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Everything posted by Macca

  1. Well done Jess, a complete privilege to be a mod with you and the others. You are an inspirational character and clearly a fantastic Mum and human being. Hope you have had a fabulous day!
  2. Thank you all very much for your kind words. I really find it difficult to believe how long it has been since this awful event happened to me. The silver lining though is that I came into contact with all of you. From my point of view, I think you underestimate how much of a help you all are to me with the inspirational things you do, sometimes in the face of terrible adversity. I think this group is a kind of push me pull you type of thing where we all bounce and thrive off each other and long may it continue. Just for the record, my wife and I had a fabulous meal last night in a superb Italian restaurant to cap off a lovely day. Once again, thank you to everyone for 'being there' for me. Macca
  3. https://web.behindthegray.net/topic/6862-sah-informing-the-dvla-uk-only/ Link to the 'Driving after SAH' topic for your information as it covers notification to DVLA. Also consider your insurance policy which may have different terms than the DVLA rules, you may need to notify them - check your terms and conditions. Hope this helps. Macca
  4. Well, I made it! Ten years to the day since my 'event' and I'm still here. It just shows it can be done! It is also eight years to the day that I married the lady that saved my life, my wife Sandra! It is hard to believe that all that time has passed. I am eternally grateful to my surgeon and his team. Well, the weather is fine, the sun is shining, it's a clear blue sky (not often you can say that in Salford!) and we're going for an Italian tonight. Here's to the next ten and thanks to everyone who has supported me through these last ten years. I have learned so much from others 'who get it' on this site and your experiences, strength in the face of adversity, and your downright humanity, humbles me. I wish everyone all the very best in your recoveries however long it takes and just say from me "Thanks for being there!"
  5. Ann your bond with your little one will be strengthening day by day. He obviously might not understand the finer details, but he understands for sure you were very ill and he realises he loves his Mom very very much. I'm sure he enjoys doing things for you and realising he is helping you to get better. Mentally, it is very lifting for him and for you and it's' almost an unwritten declaration and demonstration of love between you. It will stay with you both forever and your husband witnessing that will also be beneficial for him. You will come out a stronger family in the end. Sometimes you don't need to go to school or college to get an education in life. You have the lesson that love can conquer and overcome all when given a chance. What a great opportunity you have been given - grasp it with both hands - life is precious, you have received a lesson that is invaluable and will stand your son in good stead for the future. My very best wishes to you all, I'm so glad you all got that extra chance - take it without a second glance. You deserve it. Macca
  6. No time like the present Jean - even if you start one now you will see changes over time - they might not be a dramatic or as pronounced, but they'll be there for sure. Good luck! Well worth doing!
  7. Hello Ann, Sorry you had to go through this twice Ann, that really is unfortunate. I remember my surgeon telling me that over time coils can compact themselves under their own weight, but that 'it was as rare as hens teeth' was how he phrased it. So you really have been unlucky. The good news is that you survived. I would certainly go looking for answers, if only to understand what happened. On the positive side though - you survived. I've never heard of it actually happening before, but I knew it was a possibility from something I read once. Thank you for sharing! Best wishes, Macca
  8. Hi Carolyn, Great question. I'll answer from my own experience and I'm sure others will add theirs. firstly 6.5 weeks is virtually nothing in recovery terms. Months and years is more the order of the day. What I did, and it was completely wrong, in my opinion, with hindsight, was to set myself a goal of getting back to normal. What's wrong with that, I hear you ask? Well, what was 'normal?' In my head, It was back to being the old me, where I was the day before I had the 'event.' But then, that was all I knew. I realised later that was never going to happen. What I failed to realise when I woke up, was that this was the new me and was the new normal. I just had to find out what that was, and what it meant, for me. If you look at old photos of yourself, you see big changes in yourself