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Macca

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Macca last won the day on December 14 2017

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About Macca

  • Rank
    Super Moderator

Profile Information

  • Gender
    Male

Converted

  • Biography
    60 yrs old. Two grown up sons, three grandchildren, two boys and a girl. Got married in September 12 to Sandra. Played for Oldham Athletic in early 1970s. Thankful to have found this site. Visited Hawaii and Pearl Harbor in 2003 to fulfil one off my wish list.
  • Location
    City of Salford UK nr Manchester
  • Interests
    Football (soccer), reading, finding out about SAH, Spitfires, sailing ships
  • Occupation
    retired 11/4/2014
  • SAH/Stroke Date
    1/9/2010 L Ant comm- coiled

Recent Profile Visitors

1,133 profile views
  1. My daughter in law had a shunt and I remember the doctor telling her once that a while after it is inserted the body can adhere to it - as if it is healing around it - so that it sticks and gives a pulling sensation. As usual if there is a problem the advice is to go and see the doctor or the team that put it in.
  2. Hi, I think allowing your family to read some of the threads on here may give them some understanding of what you have been through. There appears to be no such thing as an easy brain injury. Recovery time - even when you make a good one, is notoriously slow in happening. It takes a long time and improvements are slow and happen in their own time, not the one you want them to.! The change happened to you suddenly whereas under normal circumstances, it happens over a period of time and you adjust to it as it happens. In this case, though the changes have happened abruptly and caught you unawares and you are having to deal with them whether you like it or not. Change has happened and you can't turn back the clock. But you can shape your future. That is what is making you emotional and I think we've all gone through that to a greater or lesser degree, so don't beat yourself up about it. It's natural and you are on your own individual journey. All we can do is try to prepare you for some of the things that happen along the way. So try and dry your eyes, take one thing at a time, slow down and do things in your own time. Some things will come back to you, others may come partially and others won't come at all, but what happens then is that you become creative and find another way of doing them. Do things now for yourself, not others. let them look after you for a while. You've earned the right to get better, you survived. Let others give you that chance and you just concentrate on getting better and recognise new or different opportunities when they come your way. Good luck.
  3. Macca

    New - Reassurance Needed

    Hi there, It seems to me there is a subconscious theme going on here and that is trying to get back to something that resembles 'back to normal,' without either of you actually saying so. That isn't likely to happen for some considerable time and perhaps you should engage a new normal which has different facets to it, but which you can engage with both mentally and practically. Re-appraise everything and make some changes that will benefit both of you. Your wife's priorities have change at the moment. She suffered such a blow and her main focus has to be on recovery that can take a long, long time. Apathy, irritability, indifference, and other such words, describe emotions we have all felt after SAH and for her, they have a different significance than that you attach to them. This is a difficult time for you both, but your wife needs the time and space to recover in her own time, not the time you want her to recover in. It doesn't work like that. Her brain is currently re-wiring itself trying to find new solutions to old problems or to deal with new ones that weren't previously an issue. Keep talking to her, keep the lines of communication well and truly open, be patient and encourage her to describe what causes her concern and find solutions together. Implement them only when she agrees that the suggested answer is the right one and she is ready to tackle it herself. If you try to get her to do things too soon you will only breed resentment and rejection, so slowly, slowly, patience is the virtue here.
  4. Hi Mandy, I was coiled in 2010. My groin area was very sore after my coiling and I still have some difficulty kneeling down and getting back up again. They went in through my groin. It's also difficult pulling my socks on in the morning and many a time I had to roll around on the bed to achieve it. Thankfully I'm not quite as bad a I was and as I am getting older too I fear it's not just the SAH repair procedure that has caused me to be this way. Maybe a trip to your physiotherapist would be a good idea who could give you some ideas on mobility exercises that could help you to stretch those tendons a bit more with less discomfort. Keep trying, don't give up. I'm sure you will improve over time, just grit your teeth, dig in with the effort of your exercises but don't start until you have seen your doctor or professional medical advisors. As for your friends and family, why not tell them what you've just told us! we're all at least a little different after SAH - it's how you deal with it that counts. You need to change a little too, to adapt to the change. Be flexible and move things around a bit and learn to cope with it in a different way. Might not be as good as before, but you will be better than you are now. Worth a shot isn't it? Best wishes, Macca
  5. Macca

