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Macca

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Everything posted by Macca

  1. Macca

    Myra

    Hi Myra, Welcome to BTG. Lots of good advice from the others above. Just a thought - have you ever considered putting your new-found knowledge to good use on a ward where people are recovering from brain injuries are? A nurse, like you, who really does understand what it feels like and has first hand knowledge of recovery issues would be like finding gold dust on the Oregon Trail. Nurses with such knowledge are, indeed, rare and the sympathy/empathy you can provide will be invaluable to those patients. You could also advise them about BTG where support is always available, not just for the patients but their carers too. I hope you are recovering well and continue to make progress. Please don't go too fast, too soon. Progress is progress no matter what the pace. Best wishes, Macca
  2. Hi Cassandra, First, welcome to BTG! My aneurysm was 6.5 years ago now, at the age of 53, and was a ruptured 'left anterior communicating artery' that was irregularly shaped and difficult therefore to coil - but luckily for me they finally managed it! I was in a coma for a week, they had three goes at a lumbar puncture, calling in a top consultant to have a 'last go.' I'm still here. My pituitary gland was damaged whilst they repaired me. The gland stopped producing growth hormone and as a result left me with chronic fatigue. I was given various scans and blood tests and tests for hormones and eventually after nearly three years they identified this deficiency. In the meantime, I was suffering with chronic fatigue, sleeping up to sixteen hours a day and when I was awake I just wanted to go back to sleep again and felt I had no strength in my muscles. I am now on HRT, (yes you heard right, a bloke on HRT - remember the song 'Man I feel like a Woman' by Shania Twain?). I have daily injections of Growth Hormone (a substance that athletes would be banned for). In my case though, the improvement in my quality of life is immeasurable. I still have fatigue, so it isn't the complete answer, but it isn't nearly as bad as it was - but I'm still here and my recovery is probably around 95%, so I am grateful for that - after all, it could have gone the other way. I also still have short-term memory loss problems, but I have learned to manage these. So, the way I look at it now is that life is for living and every day is a bonus, the sun still comes up, and there are people far worse off than me. It doesn't rid me of my problems, but it does set them in context. Time is the biggest healer. Remember that the brain is incredibly complicated (although my wife disputes that in my case sometimes!) and it is at the centre of everything you do. It has taken an enormous knock but it is still functioning well and, by your own realisation, is improving incrementally. That is progress and is brilliant. Your rationale, in your post above is spot on, so no problems there - that's good, isn't it? Most of us are improving, years down the line, at different rates depending on our own bodily constitutions and the severity of the problems we encountered. There is no single answer, but we have hope and we have belief. We also have records of improvements over time, as you are finding out now. Yes, it can be unpleasant whilst we endure, but for every knock we take, the flip side is that there is also an opportunity. That is to look at the problem in a different way, to find a new way of beating it, to re-assess our current values and way of doing things. Try not to read too many of those academic papers. Usually, I find, they are very narrow in scope, leave you dissatisfied and with a whole new range of other questions. Often, you have to look at what they don't say rather than what they do. Their sample audiences also vary enormously (in terms of age, gender, ethnicity, socio-economic groupings and so forth, and are quite small.). So, keep your chin up, keep battling and keep challenging your doctors for answers. Don't be shy, it's what they are there for. Please keep us posted on our progress and if you've got a problem, we will help you if we can - we just can't answer medical questions. because we are not doctors, which is why I said what I did, above. I wish you well, Macca
  3. Hi Renfield, I want you to go back and read your introduction post again. Why? Well, because everything you describe is progress after being more ill than you at first realised. I suspect that because you are on your own you are just not recognising it as such. That is not a criticism, just an observation. Whilst I respect and understand your wish not to mix with people too much at the moment, you have no one to bounce your own thoughts and observations off. They would probably tell you how much you have come on since your operation. Let me explain. 1) You identified a problem and went to get it sorted - well done! It obviously needed seeing to. 2) You came home 3) your scabs from your operation have almost gone. 4) Your sideburn is growing to cover the evidence of the operation 5) You don't have to resort to pain relief - or rarely, are the times between getting longer? I bet they are. 6) All your faculties are in tact - a big bonus after a SAH, believe me! 7) You are doing several chores/activities a day You are about to start doing short walks, that's progress. All of these things are small steps on the recovery road, things that many of us have been through ourselves. When you do start driving again how about doing short drives until you can cope with longer? When you have to go to the mainland, instead of thinking of it as a travel chore, why don't you think of it as a short break, where you have to take in a visit to the hospital on your journey to being completely well again. I am not trying to be patronising, just trying to get you to think about it in a different way that helps you. So, don't beat yourself up, it sounds like you are doing just great, but there are no instant fixes. Time is the great healer here and the thoughts you are having about doing more things shows that you are not apathetic about anything. Just the opposite in fact. Look at what you are not saying (ie read between the lines), as well as what you are saying. Best wishes, Let us know how you get on - and welcome to BTG by the way! Macca