that you took in your stride as they happened over time, almost without you realising. It was only when you looked at the photos you realised how much you had you changed and you probably had a laugh about it with your family and friends. At your haircut, your height, your weight gain or loss, your shoes, the car you had then as opposed to the one you have now. They all evolved over time. What you have now is sudden change foisted upon you, in a surprise attack that damaged you, but didn't finish you off. You survived, and what you now have to do is take stock of what happened, how much damage was done and try to adapt and get on with life as best you can. To put it into a context, think of any military conflict where a commander has insisted on a surprise attack and what the response was. The Japanese commander, Yamamoto, planned the attack on Pearl Harbor in WWII. They surprised the fleet there. The American response was to dust themselves down, assess the damage and set about repairing themselves ready to strike back. All the battleships were sunk, but they survived the attack and planned their return strike by using what they had left - the aircraft carriers! This might, at one level, sound absurd, but what I am saying to you is that you have suffered a surprise attack on your body, you have survived, you have to assess the damage done, and you have to find a way to strike back by getting on with your life, adapting to what you have left of your faculties, bodily strength, circumstances and so on. You will find what your new boundaries are by assessing what you can and cannot do. Those you find difficult you will delegate, or avoid, or change. but you will adapt. You will find what works for you. You mention several things in your post. This is how I look at them: 1 Your brain was attacked 2 You survived and got that 'wake up call' and still have your optimism (a great tool in these circumstances) 3 You recognise you are overweight so you have started to assess - now find the right diet and exercise regime with the help of your doctors - maybe that will help you get your 'mojo' back 4 You have realised recovery takes longer than you anticipated - so plan in the time to give you the space to do that 5 You have friends and family - use them to help you in your recovery - you will be surprised how many people will want to help - but you have to let them know you need that help - so tell them - all you need to do is ask! You can't live in splendid isolation all the time. Look on it as how much have you done for others - now it is time for them to give a little back - so lose any guilt complex you might have after being independent for so long. 6 Keep a diary and write things down - including progress and your assessment of where you are, what you need and where you want to be. review it regularly. Embrace the fact that change has happened, deal with it and move on. Learn from the past but don't let it rule you. It sounds harsh, but it is reality and like it or lump it, none of us can turn the clock back. yes you may need a period of recuperation and going through the 'Why me?' phase, but eventually we have to get on with it, so make the best you can of it. All our journeys are different in some way, so why not make it as fun and as useful as you can make it? You have a positive and optimistic attitude - that will make a big difference. Life is worth living, making a few adjustments won't change that in your case. I hope this helps, Best wishes, Macca
  9. Hi Carolyn, Remember fluid is in foods too, so it doesn't necessarily mean just water. Tea and coffee, fruit juice,milk etc is ok. There is also water in melons and cucumber, fruit etc etc. Just drink small amounts regularly throughout the day, as well as taking in foods that contain water. Time is the great healer in this, and everyone is different in this regard. Resting well is as important as exercising well, but get the advice of your own doctors before embarking on any exercise regime. Doing what you want to do, and what you need to do, are sometimes very different things and doctor knows best! Also listen to your own body and stop if and when it tells you to! All great advice above, I hope it has helped you. Mental support is vital, and we all benefit from sharing experiences on here. If you are on your own, don't let things build up inside you, or let your imagination run away with itself. You (we) need to balance our own thoughts and you do that by talking to others who know and understand what you are going through. that is why this site is so valuable. You come across people who have the video and the T shirt, so to speak. If you feel you need to talk, come onto the site and say what you feel, tell your problem and someone will answer you. We just can't give medical advice that's all.
