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Everything posted by Macca

  1. 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
  2. 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
  3. 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
  4. 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
  5. 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
  6. 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."
  7. 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.
  8. Congratulations KAthy - well done on reaching your milestone - and the smile on your little one's face on her birthday must make it all seem worthwhile! You can't buy that! So glad you are with us! Macca
  9. Hi Matt - and welcome to BTG. Please stop beating yourself up about this. You are most definitely not a fraud. Your body has been through a major trauma and you need time to recover. It is a slow process and your body will be telling you that over and over again for a long time to come. Patience is a virtue! It is also a cause for concern that you think you can't see any scars and therefore that you should be alright - but the injury is internal and you CAN'T see it! To use an analogy, it is like looking a a car with not a scratch on it, without realising there is no engine in it and it won't go. At the moment you are that car!! So it doesn't work as you describe Matt - real life isn't like that! You will over time need to make adjustments and one of the biggest challenges for you now is to realise that something big has happened to you and that you will need to adjust. We all normally do this with age and maturity but in your case, as well as ours, you are now having to think about it due to a sudden event - your SAH. Once you get your head around that, it becomes easier to deal with. One thing you will perhaps need to do is re-evaluate what you do and see if you can delegate some things to others, relinquish some duties, go on less hours, train others instead of doing the job yourself and so on, ie pass on your knowledge to others etc etc. It needs a bit of thought and it sounds like you have a great employer - keep talking to them, especially about your treatment and limitations. Remember they can't see your illness so you need to keep telling them. Fatigue will be a bug bear for some time to come, and you will maybe have short term memory problems so start keeping a diary, make notes and keep referring back to them. Many of us experience these things and keep diaries, but although there are many things very similar, everyone's journey to recovery is different. In terms of your medical problems keep in touch with your medical team because we can't give medical advice - there's good reason for that - we're not doctors and we're not qualified - so go to the people that are! What we can do though, is recount our own experiences and provide you with support and advice on other matters that you don't get in any doctor's surgery. Feel free to come on here and share your experiences and someone will usually be able to answer. Have a look round the site by clicking on the main subject titles and lots of different threads will come up. Good luck Matt!
  10. Daff - well done on getting to this milestone anniversary! I've read your blog and there are so many similarities with my own story and I'm sure other peoples' too. There are a few things that leap off the page to me and they are perhaps things that are between the lines: 1) The suddenness with which the change is thrust upon us. It is one of the most difficult things to come to terms with and is like a blinding darkness in front of your eyes that you cannot see beyond for a long time. Then you start to adapt to the new you and find a resilience and creativity to do things you did before but perhaps in differing ways; 2) The hope and aspirations that we have, built within our souls, that are maybe hidden until this sudden event brings them to the fore that makes us carry on and appreciate the things we have a little more than we did before; 3) The love and devotion of those around us who helped us through our traumas and gave us the strength to get back up off the floor and battle on - because despite its ups and downs, life is worth it and our abilities to adapt and change are second to none. Well done Daff, what you have done in your time since the 'event' is truly amazing and I am in awe of you.