  4. Hi Suzanne, Welcome to BTG. Your husband returned to work remarkably quickly. I returned after six months on a phased return but it was still too soon. I too suffered from fatigue, in fact I still do but not to such an extent. My SAH was six years ago. Is it time you both took a holiday in the sun to communicate, re-charge and relax? Tell him how you feel and let him tell you how he feels. It is important that you both understand the others position and feelings, so please be honest with each other. Can you get him to read this thread you have opened and plan your way through this together with love and support on both sides? After all, his SAH affects both of you and those around you. It sounds like he went straight back into it full time, almost as if nothing had changed, because that is the way he wanted it to be. He has to acknowledge that what happened was very serious and treat the condition with the respect it deserves because although he is back up on his feet, he is still undergoing the physical trauma associated with a SAH. Think of it as an earthquake followed by the aftershocks. You are far better working with the condition than against it. Only then will he make progress and really get back to something like what he considers 'normal.' If you pretend nothing happened, your body has its own way of telling you that what you are doing now is too much and it will seem like taking two steps back rather than one forward. This is not a criticism, just a person speaking with the experience of having lived through a similar situation and having to sit down and re-appraise life when I really didn't want to accept there was anything wrong. First, if I was you, I would persuade your husband to go back to your consultant and ask to check that there is nothing wrong. Second, I would re-appraise my lifestyle, including the type of work, number of hours worked ie; whether I could reduce my hours, have more regular breaks, work part - time, delegate more to others and so forth. Third, are there any bad habits to cut down on, drinking, smoking, late nights etc. Perhaps go to bed an hour earlier so your husband gets a good night's sleep, especially if working the next day. Resting well is as important as eating well and embracing a generally healthy life-style. Work to live, not live to work! I hope this helps. Please let us know how you get on. Macca
  5. You're welcome! Well done Maya for going to the university. It gives you a different focus from your medical issues. Hopefully you will get some positive news after your MRI and from there you will be able to begin to move forwards. Try not to worry too much. It's a bit like the build up to Christmas. It's all about anticipation and the build up, then before you know it, it has been and gone and then you think "What was all the fuss about?" Good luck - and keep us posted! Macca
  6. Glad you have come through this, and with such optimism too. It's a tough thing we've all been through and we all go at our own pace. In this world of instant fixes, it is important to realise that this new technological world is an illusion to some extent and that when it comes to real people, patience and resilience are what is required to emerge and progress to greater things. Well done and thanks for keeping us all updated. You can enjoy Christmas in a much more relaxed and upbeat fashion! Wonderful! Best wishes, Macca
  7. Fiona, I took 6 months off work and even then it was too soon to go back and I ended up going off again after a phased return to work. Going full time again became too much for me and I ended up having to go off. Your body will tell you, whether you want it to or not, whether you can cope, but if you go back a phased return would be advisable for as long as you can make it. Don't try to do too much too soon, because your body will tell you. Tell your HR about SAH and it's effects. Very often OH and HR departments know very little because it is a relatively rare condition. So you tell them. If your local hospital has any leaflets about SAH, pick them up and show them. Good luck, Macca
