Macca

Thanks WinB143, how about "I get knocked down but I get up again?" I'm home from work again and my submarine is off the bottom but not at the surface yet. Working actually made me feel better about myself but it's a double edged sword because it has exhausted me and I need to sleep. What would I do without you people on this site? The level of understanding is such a comfort and is higher than even friends and family because you have also lived my experience and really do understand how it feels. Thank you so much. I'm sure I'll be better again in the morning. Hope everyone else is feeling ok too by then!

Well Alikins, Today is not a good one for me. I wouldn't normally post when I feel like this, but your message rankled with me somehow. Just so you know you are not on your ownand that life goes on no matter what, today I've been hit by a wave of depression and the submarine that is my brain is already sinking from the light into the ascending gloom. It's cold and dark and wet, unrelenting and crushing..............................................the submarine, looking sleek on the outside is a mess of despair on the inside and no-one can see it but me. I need to blow the tanks and re-surface but it may take hours for this to happen. In the meantime I must tell myself it will all be alright........and it will be because tomorrow will be another day and my mood will be different. Right now though, it is hard to visualise and I have to go to work. I hope talking and working will lift me, I have to hope that it will. Right now I am on the seabed, waiting for the engineer to work out a way to get off the bottom. It is the best analogy I can think of. Enjoy your day whatever you do, I will be alright. I'll post later to let you know how I feel then. Macca

Hi Michael, Why don't you write one? - sounds like good therapy to me (get things off your chest etc) and would give good information and support to others in the same boat - do it at your own pace etc no pressure. Just a thought! Macca

Hi Dawn, If in UK, you can try to get them to release information by requesting its under the Data Protection Act 1998. They are the Data Holder - you are the Data Subject - so you make a 'Subject Access Request'. This might not do much for relations though if you try to force their hand!! However, if they have nothing to hide what is their problem? They should perhaps be trying to help you, not hide things away! Best wishes Macca

Michael, minimise risk and wear a safety helmet. Good luck! Macca

Lisa, I think everything's been covered in the previous posts but I'd just like to add my own best wishes to you in your recovery - your mood swings are a natural part of this but it does get better over time - just hang on in there and keep talking to people so they understand - you are the same body with a slightly different engine at the moment but you will win the race - keep believing - good luck macca

I think reading all of these threads makes you realise you are not alone and that a SAH can have many different effects on the body although there are several common and recurring themes. I had my SAH in Sept 2010 and fatigue is still my biggest problem. As in other replies, I think you have to ignore feelings of guilt or embarrassment at going back to your doctor - after all, this is your life they are playing with and it is not to trifled with. You know your own body best! What I would suggest, as others have, is to keep a diary of how you feel from day to day - hour to hour if necessary including the following: 1) How you feel now both mentally and physically [record sleep, depression, therapies, work pressures etc] 2) How it is affecting you now 3) How you felt before your bleed 4) What is different from then to now [ie measure the impact on your life, treatments,drugs required, support from family members friends etc] 5) Anything else you think might be relevant In this way you can quantify what is wrong/different - show it to your doctor - it is easier than trying to expain it or remember specifics in a 10 minute doctors appointment. Before you can successfully treat your problem you have to fully understand what it is, from what you say I don't think you do yet, at least not to your own satisfaction. You sound like such a giving person with a conscience, it's time for others, inparticular the medics, to give something back to you for a change. Get back there and demand more answers and don't let them fob you off - you are not a nuisance, you are a precious life with so much more to give, so do it to help those around you and most of all, for yourself. If you upset someone, then so be it, you can always apologise afterwards - get yourself better first - PLEASE!! I really hope this helps you and you find the answers you are looking for. And the members on this forum are always here to help and support you. Good luck Macca

