Tony H

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.

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

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.

Thank you kindly for your messages Jess, Tina, Penny, Karen, WinB143 and Iola. You are right Karen that being able to share with others is so helpful - and without BTG that would be almost impossible for me because of where we live. Iola, you picked up on the pacing issue. It is something that I and others seem to struggle with. After 2 years I feel that I have experienced enough of the downsides of pushing on to know that on balance it is better to avoid going too hard. Sometimes when engrossed in the job, or whatever it is that I am doing, it is easy to not pay attention to how I am going. That is precisely when I should be focussing on the sometimes subtle and sometimes not so subtle signs (for me that is stumbling, having trouble concentrating, making mistakes, head pain etc). It all comes back to the advice that many wise folks on BTG give to new members about being kind to yourself. I was a bit slow working out what this really means. Best wishes Tony

Two years today since my out of the blue life changing event. Once again I am motivated to post on BTG just in case something I write is helpful to someone else. Like many on BTG I had unrelenting head pain and profound fatigue for a long time after my bleed. Other symptoms seemed important at the time but not now. The head pain is mostly at a low level these days such that I am only motivated to grab some analgesics when I have over done it. My head still does not feel normal, as best as I can remember normal, but how it feels is not dominating my day like it used to. I have not felt the need to sleep during the day for months. My capacity to work and just do the things that we do is probably at about 60% of my pre-bleed capacity. As many BTG'ers have said would happen, I continue to improve with time, albeit at a seemingly glacial pace. So what have I learned in the last 2 years? I have learned that it is ok to take life at a slower pace and not feel that every spare moment needs to be filled with doing something productive. And it is ok to just take some quiet time by myself with no music, radio, TV, computer or other noise or distraction to give my brain a rest. Also I have learned that pacing myself is better than trying to push on, and I am better now at spotting when I need to back off. If I overdo it I pay, sometimes for days, sometimes for weeks. And I have discovered that the medical profession is very caring and supportive but knows little about what to expect in recovery from SAH. Recovery is a long journey and one that requires careful listening to ones body, and brain. It is a unique life lesson for me to learn. And I have learned that there is nothing like BTG for people who want to find answers to the many questions that emerge at different stages of recovery from SAH. Most importantly I have learned that there are some wonderful, generous people on BTG who have a unique understanding of what we go through and I feel fortunate to have been able to join this community. I am so grateful for the support that I have received from BTG and for Karen's ongoing commitment to this website and all her friendly helpers who just keep giving. Best wishes to all.

Great post Iola, thank you. Getting used to the length of time that it is going to take to recover and having doubt about how well the recovery will go were really big issues for me. Also getting useful medical advice about what will happen has been a challenge. The advice that you received accords really well with my experience since my bleed in May last year. Best wishes Tony

Thank you for your thoughtful post Kris. Life post SAH is nothing like what I envisioned for myself pre-SAH and therefore it has been a totally new and unexpected journey. There are positives and negatives but I try to focus on the positives, and there are plenty of them. I find it truly remarkable that you have released your passions, but as a fellow SAH’er I can understand your reasons for doing so. Congratulations on reaching 2 years on your journey, and special thanks to you for sharing your experiences over the past 2 years, and for your willingness to support other BTG’ers. Best wishes Tony

Thank you for your warm and positive replies Mary, Karen, Momo, Win and Anne. I am constantly grateful for the time that people put into contributing to this site. And a special thanks to you Karen for your tireless efforts in keeping the site going - it provides a wonderful service that is so helpful to so many people. Best wishes Tony

Hi Sally It is really good that you have found this site so early in the recovery of your son's father as there is a wealth of information here that you will not get from elsewhere. Looking back to the time when I was 2 weeks after my bleed I was strongly of the view that I could and should just go back to normal everyday life but this was just not possible. My immediate thought for your situation is to seek out a good doctor to help with the issues that you mentioned in your post such as headache, sleeping problems and blood pressure. These things need to be sorted out otherwise recovery will be delayed and could lead to other problems if the are not controlled. If you can establish a good relationship with a doctor it will help greatly. This site will give you access to the experience of those who have worked through the multitude of issues that can emerge - and the people on here are always willing to help, you just need to ask. Best wishes Tony

