goldfish.girl

Jane, your post & the replies have been so hard to read. I am nearly 3 yrs on and know that I am so fiery to my closest family & friends. I think I'm doing ok but kick off so readily if things are not as I'd like them to be. Recently my little boy got very ill & had to under-go a brain operation and I am even worse, probably as the role of a carer is just as hard (if not harder) than being a patient. I have realised though that I am worse to my closest family and maybe that's because I expect them to take it? Your husband is so new to the illness that I don't think that applies but it's worth knowing for times ahead that, maybe, like me he will push those closest to their limit. It is still early days and he is still coming to terms with what has happened to him - a major shock to anyone I think. Given time he will go through many emotions as will you. If there is neuropsycology after care available in your area I would say it is a massive help. Best wishes, Michelle x

Good luck with your new venture Lynne. You are an intelligent, understanding woman & I am sure this will be a fantastic learning curve for you AND for all the employees and clients at the Shaw Trust. You will undoubtedly do all SAH survivors justice and raise the profile of unseen ill health as you continue to improve! Be very proud of all you have achieved. Best wishes, Michelle x

Hello Nessie, I only heard about this site nearly 2yrs after my SAH and like you, looked through it and cried a LOT before I felt brave enough to try to join in. I have found it a huge help to my understanding and recovery - I am sure you will too. Michelle x

Hi Hikingchick, I can't help too much on the being active question but I do go walking and swimming and remember being very scared after I started to do this again as I got a bad headache each time (It took me a year to start again). My GP told me that I wasn't doing very much (er..helloooo...it was massive for me after being so ill!!). I have carried on with both activities and my headaches during these activities has improved enormously over a few months. I was happy(ish) to be given the advice to continue exercising and even happier that the advice proved to be right in my case!!!! It would be best to check with your doctor that you are not doing yourself any harm regarding blood pressure etc during exercise and I hope that steady improvement will be the case for you too. Good luck x

Vicky, thank you for explaining what Lupus is. Horrible to have it at all but more so if recovering from SAH aswell. Best wishes x

Thank you all for your replies - is it just me or does it make everyone else mad at the lack of nation-wide continuity of care? If we should have a flu jab why is this not highlighted in our medical notes as heart/asthma patients would be? Grrrrrrrr.... I feel like i'd be making a fuss or asking for special treatment if I had gone to my GP to ask for a flu jab. Sally, he is slowly progressing, thank you for asking about him x

P.S I don't know what Lupus disease is? Would be interested to know if you are happy to explain? xx

Thank you Vicky! My family have said I should now get a flu jab but I thought they were over-reacting! If only Dr's etc would high light you as being at risk - you wouldn't feel like you were being a drama queen all the time! Michelle x

Totally agree - they operate to fix you and send you home ignorant!!! Am now facing the same with my sons' brain cyst - fixed - off you go - and I have no idea how long it will take to get him better (nearly 3 yrs later and brain surgery recovery information has not improved at all!!) Michelle x

I've been really interested in this thread, I think all who have managed to return to work deserve a massive WELL DONE and all who haven't deserve an even bigger WELL DONE for accepting how they are now. I went back to work for 2 yrs & (as I put in earlier posts) I struggled so very badly to keep going & come home to look after my son and beat fatigue and keep going over and over again, day after day...... I have been on sick leave since September, my full pay ends in a few weeks & the financial worry is massive but I know I cannot do what I did and am still exhausted after all these months off. It is a massive decision weighing up financial needs against health needs and wanting my children to follow a good work ethic. I worry about being able to put the heating on and keep buying healthy food (which I am strict about ) after my pay stops. I really admire LinLin for her amazing stance on her new circumstances and wish I could feel the same about the changes I'm facing - you have done amazingly well and now help others whatever course they choose. I worry too that having gone back to work for 2yrs I will struggle to prove how hard things have been and qualify for ESA. I am also now going for epilepsy test next month & not allowed to drive in the mean time - really struggling with this as I need my time out at the beach with my dog (and with my son being poorly after shunt we have been trapped at home - I can't drive, he can't walk far....) it has really helped to look through posts on here and know we are not alone. Michelle x

Hi, I just read a post on here (somewhere??) about having Flu. Are we in the group recommended to have a flu jab? Do any of you routinely have one after having SAH. I don't know what to think - I haven't had flu since SAH but have had a cold/cough and the coughing does really cause pain in my head as does sneezing. Would love to know what advice others have been offered by Dr. Thanks Michelle x

