Tony H Posted May 16, 2015 Share Posted May 16, 2015 It seems a long time ago when my brain sprung a leak but my memories from that day, the days in hospital afterwards, and at home recuperating, are still very strong. I had no concept at the time of a long term recovery. In fact I thought 'no problem, I'll push through this' and get back on with my life like nothing has happened. Wrong, very wrong. I don't think anyone told me that a long recovery was going to happen, or I wasn't listening if they did, but I certainly wasn't prepared for it. Here I am three years later and my life is definitely not the same as it was. But actually I think the positives now far outweigh the negatives. The bleed was an unwelcome circuit breaker for our lives but about a year or so down the track my attitude changed. I found it much better to focus on what I do have rather than what I don't. And I am much clearer about what is important in life and what isn't. One valuable asset that I didn't have pre-bleed was time because my life was so jam packed. Soon after the bleed I had time because my doctor told me to stop work. I wasn't coping due to the head pain and fatigue but was just pressing on. Bad move. However I don't think I knew what to do with the time at first. And that is understandable in the sense that I was still thinking that I was dealing with a short term problem and therefore I would be back to 'normal' in a few days or weeks. And maybe that is how it is for some but I would be surprised if that is the case. So if I had the opportunity to plan my recovery and do it again from scratch what would I change? I would teach myself to get to know my boundaries and remove all those things that have a negative impact on my recovery. And I would reflect more on who and what are most important in my life and put more energy into them. And I would more quickly accept the hand that I was dealt. And I would learn to say no. Yet again I can confirm that the wise counsel of our experienced BTG'ers is, perhaps unsurprisingly, spot on. Key for me are the messages to be kind to your brain, listen to your body, and pace yourself. I was slow to learn what these messages actually mean but the sooner one works that out the better. My recovery is a work in progress and I expect that there is more to come. But if this is as good as it gets then I am fine with that too. I figure that I have little to gain from stressing about it. Best wishes to all on BTG, especially to Karen and her band of wonderful helpers. 14 Quote Link to comment Share on other sites More sharing options...
subzero Posted May 16, 2015 Share Posted May 16, 2015 Hello Tony- I have been a carer for four years- and see so much value in your comments after three years of dealing with your own recovery You have a lot to offer others who find this site after having a SAH. It`s great to see how you faced up to the challenges- realising that there would be no quick-fix- and tackled them in a way that ensured you gave yourself every chance of the best recovery possible- You have done very well- keep strong Great to get that positive up-date 3 Quote Link to comment Share on other sites More sharing options...
Tina Posted May 16, 2015 Share Posted May 16, 2015 Hi Tony Happy 3rd SAH Anni-versary ! Thank you for posting such a positive update It is great to read how well you are doing and your positive out look is an inspiration. As Sub has said so well in his post above , "It`s great to see how you faced up to the challenges realising that there would be no quick fix and tackled them in a way that ensured you gave yourself every chance of the best recovery possible" Be very proud Tony ! Hope you are doing something nice with your family to celebrate. Take care and look forward to hearing more from you with your on going recovery. 2 Quote Link to comment Share on other sites More sharing options...
Karen Posted May 16, 2015 Share Posted May 16, 2015 Happy 3rd Anni-versary Tony! Enjoy your day! ....A fabulous post to read! Keep well. xx 2 Quote Link to comment Share on other sites More sharing options...
Winb143 Posted May 16, 2015 Share Posted May 16, 2015 Hi Tony, As all the others have already said it, I will follow suit. Welcome back to BTG and it has helped me and my Daughter so much. All the best to you and your family Winb143 x Take care and sing even if it's off key, only happy songs ! 2 Quote Link to comment Share on other sites More sharing options...
Chelle C Posted May 16, 2015 Share Posted May 16, 2015 Hi Tony, I loved your post, it has given me a lot of hope as have many of the other BTG`ers I am coming to my 1st anni-versary on 8th June. Like you I have tried to hard to get things back to normal and suffered for it, I have now learned to know my limits with the help of all at BTG, to listen to my body and brain. It is still early days for me or so I am told so I just take it one day at a time, Happy Anniversary Michelle 3 Quote Link to comment Share on other sites More sharing options...
