SarahLou

This is beautiful Sarah, I danced round the living room and sang loudly for our Win.. Xx

Sarah, I’m so so sorry to hear this sad news. Over the years dear Win gave me such strength and lots of laughter, through some very difficult times. Heaven has gained a truly amazing bright star. I shall sing out loud for you lovely Win. Much love and great big gentle hugs to you all SarahLou Xx

Hello Jan, I'm sorry to hear that you've been having these troubles, I think it's a good idea to have a chat with your Optomitrist. There are other methods of having the pressures of the eyes checked, next time you have a full eye examination explain the issue you had so that you don't have to go through that experience again, I'm sure that it was rather frightening for you. Although you have a new varifocal prescription it is worth remembering that when we are over the age of 40 then presbyopia does start (the lens of the eye begins to get stiff and less able to focus) so it could be that a seperate pair of reading glasses will help, although varifocals are great, the reading area is small. The full prescription is only in the central part of the lens, so if your eyes are going to the inside or outside of the lens it won't be the full strength you require. A full frame of reading lens will give you a full field of vision, therefore easier on the eyes. If you have exactly the same strength in each eye then ready readers off the shelf will be suitable, if you have any astigmatism correction required they will not correct that. My SAH was behind my left eye, clip is very near my optic nerve so my vision was effected. I've recently been having lots of visual migraines and had an MRI in December, they can not get a clear picture of my optic nerve because the clip is so close, therefore they're not sure what to do with me at the moment!! I wear reading glasses and glasses for computer work, due to balance issues varificals aren't an option for me. My last test was March last year so I'm due another test soon (I'm diabetic so tested every year) however, I know my eyes have got worse so I'm fully expecting a stronger prescription to be required! Please try not to worry and let us know how you get on. Take care, SarahLou Xx

Hello Jan, I'm over 6 years down the line and I still get good days and bad. It was after the 2 year mark for me that things started to improve. You have done amazing, remember how far you have come and try not to be so tough on yourself. Have patience and understanding. Remember that it is OK not to be OK. I've been having a few issues so have been back to see my Neuro Nurse Specialist and Consultant. Neuro Nurse said to me that there will always be times, for all brain injury patients, that they jog along fine and then something gets thrown into the mix and we don't cope so well. For me personally I think it will often be a case of sometimes I'll take a few steps forward and then now and again I will take some back. Yes, fatigue still floods me. Yes, I still have daily headaches and temple pressure but I am still on a learning curve of the new me. I have learned to plan and pace, but there are many times when things are beyond my control. So I too have to still learn that word patience! I still kick out now and again, rant and rave and throw a paddy! But then I'll pull myself together and count my blessings. I'm very stubborn! You will be OK Jan, your'll gather strength from those around you and us lovely lot! Sending you big gentle hugs. Take care, SarahLou Xx

Gill, My dear friend. I know that you're so saddened by this news, it's such a blunt reminder of how close we came. As Jess says, it wasn't your time. This is a very tough lesson for all the children to learn. It sounds like the school are doing all they can. Nathan has two very loving parents, you will guide him through with any questions he may have. I'm here for you, 24-7 SarahLou Xx

Belated 17th SAH Anniversary wishes to you lovely lady. Your kind words and support have given me such strength over the years. Thank you. You are an amazing, inspirational lady. My world sure is a brighter place with BTG in it. Take care, SL Xx

Thanks for sharing Greg, I'll also be printing this off. I can relate to it all. SarahLou Xx

Hi Jan, I returned to work 14 months after my SAH, it was a bit like if I didn't return soon I may not have a job to return to, so a bit pressured to return perhaps a little sooner than I thought I was ready to. I returned to a job I'd done for 20 years and loved. There had been a lot off changes while I was off, so lots to get used to. Work totally floored me and I questioned many times had I done the right thing. I look a very long, slow phased return. Short term memory issues and fatigue being the main issue. Not just tiredness, fatigue that floors you. Then in January 2014 I took a leap of faith and went for a complete career change, including studies. The best thing I ever did. I work with a fantastic bunch. However... I still have issues, some days I'm 'OK' others I am floored beyond words. Yes, I wanted to return to work, I needed to return to work, I love my job, but to what cost. I am currently trying a change in hours to see if that helps me cope better. I have always wanted to work, to not work was not an option for me. I fought really hard to get back to work. I'm not one to sit at home and waste my days, to have an existence where one day rolls into another. Nope, that's not me. Great advise on doing some type of charity work, helping out somewhere. Have to say the hearing dogs is a fantastic idea, we've a friend who does that and has been doing so for many years. I'm sure you will find what's right for you, but do give yourself patience and understanding while you walk this journey. There are many options you can explore. There's a tread called 'Back To Work' started a good few years ago, well worth a read, be warned though it's a long thread so get a cuppa and make yourself comfy!! It is a great read though and really helped me. Take care, SarahLou Xx

