Macca

Kel, I hope you got on ok on 20th. I go for my four year MOT on Friday - fingers and toes crossed. It doesn't matter how many times I go, I always feel anxious beforehand, as they always use language and abbreviations I don't understand. I feel cheeky asking sometimes but I'd feel terrible at home if I didn't ask because I would fear the worst when it was probably not very much at all. The only daft question is the one you don't ask in my humble opinion. Get your answers Kel to finally put your mind at rest. Good luck Macca

Poppy, you'll find that your body is a very shrewd and astute thing. It knows all by itself when you need to shut down for a while and it doesn't mess about when it's telling you. Mine still does it now and I've learned to listen to it or suffer the consequences!! Take your time, the world will still be here tomorrow! Take care (and of your Weimaraner -hope I spelled that correctly) Regards, Another sleepy head after nearly four years, Macca

Hi Becky, Well done, you've survived and that's one heck of a good start! Most of us seem to suffer some level of fatigue, forgetfulness, a dislike for noise and numerous people at once etc, but you will adapt over time. Just don't expect to do everything as you once did because it might not happen. You will find other ways of coping with those situations and that, in itself, you will find satisfying. Good luck, and if you want a rant, or support, or advice etc we are always here! Macca

No you are not over-reacting. Nor should you be embarrassed at making noises. You need and want some answers. You won't be able to plan or move on until you get some and you won't sleep properly because it will always be on your mind. Challenge away until you receive some satisfaction or get answers that leave you in a position to be able to do something positive. No-one is 'just a body', just because they are not currently in a position to be able to help themselves. Everyone needs a helping hand at some point in their lives and this is one of those times for Annie. She is a person, a living human being, and she deserves and should expect all of the rights and respect that goes with it. Right now, you are her voice, and you and she need to be heard. Go for it. E mail, phone, turn up on their doorsteps if necessary, but don't accept 'no' for an answer. You don't need to be obnoxious, just firm. Keep pressing and don't let them forget you. Give them a time limit to respond, and if they don't meet it, get on to them straight away. Times are distressing enough, and you need to keep them as short as you possibly can. Please don't be fobbed off by their cowardly ducking of responsibility. They have a responsibility to find solutions for Annie and they should be helping, not passing by on the other side! Good luck Macca

Hello Poppy, This is fantastic news - I am so very pleased for you and it is very encouraging and positive for those about to encounter similar situations. Well done and may your recovery be swift and total!! regards Macca

Wow - April, slow down! Answers will come tomorrow, not yesterday! Your body has experienced a big trauma and it takes time to get well.. It will get better, but slowly and at its own pace. Take stock of your life and cut out the rubbish so that you are only left with the really necessary stuff (like getting better -your health should be top of the list and it should stay there!). Let others deal with some things, re-adjust and take the stress out of your day to day activities. There will be some frustrations along the way but that's normal. I hope you have someone you can talk to, because sometimes you will need to offload - if you can't, then that's why we are here -feel free to open up -no-one will judge you, but you will be uplifted by the warmth and support you get on this site. Try to take some of the mental angst out of things - tomorrow will come and so will the next day. If the Mexicans are like the Spanish (same lingo I think) - in relation to work they say "Manana, manana" [i think that's how you spell it). Good luck - and I hope your dog is well now also! Welcome to BTG, by the way! regards Macca

Hi Vanessa, I'm very much like you - nearly four years in and can't exercise to save my life now! I used to exercise all the time - I was playing football the night before my SAH. Also considered to be near enough a full recovery now. I also have terrible days sometimes and feel guilty for saying so because I didn't want to be seen to be moaning when I am in a much better state than many others. That's a great post from Kris above. I went back to work but I decided to take early retirement - I did forty years and that's enough, I just now concentrate on enjoying my life and getting on with it. Don't worry, it sounds like you are doing just great. Being a doc, I've no doubt you are very conscientious, your hours are long and maybe your body is just telling you to ease up on the gas a little bit. Listen to it. Good luck -and glad to see you back by the way! Macca

Good luck Kel - write some questions you want answering on a piece of paper before you go so you don't forget to ask and tick them off as you get answers (the questions not the doctors lol). Take a pen to hospital with you and add some more if they say things that trigger off more questions, as they are talking to you. Otherwise you will forget and regret you didn't ask all that you could have. It works for me - short term memory and all that! You don't want to come away with any questions in your head! I wish you well. Macca

