Macca

Hi Carolyn, When they coiled me, my pituitary gland was damaged and it stopped producing growth hormone naturally. That's why I was prescribed and now have injections, as failure to have it causes fatigue and therefore seriously impedes quality of life. With it I am much better and continue albeit slowly, to make progress! It works for me. Hope that explains it enough for you! I had two years of tests before they gave it to me - it's not something you can get off the shelf in the UK - and it needs to be used under supervision of the hospital! I hope you are well! Macca

Hi Kris, I am absolutely delighted for you! Progress is a wonderful thing and, when you put it in the terms everyone can easily understand, it can only provide inspiration for the rest of us! Whether people have progressed as much as you, or have achieved less, progress is progress and we should applaud it all! Everyone goes at different rates and has their own path to follow and hopefully we will all aspire to be 100% well again. I look at it like this - if I can't be first I want to be second, if I can't be second I want to be third and so on. All I do want people to know is that I am doing my best and giving it my all, because I can't do any more. Progress, any progress, with love and support from those around us, is success. I have a somewhat competitive nature at times, but I realise that for others life isn't about competition, it's about living the life they want and choose, and if something like a SAH comes in between those goals, then getting as near to it as they can is all they, and the rest of us, can ask. Sometimes we may have to re-adjust our goals, but there are some who are not in a position to be able to do so, therefore I count my blessings. Me, I took early retirement, my short term memory is improving although still not perfect and I still suffer fatigue which is now regulated by daily growth hormone injections that I now have to take for life. Still, life is generally good and I am truly thankful for that! Once again, I am delighted you are on the up and I look forward to more updates from you - well done Kris, superb stuff. Good luck with the cycling, walking and of course the audition! Macca

Hi, I think a number of us have suffered depression at varying times post SAH. I know I have. You seem to have put up with a lot and I can see why you might have been susceptible to it. Try to look on the positive side. The only way is up. When you fall off a ladder you have to start at the bottom rung and work your way back up again. Try, but one step at a time - if you go too fast you will surely get knocked back again, if you do then dust yourself down and get right back up again! Remember the story of the tortoise and the hare - well you are the former at the moment. Don't be hard on yourself - easier said than done, I know but I've been there and you may have suffered a setback but you will win out over the longer term. Good luck, Macca

Nat, Welcome to BTG! I've got the video and the T - shirt. My experience was exactly yours - coiled, lumbar puncture, headaches, fatigue, short-term memory loss. It's been four and a bit years since mine and I am still recovering even now. I went back to work but have since retired. I, like you, read the material and felt it didn't quite fit the bill. I'm glad you are taking the positives but even then there will be 'down' days. It's natural and as they say 'normal' to feel this way. Progress will at times feel frustratingly slow - but progress it will be. If you keep a diary of how you feel and what you can do, you will be amazed at your progress over a period of time. We're always here and nearly everyone has something different yet similar to report - the brain is indeed a complex thing! Feel free to come on here and discuss things - have a look around the site, play by the forum rules and you will get so much from liaising with others who have been in the same boat, like me! Once again, welcome! Macca

Hi Kathy, Welcome to BTG. Recovery is a slow process and your body will tell you when you've done too much! Keep drinking water throughout the day. If you must return to work so early, can you ask for a phased return to allow you time to build up. Going straight back into the thick of things will almost certainly be too much for you and may set you back. Confidence may suffer and the perception others have of you will also be a discussion point. Remember that when you go back, the others will see you as before - "Oh she's been off but she's alright now - she looks the same, talks the same so there's nothing wrong with her." I had a high pressure job and that's exactly what happened to me so communication with everyone is very important. You have been through a lot - don't underestimate its effect on your mind and body. A lot of us have had this experience and it isn't easy. Go easy on yourself and keep talking to us! Take care, if you think stress was a contributory factor, then why put your self straight back in there? Talk with your managers about re-structuring or part time work. You owe it to yourself and those you love and who love you! Good luck and please keep us posted! Macca