  11. Hi Tina, Hey - you came through it! I'm guessing that you didn't talk much to anyone before you went and this worry just built up unchecked until the bubble burst and all that emotion just came tumbling out. Always best to talk about these things rather than just letting them build up. It acts as a relief valve. Next time, come on here to express your fears before you go, not afterwards. This sort of stuff is what we're good at, because we've been there. We know exactly what you have gone through and it is the classic 'what if' worries - and guess what? We always think the worst and there really is no need. It's not daft or even irrational. It's what our body does to us, and that fear is us telling it back that we haven't forgotten it hurt us and we aren't going to let it happen again. Hence we build up this defensive tension and our reaction at the end is to tell it that 'I told you I wasn't going to let you hurt me!' Then the relief is palpable. It's a natural worry and not one to worry about unduly. It's not daft, or stupid, or anything to be embarrassed about. Those who haven't experienced it don't know how it feels and therefore can't empathise with us. They don't know what they don't know. It's hard to know how to react without that understanding that only the experience gives you. Thanks for sharing. It was a considerate thing for you to do and is an important message to others who share those worries. Now get back to getting on with living your life to the full. I wish you well. Macca
  12. Wow Mike -Just wow! I love your attitude, your grit and your perseverance! Well done indeed sir! Thanks for sharing this, I hope it gives inspiration, I'm sure it does. If anyone reading isn't up to this yet, just bide your time, with the right timing and the determination not to give up, we can all improve I think to our own level. The message here I think is just be the best you can be - but in your own time, it isn't a race! Macca
  13. Hi Diane, One of the things I noticed in going back into a pub (bar) was that alcohol affected me at a far earlier point than it did before. I became disorientated earlier and to be honest it worried me. Even now, 9.5 years later some beer is ok in moderation, but spirits are a no no! The second thing I'd like to say is that alcohol is a depressant and makes you feel worse in the long run. Being drunk exaggerates the stress you feel in your own mind, so I would stay away from it. Your imagination runs away with itself if you have nobody to talk to and you are drinking. Far better to stay sober and talk things through with a close friend or relative, or therapist if you have one. I have never yet found the solution to a problem in the bottom of a glass. In my humble opinion, the best way to get some answers is to start to try and think how you are going to tackle this problem and take it on. Be proactive, actively get help, don't wait for the answers to come to you. You have to go out and find them. They are there, you just have to embark on the treasure hunt, (the treasure being the solutions you seek) and make your life better through positive action, not passive surrender. If you must drink at all, do it in company and never on your own and do it in moderation. Best wishes, Macca
  14. Hi Sallios, Six months is still very early. Time is the biggest healer. it was two years before I started feeling even the slightest bit better. Take the time to reappraise what you can and can't do. You will revise it as you improve. Change has happened suddenly when previously it would have happened gradually with age. You can't turn the clock back but you can start to do things your way and control the future. Have a go at starting to think in a positive way. When things seem a bit negative, turn the flip side and think of it that way. It will start to allow you to deal with the changes. What you do will be in a different way - not better or worse - just different. There's nothing wrong with that! Don't beat yourself up about this, what you have dealt with is an ordeal that you have survived, so pat yourself on the back and start living in a more positive way. That is the best way to pay back the medical team that gave you a second chance, and the family and friends that supported you and continue to do. Good luck, Macca
  15. Hi Greg, Nice to see you back. I think you just need to take stock . You're doing great by the sound of it but you have to listen to what your body is telling you. Resting well is as important as functioning well. The 'rest' is your fuel tank, it just empties a bit faster than it used to and so you need to fill up more frequently. Also take things a little slower - remember the story of the tortoise and the hare? It's just common sense and don't forget, you are that little bit older now too, so manage your condition, don't try to beat it! Good luck sir! Macca
  16. Hi Del, Welcome to BTG. The one thing about this site is that we are all survivors. We've all been in that seemingly hopeless place, but have come through it. The statistics do indeed paint a rather gloomy picture, but there is hope. When I was first admitted, my family were told to hope for the best but expect the worst. I was in a coma. I had to have a lumbar puncture and they were going to give up on me but decided to get in a top, top, consultant to give it one last go. On the third attempt it worked. Without that, I probably wouldn't be here today. My aneurysm was an irregular shape and they were going to coil it but thought they couldn't do it. In the end, the lumbar puncture was done and I was coiled. If it hadn't been for that consultant, they were going to do an operation going in through my skull, and I don't think that would've been pleasant or as successful. I am now nearly ten years further on and in good health, generally speaking. Sadly there are no guarantees, but that doesn't mean there isn't any hope. You can only be there for her, and hope she has the resilience to pull through, and provide the support she needs now and will do in the future. I think it will be true of everyone who reads this, that we are with you and hope for the best outcome possible, and that everything that can be done is being done. I wish you and your Mum well, and please come back on and post again if we can be a release for your pent up emotion and a support mechanism by lending you our experiences of what it is like to go through a Subarachnoid haemorrhage. Best wishes, Macca
  17. Sarah, 98%-99% against 1%-2% odds are pretty good aren't they? You've probably got better odds than the risk of getting run over when you cross the road! I think you should just be happy with that for now and get on with your life. Some people must be walking around with bigger risks than that and don't even know it. I was advised to avoid head contact sports and other than that I've been ok and I'm 9.5 years out now! Well done Sarah! I hope some of those answers and our support have helped put your mind at ease somewhat. Macca