Jane, I was thinking about this some more - I think people believe they are helping in some way by saying you can't do things - almost a protective instinct. However, in reality they have the opposite effect and we all need to tell them that. If we didn't let our children do things, they'd go to school in a suit of armour and never be allowed out to play! Be positive and keep pushing Rob to do more and be challenged by more things -he will come to realise for himself that he is making progress. Win is right also -resting properly is as important as maximising effort when you do things and you can help Rob the most from a position of strength in yourself - not weakness. Nil carborundum and all that!!! Best wishes Macca

Jane, Don't you just hate it when those people are so negative? Look at what Robin CAN do. If he can't do something, find another way of doing it and hey presto -he can do it after all -with practice and support! We all battle negativity on a daily basis. Able bodied people are always being told 'you can't do this or that.!' It happens every day -it's just when you are ill that negativity seems to be magnified for some reason. In your own mind, unconsciously, you judge people by what you, yourself, consider to be 'normal' standards. What the heck is normal anyway? I'll tell you -it is what is right for you and Robin -no one else -just you two! You make decisions when you are ready and not before -you know him better than anyone else. Ask those people to get on board with you and turn their negativity into positives by reminding them of the progress he has made already - and continues to make, and if you see that slipping - keep on reminding them. If they won't then get them away from you, you don't need to be dragged down, you want to be hauled up! I make progress every day - I still have fatigue and short term memory loss and some muscle weakness but every day that passes (nearly four years now), increases my determination. Look at Win's story -there is inspiration -despite the singing (long may it continue)!! Good luck Jane and best wishes to both of you Macca

Hello Ian, I've not been on here for a while - for various reasons -and yours is the first post I've read. I'm nearly four years on from my SAH. I recognise many of the traits you describe. Sometimes I wonder if it is harder for the sufferer or for those around them. The answer is a recognition that it is difficult for all caught up in it. Unless you go through it yourself, you cannot truly understand. I can empathise with carers but I cannot truly understand. I suffered a SAH and understand that. You are the other way round. One of the major problems for sufferers is that they often look and sound the way they did before. It's like looking at the body of a car and wondering why it won't go. It used to run but it doesn't now. It's only when you look under the bonnet (hood for our American friends) that you realise there's no engine. Patience, laughter, love and time, surrounding yourselves with the right people - these are the things that make life easier and allow progress to happen -at varying degrees - everyone goes at their own pace! Best wishes Ian -keep the love - progress will happen, although it can be frustrating waiting for it to happen! Macca

Hi Daff and everyone, This is me also! I rarely go to bed after 9pm and I sleep for England! Often, I wake up feeling worse than when I went to bed! About 4am I wake and read for a while and then I drift off again until about 9 am. when I do get up it takes me ages to feel 'with it'. Still, I am still here but it is frustrating. My pituitary gland was damaged during the coiling and I now have to have growth hormone injections everyday. I was even worse before I had those! I am not allowed to have more than I get now as the hormone will make my heart grow and increase my blood pressure etc etc. I am thankful for what I have and the gift of seeing my beautiful wife and my kids and grandchildren every day. That is a huge bonus! Thanks Doc!!! Macca

Hi Dawn, This area of employment law is a minefield. Is this a case where your employer is bending the rules or moving the goalposts to declare you incapable of the job you are being asked to do? Are you the same rank as before? Have you suggested where any problems might lie and suggested a solution? Are your employers being unreasonable and suggesting to you that you might be incapable when in fact you are not? Are they overbearing towards you, knowing you are reluctant to fight them? Are you able to take a friend or union rep in with you? Keep a record of all of these meetings, emails, phone calls etc and what happens. Is this a case of potentially 'constructive dismissal' - that is, contriving to establish a set of circumstances unfairly, that they know you have no chance of fulfilling and enabling them to see you off? If you decide to take them for unfair dismissal - if that eventually occurs - you have to get your claim in within three months, I believe. If you want to go to an employment tribunal for things such as bullying, again you have to get a claim in within three months of the event occurring - not when any eventual decisions are made. I would suggest you get advice quickly and take notes of dates, times, records of events in the meantime. As well as CAB, many solicitors/lawyers have free half hour consultations to discuss problems to see if there is a potential claim for them to pursue. Might be worth you speaking to one of them. Make sure it is a lawyer specialising in employment law. Good luck Macca