  10. Hi there, Many congratulations on reaching this anniversary! Your logic is that "it's always there, isn't it?" Well so is the chance of getting knocked over by a bus every time you cross the road, or hit by lightning next time it thunders. Yes, it's there, but so are a hundred and one other risks. Don't let it dominate you! Live each moment to the full and enjoy it. You will have your down moments, of course you will, but try to have more up than down. As Subs says, it is very rare and progress is in front of you, not behind, so grab it with both hands. Onwards and upwards, we are survivors - as are you! Try to look on the positive side, grab your second chance at life. Re-living events is a natural way of learning how to handle the future. You have a birthday every year and maybe don't notice the difference in yourself from year to year. However, if I said to you look at some photos of you from ten years ago, you would think about the journey you have been on - the fashions of the day, your hair styles, the car you used to drive and you will see the change compared with today. You've just started a new journey - post SAH - and it's only one year on. In ten years - or even five -you will notice big changes in the way you started and the way you are when you reach 'five.' You will have adapted, your brain will have re-wired some or even most of the damage maybe - but the important thing is - you will have advanced, made progress. Wow! What a thing to look forward to. I hope that puts a positive spin on things for you. It isn't the rate of progress, or the speed at which you make progress compared to others, - it is the fact that it is YOUR journey, and that you do make progress. Life isn't necessarily always easy, but it is up to us all to make the most of what we've got by doing the best we can. My Mum used to say to me that if I came last in a race it didn't matter, as long as I had done my best - and she would still be proud of me. I still live by that legacy to this day. Congratulations once again! Best wishes Macca
  11. Hi Allejam, Not everything you experience will be down to SAH. If I were you I'd get to the dentist again, things might have changed since the last time but you need experts to diagnose and as you know - we can't do that for you because we are not medically qualified in any area. I'm not aware of anyone on this site who has experienced this - but why wait, or suffer - go and get it seen to by the people who really do know what they are doing, dental pain is awful and the sooner it is dealt with the better. (I've never heard of it before, but maybe someone else has). Then maybe you can tell us what they say about you and your experience?? Is it related to SAH or not, for instance?
  12. Keep your chin up Sallios. It can be frustrating waiting for checks and scans etc but I guess no-one foresaw a world-wide pandemic! Nice to hear from you! Look on the bright side - at least it sounds as though nothing has got worse! If the situation changes contact your docs asap or get down to the emergency department at hospital! best wishes, Macca.
  13. Glad I could help, thank you! It's what we are here for. Sit down and plan how you will explain your injury. Rehearse it if necessary. English is a great language for finding alternative ways of saying things. Good luck. Macca
  14. Hi Shell'ey, I just read your post with interest. I have spotted a couple of potential issues and I hope by pointing them out that I may help you. It is interesting that you, yourself are a rehab therapist. So here goes: 1) A brain injury is invisible, so only you can understand how it has changed you on the inside. So you have to keep communicating to others about how it has affected you. It doesn't all have to be negative - it can be "It did this to me but this is how I coped with it....." 2) Are you helping everyone else without looking at yourself - is that acting as a kind of trying subconsciously to convince yourself that you are ok, when really you aren't? Does the current pandemic take you back to your own struggles, and the subliminal messages it presents you with, makes it unbearable? Maybe it is time to confront those issues and take some counselling yourself? It is a big person who admits to that, especially when you are 'in the profession.' Is that an option for you? Worth considering in my book! 3) Is your fitness regime now part of your rehab? Do you need to explain that what you do is only a fraction of what you did before? 4) Have you checked the conditions for you to receive he benefit you have applied for? Does your fitness regime fit in with it? Do you think they would refuse you the benefit if they knew you were doing it? Could you get a note from your doctors to explain it so you still comply with the benefit rules? 5) Brain injuries are notoriously slow to recover from. The passage of time does not always fit in with other peoples ideas of how long it should take to recover. It actually takes as long as it takes and no amount of cajoling by others will make it be any faster. 6) Don't beat yourself up about it. Anyone who has had a brain injury is a hero in getting on with life, in whatever capacity they are able to. It sounds like you are doing remarkably well. When you watch a magician on TV, you know its a trick, but you don't know how they did it. A brain injury is no trick but they still don't know how you do what you do! So tell them. And then tell them again. You are a walking miracle, a testament to the modern skills of doctors and nurses, and you are a testament ,too, to your own resilience and power to adapt. Those are my thoughts about what you have just said. I hope I am reading you right, I do not mean to cause any offence, just to try and help you. Sometimes we can't see the wood for the trees. I have been guilty of that myself, especially in the early days after my 'event.' I hope this has been of use to you. Best wishes, Macca
  15. Hi Veronica, Thank you for posting this answer. It is pure class, and is a fantastic response to a difficult problem. You show a lot of experience and understanding. It is also interesting Dramblys, for us to remember that carers too, have their own issues to deal with, and that SAH sufferers are not the sole keepers of pain and problems. The world isn't perfect and it is often a cruel and unforgiving place. Life can be a struggle for many of us, and it can be a difficult job to prevail. I think what matters is that we are all able to offer care and compassion, and that life is often a question of teamwork, where we need the help of each other to pull through difficult times. That's what makes us human. There is nothing wrong with emotion, we just have to try and channel that energy in the right way, in a constructive way, where we are allowed to cry, where we are allowed to let off steam, but to rally round and overcome the issues at hand.