  8. Maya, look forwards not back. Control what you can control, and the rest will take care of itself. Take medical advice re your aneurysm and plan life around the advice you are given. Is the literature you read from a reliable source? Does it cover people with your type of aneurysm, does it cover a specific age group or gender, or social group? Often these things are never as straightforward as they at first may seem. The person to listen to is your consultant. Next time you see him/her have a list of pre-prepared questions you want answering. It is too easy, when you are on your own, to see something and let your imagination run away with itself because what you have seen, or read, or heard about, seems to confirm what you were already thinking. More often than not it isn't like that at all, you just interpreted it that way. You will often find the focus of academic studies like these is very narrow and often they fail to take into account external influences. Why don't you discuss it with a friend and see what they think? They might provide some balance. If it really worries you then mention it to your consultant next time you go. I've never heard of coughing triggering an aneurysm but then, before it happened to me, I hadn't even heard of an aneurysm! What I do know is that stress is never good for you, whether you have an aneurysm or not, so try to minimise that by not worrying too much. Concentrate on those children of yours and let them see a happy Mum who is doing her best to support them. Your consultant will do his/her best for you so there is every reason to be optimistic. I don't think any aneurysm is easy to deal with but success rates continue to improve, we are all living proof of that. Try to find a different focus, for at least some of the time, to provide some relief for both yourself and your children. Yes, it is a difficult time but you will get through it eventually. Unfortunately there are never instant answers, but there is light at the end of the tunnel and you will emerge, I am sure. I wish you well, Macca
  9. Hi Fiona, Welcome to BTG! Great advice from Clare. The only people who can give you real medical advice are the people who treated you. However, I would say please write down the questions you want answering so that you do not forget any. Write the answers down if you can at the time or as soon as possible afterwards. One of the questions you might want to ask is how long you should take off work and then get your GP to support you. Once you have this, you can then enter meaningful discussions with your HR people. You can also discuss with your GP about driving and then keep DVLA informed and they will assist you and advise you what you need to do. I did this and they were very helpful. I ended up not driving for six months but they didn't actually revoke or suspend my licence. Don't forget that getting into a car is your responsibility, not DVLA's. So the risk is yours, not theirs. Also think about contacting your insurance company as if you do not declare what has happened to you the insurance might be invalidated, landing you in hot water if you were to be involved in an accident. Good luck, Macca
  10. Hi Maya, I graduated with my degree when I was 47 years old - you sound like a mere youngster to me! You could try a couple of things without leaving your course. 1) You could take a break from it and return to it later but of course you need to let the University know your reasons but, in my experience, they are always willing to help rather than lose you altogether. You could then judge how well your recovery is going before carrying on with your studies. 2) Or they could extend the time limits for essays, or the course as a whole, so that you are not under so much pressure. 3) They could also give you more one to one tuition at certain times to help you through the difficult bits of your course. 4) Or you could make it a part time course or maybe a distance learning course if it is allowed. So there are options, but you really need to talk them over with the university to see which would suit you best. I was bringing up my two boys alone at the time when I did mine and my mother had Alzheimer's too, which didn't make life any easier. In any event, if you do decide to carry on, you will need to try and manage your time in the most efficient way you can and seek the help of friends and relatives to help with domestic issues, if they can. So there is hope! Enjoy your kids, and if they are of the right age, try getting them to look up references for you in books, perhaps by putting a post it note in to mark the page, as part of a game to help mummy get her degree. Make them feel part of it, part of you. Not only will they help but they may learn something, not academically possibly, but about the determination, dedication and application needed to succeed. What a wonderful example you will set to them. Reward them for doing it, even if they are getting it wrong sometimes, they are trying! However, if you feel it is just too much then leave - your children need you in the best possible health and that is so much more important than any degree. If you keep 'thinking' as you put it, things can seem worse than they really are, so when you are in that mode, come on here and tell us your problem and your feelings - a problem shared is a problem halved. Some of us on here have degrees, not in your subject perhaps, but we know what it takes to get through one, so we can try and help you and give support! Best wishes, let us know how you get on and what you decide, Macca