That's me exactly Dawn! Good news is you know what to do to counteract it! Macca

Brilliant - balance is all you needed and a tad of reassurance. I've been there so I was almost sure it would be the same for you. Anyway - get out there and enjoy life - it's not a rehearsal, and if you shake a bit, slow down, just like you do with your car when it starts to rattle 'cos you're going too fast! Really pleased for you! Macca

Scoobs, Sorry to hear you're so down at the moment - but the only way is up. Go and see the Citizens Advice. What about Attendance Allowance and Carers Allowance and Motability and DLA. It's disgraceful no-one has given you that advice already. Go online to gov.uk. There's over 40 benefits, I think -you must be entitled to some of them! Get someone to go through it for you if you're not up to it yourself. Whatever you do, don't you dare give up lad - we need you on here, fighting fit and giving support to others. I hope you live in a marginal seat where you can make a difference with your vote! Get on to your local paper - they often fight causes like yours! Appeal, make a noise, anything but don't give up. Good luck Macca

Hi Dawn, well done for getting to the doctor's and on being taken seriously. As for your sick leave, your company should have a sick leave policy - you could do with finding out what it says so at least you know where you stand. I'm no expert on employment law but there are such things as employment tribunals if you think you are being treated unfairly. However, I believe you have to register any case within three months of the event occurring, whether or not you have an outcome. Not 100% sure on that but what I am saying is that you have to act fast if an unfair event happens. I also think there are fees to be paid up front which you get back if you win. Let's hope nothing is bad enough to have to go that far eh? But if you think it might, do your research now so you know what to do if anything should go wrong at work. You don't want to have to do research AND deal with the unfair act and all the emotion that goes with it. I hope you don't need this advice, but I was a boy scout and one of their maxims was 'be prepared'. Stay well Dawn Macca

If you are a lawyer, not only do you need to have your wits about you, you also need to be right - every time! Take regular breaks during your working day and slow down a bit. Think rationally about what you do and whether you really need to do that particular task. If you can cut out some of the wasteful things, you will be left with those that are truly necessary. Can you delegate anything? Can you prioritise? Are there things that can be left to a day when you feel better than others? Two livewire kids as well eh? I doff my cap to you - sounds like you are doing just great to me! Regards Macca

Hi Dawn, I suffer with fatigue. Make an appointment to see your doctor. Then write down how you feel and present it to the doctor when you go. Take your partner and get them to articulate your feelings if you are unable to do so yourself. Don't be a hero just go, that's what they are there for. If he/she moans, so what? Better to do that than to fall ill just for being embarrassed. I just go now when I feel really down, I don't think twice about it. Good luck Dawn Macca

Neveluna, Please don't let yourself become weak and run down. Mum needs a strong you, properly rested. Your help is less efficient if you are weak also. Set a rota with other family members, Mum will still be there when you come back! Try to rest and do what the others say, talk to her, sing to her, take a news paper and read stories to her, squeeze her hand, tell her you love her and talk to her as though you were talking to anyone - it can be difficult if there is no reaction at first but it will be important to her. Take a break now and then and come back and start again. Good luck Macca

Hi Neveluna, Welcome to BTG. In terms of what has happened to your Mum, it is still very early days yet. I was unconscious for a week or so and then didn't talk any sense until well after that. I had to learn to talk and walk again. It's always difficult to deal with because of all the emotional stuff on top of the event itself Time is the thing. The old adage that time is a great healer is never more true than in the case of a SAH. I think when this happens to you, your brain retreats into itself as a kind of defensive, protective, mechanism and comes out of itself in its own time and in its own way. Mum's brain will be all muddled up now after a serious assault on it and it will hopefully re-route itself in its own good time when it has worked things out a bit for itself. How much time it needs is unpredictable. How much it will recover is also an unknown. What is predictable though is that things will be different and both hers and your willingness to change and adapt with it will help recovery as much as is possible. Remember, every day is a huge bonus and progress may be slow and will come in small chunks. But progress it is. Keeping a diary is a great idea. It will help you record her progress and over a period of time you will be amazed at the progress your Mum makes. A SAH has many different effects on sufferers and family, but one thing that everyone seems to agree on is that the road to recovery is a long, slow, process and that every journey starts with a single step. I wish you well. Your Mum needs the support of everyone around her and will need it for quite a long time. Your Mum needs time - and your time - please give it to her, she deserves that. Any time you need help, we are here. I wish you well Macca

