SarahLou

Thank you Daff for your supportive words. I cried today at work, have to say that my colleagues were great, we are all in the same boat with regards to stress from being under staffed. It's been a really tough week. You're right, I need to give myself time and learn to pace again. I've a few ideas to try. I was having a moan to the hub about how exhausted I feel, when he reminded me that I do live with a brain injury and have done so for three and a half years. He thinks I'm being too tough on myself. He's right, I do 'live' with it, just fighting against it a bit at the moment. A stunning great big smile from a young cancer patient lifted my mood in the afternoon, made me take a step back and look at things a bit differently. I'll get a lil book and write some things down, that's a great idea. Thanks again for your support. Take care, SL Xx

Hello guys, I know that I'm one for always saying to others 'have patience and understanding with yourself'.... Well I sure wish that I could follow my own advice. I've been at my new job for nearly 8 weeks, I love it, I really do, but for the first time I am today questioning whether I can do it. My job is non stop busy, and I mean non stop, tough emotionally and physically. They are so short staffed. My brain spins and my head is full of creepy pains. I'm teary and mardy and I feel like I'm letting myself and others down. For the first time in a long time I feel like breaking friends with my lil re-arranged brain. I am doing a job I've wanted to do for a long time, but right now I'm all outta spoons. I'm sorry to moan, but as ever, it's only you guys that truly 'get it'. I feel so lonely right now. Take care, SL Xx

Hello Alison, how lovely to see you back here. Thank you for giving us an update on Chris. Some positive and some negative eh, I really hope that he is able to get some help with his drinking. He's been given a second chance at life and needs to grab it with both hands. How are you and the children coping? Remember ..... Heal the past. Live the present. Dream the future. Stay strong my lovely. Big hugs to you. Take care and keep smiling, SarahLou Xx

Hello I'm Ok Really, Welcome to BTG, please don't feel like you should leave the group. I'd also advise that you make an appointment with your GP, it's best to get this checked out. I had lots of pain behind my left eye in the run up to my SAH. Please let us know how you get on. Take care, SarahLou Xx

Hi Moonlite, It's good to hear that you've made an appointment with your GP. Please keep us updated. If your head pains get worse, or if you are in any doubt then please just go straight to A&E. Take care, SarahLou Xx

Hi Sarah, A warm welcome to BTG. I wish that I could take away some of your worries and fear. It's such early days for you, you're on a roller coaster of emotions. It may not seem like it now but things really will get better. My SAH was 3 and a half years ago, I had clipping surgery. I have hazy memories of just before my SAH and early recovery. Family, friends and my Neuro Nurse Specialist have filled in some of my missing memories. I also had double vision and was under the care of the Eye Hospital Unit for quite some time. Your world as you know it has been rocked and it will take time, patience and understanding to come to terms with what's happened. My daughter was also 10 years old when I had my SAH, she was away at the time, on holiday in France with my parents, my brother and his family. So I waved her off, happy and healthy, the next time she saw me I was very poorly, a shadow of who I was, but still her Mummy. My daughter has given me such laughter, light and strength. However we have had to watch how she has coped with things as it's not at the time of the event she struggled, but in the months and years that followed. Have you advised the school of this situation? She was at junior school when this happened and my husband went in to explain things to them. We also have had to explain to her secondary school as last year we were called into see them. She has been offered counselling through the school and through our GP should she want it. We make sure we keep talking about things, that is the best thing to do, although we have had some tough conversations over the last couple of years. Headway and The Brain and Spine Foundation are a great source of support too. I hope that you make it to the shop, is there a neighbour or friend who could go with you? All those kind of steps will feel like massive achievements. I wish you well with your recovery, please feel free to PM me if you wish. Have some great big cuddles with your daughter. Take care, SarahLou Xx

Hello guys, Sandi I am so proud of you. Where would we all be if you had never started this thread eh? It sounds like things are planned much better for you and I feel like things will click into place easier for you when the time is right for you to return to work. Maybe you could start another thread ... 'The Return To The Return To Work' ... Perhaps!! I know there are quite a few on here that have had to change their careers, adapt and face some tough truths and decisions with regards to working following an SAH. How's things going with everyone else? I'm now in my 4th week at my new job, I'm loving it and settling in but wow I can not put into words how exhausted I feel. I can literally feel by brain re rooting and learning new pathways and I've only just scratched the surface with my new job, I haven't started my studies yet, still very early days. I'm working every day but shorter hours which is nice. I've not worked a 5 day week since returning to work so that's taking some getting used to. At the moment I get home from work and need to lay down in peace and quiet for about an hour to try ease my brain from the cartwheels it's doing. I'm struggling with sleep as well as so much is going through my head. I'm so happy that I made this career change though, it's nice to be able to get some confidence in myself back. I just need a truck load of spare spoons though please if anyone has any!! Take care, SarahLou Xx