Hi Goldfish Girl, Liz D and Kempse, Many thanks for your replies. As I understand it, my bleed was towards the front and I was unconscious for 6 days. The pituitary gland is behind your nose and between your eyes although I stand to be corrected if anyone knows better. I never knew before now that I may have to have hormone replacement! "Man? I feel like a woman!" Where have I heard that line before, ha ha? Seriously though, I hope it works if I have to have it. This is Easter weekend and I have slept for most of it and yet when I get up, I seem to feel just as tired as when I went to bed - it is enormously draining, not just on my physical state but also on my mental state, as I just want to shake off the fatigue and remain positive. I am lucky to have people around me to help me do this, but even then it can be difficult on a bad day! But, there are good days also, I'm glad to say, but when I've had one of them, the feeling of exhaustion the next day can be enormous so I have to make the most of them. When I really think hard about it, the very worst of it is that I have no control over when I feel good and when I feel bad ie I can't control it and that's what I don't like. Does that resonate with you also? I am glad the treatments you have had appear to be working. Watch this space!!

Hi, this interests me a great deal since I had a SAH on 1/9/2010. Fatigue is my greatest problem still. Although I am back at work, when I get home all I want to do is sleep. I've just been back to the hospital where I was treated. I have had some tests and what they are doing is investigating the Pituitary gland which secretes hormones into your body. Apparently a SAH can make this gland deteriorate and when it does it cannot recover. So they have taken some blood from me every so often and also injected me with some hormones to see the effect. I have not had the results yet, they are due in about two weeks time. The hormones they looked at were the growth hormone which although doesn't affect growth in adults, does affect your sleep and the body's ability to refresh itself. Also testosterone and Prolactin? Apparently if my hormones are deficient I will need to inject myself with them from a kind of needle pen such as those used by diabetics, but instead of insulin it will be the hormone injected to correct the deficiency. I don't know if this will help anybody or everybody and I don't know if this treatment is available widely either or even if it will work. Only time will tell. In the meantime, when fatigue kicks in I try to watch something that make's me laugh, like Mrs Brown's Boys, or Early Doors, Mock the Week etc. It brightens me up for a while and lifts my mood particularly if I am feeling a bit down. Hope this helps and I will post my results when they come but there are no guarantees!

I read this thread today. it makes a lot of sense and resonates with me. I have a lot of similar experiences since returning to work. I had my SAH on 1st September 2010. I was unconscious for 6 days and they had three goes at operating on me. I was in hospital over two weeks and since then it has been a long and hard road to recovery. Even now, eighteen months on I suffer terribly with fatigue, sometimes depression, and I, too, had a phased return to work after I had been off for six months. Now I am working as hard as ever and am usually in bed within two hours of getting home especially if I have been travelling. I am finding it hard to cope with everything but I am giving it my all and doing my best, but I always listen to my body and quit for the day when it becomes too much. One of the most annoying things though, is I look ok, on the surface there looks to be nothing wrong with me, but I suffer with short term memory loss and nobody, but nobody makes any allowances for my condition any more. Sometimes I am grateful for that but on others I need them to be more understanding and they are not. It confuses, frustrates and annoys me. I also struggle to get things done around the house or to do any of the things I want to at night because all I want to do is sleep after working all day!! Still, I am lucky compared to others - at least I got to go back to work and am managing to hold my job down. Doesn't mean life is easy though! I am back at the hospital this Tuesday. I am having a scan in the mornning, blood tests every two hours after that and some psychology tests as well. Then I will be knackered. I'll let you know what happens!! Macca Salford

I get the following: 'you look alright to me, there's nothing wrong with you'. What they don't see is the frustration at extreme exhaustion, the short term memory loss when not only can I not remember what people have said, sometimes I cannot even remember having the conversation! Also, the complete lack of understanding of what a SAH is and is not. People think that because you look ok, or that you don't look any different than you did before, that you are ok. Also frustrating is when people think they have magically seen some deficiency in you that nobody else seems to have noticed and that you are somehow about to suffer a catastrophe in the next ten seconds if you don't take their advice and get to hospital! I had, and still receive, the best possible care and advice in hospital and from my general practitioner. Aftercare is still ongoing but unfortunately so is the ignorancefrom those outside! Just keep positive and do the things you can and do them to the best of your current ability. One never knows the ills that will eventually befall them and your life experience may be just what they will need to cope. Best wishes to all. Macca