Louise Posted May 16, 2015 Share Posted May 16, 2015 Hi Tony great to read your post, happy 3rd ani-versary. 1 Quote Link to comment Share on other sites More sharing options...
SarahLou Posted May 16, 2015 Share Posted May 16, 2015 Hi Tony, Such an inspiring post, thank you. Happy 3rd Anni-Versary, I hope that you do something nice to celebrate. Take care, SarahLou Xx 2 Quote Link to comment Share on other sites More sharing options...
subzero Posted May 17, 2015 Share Posted May 17, 2015 Hello Tony I would find it interesting as a carer if you could comment on how your family and friends coped with your SAH recovery over the three years- From your profile photo I am sure your family were also faced with a very challenging time as they experienced your recovery first hand and tried to help as best they could. Many years ago I got as far as Bali with my wife and daughter - but never reached the Aussie coastline ! 1 Quote Link to comment Share on other sites More sharing options...
Macca Posted May 18, 2015 Share Posted May 18, 2015 Hi Tony, Brilliant post! I think you found out, as many of us have, that you have to find your own ways to change and improve! Sometimes that's a case of trial and error. It's also sometimes a case of being in denial until you realise that you really do have to start thinking differently, and listening to your own body, to when you were pre-SAH. I'm retired now, but I often think back to when I was at work. There was a system in place that many companies now adopt, called continuous improvement, and I think I have to make that apply to my health now. Find out what you can do, and learn from what you can't, delegate when you can to alleviate pressure and take time out for yourself. A word of caution though - our system was taken from a motor company's system known as 'LEAN.' By making 'efficiencies' the motor company ended up recalling millions of cars for faults with braking systems, air-bags and such like. So make changes to your lifestyle carefully and, where necessary, get medical advice from your doctors before embarking on any physical activites. I wish you well. Macca 6 Quote Link to comment Share on other sites More sharing options...
Daffodil Posted May 18, 2015 Share Posted May 18, 2015 Tony. Keep being kind to yourself and enjoying each day. Well done. You've come a long way and it's great to hear from you and your progress 1 Quote Link to comment Share on other sites More sharing options...
Teechur Posted May 19, 2015 Share Posted May 19, 2015 You're right behind me Tony! So glad you're finding your way. This is such a strange journey to navigate and most of us aren't given a broken compass, much less a map or guide! Sometimes I wish my doctor would tell me to stop working because I am EXHAUSTED! But I keep keeping on and I love my job... 2 Quote Link to comment Share on other sites More sharing options...
rob.com Posted May 19, 2015 Share Posted May 19, 2015 tony, brilliant post,so true rob 3 Quote Link to comment Share on other sites More sharing options...
Tony H Posted May 19, 2015 Author Share Posted May 19, 2015 Dear Sub Zero and Wife, After reading your posts I can see that you have gone through some very difficult years and we are so glad that you found BTG as there is so much help and support available here. On the 16th May 2012 our life changed. Tony had a SAH and I have never been so scared in my whole life. At the time of Tony's SAH we had been happily married for 25 years with 4 wonderful children. Tony was a fit, healthy 51 year old who also worked 60+ hours a week in a high level position. He had never been sick and was always reluctant to see a doctor. He spent 6 days in hospital and on discharge he was given a medical certificate for a week so naturally we thought recovery would be quick. (He had a non-aneurysmal SAH, and didn’t require surgery). He went back to work and tried to push through the headaches and fatigue. He wasn't sleeping well at night and was falling asleep during the day. It wasn't easy for him to admit he wasn't coping despite him having difficulty finding the right words, making mistakes and stumbling when he was tired. We went to see our GP who was surprised that he had returned to work at all and gave him more time off and recommended a phased return to work. The paracetamol wasn't working well enough so she prescribed other pain killers which also helped him sleep at night. SAH is a traumatic event for both of you. We too needed answers after Tony's haemorrhage and fortunately we found BTG. We initially just read posts and after some time Tony posted his story. The support we received was amazing. Even though Tony was the BTG member I spent just as much time on the site as him. It was what we learnt from BTG'ers that really helped us understand what was happening to us. We found the Patient Experiences of SAH Video sums up people's experiences very well. How did we cope? I can't say that I have really thought about this, initially our focus was getting Tony back to "normal". He was not used to being unwell and therefore tried to push through. Over time we came to the realisation that we had to accept that he may not recover 100%. We were thankful he did not die and that he continues to improve albeit at glacial speed. During the last 3 years we have learnt that we need to measure each day with activity, rest, sleep and medications. That you have good days and bad and if he does too much he pays. He is now working 4 days a week and is doing a less demanding job within the same organisation. He is happy with these hours and has no desire to go back to full time work. We are leading a slower paced life these days, we have accepted the hand we have been dealt and go about our lives in a more balanced and gentler way. When our children were asked how their dad's SAH affected them, they all answered independently that before the bleed he was always very busy and now has more time for them. One said that she no longer feels like she needs to make an appointment! J We have learnt to be patient as the recovery is slow but we are heading in the right direction. We feel for you both and hope you can move into happier times ahead. Regards Jenny 8 Quote Link to comment Share on other sites More sharing options...
