SarahLou

Hi Alison, A warm welcome to BTG. It must be nice having peace of mind knowing you have some savings to perhaps help ease back into work more gently. It'll need some serious thought and planning to work out what's the best phased return for you. I went back to work 14 months after my SAH, I had to get back, couldn't afford to be off any longer and worried I'd loose my job, with hindsight I did go back a bit too early. But I did it!! There's a really good thread on here called 'Back To Work', well worth a look but warning... It's a very long thread! Take things at your own pace, plan in proper breaks, keep communications with employers open and clear. Be very proud that you are even attempting to return to work. Take care and keep smiling, SarahLou Xx

Hello Greg, A warm welcome to BTG. It's such early days in your recovery but we do all understand the frustrations. Fixed and sent home to get on with it. Recovery will be a long journey, with few steps forward and a few back. I can remember the simplest of thing totally shattering me. It took a long time to adjust, accept and learn to pace, hey I'm still learning now over 4 and a half years on! My lack of short term memory and fatigue have stayed with me, but improved. In the early days I did puzzles and brain train games. Then built up walking exercise daily very showly. My mental strength has started improving in the last year after I took a leap of faith and went for a complete career change. You will get there Greg, I promise, but for now you need to have a bit of patience and understanding, remember all that you've been through and how far you've come already. Write a diary, keep track of all the little things you notice that change, they may be small but they will feel like milestones. Perhaps read 'A letter from your brain', it's on the home page under inspiration. I still read it often as it grounds me when I need to be grounded. Listen to your body, rest when you need to, drink plenty of water, then drink more water! You will find lots of strength and understanding on this site, we're a lovely bunch! Take care and keep smiling, SarahLou Xx

Fab news Jane, so pleased that you're feeling much better. Enjoy your drive today. Take care, SL Xx

Good luck Mrs Sub and Karen for your upcoming scans. I had MRI recently and they told me at the scan to make a follow up appointment in 3 weeks, although when I phoned to book it I was told it would likely be 4-6 weeks! The way I look at it is no news is good news as I'd like to think if there was an issue I'd know by now! Best of luck to you both. Take care, SL Xx

Good luck Janey, your'll be in my thoughts and prayers, sending you big hugs. Take care, SL Xx

Oh bless you dear Macca, that bought me close to tears. You have always been such a tower of strength and support to myself and many others I'm sure. You make the world a brighter place, thank you. I'm doing five long days this coming week (another first for me), just going to take one day at a time. Have to admit tried to study today but nothing was going in, so I put my books down and sat in the garden. That alone did me the world of good. How's everyone else getting on with their Back To Work? It's been lovely to see this thread being updated. I often wonder how Sandi is getting on now, the lovely lady who started this thread. Oh, by the way Macca , I agree, if I don't pass and all this doesn't work out then at least I would have tried, I will give it my best shot. I want a qualification up on the wall, my first ever one! Fingers crossed that it all works out. Thanks again Macca for your kind words, you are a lovely man. Take care, SarahLou Xx

As always you guys are my strengh... Thank you... Dawn, my studies are going ok (I'm doing NVQ) but I am a bit behind, there is pressure as I only have one year to pass, only two attempts at the exam, if I don't pass I won't have a job. I have to pick my study time carefully, no point in trying when I've been at work or if it's later in the day for example. I highlight and underline key words, and have to read things over and over again. A lot of very long words to get my head around! I have to say though that my colleagues have more faith in me than I do myself. That is one of my main issues, my lack of confidence. Well done on your work achievements Jules, that's great, be really proud of yourself for never giving up. Well I did it! I got through my first week of three long shifts! Yes, it's been tough but then it's been a year since I've worked these type of hours. Plus my days off this week have been busy with medical appointments and family things so I've not really had the rest/study day as planned! Friday was mega busy, non stop as we were very short staffed, if I can get through a day like that then I can get through any day! At the end of my shift my boss asked me how I was feeling/coping and said did I feel proud of myself, my reply was yes that I did, beyond words, but that I now needed to go and hide in a dark cupboard!! It's good to have the serious side of things noted but to also remain a bit light hearted. Unfortunatly the next three weeks my works hours/days are all over the place so no routine, which us SAH'ers know is not a good thing! No idea how I will cope, some serious pacing and planning will be needed. Miss C and my hubs have been great, although hardly seen him as he's been on lates all week. I can honestly say that since I've been working at the hospital I can feel my brain re-booting with regards to memory, things stay in there but I have to find different ways to retrieve the information. All colleagues have commented that my memory has improved, now I know it'll never be what it was, and that fatigue will always floor me so I need to learn to live with that. I know how lucky I am to have been able to return to work, and to take the chance on a complete career change. I just hope that these new work days/hours work out for the best. Thank you all again for your kind words and support, big hugs to you dear Louise. Take care, SarahLou Xx