I am motivated to post today, on the first anniversary of my bleed, not because it is a reason for celebration. I just want to let people know what has happened in the hope that my story is helpful to someone else. It is the stories and support of others on BTG that have been so helpful to me so I feel it is my turn to try to give back. The main reason that I went looking on the internet, and found BTG, was because my symptoms were persisting way beyond what the medical people told me and that is when I found out (thanks to BTG members) that what was happening to me is what happens. My search for information was at about 8 months and things were not going well for me and the frustration of not recovering as expected made me push harder which was, in hindsight, the wrong thing to do. My prognosis from the neurosurgeon was that I would be 100% recovered by 6 to 12 months. Well here I am at 12 months and I am probably at 50% but because I have learned from the experience of others I now find relatively little frustration about that. I now know that I need to manage my time better and look after myself more than I used to. In essence that means less time working and more time doing things that are really worthwhile and important, and that includes having more time with my wife and children. I still have my bad days, and quite frankly I am yet to have a day when I have felt great but there are many positives that have come from this experience and it is those positives that I prefer to reflect on. An example is one of our 4 children spontaneously said recently that she had never known me to spend the time with them like I do now. What a slap in the face I thought – but hey, I was a busy person, a very busy professional career with lots of travel, a cattle farm, an exercise fanatic etc. When I enquired further she said that I did make time for them but they always felt that they had to get on with whatever it was because I needed to go and do something else. So the bottom line is that I am improving more slowly than the medical profession advised but there are many changes that have occurred in my life that can only be described as good. I will just have to wait a little longer for some other things – or just move on without them. Best wishes to all Tony

Hi Bernie, Sorry that you and Ross are going through such a difficult time. SAH is a traumatic event for both of you. We too needed answers after Tony's haemorrhage and fortunately we found this site. (We found the Patient Experiences of SAH Video sums up people's experiences very well.) On the 16th May 2012 our life changed. Tony had a SAH and I have never been so scared in my whole life. We had at that time been happily married for 25 years with 4 wonderful children. Tony was a fit, healthy 51 year old and then the bleed. It was just a little bleed, they couldn't find it with all their tests. After 6 days in hospital he was given a medical certificate for a week so naturally we thought recovery would be quick. 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 although all around him could see. Finally we went to the GP. The GP was surprised that he had returned to work and gave him more time off and recommended a phased return to work. The panadol wasn't working well enough so she prescribed painkillers that could be used alongside the panadol and also help him sleep at night. She also warned us that depression was common after such an event and to let her know if we thought it was a problem. Over the last 10 months 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 you do too much you pay. He is now working 1 day a week and travelling 400km once a month for meetings. In January he had 4 days of meetings away and took some weeks to recover. The headache has never gone away but the intensity is less and the fatigue still stops him from doing too much. If he went back to work full time at this point his life would be miserable. 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 that this is of some help to you. Regards Jenny

Hi Gavin, welcome to the site. There is a wealth of SAH experience available via this site and lots of genuinely caring people who are willing to help. I'm glad you found BTG so soon after your bleed. There are lots of resources available as well and one that you may find worthwhile is a video of patient experiences which you can find in the forum 'Subarachnoid Haemorrhage Discussion', seventh thread down the list. And there is lots more that you can search for by entering key words for any issue that is on your mind. Best wishes Tony

Well the cold front has passed over last night and boy did my head pain fly up! Without having read about the effects of weather I would have been at a loss to explain the sudden change, and it was sudden. The pain escalated over about an hour to the highest it has been for weeks and is still with me this morning - is about 6.30 am here. Our brains really are very sensitive instruments!

Hi Teechur, the most significant cause of head pain and fatigue is when I do too much. The challenge can be knowing when to stop, and I am not good at that as my wife constantly reminds me:-D. As for weather changes, I can't say that I have noticed anything with that but then again our weather is pretty consistent here with relatively slow changes in barometric pressure. A strong cold front is due to cross over us tonight, the first one in many months, so it will be interesting to see what happens. Best wishes Tony

Hi Wade I could have written the same story about myself. I tried to go back to full time work a few weeks after my bleed which was way too soon. I was unable to do a full day without falling asleep and my head pain escalating significantly so I took the doctor's advice and stopped work for a few months. The pressure, fuzziness, hangover feeling is exactly how I try to describe what is happening, and the constant ringing in one ear is also the same for me. I have tried to get back into my fitness training but it is a slow road. I managed 4 days in a row a few weeks back but crashed and had to take 3 days off. The message for me has been listen to my body and don't push too hard because it does not work, i always end up paying. My advice is be kind to yourself and be patient, and try to enjoy the good things that come from your current circumstance. Best wishes Tony