Winb143 Posted May 20, 2015 Share Posted May 20, 2015 Good post Jenny, We do have to lead a much slower way of life, and at my age it's good for me. (old wrinkley) ha. I like who I am now and I am so happy to be alive. Life is good and we are the lucky ones, I know it is hard for our Families when at first we are ill and Thanks to all of you xx You must go through the Mill when you see a Loved One so ill, I know my Family went through the emotional ringer. I wish you and hubby well and all the happiness you both deserve. Keep smiling and a song wont go amiss xx Best Wishes to You All Love Winb143 xx xx I know this was for Subs but he is used to me butting in lol xx 2 Quote Link to comment Share on other sites More sharing options...
subzero Posted May 20, 2015 Share Posted May 20, 2015 (edited) Hello Jenny and Tony Good Morning from sunny Scotland- Many thanks for your post Jenny- it is good to see that your family have tackled the trauma of SAH with a positive attitude and accepted that there are areas where it is better to work round rather than oppose- I am glad to see that Tony is accepting the changes to his busy work-life and is moving on with his life- and the family are pleased to be seeing more of Dad ! Having said this however- you two like us are in our fifty`s- It must be a much different psychological challenge to let SAH change your life- when it happens to someone in their twenties-thirties and forties- with younger families and perhaps more demanding financial and social commitments- Each circumstance can be so different- The role of BTG for both of us has been so important- it does seem to be a widespread issue that the after-care information is totally insufficient when SAH patients are discharged- I wish you and your family well as you continue your journey- Edited May 20, 2015 by Daffodil Off topic conversation moved to green room re Forum rule 9 4 Quote Link to comment Share on other sites More sharing options...
Daffodil Posted May 20, 2015 Share Posted May 20, 2015 Even though Tony was the BTG member I spent just as much time on the site as him. It was what we learnt from BTG'ers that really helped us understand what was happening to us. We found the Patient Experiences of SAH Video sums up people's experiences very well. During the last 3 years we have learnt that we need to measure each day with activity, rest, sleep and medications. We are leading a slower paced life these days, we have accepted the hand we have been dealt and go about our lives in a more balanced and gentler way. When our children were asked how their dad's SAH affected them, they all answered independently that before the bleed he was always very busy and now has more time for them. J[/ Jenny and Tony. Great to hear it's helped you both to connect to people treading a similar path. That acceptance of the change is hard for all but once found it makes enjoying the benefits of different balance and perspective so much easier. I am so pleased for you both. Keep on keeping on and smiling. Sub I was 39 when it happened and yes it's hard with the demands that age of our life brings but I think the impact of enforced change is hard whenever it hits you whatever age. like Tony's kids mine now agree I have more time for them which they like and they in turn are more understanding and helpful so there is progression and improvement to more than just my health So to all reading earlier in their SAh footsteps. Take heart. It gets better. We learn, we adapt, we accept and we sing! 4 Quote Link to comment Share on other sites More sharing options...