Hi Dawn, That's great news, I'm so pleased for you, and it's fab to see you back! Work for me is not going so great at the moment. I do 20 hours a week over five days but trying to work, do my studies, plus everything else that needs to be done, is just not working out. I've tried for a year. My boss has agreed to trial that I do my hours over 3 days to give me a proper rest day and a study day in the week. However there are concerns that this won't be in the best interests of the Trust (or indeed myself) , but I'm grateful it's being given consideration. Whether I can cope mentally and physically with the longer shifts only time will tell. If it doesn't work out then I will need to find acceptance that this lil titanium clip in my brain that keeps me alive has won the fight with regards to 'Back To Work' , because I simply don't have the strength to fight any more. As always.... Any spare spoons please throw them my way! Take care, SarahLou Xx

Hi Mandy, A warm welcome to BTG. I had a ruptured aneurysm clipped at the Wessex Neurological Centre in August 2010. So it's now nearly four and a half years on for me. It's been a very long, very tough journey. I was off work for 14 months. Things have changed though, the 2yr mark was a turning point for me. Yes I still get headaches and temple pressure every day. Yes, I still loose my words and struggle with the wall of fatigue. I am still learnng about who I am now. I also had awful issues with vision, a sort of double vision thing, I was Out-Patient at the Eye Unit for a few years, tried all sorts, prisms etc but nothing worked so I was discharged from them. I have my eyes checked every 6 months now. I still get some vision issues, it can be very scary, my balance can get very bad too. But hey! I will not give up! I took the chance on a big career change last year, I am still questioning that move at the mo but I want to fight for something I've wanted for so long. I need to be more positive!! Well done you on the life style changes you made before SAH, keep at those and make sure you kick them ciggies! Remember you are early in your recovery, have patience and understanding with yourself. Read 'A Letter From Your Brain'... I still have a copy of it on my wall and read it often when I need a gentle reminder of a few things! I wish you well with your recovery, perhaps we'll meet at the next Wessex support group. Take care, SarahLou Xx

Hi Shellie, Since SAH I do find that when I get colds and things they do really seem to knock me for six. Last year my GP signed me off work for a week under strict instructions for complete bed rest, and she meant complete bed rest! It was tough to do but I did as I was told (that's rare!!) I changed career nearly a year ago and now work in a hospital, I spent the first few months getting one bug after the next, mentally and physically exhausting. I do have the flu jab every year, have done for many years now. I'm glad that you and your daughter got to decorate the Christmas tree together, that's wonderful. Well done for listening to your body and taking the day off work, I hope that you're feeling much better soon, a visit to the GP for a full check up is a good idea, it'll give you peace of mind and maybe some answers to some questions. Take care, SarahLou Xx

Hi Kris, I've been having the flu jab since before and after SAH (I'm now in 3 of the risk groups!) I'm lucky enough not to have ever had a problem with them. I hope this years one works out well for you. Take care, SarahLou Xx

Hello lovely lady Iola, I've read your post, and read it again, I've read the replies, and read them again... We all have such similar feelings don't we, we are so lucky to be able to come to this site knowing others will know exactly how we feel. It is ok to be angry. It is ok to cry. It is ok to not be ok. I think you're amazing, an inspiration. You should be very proud of everything you've achieved and all that you are. Don't be so tough on yourself. Step back and take a good look at things, change what needs to be changed. Your health, wellbeing and your family come first. I know how you feel with the guilt thing, we've all been there. I skip along with it now and then, I feel guilty because when I'm frustrated beyond words or emotions I wish I'd died in my bed, then I feel more guilty because why should I have survived my stroke when a friend the same age as me died from his. Life is different now, but that is ok. It's all about taking the rough with the smooth. Taking each day as it comes. You will be alright Iola, you have the strength of those around you. Take care honey, big hugs to you. SarahLou Xx

Hello Tree, A warm welcome to BTG, we're a good friendly bunch here and will give help and support when we can. I admire your honesty telling us about the tough struggles you're having giving up smoking. It can't have been easy to put into words when you are writing it and for us reading it, we all know that smoking puts you at high risk. I gave up the ciggies about... Err... Gosh must be 10 + years, you would have thought the date was etched in my memory but it's not! I loved my smokes, didn't want to give them up, was told I needed to etc etc. So it took me three attempts because I needed to give up when I wanted to and not because I was being told that I should. I had the perfect reason, I had to give up to become a kidney donor and save the life of the man I loved. I was watching him dying. I decided to 'just give up', no patches , no gum etc just quit. As I say it took 3 attempts. Hitting week three was the hardest part for me. I have to say there's no way I would have got through without my trusty Chupa Chups (other brands available!!) What I want to say to you Tree, is don't give up. If you really want to give up then you will, if you don't really want to give up then you won't. There are really good support groups out there, speak to your GP for advise,perhaps you've a few friends who could give up together so you can give each other support. There's so much going on in your life so I can understand while you want to keep hold of this, but please Tree, do not let it win. Give up them ciggies and take control of yourself. I'm pretty sure there's been other threads on here about this so perhaps do a search through some older threads. You'll gain strength from us too. Take care, stay strong. I wish you luck. SarahLou Xx