  16. Hi Majella, One good thing about being in the 60 plus range is that we are good at adapting to change as we get older, perhaps because our lives are changing anyway. Life's experiences and maturity often mean we take change in a more philosophical way. Remember, as you move on, that resting well is as important as working well, so listen to your body, it will tell you when you have had enough. Remember too, that there is still much in life to enjoy and marvel at. If you want to ask questions just fire away, someone will answer you and let those around you see the site as well, there is much that they can learn as well in their efforts to help you cope. Good luck Majella, we hope to hear much more from you - welcome to our world! Best wishes, Macca
  17. Hi Michelle, Congratulations on reaching this milestone and I hope to continue to improve! Great to have you on board! Enjoy the day and just enjoy life!
  18. Hi Matthew, Fatigue is a common bugbear with most of us. Brain injuries are different from any other conditions because the brain is your body's control box! Nearly four years isn't that long in brain recovery times. Everyone is different and some take longer than others. I' m nearly ten years out and I still suffer with fatigue and i know I always will. The brain seems to take longer to repair than other parts of the body. You may well recover, but it will take a long time. What you need to do is adapt to how you are now. Resting well is as important as working well. You wife probably does not understand because she has never suffered a SAH herself and it is always difficult to explain to someone who isn't 'in the know.' It isn't her fault, it's just the way it is. Perhaps learn to adapt and take the kids from her when you are feeling well and up to it, even if it isn't absolutely necessary at the time. Have fun with them, teach them, go out with them and let your wife have some 'me' time. There is no law that says she has to have the kids all the time because 'she's the woman.' Share the load with her, but do it when you are able and do it because you want to. Being a parent is a two person job, so chip in when you can. Offer to do it rather than be told to do it - they are your kids too, and Mums do a terrific job. Your wife probably had her hands full when she was supporting you when you were really ill. For her, it seems like she feels it is still going on and she needs some relief. And you need to have some sympathy with that view. The biggest thing, though, is to talk to your wife. Show her this site, as others have suggested, so she can get a better insight. I'm just telling it like it is. Some days you can do more than on others. Don't use your condition as an excuse not to do things because you don't feel like it, because people see through that. You don't do it because you really can't on that day. It's difficult, but in taking care of your kids, talk to them too, so that they understand what is wrong with you also. Remember Frank Carson, the comedian - "It's the way you tell -em." You have to be the new you, not the old you. Your old brain is in the photo album with your old photos. Your new brain is in you now, with changes made that make you do things differently now, not better or worse, just differently. Adapt, Matthew, don't let your visions of yesteryear torture your todays. Adapt and get on with life in the best way that you can, in the present. Just do it a little differently than you used to. Changes have happened suddenly so accept that and change the way you approach things before they change you. Approach the battle on the same team, a united front, not fighting from different corners, from where you will end up slugging it out with each other. Look at life's road signs and navigate together. Good luck, Macca
  19. Hi, As Supermario says make sure you appeal within 28 day of the the date on the decision letter - not from when you receive it. Unless theere is something blatantly wrong, the DWP will usually back their own, original decision. So try and get your appeal letter prepared before it arrives so it is ready to send off straight away. You can always amend it slightly if there is something unexpected in your letter. Make sure your letter says I wish to appeal the decision of --/--/----. When the appeal date is due, make sure you attend. The decision will more likely go for you if you attend than if you don't. DWP don't even attend a lot of appeals anymore. They are currently losing about 70% of appeals. It seems they are playing a percentage game. The people hearing the appeals are generally very nice, so there is no need to be nervous. You can take a friend with you or a representative if you wish. Good luck, Macca