Hi Jan, I'd take a guess that my pain threshold was quite high before my SAH. I had a baby with no pain relief. I smashed my ankle and dislocated it, had to wait quite some time for pain relief. I went through donating a kidney after having an epidural block that didn't work, took them three days to realise that,when the person who preformed it came back on duty after the weekend and said it had failed. Have to say I've never felt such pain, I said it was worse than labour. They were amazed I'd coped the way I had. but that's all the past... I don't remember much in the run up to SAH but I'm told I said I was in great pain, told colleagues I was having the worst headache etc, etc. Since SAH (nearly 6 years) yes, I do feel pain differently. By that I mean I'm much more aware of what's my 'normal', how to cope with that and when to see GP when things are beyond my normal. One great bit of advice our lovely Super Mario once gave me was not to put everything down to 'symptoms of sah' that's one of the best bits of advice because I kept putting it down to SAH aftermath when actually I needed other investigations , all my symptoms were so easily put down to SAH,but they weren't. I too have recently been having chest pains under ribs on left side, ended up in a very stressful and scary visit to A&E. Thankfully I'm fine, I know what's wrong. I still have these pains, they come and go. If I'm tired, not slept well (often) everything is more exaggerated. All pains seem worse, I'm more mardy too! We need to sleep to heal. By the way... Tiger Balm is a fab product, definitely try it. Your'll soon have your GP appointment, and your'll hopefully get some answers and then some treatment. Do all the things that you can to help you relax and de-stress. I have recently been practicing the art Zen Breathing that someone on here recommended. Amazing. Oh Heated wheat bags are great too, really recommend those Let us know how you get on. Take Care, SarahLou Xx

Hi Jan, It took me 14 months to return to work after my SAH, I did a long phased return. It was tough, very tough. I'd returned to a job I'd loved and done for 20 years but I soon felt uneasy, that something wasn't right. So two and a half years ago I went for a complete career change, even coped with studies. Yes, it's hard, exhausting, many times I'd doubted I could carry on. Work still floors me, but it stretches my brain, I've seen improvements in my memory issues. Myself and my family are very proud of how far I come. But it does come at a price. I'd love to move, but that's not an option due to other family health issues. My advise is if you want to take a leap of faith do it! Don't ever look back and think 'what if' You've family, friends and all us lovely lot to give you strength and support! Take care, SL Xx

Hi Clare, I'm really pleased for you that you're having these tests, I'm sure that they'll give you some of the answers you're looking for. My SAH was nearly six years ago and I've recently been referred back to Wessex Neuro, my Nurse Specialist did talk to me about Neuropsychology Testing and hoped that I may be able to be tested, however it's too long since my SAH and I can't have the tests. I honestly believe if I'd had these tests years ago I would have much more understanding of exactly how my brain injury has affected me, and it maybe could have helped me with returning to work, helped me with acceptance of who I am now, because even after all this time I still do not have that. It's great to hear how supportive your work have been, although I wouldn't expect anything less, the NHS is amazing in so many ways! You are doing fantastically, think how far you've come, I'm sure QA is a better place having you there! I look forward to hearing how you get on. Take care lovely lady, SL Xx

