You have fought your battle with the right attitudes, with courage and with a positive outlook, so very well done in getting to this milestone.
  9. Nice one Shobs, Very pleased for you both. The real road to recovery starts now and you've go off to a good start! Hey, it's ok to cry. I've done it and we blokes aren't supposed to are we? Go right ahead, I expect it's more from relief than anything else and the new dawn has come!
  10. HI Kris (hope it's ok to call you that), If you are taking any tablets check the literature that comes with them to see if anything is mentioned about known side effects. That may do something to allay your fears. If there is nothing in the literature then check with your doctors to make sure all is ok. Better to be safe than sorry. It may also be that you are noticing things more, that previously you would have paid no attention to, because of what happened to you. Safety first, though, if in doubt get checked over. Hope you are ok.
  11. Hi Clara, Welcome to BTG. Slow down a bit and don't beat yourself up about this. Your brain has undergone a very serious event and it is recovering and it needs time to heal. What you describe is very natural, with your emotions all over the place. This isn't a male/female thing - it is a SAH thing. I felt exactly the same as you do now and it does take time to get over it. Perhaps you can start talking to one person and ask them to relay the message that you get very tired very quickly and that you need to recover at your own pace. Set a time limit for that call and then stick to it. Just let them know that you re ok but still very ill and you need time and space to get back on your feet. They will understand. From their point of view, they can't see any injury or plaster-cast so to them you probably look normal, and it is a persistent problem that we all encounter but you need to keep focus on getting well. Your true friends will understand, but it can be a long process. Change has come on suddenly and you may need to make changes to your lifestyle to adapt to the new you. Try to look at it as new opportunities, rather than a bit of you that has died. It hasn't died - it has just changed. Try not to compare yourself with yesteryear. You will find new and different ways of doing things and some will be better than before. You might not think that yet, but in time, you will. I am 61 now - I used to play football, I can't now, but look on those days with fondness and am grateful that I had them. I don't look on them as a part of me that has died, I look on them with pride and look forwards to what I can do now, not what I could do then. I think that is the only way to come to terms with what has happened to you. It just takes a bit of getting used to because the change happened to you so suddenly. It is still early days yet for you, very early days, in fact, and you never know, you may get back over time, to something like the person you were before. But people and things evolve over periods of time. It doesn't happen overnight for any of us and you will need to go with the flow for some time yet. Look after yourself for now - don't worry about everyone else. Now is a time to be a little bit selfish to enable yourself to get back on your feet. Your mates will still be there when you are up to it and I'm sure there will be lots of gossip to catch up on, but only when the time is right for you! Embrace it and look forwards, not back, if you can.
  12. Hi Dotty, Welcome to BTG. As the others have said this is so very, very early in recovery terms. Many of us were in the condition you describe and yes, it is very worrying not see the 'old Dad' in there when you go to see him. However, he is still in there, it's just his brain is now starting to re-wire itself having suffered the indignity of a bleed. It is now starting to repair itself. What you have is a spilled box of Milk Tray where all the chocolates have fallen out of the tray into the carrier bag. All the parts are still there but it will just take time to get all the chocolates back into their rightful places in the tray. He needs to recover at his own pace, not the one you might want him to. What he needs from you is to be there for him, to support him when he needs it, and to give him the space and time to recover. It can be a slow process and everyone goes at different rates. He will, in time, need to make some changes to his life and routine. The issue is that change has been thrust upon you abruptly instead of gradually as it does when you age. You need to be flexible in your approach now to deal with those changes and re-build a quality lifestyle. It can be done, but having the right attitude to it from the start is key to its eventual success. We are here to offer our help and support as much as we are able. let us know how you get on and keep in touch. I wish you all well. Macca
  13. Many congratulations Shobs and Sandeep! May you have many more anniversaries and continue to improve daily! Good luck for next Monday!
  14. Shobs, Good luck with Sandeep's procedure. There is every reason for optimism and we are here for you should you need to let off steam!
  15. Hi Margaret, Yes I suffer this with intensive exercise. I found the only way is to change what I do. I now exercise less strenuously but for longer periods. Have a break and then do a bit more. Intense exercise is not an option anymore for me. I am seven years out and I became disorientated during sessions, and it felt as though someone was popping bubble wrap under my scalp and I still get that now if I do too much. I use it as my signal to stop. If you do the same as you have been doing, you'll get the same results, so, as you rightly point out, you need to change it and manage it. You might need to do this by trial and error until you find something that works for you.