Yes, I get them now and again, but usually when I am tired, but not badly. My Grandpa developed Parkinson's Disease in later life and I worried that it might be the start of that for me. I asked my doctor, to be on the safe side, and was re-assured it was nothing of the kind. It is merely my body's way of telling me when I have overdone it. A little knowledge is a dangerous thing and when you've been through what we have, your mind can run away with itself if there is no-one else there to provide you with balance and common sense. Have a word with your doctor, just to set your mind at rest. Please don't lose sleep over it. This is good advice from the others. Earthquakes (your SAH) have aftershocks, maybe the shakes are just your aftershocks and everything then settles down and goes back to as normal as possible. Does that make sense? I hope this helps. Macca

Hi Steph, This is hard because it takes me back to my own SAH on Sept 1st 2010. So much of what you say about your husband mirrors my own situation. I was unconscious for almost a full week, I had the onset of hydracephalus, I had to learn to walk and talk again, I said some outrageous things whilst not being aware of doing so and had problems with my short term memory. I still have some problems with that but it is nowhere near as bad as it once was. Not only could I not remember what I said at times, I couldn't even remember the conversation! I told a nurse she was the most beautiful woman I had ever seen. My fiancee, who is now my wife, was sat next to her. Another woman was sat next to her. I asked he what she was doing here - she is my sister! I swore and cursed at people who did not deserve it and insulted those I had no right to. The good news is that I did get better and to look at me now you wouldn't realise there had ever been anything wrong with me. However, my pituitary gland was damaged when they repaired me and I now have to take growth hormone daily for the rest of my life to prevent fatigue. However that is a small price to pay for the quality of life I now enjoy as a result of the fantastic care I received and continue to receive from the team at my local hospital. My two boys are both adults and so I don't have the same problems as you on that front. However, I am living proof that your situation can get better. I won't pretend that it will be either easy or quick. It is a long road back for your husband but with the right help and support it is possible. I am so grateful to the people that helped me. I hope that by seeing me walk and talk it is some kind of satisfaction for them to see me as well as I am. I wish you and your family all the very best of luck. I will watch out for your posts and if I can help in any way I will. Remember, the only daft question is the one you don't ask, so don't be shy in asking for help - we've all been there and know how hard it can be. Macca

Daff, well done - I'm with 'Staysure' and their policy is for a year, not just one holiday. Just be careful to answer the questions fully and you are fine. I don't have shunt but I do carry a medical kit that I have to declare to airport security and they are fine about it. I had one guy at a foreign airport a couple of years ago tell me he wanted to see my letter so I showed it him. he told me it was ok and I thought 'what a brilliant guy' -not only can he speak English but he can read it upside down! Macca

Joanna, You don't have to be in a foreign country to not get answers - it can be just as bad at home! The trouble is, until it happens to you, you don't know what questions need answering anyway! Until it happened to me I hadn't even heard of the condition. Like Win, I had the onset of hydracephalus and like you I still have short term memory loss, although it isn't as bad now as it once was. It is a long process, my SAH was September 2010 and I am still suffering with some effects with lights, confusion at times, disorientation if I do things too fast or if I am tired etc. What you have to do is learn that you can't do what you did before in the same way, so you have to adapt and find different ways of doing them. That can be a challenge as you are out of your comfort zone and mental conditioning, but on finding the right solution for you, it can be immensely satisfying! Be positive Jo, you can and will do it - just remember not to do too much in one go and to do things at your own PACE and you will get there in the end - remember the tortoise and the hare? You are now the latter, like the rest of us -you can win this race, as did the hare, but don't continue to judge yourself by other people's standards - judge yourself by your own newer standards because the old ones no longer apply to you. Keep a diary and look at it from time to time - you'll be amazed at your own progress over time! Good luck - we've all been there and we're all still here - so will you be! Best wishes Macca