  11. Hi Deb, Half the battle is accepting you have a problem and you have done that, so well done! The old you is still in there somewhere, it's just that your brain has taken a bit of a knock and it needs to kind of re-wire itself to get you back to somewhere near your pre-SAH state. The thing is, it won't happen in an instant because your brain isn't a light switch that you can turn on and off. It takes time. I had many of the same problems you say you are having now. I am six years down the line. I still have some short term memory problems and I still write things down, but I don't have to do it nearly as much now as I used to. So it can get better over time. Well done for having notes around the house. I use them too, but I also carry a notebook around with me. You just have to remember to keep looking at it and the book will tell you what you need to remember. As for driving, it is your responsibility to determine if you are fit to drive. If you don't think you are you shouldn't really need a doctor to tell you that, or an optician, you should just not drive until you get yourself checked out. You should also advise DVLA of your position and advise your insurance company because you may invalidate your insurance if you drive whilst unfit to do so. It simply isn't worth the risk, in a number of ways. Talking with someone is one way to alleviate some of your thoughts. When you are on your own you can tend to let your mind imagine the problem is worse than it really is, but a problem shared is a problem halved. I've been there. Talking helps to keep you grounded and we can and will help you there if you let us. That is why we are here. You will regain your interests, you just can't see that yet. What you need to see is progress in your recovery. Why don't you keep a diary, and over time you will see the progress you are making and get a family member to keep one too where they detail what they can see from their point of view about you. It will record your progress and will be a confidence booster as well as provide the incentive to keep on going to keep on improving. It can seem like an arduous path, but you have come through it, and you are in the early stages of your recovery. It was a serious thing that happened to you so don't beat yourself up about things seeming a little different. Change was thrust upon you unexpectedly. Recovery is gradual just like if you had broken a leg. It's how you deal with it and where you end up that counts. I wish you good luck and please keep in touch and let us know how you are getting on. Many of the recovery stories on this site are so inspirational - you can be too. Just keep going no matter how quickly or slowly, the important thing is that you keep going - every journey starts with that single step! Best wishes, Macca
  12. Hi Graham, Welcome to BTG! What you describe is well within the experiences of a SAH. What you will learn is that your body has a way of telling you when it has had enough, at whatever time of day that may be. Listen to it. Your body has been through a terrible experience and you should never underestimate the severity of the battle it, and you, have been through. The degree of recovery varies from person to person but it is often a long road to full recovery - or as near as you can get to it. The latter may become your new 'normal.' Learn to do what you can, albeit more slowly and differently, depending on how you feel. We can't answer medical questions because we are not doctors, so if you need that go back to the people who treated you. However, you will find plenty of support here and people who have lived through the same experience, can relate to you their own experiences and how it affected them. You will see that you are not alone. Have a look through the various threads on here and you will see a vast array of topics unavailable elsewhere. Any time you want help or support we are here, just get on here and say what you want - there is usually someone who knows something - or in the words of a famous advert 'knows a man who can.' As for your work, I would say so early in your recovery that 20 -25 hours is plenty and judging by others experience is very good indeed. Just don't overdo it or your body will soon tell you it isn't on! Once again, welcome to the group and let us know how you get on. Good luck! Macca
  13. Hi Luke, I really hope things work out ok for you and your family. You really seem to be going through a tough time. Fingers and toes crossed for you. Try and stay as positive as you can. Your parents couldn't wish for better support than what you are currently giving and I am sure they are immensely proud of you. If you need to let off steam then come on here, we're all here when you want us. Macca
  14. Fabulous Louise, Well done on getting this far, thank you for all your encouragement to me since I joined . Well, just thank you for being you. Have a wonderful day! Macca
  15. Brilliant Greg! This article articulates what so many find difficult to put into words for themselves. I've saved it and am going to laminate it and pin it to my home notice board - it's that good in my opinion. Well done and thank you! Macca
  16. Brilliant Daff! I relate to much of this. How many of us take the time out to take stock? Not many I guess. Once we have found a 'safe' path it is easy to stay on it and not take risks or push boundaries because of the mental strain a SAH inflicts upon us in wanting to hold on to life and get back to as near 'normal' as possible (by that I mean what was normal before SAH). It is important that we recognise the new 'normal' post SAH. The change was imposed suddenly and without warning, but when you analyse it, we are all getting older, wiser and weaker and we have to adapt to change whether we like it or not. I am 60 now. I cannot run as fast I used to when I was 20. I walk now rather than run but I still get there. If I don't feel like walking I get the bus or a taxi but I still get there. Change happens, it's how we deal with it that counts. You are so right that it is important that we rest properly. Some days I feel like I can go on forever, some days I feel I struggle to get out of bed and it is incredibly frustrating. That's how I am these days, but I am walking farther now than I have done in years and this represents progress for me. When taking stock, it is important, I feel, to take account of not only the physical things I am capable of but also the mental aspects, such as stress, irritability, frustration, depression, confusion and the like. Well done Daff, an inspirational post and thank you for sharing it. I hope others take heart from it and use it to make their own assessments of their individual circumstances. Macca