  16. I think I'd go and get another opinion form somewhere completely independent if I were you. Clearly something has changed or you wouldn't have a problem. Maybe it's from the bleed, maybe it isn't - until they identify what has happened and explored the possibilities, they won't be able to say anything. Speculation won't help you - they need to diagnose you and that means testing - your eyes and the products you have been using! Good luck, let us know how you get on. Sorry for the late reply, I have been on holiday!
  17. Macca

    9 months post SAH

    Hi Kathie, Everyone is different and 9 months is not unusual. If you do go back to work, discuss a phased return. Take regular breaks, stay hydrated and rest when you need to. If you can delegate work, then do so. Whatever you do, don't bluff, they will see straight through it. Think about going part-time or reducing hours, at least temporarily. If, and it's a big if, it is too much, then analyse what you are doing and think about changing your job. Stress is the last thing you need right now! Don't forget, this is your brain you are talking about, it is at the centre of everything you do. The symptoms you describe are very common amongst us survivors. You can get round them to a certain extent but you need to accept that change may be inevitable. Changing your job is not the end of the world - in fact it might just provide the fillip you need to push on and enjoy the rest of your life. Put 'Back to Work' in the search box and have a look at that thread for lots more information. I hope all goes well for you. Macca
  18. Hi Linda, Welcome to BTG! yes we are British but pain and suffering has no barriers - neither does caring and compassion as is described so eloquently above by Kris. I had the dreaded thunderclap headache 7 years ago today and I'm still here, so that should be some encouragement for you. I am now 62 years old! My job was very stressful and I went back to work after 6 months. I decided that I'd had enough three years later and took early retirement - best decision I ever made! As you're in Oz, don't worry if answers take a little time to appear - the time differences are enormous between here and you and the USA. Headaches are common after SAH but none of them are ever as bad as the 'thunderclap' one. Seek professional help if you are worried but congratulations - you are a survivor! Look at your glass as half full, not half empty. Look for the new opportunities that open for you, not behind to the ones that have closed. Life will be what you make of it. Yes, you've taken a punch, but get up from the floor and punch back! - when you're ready to, that is! Welcome aboard! Macca
  19. I haven't had soreness in or behind my eyes, but I have had the scalp tingling to which you refer. It settled down with the passage of time. I did report it to my doctors but, in my case, they said it was fairly normal after brain injury but that I was right to have asked the question. It took ages to settle down and scared me for a while until I got used to it. Brain injuries are notorious for taking a very long time to heal but you are right to ask questions as your condition currently is so very different to what you experienced pre-operation. Go ahead and ask your questions of your doctors, that's what they are there for. The only daft question is the one you don't ask, so don't be shy, and you don't want to become stressed by worrying about 'what ifs.' I would just say that everyone is different and, as you have other sensations as well, you should definitely get professional medical advice. I, too, experienced the tingling sensations when I was tired and it receded as my energy levels came back up or after sleeping. Over time, these sensations have all but disappeared unless I am exhausted, but even so they are nowhere near the intensity they were when I first had them. Mention your tingling sensations to the people who treated you as ordinary GP's don't seem to have the depth of knowledge to give you the answers you want and need. They may refer you to your optician. It is possible your optician may further refer you to a 'neuro-opthalmologist' for a check to be done. about that specific problem. If you see your doctor's and your opticians, make sure the two departments speak to each other and are aware of what the other is doing so they can take it into account when making their decisions about treatment, if any. Good luck and please let us know how you get on. Best wishes, Macca
  20. Skippy is right, you should seek professional help with this. It sounds like a defensive mechanism and he is frightened of swallowing. Perhaps you should talk about the possibility of blended food intake rather than solids. Have the doctors and nurses not noticed this, and why haven't they done something about it? I don't know how speech pathology can tell about swallowing, but I would venture that a chat with the consultant would be more productive. Why haven't the speech people been communicating with the nursing team and reporting back what they have found? I would start asking lots of questions if I were you. Don't leave them to sort everything out or nothing will get done. If it takes you to bring all the different departments together then so be it. They are all humans capable of mistakes as well as great things, so if you see something that isn't right, speak up. Don't be shy, get in there, it's what doctors are for and the health and safety of your husband is paramount. Hopefully, the pocketing isn't producing a choking hazard. The sooner you face up to the problem and get it sorted the better. Let us know how you get on.