    My experience

    Hi Mandy, Welcome to BTG. I struggled with this kind of issue early on in my recovery. I had to sit down and reappraise who I was and what I was doing if my life was to become bearable again. It was something somebody said to me off the cuff about life being full of opportunities. Somehow it kind of resonated with me and I thought long and hard about that sentence. I thought about how I was before, how I am after, and lastly how I can learn to live with this sudden change that has been thrust upon me without any warning. Usually change happens gradually as you get older and you seamlessly learn to accept it. In this case the change happened in an instant. The first thing to do is to learn that this event happened, and much as we would like to, we can't turn back the clock. So look forwards and think' how can I be the best that I can be?' Be honest with yourself, and accept what has happened and learn some coping strategies that help you deal with it. There are numerous strategies, some will play a greater part than others, but that depends on your own circumstances and how you feel about them yourself. If you try one and it isn't working, change it for another, be flexible. For instance, if someone annoys you, avoid them, or sit them down and explain to them what has happened to you so they may adjust their behaviour, rather than you always having to adjust yours. If you work and your job is stressful, change it, or reduce your hours or delegate the work to others. Sit your husband down in a good moment and have a heart to heart with him. He may not fully appreciate what you are going through. Show him this thread if you like so he can gain some understanding that you are not kidding and that there are others just like you to whom this has happened. The problems won't go away unless you confront them, one by one if necessary, when you are up to it. If you don't change something then matters won't improve. What's the old saying? "If you always do what you always did, you'll always get what you always got" That's the same answer! One of the biggest problems is usually from lack of communication - and thus lack of understanding. When people understand, they change their behaviours and usually try to do their best to be helpful. If they don't then maybe they are not the best people to have around you in your life. No one is saying this is easy, but it can be done to a lesser or greater degree and it doesn't happen overnight, but I am living proof that you can learn to live with these kinds of issues, with patience, perseverance and support from those closest to you. But you have to let them in by talking through your problems with them. Don't lock them out because these are the same people who can help you climb the ladder back to an acceptable and quality life again. I am nearly eight years out and my life now is much better than in the early days. I find it is as much about the way you think about things than about what you actually do. Try and turn negatives into positives. When something happens think about the opposite. You can still achieve things, maybe not as quickly but if you walk rather than run, you still get there in the end! Good luck, let us know how you are getting on, and if you can't talk to those near you then talk to us, but talk, don't bottle it all up. All those emotions of yours are natural, there's nothing to beat yourself up about. Most of us have had them and we continue to do but accepting the the event happened goes a long way to starting to find solutions that work for you.
  6. Hi Valene and welcome to BTG! You might have realised by now from reading other posts that we can't give medical advice - because we are not doctors. There will be someone who has had similar issues to you and will post in due course to give you details of their experiences. The best advise is to go back to the medical team that treated you and ask them. You are still very early in recovery terms. Rest is very important for you as your body recovers from this event - and it will do it in its own time, so don't beat yourself up about not trying to bounce back too soon. Bleeds probably are 'small,' in relation to bleeds elsewhere in your body, but that does not diminish the seriousness of a bleed in or around your brain. Good luck Macca
  7. Hi Kiwi, Thanks for the updates! One thing I would advise is that you read the leaflet that comes with your tablets and make sure you understand what they do and what the possible side effects are so that you can recognise them. Another thing I would do is ask your doctor how they interact with any other tablets you may be on, as the effects might be different or might change. If you notice anything unusual go back for further advice quickly. Glad you appear to be in the up and up! Best wishes, Macca
  8. Just to give you an idea, DWP is currently losing between 65%-70% of appeals and it is imperative that you do turn up because sometimes DWP don't turn up and it is more likely the tribunal will go in your favour if they can actually see you. Make sure you get your appeal in with in the stipulated time limits or they will simply say you are out of time. If you need more time to get your facts together or to collect your evidence together, say you want to appeal and that your reasons/evidence will follow in due course and get them in as soon as you can. Good luck.
  9. Macca

    Struggling

    Hi PJ-ND, Thanks for posting again and giving your insight. It's clear that you are learning to 'manage' the way you tackle things these days. On good days it is tempting to cram as much in as you can, but as you (and me) have learned, there is a price to pay for that, and that is the recovery time and the way you feel, sometimes for days afterwards. I think the key is to do what you can, but underplay it rather than overplay it, so that you can repeat it, rather than suffer for it. The key is to build up what you can do slowly, even though it is tempting to cram in as much as you can the first time you feel able. You are still recovering - listen to your body, recognise it, and get used to what it is telling you and take heed of it. You are right about the invisibility of your injury - so make sure you keep telling people about it. If you look at two cars parked on the road - which is the one that isn't a runner? You can't tell until you try to start the engines! I'm glad you recognise the improvement in yourself - that's important - and you will continue to improve, albeit some of those improvements will be subtle, but they will be there! Good luck and best wishes PJ - yours is an inspirational post and an example that improvements take time and patience. Thank you, Macca
  10. Hi Jan, Congratulations - three years must have seemed light years away to you just after your SAH. Look at you now though, married and bouncing around full of beans! Just go back and read that post above. It's a million miles away from the posts you wrote in year one. You've come on a ton, because you persevered, sought help - and received it. You listened and learned. Well done - and just look at you now! You are bright and bubbly, yes, you have the odd down moment, but the up moments are outnumbering them by far now. It wasn't like that at the beginning! Abandoned and isolated? By whom, Jan? Are they really your friends? Just stop there a minute and think! Despite all that, you have come through it all, bigger than them, stronger than them, and you are all the better for it. You may have to come into contact with them so be polite, smile and then get on with things, but don't let them drag you down, just cast them aside and move on. If they don't want to be along for the journey, go without them. Depend on yourself, and those who love you and you won't go far wrong. Lovely lady, as Tina says, you are doing just great and I doff my cap to you. A tough time and you came through with flying colours. Just brilliant! Macca
  11. Macca