  17. Hi Teresa, Short term memory problems are common with SAH. There is no easy way except there are ways of dealing with it. The problem is that there are different degrees of memory loss and it affects different people in different ways. I don't know of therapies, as such, but the following have helped me: 1) Keep a notebook/diary of things you want to remember. Keep looking at it on a regular basis and make notes regularly (you cannot be lazy about this). 2) Keep repeating things in your head until he eventually learns it and in effect, it enters long term memory and is no longer a problem. 3) Use calendar function/set reminders with notes on mobile phone or laptops. The only thing you need to remember then is to look at it every morning and through the day and it tells you what is required. (You will strike a balance of how much to write) 4) Word association. By this the associated word acts as a trigger for what you want to remember. I generally find that I have remembered what I wanted to remember when I have the right trigger for the required memory. At the beginning, not only could I not remember things, I couldn't remember having the conversation about the matter in hand, but over time, although still not perfect, I have got better. I find that for the things you can't remember, you have to identify the problem (what it is you can't remember), and then it is like anything else in life, you have to try and give it more attention until it sticks. That is not a criticism, just a fact. It can be incredibly frustrating at times. You just have to find ways of coping and the above methods have all worked for me to varying degrees at varying times. Making notes and looking at them every single morning, though, is a habit he should get into and then it becomes second nature. I still do it now. It's just an edited way of doing what he always did, it's just that now he needs to do it more often (for instance when revising for exams at school). Hope this helps! Macca
  18. Hi Irene, Remember that resting when your body tells you to is important in your progress to getting as well as you can be. You know your body better than anybody else. Unfortunately, we all have some people around us that think we are ok because they can't see any physical injury but over time you get used to that. You just need to battle on and try and ignore unhelpful comments. It happens to us all but if you need support then come on here and tell us about it and we will do our best to help. There are subjects on here that deal with this kind of issue, though I can't remember for the life of me what they are called. Maybe one of the others can. Keep your head up and be proud of the progress you have made so far. Remember that it is their problem, not yours. You are who you are and just because you maybe do things a little differently now is a change they'll just have to get used to! Change happens, it's how you deal with it that counts. They need to learn that too! Good luck and I look forward to hearing more from you soon. Macca
  19. Hi, I was coiled after my SAH 1/9/2010. I had a bleed in the left anterior communicating artery and it was said to be a larger than usual aneurysm and irregularly shaped as well. At the time, they were worried the coiling might not last and that they would have to clip me instead. However the coils held and clipping has not been necessary. I was seen every quarter for the first couple of years and now I am still seen every six months. I think they are just reassuring themselves as much as me that there is a risk but they are still monitoring it. I don't worry about it now as I am more than five years out and whatever will be will be, as they say. Whatever happens at least you know people are trying their best to help you. There are many places around the world where it isn't the case and I am thankful that our country at least gives us a chance. I have had a remarkable recovery and although there are still some problems they are but nothing compared to the wonderful care I received and continue to receive at the hands of our superb NHS at Salford Royal (Hope) Hospital. Good luck in your recovery Macca
  20. Hi Julie, First - stop beating yourself up about this. At the moment you have to live with 'what is,' not 'what was' or 'what might be.' Sounds like an appalling mix up with the hospital and you should complain about that in due course because it isn't acceptable. Nevertheless you can do that later. The first thing is to get yourself sorted. Yes, it is frustrating when things are outside your control, so it is a waste of time and effort to get mad about them and it achieves very little, if anything. Instead, try and focus on what you can control and influence. Your hubby is on your side so please don't take it out on him! You will have to see how things are when you come out after your op - and remember, results aren't instantaneous in many cases - recovery is an individual thing and happens in its own time, not necessarily when we want it to. So be patient (no pun intended) and let time and healing take their own course. Many of us have suffered the same or similar types of situation you describe - and we are still here, so there is hope. What you have now is your current 'normal.' Everything you add on after your operation is a bonus, so please be positive, there is much to look forward to, as long as you don't dwell in the past too much! I wish you well - good luck and please let us know how you get on after your operation! Macca