  18. Nice one Casey. I love well written poetry!
  19. Hi jenni, What a great bloke you've got there! A good man! Brains are complex and need time above all else. You will find that testing will probably continue until they do find and answer, and if they don't then you should keep pushing for one! One thing you will find without visual stimulation is that your audio stimulation will become sharper because your brain will be working to make sense of what you hear, rather than both what you see and hear. I've no doubt it is hard to adapt, but maybe answers are just round the corner. Patience is what you must learn at the moment. Even after these tests they may not know, you say. But then again, they may know, or be nearer to knowing - and once they do that, they may be able to find a solution for you. So again, try to look on the positive side. And next time your partner decides to do the school drop say "Wait, I'll get my coat" and go with them. Then you can walk back like you usually do - just take an umbrella with you! Don't let a bit of rain put you off! You will still have taken your daughter to school. And your partner will be impressed too! When you feel negative ask your self what the positive side is, turn things around to your advantage. I realise it is difficult for you at the moment but it will be better for you if you can see your way to try and change your mindset a bit. Maybe that won't be overnight, but doing small things successfully will start to help build your confidence. When you have set the ball rolling, momentum will build. Macca
  20. Hi Jenni, You sound a little sad today, but you are looking at the negative side of events. Have a look at the positive side and it looks a lot brighter. 1) You survived 2) You are still with us 3) You gave birth to a beautiful daughter. She is better with you in her life than without and that will always be the case. 4) You are the apple of her eye 5) You haven't let anyone down 6) Four months after a SAH is no time at all - recovery can take quite a time 7) What's wrong with walking to school and cuddling on the sofa? A Nothing. Your daughter will appreciate those times when she grows up, probably more than she appears to now! Nothing makes you closer than cuddling your Mum! Fantastic. 8 Don't dwell on the past - concentrate on the future, after all, you can't turn the clock back 9) Turn your activities away from purely visual ones for the time being, think about learning another language which you can do audibly, or listening to audio books, or learning a musical instrument. What it takes is determination and a positive attitude. 10) get your daughter to join in and help you. You can teach each other - activities you can do together. 11) You are the partner and Mum you always were -it's just another problem you've encountered. One thing you learn about after SAH is patience and that your body needs time to repair itself as best it can and for your brain to re-route. I'm sure over time things will get better. In my own case it was over two years before I started to feel 'up' again after having been 'down' for so long. But I got there and you will too. 12) Start learning to know what you can do, what you can do with assistance and what you can't do without help. It will alter over time, but doing this will in itself be a challenge, will keep you occupied and will make you feel more positive about yourself. Lastly, talk to people and try not to dwell on 'that night.' People are more receptive, I find, to helping you if they can see you are trying to help yourself rather than just waiting for things to happen. Involve and talk to your partner too who will appreciate your positive attitude and reassure you. Get a coffee group going and get talking to friends, you will be amazed at how much they will want to help you but were afraid to ask. So make the first move, that's all it takes. Get this problem by the scruff of the neck and tell yourself it isn't going to beat you, because you have a daughter who wants to see her Mum be the best she can be whatever the problem, because to her, her Mum is Supermum. And that's the way it should be! She loves you, so be the best you can be, nobody can ask any more of anyone than to try their best. Be under no illusions though. It may take quite a time for improvements to filter through. The doctors will do what they can, but you have to play your part too. There will be steps forward and maybe a few back with a few tears. That's normal. Don't be afraid to cry or be frustrated. No-one says life is easy. Life changes in one way or another for all of us. It's how you deal with it going forward that counts. Just keep batting and you will get through. Good luck. With that little girl behind you and with your partner at your side, what better team could there possibly be!? Nobody is an island. Nobody gets through life alone. Everyone needs help - it's just that now it's your turn to need it, so ask and don't feel one bit guilty about it. I wish you well Jenni. We've all been there, We know how you feel and well done for being so candid about the way you feel and for sharing it with us. Now we can help, so keep posting. Best wishes. Macca
  21. Mandie, I should have added that seeking help is not a sign of weakness as some seem to think. It is a sign of strength, that you have identified a problem and are seeking to do something about it. Karen is right, go and make that visit to your GP.