I agree with Louise, sometimes Google is not always a good choice of friend! I've also never heard of the 'Gold Standard'. My ruptured aneurysm was found after having a CT and then I had an angiogram. No choice but to have clipping surgery. I'm lucky that I don't have memories of those early days, but my family and friends have to live with them. Take care, SarahLou Xx

Hello Gail, I had a real struggle finding the right pain relief, mainly due to my lack of choice due to other medical issues. Many times I was back and forth to the gp trying to get help with this. I tried a few things but side effects were bad so I ended up with pretty much paracetamol only. I had a lot of pain behind my left eye and I do still get some pain, like pressure behind the eye. I've had regular eye tests and I also requested eye scans about a year ago. In the early days I also used to patch over my left eye as it was working so hard (it had turned in due to SAH) I also use cold flannel and eye drops sometimes. It is such a battle for many of us to get our pain relief under control. I really hope that your hubby gets his sorted out soon. My GP always said without correct pain relief and proper rest recovery would be so much tougher. I wish you both well. Take care, SarahLou Xx

Hello April, It's great news that your recent scans showed good results. I'm sure you're fed up of hearing this... But it really is such early days in your recovery. Give yourself plenty of patience and understanding. It's 4 years today since my SAH rocked my world. I struggled badly with dizzyness and balance issues. It was always worse when I'd done too much in early recovery but it did settle down at the 2 year mark, as did really bad head aches and temple pressure. However, I've struggled bad again with it for about a year, had various tests with ENT and no sign of my ears causing the problem. I feel off balance and dizzy most of the time. It's now causing me problems with every day tasks and life in general. I often feel that other people must think I'm drunk when they watch me walk. Waiting to see a Neurologist. I'm also on BP medication so have to make sure I don't leap out of bed in the morning! Sleep is still a struggle, I use V pillow, and it still takes about an hour for my head pains etc to ease off in the morning. You are not alone in this, our strengh will become your strength. Take care, SarahLou Xx

Hi Poppy, Thank you for the update, I'm so glad everything has gone well. Keep singing, our Win will tell you that's great for recovery! Have plenty of rest and drink lots of water. Take care, SarahLou Xx

Hi Poppy, Good luck for your surgery tomorrow, your'll be in my thoughts and prayers. When you're ready and able please let us know how you're getting on. Take care, SL Xx

Hi Vanessa, It's lovely to see you back on BTG. I've not been around myself as much as I'd like to be, I've just not had the mental strength lately. It's nearly 4 years since my SAH. I'm sorry to hear that you're struggling with head aches. I still have head aches and temple pressure every single day. Most I can cope with, I'll ride through them without needing any medication. They'll ease when I take quiet time out and rest. Very difficult though to do that whilst working. I have to get through my work shift and then give myself quiet time in the evening when I can. I don't think this will ever change, I'll always need to pace, adapt and adjust. As for can our brains continue to heal years down the line... Yes, yes I believe that without any doubt. I started a complete new career change 7 months ago, I love it, it floors me still, but I'm so, so glad I gave myself the chance to fight for something I'd wanted for so long. It's taking time to build my confidence but my colleagues have all been very supportive. I do still get a mix of good days and bad. Sometimes my balance is awful and that's quite a new thing for me, I've a few other medical issues so I'm waiting for referral back to a Neurologist. And yes, I too have some people around me that still just don't get it. I look fine, I should be back to how I was. If only eh! I'm glad to say I have as little as possible to do with those people! Don't give up Vanessa, you've done brilliantly, have a little bit more patience and understanding with yourself. Be proud of everything you've achieved. Take care, SarahLou Xx

Hello Dawn, I'm sorry to hear that you've been feeling so unwell, it must have been quite a shock to be sent to the hospital and to have to go through all the tests, quite worrying, I'm sure, to be told that you may have had a bleed that a CT might not have picked up. I think that it can be quite difficult for us to recognise whats our 'normal' and when something isn't our 'normal'. When I hit the fatigue wall hard I struggle badly with my words, can't hold a conversation, I feel like I'm not making myself be understood. It's as if I'm talking another language. I've been back and forth to my GP a few times over the last few months, about 6 wks ago my GP was also shocked to see me in such a state, in such pain that I couldn't talk properly, couldn't find my words etc. She's referred me to ENT and recommending I have an MRI. I know I'll struggle to explain things, so I shall go with it all written down. Please, please do not be put off from seeking medical advise because of your recent experience. You did the right thing and like others have said, I think you should go back to your GP and explain things to him/her just as you have to us. Don't be so tough on yourself, follow your gut instinct, if you are not feeling well you need to get checked out. I hope that you manage to get some much needed sleep. Big hugs to you honey, take care. SarahLou Xx