Hi John, I too am sorry to hear about your Ill Health Retirement, and can fully understand how you feel, as you say, acceptance after your SAH would have been easier rather than dealing with this blow now. It's fantastic to hear that you've found your mojo and that you're doing so well with the exercise and weight loss, that's brilliant, be very proud of yourself. I really do believe that everything happens for a reason and whilst one door has closed at the moment others will open. It's been lovely to hear from you again John, please keep us updated. Take care and big hugs to you. SarahLou Xx

Hi Chloe, I used to work with an Optician who did the DVLA visual field screening tests. I don't know if it will be different due to you being tested through the hospital, but I've a little advice I can offer, hope it's of help. I have had to have a few of these tests myself at the hospital following my SAH but not for DVLA as I don't drive. As far as I am aware the test will be done one eye at a time whist the other eye is covered with a patch. They won't be able to give you the result there and then, they will reply directly to the DVLA. The test normally lasts a bit longer than a standard visual field test, as they are testing a wider field so your'll have more lights to see, varying in brightness. The test does take quite a bit of concentration and I'd advise not to do it if you're feeling poorly or tired. Perhaps you could call them ahead of your appointment and ask for more information, I've done that myself with appointments, phoned up and explained that I've had a stroke and feel more anxious in these situations, they might be able to put you at ease. Good luck. Take care, SarahLou Xx

Well done our lovely Win, I'm so pleased for you. Your determination and strength is inspiring. When the weather brightens up I'm sure that your'll be 'Walking On Sunshine'!! Take care lovely lady, SarahLou Xx

Hello guys, It's been quite a while since I've been on the Back To Work thread. Dawn, that's brilliant news, I'm really pleased for you. It sounds like a lot of pressure has been lifted. Keep us updated on how you get on. DM, your new training course sounds like a brilliant idea, gives you the chance to explore all types of career. That's great and I'm sure that your'll find something that is right for you. As for me... I'm about to leap into the unknown and make a massive career change! After 20 years in the same trade I'm going to follow some dreams and try to reach for the stars! I'm excited yet nervous of how my lil re-arranged brain will cope with all the new learning and the few years studying that I have ahead of me. Family and close friends have been very supportive, I just need to find some confidence in myself. I start my new job this Monday (20th) so watch this space!! Take care, SarahLou Xx

Hello guys, I wish that I could take away some of your pain, frustrations and fears. We've all trod this path and we know the difficulties, you are never alone here. It took me 15 months to get back to work, have you looked at the 'back to work' thread? Started by our lovely lady Sandi, it's been a though journey for many of us, but with the support and strength of each other we work our way through things. Can I also strongly suggest reading 'a letter from your brain' on the home page, under inspiration. You are stronger than you think guys, give yourself some patience and understanding. Don't be so hard on yourselves. Big hugs to you. Take care, SarahLou Xx

Hello Sue, How are you feeling now? It's scary isn't it when we have these panics that make us think 'is it happening again?' I know how you feel about the hair washing, I was desperate for a hair wash, I've long thick hair (although some was shaved off for clipping surgery) my hair was covered in blood and very knotted. A wonderful kind hearted nurse asked my parents to bring in baby shampoo and conditioner and bless that lovely nurse she spent ages washing my hair and combing out all the knots. I will never forget that act of kindness. I felt so much better after she'd done that for me. I've had a few episodes of stop in my tracks moments wondering if it's happening again. For me it was having migraine but without the headache, seriously bad patchy vision, very off balance,really bad temple pressure, odd feelings in my head but not the classic migraine headache. It was those around me that were more scared and wanted me to go to A & E, I kept quite calm and knew that I would give it a half hour time limit, as these problems would normally ease off after laying in the dark and having total peace and quite. I know though that I would have got medical help if things got worse. It's hard to work out the difference between issues that are SAH related and other things that are just normal every day ills. It's all to easy to group all sorts of aches and pains that we think could be SAH related and simply are not. I really do believe in what will be will be and when my time is up it is up. To answer your question of what would I take into hospital... In my bag would be a photo of Miss C as she truly gives me laughter, light and strength. I'd also take ear plugs and eye mask! Not that I ever intend on needing that bag again, but hey, you never know what the future holds. I wish you well honey. Take care, SarahLou Xx

Hello Sue, How great to see you back on BTG! Thank you so much for your update, it's wonderful to read such a positive story. Many of your posts have given me such strength. I'm pleased that you and your Mum are doing so well. Big hugs to you honey. Take care, SarahLou Xx

Hello Stu, A warm welcome to BTG. Like yourself I skipped around the site for quite a while before I found the courage to join. Without it my journey of recovery would have been a much more dark and lonely place. My SAH was in August 2010, I had clipping surgery, I also had hydrocephalus and needed lumber puncture. I wish you well with your recovery. Take care, SarahLou Xx

Oh Zoe, this is such sad news, so painful to have heard, I'm sure. I hope that you can all pull together and give each other strength. My thoughts and prayers are with you all. Take care, SarahLou Xx

Hello Zoe, I'm so sorry to hear this latest news. You and all the family are in my thoughts and prayers. Take care, SarahLou Xx