  22. Hi Mandie, Depression is a common factor after SAH especially if you were fit and well beforehand. The first question asked by many is "Why me?" Well, why not you? The answer is, brutal though it sounds, that it's irrelevant. It has happened and you can't turn the clock back. So a better question is "How can I recover and control my life going forward?" That's not to say you won't think about it, and I don't mean to sound hurtful, but better to dwell on what you can do than on something you can't no matter how much you might wish to. Yes, you've had a setback and it's very difficult in some circumstances to get going forwards again and carry with you some momentum. But far better to focus your mind and energy on that than searching for answers to a question no-one can definitively answer. In a sense, in my opinion, depression is akin to a bereavement - for the past you - and it takes some time to get over it. You may have some brighter spells and then relapse again. It may happen several times but eventually you come out of it to some degree and move on with your life. I suffered at the beginning, I can't deny it, but then I took a conscious decision to try and fight it. I think the things that got me through it were to ensure I kept talking about it and didn't bottle it up and let my mind run away with itself with vivid imagination, that nearly always makes it appear ten times worse. Also, I kept myself occupied as much as I could so I couldn't dwell on the depression or let it grab me. It isn't easy, and there are times when even this is not enough, but it at least minimises it whilst your brain is recovering. I hope there are some things in this that may help you, but I think the main thing for you to have is a confidante with whom you can share your issues. Also if it gets bad, then go and see your doctor and/or try to find some counselling. I am sure others will reply to you in due course. Doing nothing and hoping it will go away on its own is not an option. Be positive and proactive and do something before the tide of depression overwhelms you like the sea overruns the beach. Mood tends to go in cycles, I find and that tide will ebb and flow. Everyone needs help from time to time, after all that is why this group exists. Don't be afraid to ask for it, its your health and we all want to see you well and happy. Good luck. Macca
  23. Sarah, just allow extra time to get across the city - the main thing is getting yourself heard and the capability of the consultant - you'll be getting it from the horse's mouth, which is what you want and need. As for the location, that might just be where the consultant is that day, so I wouldn't read anything into that per se. At least they have found the time to see you. Don't forget to make that list of questions you want answering so you don't leave anything out due to nerves or bad memory! And don't stand up for obnoxiousness - give as good as you get! Remember, they should have told you all of this earlier, and it's probably because they know they've not done what they should that he has found the time! Good luck! Macca
  24. Hi Sarah, Well done for speaking up for yourself. In this day and age, it's a bit much not to expect you to do a bit of research on the net - why shouldn't you? The only answer to that can be is they didn't want you to know or cause trouble for them. In reality, what they should have done is told you at the time they found out instead telling you off. I would back up your complaint in writing if I were you, not just for yourself but to try and ensure others aren't in the same boat. And if the information per chance isn't correct on Google, then ask them to take action to have it put right. If it is right then they have no reason to be scolding you in the first place, unless they were prepared to give you the information in the first place. If they'd done what they were supposed to you wouldn't have felt the need to resort to the Net. Make sure you chase them up. Also copy them into a written complaint, then they know you are serious and hopefully they will fit you in. Whatever they do, make sure you keep making noises about it until they take action. ie make things happen and make them do their job. That's what I would do!
  25. Sometimes I think these guys just don't appreciate the angst they cause when they say things to each other, but don't involve you or keep you informed. I feel your frustration and I really hope they see you asap. Macca
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