  21. Happy anni-versa Weedrea, onwards and upwards. Congratulations! Macca
  22. Hi Trace, Welcome to BTG. Lots of the things that trouble you sound very familiar and there's lots of good advice from the people above. However the first thing, in my opinion, is that you have to accept that change has happened, it's how you deal with it that counts. Second, you have to find a series of coping mechanisms to help you respond and adapt to that change. I suggest the following only because they appear to relate to the problems you mention: 1 Headaches, get yourself checked out again, go back to where you were treated, not your local doctor (who will usually be less experienced at treating cases such as yours) 2 Go and see an optician with regard to your eye problems to check for any underlying sight problems 3 Think about investing in a quality pair of sunglasses, not so much to be responsive to the sunlight but to reduce glare, which can even happen on cloudy days (maybe reactolite types, for instance - discuss with optician?) 4 Break down your daily tasks into manageable chunks with regular breaks, particularly where concentration is required. 5 When you mix up words, stop, take a breather and try again. If still faltering, try and say it a different way or write it down and read it out loud. 6 When you are over tired - rest - that is what your body is telling you to do, so listen to it. 7 When you have balance issues, use a walking stick, sit on a wall or a bench for a couple of minutes - that's what I do. However, you have to find your own solutions by trial and error to find what works best for you. One of the frustrating things about our condition is that although many things are the same type of problem, they are all different in terms of degree and the context within which they affect our daily lives and those around us. Good luck Macca
  23. For some reason, barometric pressure does seem to affect a number of us. Flying less so presumably because of pressurised cabins but you don't have that travelling overland. So yes get it checked if only to take the 'I wonder if........' away! Good luck Macca
  24. Hi Richard, Welcome to BTG. You are a rare one indeed - a surgeon with a real understanding now of what happens to SAH sufferers. Real experience is so unbelievably valuable for you in your profession.I hope you make a real contribution to your colleagues understanding. That said, SAH is no respecter of class or profession and I hope you are making real progress in your recovery both for yourself and for your family. I, too, was fairly fit before this happened to me. On leaving school I played football professionally and then semi professionally until I was knocking on a bit and then carried on some more after that. I was playing football the night before my SAH at the age of 54. I had a high powered job, very stressful, much travelling involved. I never smoked either. I never thought 'why me?', I always thought 'This is me now I've just got to get up and get on with it,' little realising how difficult it would be. Fatigue is common, searching for answers is too! Welcome to the group, I hope you find what you are looking for. I hope your enhanced position (compared to ours) as a surgeon gives you valuable insight that helps you, your patients and dare I say us from time to time on this group if you can find the time and the inclination. I hope too that the views of people on this site can improve your knowledge too, not of the clinical realities but of the emotional impacts and social impacts on patients and their families. A very warm welcome to you - don't go too fast too soon! Recover well and go at your own pace. Please stay in touch with us. Macca
  25. Hi Clare, You know what? This will have done you a power of good. Why?:- 1) You got to talk about your condition face to face, 2) You will have received answers to some of your questions, 3) You recognised, in a safe environment, that your body needs more recovery time, 4) You got your job responsibilities in perspective, 5) You came out at the other end still standing, if a little tired, 6) You will get more answers in future sessions, (more manageable chunks than just one big long session) 7) At the end of the day, the moon comes out and the stars still shine - just like you - and tomorrow, again like you - it will be sunny. The world will still be here. 8)Chin up - look the world in the eye and say "Go on - what can you throw at me today that I can bat back?" 9) Don't just go through the tests - use them for your own benefit - analyse them, list and ask questions, challenge your interviewer, turn things round and get the most you can out of the sessions 10) More information received means more understanding and that, in turn, means more acceptance of what you need to do to continue getting the most out of life _consider asking for copies of any reports that are made so you can look at them when you have more time to take them in. Well done, I think it's a fabulous opportunity for you Good luck, Macca
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