  21. Good luck Andrea, my thoughts are with you.
  22. Hi Amanda, Welcome to BTG! The 'glad' part is you're still here, still smiling, still battling. Well done! Surviving a SAH is traumatic and can trigger very strong emotions in the early days afterwards, so don't beat yourself up about that. Instead, congratulate yourself on surviving and look onwards and upwards. After all, what else can life throw at you? Don't look back and be anxious about what has happened. Look to the future as a bagful of new opportunities, be thankful you came out of a bad time and be excited for the new future you have in front of you. Its like you've had your very own 'Dunkirk.' You weren't quite defeated and you've lived to fight another day, just like the British army, all those years ago! Doctors are humans and they can make mistakes, just like anyone else - but you survived it - and that has to be a positive omen for you, doesn't it? Do as Chris says, have a look round the site, click on the topic headings (Ie 'Subarachnoid Haemorrhage Discussion') and loads of subjects will come up. You can do that for each of the main headings and all the subjects you can think of have probably been discussed before to one degree or another. If it's all too much for you, just ask the question and someone will answer. Nice to have you aboard. Have you considered buying a lottery ticket? With your luck, the jackpot can't be too far away, surely? Best wishes, Macca
  23. Sammy Anne - if your daughter needs help then find her some. Even so, the very best support for her is a strong and stable Mum, upon whom she knows she can rely. So, you have to be there for her come what may. That's not too much for a daughter to expect of her Mum. Make sure you are proactive in finding some hands on support for yourself too! Stay strong - it will be worth it in the long run. Good luck. Macca
  24. Hi Josie, Lots of us have been on this journey. It is surprising how emotional you can feel when you need to go back to the hospital. When I first went back, I was ok until I got into the hospital car park and then I inexplicably burst into tears. I didn't know why, but it was the fear of going back in - it seemed totally irrational at the time. When I went in however, it was like meeting old friends and everything was done in a matter of fact way that caused me no alarm whatsoever. I was frightened of my own shadow without any rhyme or reason. When I came out I felt such a fool, but on reflection, I reversed that thought. I thought, what a hero, I did it, I dealt with it. I had let my fears get the better of me because I had let them, I hadn't controlled them, and I hadn't confided in anybody. That was the foolish bit for me. I should have talked to someone before I went in. I had let reality fly out of the window and I needed someone to put me back on the path of reality with some balance of reason. I had needed to stay in control and the way to do that was by communicating. I was ok and I have never looked back. Go forward with confidence. The people dealing with you know what they are doing. You are worried because you have unanswered questions in your head. So get them out into the open - ask them out loud and get yourself some answers. If you let the 'what if's' get to you, you'll stress yourself, so keep them to a minimum by asking your questions and by speaking to people like us who have been there before you! Good luck Macca
  25. Hi Sammy Anne. I am so sad to learn of your continued troubles. First thing - look at the literature that comes with the drugs you have been prescribed. Look at what they treat. The look at what they don't treat. Then look at their known side effects. Do they relate to what you are feeling. Before you take them get a second opinion from another doctor, and make sure they are aware of your SAH, your current feelings, headaches and any other medication you are on etc, so they can take all of your situation and symptoms and tablet interactions into account. They have to be aware of everything to give them a chance to make the right decision. However, if you are aware yourself of what the drugs can and can't do, at least you can give the doctor in question the right facts in relation to your situation , headaches and SAH fears. Of course, you need to do this when you are not so upset, so that the correct diagnosis can be made. You seem to be lacking some 'on hand' support and, if you can, it will be important for you to find some either through family, friends, or counselling group that you can trust implicitly. Have you no UK routes you can exploit to your advantage? You cannot give up on your daughter, she needs you now more than ever, and it is important for her ongoing development that she has the love, support and ongoing strength of her mother, you, to ensure she grows up into healthy, well balanced individual. Stress is often associated with risks of SAH but no-one can say for certain because you can't measure stress - it is different in every individual - but to be less stressed than you are now has to be of benefit to your general all round health, in my opinion . You must stay in touch with your doctors and, with no disrespect to your psychiatrist, - check with your doctors that your tablets are ok to take before you do so. We can't tell you because we are not doctors - or even medical professionals - so take proper advice. Take care Sammy Anne, we are here for you to let off steam when you need it. Good luck. Macca
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