Hi Steph, A warm welcome to BTG. It's such early days in Robins recovery, you've come through the toughest part. For those of us that go through the SAH most of us are 'out of it' for some time, its our families and friends who have to watch our daily struggles. As we become more aware what has happened to us we also start to realise the impact this has had on our loved ones. My SAH was in August 2010, and I'm still learning about the new me now. Please speak up and be honest if you're not ready for Robin to come home. There are some great support networks out there, Headway, Brain and Spine Foundation. Can you talk to Robins Neuro Nurse Specialist? Do you have an understanding GP? This will be a tough journey for you all , others strength will become your strength. Accept all offers of help from friends and family, from helping with household chores to helping with Robin even if it's for an hours break for yourself. You need to look after yourself too hun. As for your children, again there are great support networks out there if they need them and would like them. My daughter was 10years old when I had my SAH, she was away on holiday, I waved her off all smiles and hugs, she was rushed back to find me with staples in my head, I couldn't even hold a short conversation with her. I was not the Mummy she had known. And that broke my heart. Make sure your children's schools are kept informed of the situation. My advise is to be totally honest with your kiddies. My daughter did struggle with things, we have had some very tough and painful conversations over the years but I have to say her school has been very supportive. She bottled her feelings up for quite some time. Please don't be too tough on yourself, Robin has just had major brain surgery, it's bound to rock all your worlds. BTG is a wonderful site, so much strength and support from everyone. I send you all very best wishes. Take care, SarahLou Xx

Happy Birthday dear Iola and wishing you a very happy 1st Anni-versary too. You bring such strength and courage to us all. Thank you for being you. Take care, SarahLou Xx

Thank you all so much for your kind words and support, as always, your strength becomes my strength. I'm not quite sure how I managed to get through my shift at the hospital today but I'm pleased to say that my head pains are finally easing off now. My colleagues were great today, I was talking about my weekend being full of frustrations and tears, trying to explain how things are for me now. I mentioned 'the spoon theory' to one colleague and she looked it up there and then. I was touched when later on in the afternoon my manager came to talk to me about it too, asking was I ok. I'm so lucky to be working with a team who are making the effort to understand. I also spoke with the person whose party it was, I felt that I wanted to apologise that they got to see me like that, he told me to please not worry and that I was amongst friends. They are grateful I made the effort to go and understand what it meant for me to do so. I do not regret going, life is all about making memories, however if a social situation comes up again like this I will put more thought into it and better planning. I can't help the way I feel right now and the confidence blow it's given me. Louise, bless you...You give me hope... Maybe one day I will get to dance the night away with my friends again. Thank you again everyone. Take care, SarahLou Xx

Hello guys, I'm feeling really frustrated with myself today. Last night we went to a friends surprise party. It's the first time since my SAH that I've been to something like this... Lots of people, loud music, bright disco lights. I thought I'd cope ok, I've been coping better with other social events. I went with my trusty survival kit (ear plugs, sunglasses etc!) and as soon as I got there I checked out places I could escape to for a little break if needed. I coped ok for a couple of hours, sat as far from the DJ as I could, had my back turned as much as I could to all the lights that were flashing around the room. The music volume was a bit lower at first. Coped fine chatting with people. Then after the buffet, up went the music and lots of people dancing. My dear friend begged me to dance with her , she knows I've always loved dancing, but I had to explain that since my SAH that's something I can't do now. Thankfully I can happily dance around my own living room, but not when there's loud music, lights and big crowds of people. That made me a bit teary, but she held my hand and said although I may not of got that back, I have got lots of other things back. I was starting to feel rather drained and knew I'd have to leave soon, said to the hub that I'd like to go soon, was in the middle of holding a conversation when my brain went into shut down. Just like that. I looked at the hub, who said 'we're going now'.... I couldn't get my words out, couldn't walk properly and felt ashamed of this. I knew anyone looking at me would think I was drunk. It's normally just my hub and Miss C who see me when my brain goes into shut down like that so I'm sure it was a bit of a shock to some. Once I'd got home it took about an hour of being in peace and quiet for my brain to calm down a bit. Today my whole head is so full of pains. My emotions are all over the place. I want to cry, scream and stamp my feet! But I also know that it's ok to feel like this. It will not stop me from trying to get 'normal' back. The frustrations we feel following SAH are such a challenge. Big deep breath..... Bring it on! Take care, SarahLou Xx

Ahhhh Sandi, congratulations, that's fantastic news. I'm so pleased for you. Good luck to you lovely lady. Take care, SL Xx