Ahh Daff, we shall all gain strength from each other. Other people's strength will become your strength. Lovely Wem, we are so similar! Friendships and relationships have shifted quite a lot since I had my SAH, I used to get very upset by it but then accepted that there are some things that I can not change. I do not have the 'spoons' to waste, so am now much more selective with who I spend my time with! I too am building up friendships again, making time to meet up with people and socialise again as I have really missed that. I lost a dear friend this year, he died age 41 from a stroke, loosing him made me step back and look at a few things differently. A good thing to come from his passing has been that my path has crossed again with a dear old friend. We are now back in regular contact. I think that acceptance comes in many different stages and that sometimes you're the only one who can find that acceptance but at other times it's the strength, understanding and encouragement from those closest to us that help us along that journey too. Take care, SarahLou Xx

Daffs, what a wonderful thread! To answer your main question... Yes, I have made friends with the new me, and yes it took time, plenty of it. For quite some time I kicked and rebelled a bit, wanted so much to be the person who I once was. Recovery from an SAH can be a very dark, lonely, scary place. Without the wonderful support from this site, my husband, my daughter, family and close friends I honestly don't know how I would have made it through. Many times over the years there have been tears, frustrations, and self doubt. I needed to pick myself up, take a long hard look and my life and start living it again. I would say my turning point came after two years, I started to have much more understanding, patience and tolerance. We are the lucky ones. We survived. I still have a mixture of good days and bad but I just try to ride with things and take each day as it comes. I still have full blown paddys but that's ok. There is a lot of the old me still in there, it's just taking time to find her. My daughter floored me with a comment recently, she said 'Mum, I can't remember what you were like before your SAH' at first I felt a bit upset by this but then I thought, well actually that's ok, because I can't remember much of the old me either. I can honestly say that I am happy , and I would not change anything about any of the journeys through recovery that I have had to go through. To all those new in they're recovery it really does it easier, you will learn to accept and adapt. You will find yourself again. Have patience and understanding. Time really is the best healer and I honestly believe I will continue to improve as the years go by. Yes, I still get shattered beyond words. Yes, I still get really bad head pains and temple pressure. Yes, I still muddle my words and forget things but that's me, that's who I am, and I'm very proud of all I've achieved and I'm very privileged to still be here alive and kicking, doing something that makes me laugh every singe day! Take care, SarahLou Xx

Hi Zoe, I'm so sorry to hear this latest news. I just want you to know that you're all in my thoughts and prayers. Take care, SarahLou Xx

Hi Mike, How wonderful to read your update and hear about all your achievements. Your post has bought a smile to my face and a tear to my eye. Thank you so much for sharing your journey with us. Well done hun, be very very proud of yourself. Take care, SarahLou Xx

Happy anni-versary dear lovely lady, Be very proud of everything you do and all that you are. Your inspiration and strength is amazing. Enjoy your special day. Take care, SarahLou Xx

Hi Jo, Sorry, I don't think I've said hello to you yet, welcome to BTG. Can I ask more about your tinnitus and the pulsating tinnitus?? Have you had it since SAH? My surgery was just over 3 years ago, I had hydrocephalus too. I had clipping done on the front left side. I have tinnitus in both ears and a whooshing noise in my right ear. I wasn't aware of this directly after surgery but to be fair I had so much going on to cope with. I went to my GP about the tinnitus as it was driving me insane. I also struggled with dizziness , and walked like a drunk. I was referred to ENT and the appointment didn't take long to come through. They ran various tests, checked my hearing and referred me to have an MRI of my head and neck to make sure nothing else was going on. They were clear (that was done about a year after SAH) I was then referred to a special Tinnitus Management Clinic who although they tried to help really did nothing for me. I was told that I would learn to live with it but errrr 3yrs on and it still drives me bats. I have recently been having some left temple (surgery side) issues with a pulse / twitch type thing, temple pressure very high, balance is much worse than normal. That's a new thing for me so I'm having some tests done. Just wanted you to know that you're not alone in this. Let us know how you get on. Take care, SarahLou Xx

Hi Susan, Firstly, welcome to BTG! You have to remember that you are in such early days of recovery yet. You've a lot of healing to do. My sinuses got pretty rocked too and still are. I'm 3 yrs on and I still get face pains and jaw ache. I'm going to be having a gum shield fitted so hopefully that will help. As for the temple pressure, I suffered really badly with that for about 18 months after surgery. It really did feel like my head was in a vice, and had bad head pains on the left side of my head (surgery side) Those pains did ease off but I do still get them, much milder now. Although I'm having some tests done as I've recently started having some temple problems that are new/ different to what I've ever had. Yes, do keep that water intake up, it really will help with headaches. Have patience and understanding with yourself and get plenty of rest. Have you read 'a letter from your brain' on the home page, under inspiration. It's a fantastic piece of writing that I still read often to remind me to take a step back sometimes when I've done too much and my lil re-arranged brain is giving me a kick for some rest! I wish you well with your recovery. Take care, SarahLou Xx

I had an epidural in 2006, to help with pain relief following transplant. The epidural didn't work though. My SAH was in 2010. You raise an interesting question... SL Xx