Macca Posted May 21, 2015 Share Posted May 21, 2015 Change is inevitable in all walks of life and at all times of life - it's how one deals with it that counts - especially when it drops unexpectedly at your door! Good luck everyone! Macca 2 Quote Link to comment Share on other sites More sharing options...
kpaggett Posted May 21, 2015 Share Posted May 21, 2015 Congratz on making it! This made me think back to when someone was trying to get me to measure my recovery from when the Bleed actually happened, instead of how my mind/body was before the event. There was no way I could handle this right in the beginning. Now, it is way easier just like what you wrote looking at what you can do more of now than in the last few years. Time is definitely our friend isn't it? And yet, we all want our recovery to happen so fast fright at first. Looking back, it gives us a good lesson in patience, persistence, and how to balance the two. I'm so happy for your 3 year mark and still seeing improvement. I think it is inspirational to have posts like this for everyone that comes after. ~Kris 6 Quote Link to comment Share on other sites More sharing options...
Tony H Posted May 22, 2015 Author Share Posted May 22, 2015 Thank you to all you lovely people for your generous and thoughtful posts. It wasn't until I joined BTG that I took what was a brave step for me - to post publicly about what is a very personal journey. Perhaps it is a man thing but it was a hurdle that I had to jump. Going public with thoughts and feelings is not natural for me and it made me feel vulnerable. This was at odds with the perception that I have of myself as the rock of the family. All of sudden I was the one needing help and I was putting that out there for all to see - on the internet of all places! But the rewards that came from that were amazing. The compassion, understanding and helpful advice were like nothing that I have experienced before. My anniversary posts force me to do a bit of reflection that I would otherwise not do. They give me a record to look back on but most of all they may help someone else who is suddenly wondering what the hell is going to happen to them. The generosity of the BTG community constantly amazes me. If there is anyone out there who is reading these posts and is reluctant to put pen to paper so to speak I would encourage them to tell their story. Best wishes, Tony. 4 Quote Link to comment Share on other sites More sharing options...
Winb143 Posted May 26, 2015 Share Posted May 26, 2015 Lovely post Tony H, This site does make you feel so much better, we are not alone on here, as it has effected us all in one way or another. (always mix up affect and effect). Thinking time for me xx Clever Karen knew what was needed when she started this site!! I cannot imagine my life without a look into BTG at least once a day, guess I'm hooked and you lot have me for life !! No crinkling noses now !! I think all on BTG are Great !! and a Big thanks and Tony hope to see you and Jenny in here in 3 years or sooner, no appointment needed. Love to us All Winb143 xx xx 1 Quote Link to comment Share on other sites More sharing options...
iola Posted May 27, 2015 Share Posted May 27, 2015 I cannot tell you how much I need to read these posts. I do understand, as we all do, how hard it is to go back to the life you had. I honestly do not think you can. You can try and work extra hard to be the person you once were but I think it is impossible to be that person 100%. At least it is not doable for me and believe me I've tried. I work and on the go quite a bit but there are times my body literally cannot take any more and a fall out and sleep. When that happens I cannot wake up. I've never been so tired in my life when my body shuts down like that! It's the knowing and the accepting that is hard. I still fight it. Iola 1 Quote Link to comment Share on other sites More sharing options...
Chelle C Posted May 27, 2015 Share Posted May 27, 2015 Hi Tony, Before my SAH I was the carer, looking after my partner who has a serious heart condition. He found me unconscious at home when I suffered my bleed. I have found it really hard to come to terms with him having to look after me, He has been fantastic and I don't know what I would have done without him, I have always been the strong one in our relationship, Now though I have to accept that I am no longer able to do what I was doing. I do what I can when I can, I have also learned to say "NO" where before this it would always be "YES" We are adapting our lives to suit the situation we find ourselves in but its been a hard 12 months for us both. I have found that I have gained so much support from the people on BTG Its just nice having people who can connect with how you are feeling, Your post has certainly given me hope for the future, I wish you and your wonderful wife and family well. Keep smiling Michelle 5 Quote Link to comment Share on other sites More sharing options...
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