A holiday will be just what the doctor ordered if he could! Enjoy!! Michelle x

Hi Jan, I had to make a decision on the 3rd anni 3 months after 2 were coiled after SAH. It was the hardest decision of my life at the time. It was a 3mm anni & wasn't coiled initially as they had to order in small enough coils to be able to fix it. The best advice I had was to consider how much I was worried about it (Very much after going through SAH already!) For me, the worry was all I could think about even though there were risks from having the op. It also helped that I asked the consultant if he would risk the op, he said he would..... If you want to PM please do... The good news is, I woke up in HDU and asked to go home the next morning (and was allowed to) the op was a success and there was none of the trauma or side effects of coiling a bleeding an anni. It still amazes me that I had a brain op with no further side effects and was well enough to leave so soon after. I am sure you will be absolutely fine too. Best wishes, Michelle x

Fantastic news! I'm so pleased for you, Richard and your children,you have long deserved some good news!! Hope Richard recovers quickly from the op. Best wishes for the future xx

Anna, I am so sad to hear your latest news. I don't what I can say that would help. Thinking of you. Lots of love, Michelle xxx

You have to stay hopeful Anna. The dr's will know what to do for the best for your mum. Everyone on here will be wishing your mum good luck and hoping things improve for you all. Michelle xx

That's so disappointing for you all. I hope next week goes ahead without any hold ups. Best wishes xx

Thank you again for the messages. Sarah how do you cope with so many hospital trips?? If I wasn't upset about Dylan, I was upset looking at the other poor wee toots in there, awful to see children unwell. Louise I think your comments about the tube etc not being his enemy but a friend there to help really got through to Dylan - I hadn't thought of putting it that way - thank you. He managed to go to beach and stay upright for a 20 minute walk today so (fingers crossed) there seems to be a huge improvement. I also found out that a friend of a friend has a slightly older boy who's had the same op so am waiting to hear if he would be willing to come and speak to Dylan about how things are for him. Am sure that would be very helpful. Thank you all again xx

Wishing you and Richard lots of luck for the op. Will be thinking of you both xx

It's great to hear when things are going well. Good luck to your son & long may the 'up' continue for you x

Thank you all for your replies - they have made me laugh out loud (Pauls burgers & chips comment!) and cry because I was so touched at the lovely comments from you all. I got told off by Dylan for crying AGAIN!! I've read all the replies to him and he was really chuffed with all the good wishes and the thought of looking like an action hero! I showed him the photo of your scar Tina which has helped him to see that his own is very small in comparison. Many thanks Lynne for the link, Dylan has applied to join the site & we are waiting for the confirmation e-mail. It seems I am back on the roller coaster of emotions after all that has happened and it is far worse because it happened to my beautiful boy. Your replies have helped enormously - thank you xx

I have just got home after 10 days in hospital with my wee boy who is 10. He has been poorly with a headache since New Year which really scared me after my own SAH symptoms. After taking him to 4 (!!!) different doctors, he was finally scanned and they found a large Sub Arachnoid Cyst. We were sent to the childrens hospital in Aberdeen where he had an operation to have a shunt put in. I know some others on here have had similar operations to reduce pressure in the brain and wondered if you could give him any words of encouragement. He's very tired from the op and very tearful about everything that happened to him in hospital. He doesn't like his shaved patch or the look of the scars on his head and tummy. He can feel the valve behind his ear (which is now sticking out) and because he's so skinny you can see the tube going right down his body to his tummy. He really doesn't like this and I'm hoping maybe others who have had this done could reassure him that he will get used to this over time? Thank you

Hi Karen, I was told earlier this week that it is 'unlikely' I will return to my my pre SAH self but that small improvements might happen. I think it would have been beneficial to know this a VERY long time ago (SAH July 2008). I already suspected that some things were permanent but it is very hard to hear this so long after the event. I asked every medical person I had contact with if they knew anyone who had ever felt they recovered enough to be 'like it had never happened'. To their credit they all took time to explain that there is always a chance of some improvement (i.e don't ctush the patients hopes!). Personally I think it would have helped me to know much sooner rather than beat myself up that i'm not trying hard enough - other people get better.... I also found out this week that the brain cells surrounding the cells that were damaged can temporarily close down (shock?) and this is why it can take many months to see how things are (as they can re-awaken over time?). However after 2+ yrs they aren't going to. Do you have any info on time scales for brain cell recovery - I'm not looking for a miracle by the way - I accept what is - but it would have been good (good ha ha!) to know sooner what the likelyhood of recovery was. Thank you xx

Hello Win, It's great to see you post on here after reading your daughters posts about how worried your family have been about you. It's great to see you post for yourself. You have had a massive improvement and long may it continue! Best wishes xx

Hi Miss M P, Although I am not medically training I am horrified at your doctors opinion. Not sure how to put it into words but I think others on here may be able to give a better explanation of why her 'just keep going' attitude may not be very helpful. If you are that exhausted at work some thing has to give until you are recovered enough to do your job without the extreme exhaustion. Best wishes x