Teechur, I have posted before about this, but I too have had that feeling of being lost in a place I know well. In fact, it has happened twice to me - once in Manchester City Centre, a place I know well, and secondly in a bar (or pub as we call it over here)that I have been going to for forty years or so. On the first occasion, I sat down until my memory returned about a half hour later. On the latter occasion it frightened the staff in the bar and I was hospitalised as a result, but like you I didn't know where I was or why I was there. I know both places extremely well but on these days I was very frightened. I don't know that I dealt with either situation very well, indeed it still sends a chill through me when I think about it. I don't kind of look at it as a right to be angry - I just am or I'm not, it's what's in me. What I find is important is how one deals with it afterwards. Of course you do have a right to be angry, or sad, or happy, or any of the other feelings we are capable of. We all do. I hope you are feeling better now, but I guess you are still trying to come to terms with what exactly happened, how it happened and how will it affect you in the future. For me it has happened twice in four and a half years ( the last time about three years ago) - I hope it won't happen again because, as you say, it is very scary and it is something I do not wish to experience again. In Win's case, I think she was looking more widely and was just encouraging everyone generally. It's great she has such a bright outlook, I wish I was so bright. I have down days too and I'm sure Win does as well. I don't think any one of us can go through the traumas that we have had and not experience bad days. But progress gives us all hope and Win has acquired bucket loads which I think she is trying to share and I applaud that. For me, life is life - sometimes good, sometimes rubbish and all points in between. We all have a right to be who we are, and we are who we are, if that makes sense. But I bat on, not just for me, but for those that love me, depend upon me and vice versa. Life goes on, and I have to as well, dealing with all it throws my way, even though I don't like it at times. Frustration is the emotion that gets to me the most. None of us can help how we feel. I can tell from the way you write, that life matters to you very much and you care. No, your experience wasn't fun, and neither were mine, but since then I have many experiences that were fun and, I find, outweigh the bad ones I've had. I hope you can find that too, over time. I won't ever forget it though - I agree it is scary and completely disorientating. Thanks for sharing your experience, I was surprised to find that someone else had the same as me and I hope that by sharing it ,others will be helped also. I agree that after-care is where this is so little understood. The repair work by the doctors and nurses is brilliant, but the longer term after-care isn't. That's why I find this site so helpful. I don't feel so alone, and I feel supported even though people are physically miles away from each other. I love the fact that it's for everyone, no matter what. Macca

Poppy, This is a brilliant poem, And I don't often do 'em, Alas too my rememberer's broke, and no drink strongerer than Coke, And they say it takes one to know'em!! Welcome to BTG, most of us can relate to this one! Macca

Hi Teechur, I think I would try to find out if you would qualify before you give up your job. Don't burn your bridges until you are sure. Check the wording on your policy and take advice if you need to. Tick off each condition and see if there are any where you are doubtful whether you would meet the criteria and discuss them with someone. The advice above is good though. You are obviously conscientious and feel guilty about taking the benefit from something that will be yours by right. So don't be shy or bashful. Go for it if that's what you want- that's what you pay your premiums for. Good luck, Macca

Hi Janet, What a tough time of it you've had but at least there is some bright news with Freddie! Also, now that you don't have to work, your stress levels should go down a bit and you will have more time to devote to family issues. My thoughts are with you and I hope things very definitely look up for you from now on Best wishes, Macca

Drink lots of water throughout the day -if your headaches persist -see your doctor! When you think about it -stress can't do you much good because you are making your brain (which has already suffered) work extremely hard because you keep going over and over things. Don't bottle it up, talk to someone -'a problem shared is a problem halved' they say So de-stressing has to improve that by reducing concentration levels. I am guessing, but it just seems logical to me. Talk to your doctor about it and in the meantime, take your foot off the gas a little and give yourself a chance. Good luck, Macca

Hi Tamsyn, Thank you for posting and welcome to BTG. Finances are a big consideration, but you have to be healthy first. That is your priority right now. Hopefully, any financial re-organisation will be short-lived, but you have to listen to your body. It is trying to tell you something - maybe that you are going too fast for it and you should slow down. Whilst you are off, think about how you can change your working pattern - delegate more, take more regular short breaks, speak to your boss about how you can re-arrange things etc. Your family need a strong and healthy you. Re-appraise rationally and look seriously at that work-life balance - money is important but it's not everything - your health and well-being is! Many of us have had to do this - I won't pretend it's easy because it isn't. People will look at you and think 'she looks the same, walks the same, looks like there's nothing wrong with her,' but the fact is - you are not the same and you need to re-adjust to take account of the changes in you. Get that message across to the others around you because they need to understand that message loud and clear. You can do it. It just takes a bit of thought and a bit of planning! Good luck with whatever you decide to do. I wish you well. Macca

Thanks Shellie, No matter what question you pose on here someone seems to have an answer - that's great news for everyone. Sue, I hope you are coming along well and making steady progress, keep doing the diary, it really will show a difference over time! Macca

Being so fit to start with was undoubtedly a help! Macca

Phil, I am amazed you are up on your feet, let alone taking your son to school. Slow down a bit, your body has a way of telling you that you are going to fast for it to cope at this early stage! I wasn't able to go for a walk for months, and then only a few paces at a time. Keep drinking water as Tina says. It's a natural thing to want to get back to how you were Phil, inside you are thinking you don't want to let anyone down, but you aren't letting anyone down. You need time out to recover, you've had a serious knock. And if you notice anything untoward after stopping your pills, get straight back to your doctor and let them know pronto - don't dwell on it, just do it, that's what they're there for. Good luck Phil Macca

Hi Chris, Hope all goes well for you both - Annie is such a lucky lady to have you on her side! Keep your chin up and stay strong! We are on your side too - keep posting Chris! Best wishes Macca

Great stuff Iola! You sound much brighter now - and I can still hardly believe how much you achieved! Glad we could help! Three cheers for WW!! Macca

Hi Remy, I was coiled but I have not experienced the settling as you describe. I know that it is a possibility, though, and I was told about it when I was operated on initially before they let me home (some 4 years ago now). Surgery is always a risk of course, but what is the alternative? Does the risk of having it done outweigh the risk of not having it done? Only your doctors can tell you that. I am sure some of the others on here may have experienced this but I think it goes without saying that I would be apprehensive too and I can fully empathise with that position. Discuss it with your doctors to try and allay your worries. I wish you well my friend and am sure some of the others will comment soon.. let us know what happens! Macca