    Ups And downs

    Hi, There is absolutely no doubt in my mind that you have overdone things. Brain injury is a traumatic experience to go through at the best of times and it hits at the very core of your being. Being able to do as much as you did so soon after the event is a very rare thing indeed. Your body has told you it's had enough and needs a break and if you overdo it again, it will react in the same way. So learn from what has happened, re-analyse what you are doing and slow down a bit. Learn to say no and to delegate. Give yourself a chance. If you always do what you always did, you'll always get what you always got. Never truer than with a SAH! (I don't mean SAH will happen a second time, just that your body will react to doing too much, too soon) If somebody hit you over the head with a cricket bat, you wouldn't just expect to get up and carry on as if nothing had happened, now would you? So in this case, the SAH is the cricket bat and it's just walloped you. So give your body a break and slow down while it recovers from the blow. Keep talking to your medics and your employers. They all treat you much better if you keep talking to them! Good luck, Macca
  12. Hi Curt, The thing to remember about SAH is that recovery is a slow and gradual process - in your wife's own time and not the time you want her to recover in. So, patience is very much a virtue in this case! Do things when your wife is ready to do them and like Chris says - do things at a gentle pace and stop doing them if she needs to rest. What you can't do is go to sleep at night and then next morning expect everything to suddenly be alright again. It doesn't work like that. Recovery is not a 100 metres sprint, it is a marathon, done at walking pace! Good luck. Macca
  13. Macca

    Struggling

    Hi Nikki, Five months post bleed is next to nothing in recovery time from a SAH. Your body has taken a big hit and it needs plenty of time to recover. Don't beat yourself up about it. If they are old enough tell your kids what's wrong when they are a little quieter. They can't see your injury so you need to tell them what it is. They may feel hurt or rejection when they can't tell you things at certain times, so tell them it isn't because you don't love them or aren't interested, it's just you aren't up to it. May be they can tell you later, or the next day. But they need to know so they can understand. That will also take some of the worry away from you, as well as them. Communication is a two way thing remember! Tell the neurologist how you feel, write down any questions you have and ask them rather than come away wondering. They are there to do their best for you and you have an expectation and a right to expect that from them. If they are not then tell them - be assertive without being angry or emotional if you can, but they need to know if they are letting you down in some way. Your perception is important as that is the image you take away with you and tell others about, so it should be important to them. Keep your chin up. You are a survivor. You won the lottery ticket of life, but you need to recover at your own pace, not that of others who want you to be back to normal, whatever that is, as soon as possible. Keep telling them also that your injury is internal, and however normal you look on the outside, it is very different on the inside! Good luck! Macca
  14. Macca

    headaches and fatigue

    Hi Mandy and welcome to BTG. Yes, you are doing it right, and you have come to the right place. We can't give you medical advice for the simple reason that we are not doctors and we are not qualified. Everyone's condition is different, so we leave that to the professionals. However, we all have the SAH experience and others will be along soon to pass on their knowledge and experiences soon, no doubt. Make a list of questions for the next time you go to hospital and ask them. Don't be afraid or shy, it's what they are there for. And we will add our experiences too. GP's are what it says on the tin - general practitioners. You need to ask specialists - ie the team at the hospital that treated him. We are here all the time so come on here when you need to and we will do our best to help you as best we can - once again welcome aboard! Macca
  15. Useful to know Daff, thank you. I have temperature sensitive medication (growth hormone - my body no longer produces it after my pituitary gland was damaged in the coiling after SAH. If I don't have it I get extreme fatigue) that has two ice packs that keep it cool. Manchester Airport has caused me more problems than anywhere else in the world on going through security. Even when I explain as I approach, they have opened the pack as it goes through the x-ray and then left it open until they are ready to swab it. This can take several minutes during which time my medication is open to the ambient temperature. I have a letter from the NHS explaining but it makes no difference to the security people. I always complain. I have no objection to the security measures, after all, we all want to be safe. It's just the way they do it that irritates. All I ask is that they undo the zip at the relevant time and do it up again when they have done their action. On one occasion they separated the ice packs from the medication and I went nuts at them and demanded the supervisor. They clearly did not understand the significance and I had to explain my medication would be ineffective if it was allowed to go above the require temperature. That would mean them having a potentially unconscious person on their hands when there is no need for it to happen if only they would listen. I always put my complaints in writing when I get home but I still have never had an answer and the procedures remain the same and I continue to get angry when I go away.
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