  20. Hi Iola, Nice to hear from you again! It's hard to pull away from work, but what I would say to you is consider working differently. Can you become the traffic police officer - directing instead of doing, delegating and organising, instead of being the worker bee all the time! just try and do little things that ease the pressure and the stress. I don't know what you do, but usually there are things that can be changed or adapted. Well done for getting to seven years. It will be ten for me in September! Good luck, hope things are well with you and yours, Best wishes, Macca
  21. Hi Carolyn, When I was coiled, my pituitary gland was damaged. As a result some of my hormones and vitamins became deficient. I now have to have daily injections of a hormone to combat fatigue. It hasn't completely cured it but I am much better than I was. I am a rare case, I know, but if it can happen to me........... I am not for one minute saying this is the cause of your fatigue, because there could be a number of reasons, but what I would say is broach the subject with your medical team and get them to check it. At least that could be explored and eliminated. At least ask because if you don't ask you don't get. Worth a try maybe? best wishes, Macca
  22. 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
  23. Hi Mark, When you next go in for a check up, ask them to check your hormone levels. That feeling worse than you did when you went to bed is well known to me, and I was shown to be deficient in hormone levels and I now have replacements. I'm not saying that's it in your case, because you just might need time as your event was so recent, I'm just saying it's worth mentioning and having them checked. In my case it went on and on and on, and my levels were checked and hey presto, I'm on HRT for life now! (Remember that song? (Man I feel like a woman! Shania Twain I think it was - I don't laugh at it now!) Good luck mate! Macca
  24. Brenda, I think what we're all trying so hard to say is, "You'e not alone now, don't carry the load all by yourself, share it with us."
  25. Hi Brenda and welcome to BTG. Short term memory is one of the casualties of SAH. Your husband's brain will be trying to re-wire itself. From the great replies above, you will gather that it is quite normal or usual to have these problems. Longer term memory is less affected. Over time, it will get better to some extent - as did mine - but as Tina says it is still very early in recovery stages. Good things to be doing for him will be to make notes of anything he needs to remember, keep a diary, keep on repeating things until they become long term memories. Once you transfer the memory into the 'other box' he stands a better chance of remembering. Skippy catches what I am trying to say above. Please remember, he can't help it at the moment, so you need to be tolerant of him and give him the support, space and time to recover. Resting well is just as important as him making an effort. At this stage of his recovery he will tire easily, but it will get better over time. It is a slow and gradual process though. He might look normal because there are no scars to see, but there is internal damage that needs love and care, support and time to heal as best it can. Everyone's journey is different and times vary from individual to individual, but big improvements can be made. Keep a diary of your own, noting what he can and can't do, and over time when you look back on it, you will see big improvements have been made, almost without noticing. Remember when a relatives kids are growing up? if you are with them every day you don't notice much, but if you haven't seen them for six months you say 'My word look how much you've grown!' Well, it's a bit like that with this recovery lark! We're always here, so feel free to ask your questions whenever you want to and you will get replies, for sure. Best wishes Macca.
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