Good stuff Kris, glad it worked out ok for you! Obviously man flu is tough!! (only joking!) Hope you are well Macca

Hi Chris, I can't say I have any knowledge or experience of this but I just want you to know that I hope all goes well for you! As you can already see there are people who know of this and I'm sure others will give further knowledge soon. Good luck, Macca

Hi Colleen, Welcome to BTG! A well written, articulate, story that many of us can relate to very closely! You know those angels you were talking about? One is your wonderful husband and the other is your dog Annie. Both of them were there at the right time to give you this new opportunity at life! Grasp it with both hands! Don't try and validate everything - what happened has happened, it is in the past and you can't control that (but you can try and understand it) - but you can control the future. Life has thrown you new opportunities - take them. Don't be angry that you were spared, be thankful and grateful for the new opportunities that have been afforded you, that have been denied to so many others. You won't do the same things as before, or if you do you will do them differently, not better or worse, just different! Fill your glass and celebrate the new lease of life that has come your way. Talk about your dog like she is still with you, because in a way, she is! And while you are at it - give your husband an extra special hug - he sounds a great guy! Best wishes, Macca

Glad you're feeling a bit better today Phil - one other thing! You'll probably notice that although you feel pretty rough and bewildered at the moment, to others you probably look the same as before you were ill. That'a another thing most of us experience because you can't see a brain injury! You are the same car with a slightly less powerful engine in it at the moment and that's the message you need to get across to others. Just because they can't see it doesn't mean it isn't there. Headway are great and that's a positive step from you -well done! Take one day at a time, you are on your way! Macca

Victoria, Take the world off your shoulders, let someone else carry it for a while, you can't do everything, you've given so much already. You need to recover. You can only help others and be of real value to them when you are in a position of strength and you need to take some time out to get as much of yours back as you can. Don't try and set up elsewhere - you have enough on your plate - sell the idea to someone else and let them take it on! I know the ILF is under pressure right now - if it goes under you would be under even more pressure if you try to expand - so don't do it! If you must continue, act like a traffic policeman and direct the traffic a bit more instead of trying to do it all yourself. Delegate!! Keep communicating Victoria. I can tell you get a lot out of what you do, but even a kid in a sweetshop will eventually get sick if they don't give themselves a break! It's ok to rant and it's ok to feel a bit off, but you need a lifeboat at the moment and let the ship take care of itself. It'll still be floating, maybe just a little off course when you get back to it! Well done for the work that you do, though, it must be very rewarding in its own way! Good luck, Macca

Hi Phil, Welcome to BTG. I really feel for you, the last thing you need is to be left alone! Keep talking to your wife (and your Mum), if you can, and ask if Grandma and Grandad can watch your son whilst you do so! Then sit down and talk to her and your Mum in a calm and rational way. Ask them to let you have your say and listen to what you have gone through and how you feel, without interrupting you. Then let them take it in and respond and you take it from there. What you are going through is so close to what many of us have been through. You need to focus on the here and now. The future will take care of itself. Do what you need to get better. Get things in perspective, you've gone through a huge knock to your confidence and your body has taken a pounding - but you have survived and the only way is up. Just like when you go diving, it takes longer to come back up than it did to go down, but you'll get there. Two things, I think, will help you (as well as what the doctor's tell you); 1) Keep a diary and chart your progress. You will be amazed over time at the progress you are making as sometimes progress is slow and you can almost not notice it, but it is there 2) Get your wife (and son if he is old enough) and your Mum to read through the posts on this site so they have a better understanding of what you are going through because they need support too!. These events are happening to people across the world, but we all help each other and we understand (even the bowel problem I'm afraid to say - I remember the difficulty it caused me and it brought a tear to my eye and made me wince again when I read your post! I hasten to add, I'm ok now). Time is what you need and patience is what your family need, as well as to see you make progress. We've all done it, it is a slow road to travel, but as someone on here once said - every journey starts with a single step! Well done for finding us Phil, you are not on your own - we'll be here for you whenever you want us to be. Ask as many questions as you like, we'll try and answer or point you in the direction of someone who can. We're not doctors or medical people though, so we will always ask you to contact a doctor in those instances. One more thing Phil - don't sit there by yourself, letting your thoughts run away with themselves - get talking to people to take your mind off things - it's always good to be among people and they will also gradually come to understand. Talk to us if there's no-one around - go into the green room on the site where you can talk about anything you like, rather than your condition. Keep posting Phil - good luck Best wishes, Macca

Kris, Good luck - let us know what happens! Ten tablets and a jab too! That sounds a lot! Macca

14 years Cat! Brilliant! Then there's hope for us all! Yippeeee! Sorry you have to endure the pain, but so many of us have bouts of it but not constant, thank heavens! Well done for finding us Cat. We look forward to many more posts from you! Stay positive - that is the right way to be even when you're feeling down! If you want to rant or let off steam, this is the place to do it! regards Macca