Hi Mum Of Five, Yep, yep, yep, I totally get how you are feeling! In August it will be six years since SAH rocked my world. I often still feel like it's one step forward and two steps back in the world of living with a brain injury. And that is what we do. Live with a brain injury. So please try not to be so hard on yourself, remember how far you've come. In April I referred myself back to my Neuro Nurse Specialist because of issues I've been having. My long term memory is fine, my short term not good but in recent months my 'missing memory gaps' have been increasing. I sometimes really have to concentrate hard to follow a conversation. Fatigue floors me. I have visual migraines every day. My balance has got worse. I am almost all out of strength and fight. However, I had a good long chat with the nurse, we discussed everything that's been going on in my life. She said it's perfectly normal for SAH survivors to go through months of coping ok and to then face struggles. She went through my scans with me, explained things in more detail so I had better understanding of my brain injury. She has spoken to my surgeon, my latest scans re-assessed, and due to increased symptoms I am being referred back to a Neurologist. So my advice is if you've ever any concerns that this is out of your 'normal' then get things checked. I also like to be alone, it's very important that I get my 'me' time, and that's ok, my family understand that. I'm sure that being a mum of five means you rarely get that! You really do need to have quiet time for your brain to be able to calm down, remember we can not filter things (multiple conversations/noise levels/different visuals) the way we used to. Your brain works much harder to work around the areas that were damaged. Life is all about making memories, so make some good ones with your family and friends, ok so you may need to look at photos to jog your memory of those memories!! As lovely Macca advises use post-it notes, diaries and calenders , I don't know where I'd be without all of mine! Take care and keep smiling, and we will continue to encourage you to sing!! SarahLou Xx

Hi Rachel, A warm welcome to BTG. It's nearly 6 years since my SAH, I too had hydrocephalus and I had a borderline vasospasm. I had clipping surgery for ruptured aneurysm. Headaches,temple pressure and fatigue have always been a big issues for me, they did ease off after 2 years but they are still with me on a daily basis. Temple pressure is less, but I have headaches every day. I've forgotten what it's like not to have them. Fatigue also still floors me. They are worse on days that I work, or when I'm stressed, or when I've just done too much. I have leant to manage them better, to pace myself, and I almost kind of accept that my lil re-arranged brain will always have the last word! I often need a little complete brain rest time, the dark, no conversation, no tv etc. However in recent months I've been having lots of worsening symptoms, on average 3 migraines a day, balance issues too. So I've been back to see my Neuro Nurse Specialist and I'm awaiting an appointment with Neurologist. So I'd say to always seek medical advise if you've any concerns. They're there to help you. Take care, SarahLou Xx

Hi Gemma, Gosh, wow, a lot of new information for you to take in. My ventricles were full of blood too, I also had hydrocephalus, no shunt needed, I had clipping surgery for SAH. Have to say that my Neuro Nurse Specialist has been great, and she continues to be all these years later. I am in fact seeing her in a few weeks time as I've been having some issues. Thought I'd also mention that about 18 months after my surgery I felt ready to hear more about what happened to me, so she went through everything with me, from the moment I was taken into A&E, she went through my records step by step. This really helped me to fill in a lot of the blanks as I lost about a week of memory. Good luck with your upcoming appointments. Take care, SarahLou Xx

Hi Clare, Big deep breath lovely lady.... For me.. Yes very much the normal. I find it very hard to cope with change within work environment, and indeed out of it. As you know I also work in pharmacy and we are currently undergoing a huge refit. When I walked into work last Thursday I very nearly cried. My boss knew how this would effect me and took the time to show me around and explain what's been done and what is yet to be changed. Everything is in a different place, everything looks different. My manager and all colleagues have been great. I spent the few days that followed with bad head pains and massive temple pressure. Then Monday there was yet more change to cope with. After work yesterday all of me hurt. Manager is keeping close eye on me, asking how I am, how I'm coping. It will take time, I know that, but right now I wonder how I will cope even in the here and now. You will be ok Clare, have patience and understanding with yourself. Be open and honest with the colleagues that are by your side each day. Take breaks when you can (now, I'm roaring out loud as I type this as I know how hard it is to get a break in pharmacy!!) drink plenty of water. Make sure you have proper quiet brain rest time after work, lay in the dark, no tv, no conversation etc, just shut down for a little while. I personally don't think of getting back to 'normal' anymore, how can I, I've had my brain re-arranged. I have faught hard to get where I am, and I will continue to take each day as it comes, the good and the bad. Yes, I still rant and rave sometimes, I'm often too tough on myself, but for me getting back to work, and coping with a complete career change has helped massively with my recovery. I am who I am now, different, but I cherish every day. Getting back to work after SAH is a massive achievement and going for a job change is very brave,be very proud of yourself. Take care, SL Xx

Congratulations Gemma on getting through your first year. Be very proud of everything you do and all that you are, bless you, you are amazing. SL Xx

Happy 1st Anni-Versary Sharon. You bring such support and strength to others, thank you. SL Xx

It's great to see you skipping back around BTG Scoobs, I hope that you're doing ok. Take care, SarahLou Xx

Hi Neil, A warm welcome to the BTG family. Your positive attitude is amazing, very refreshing to read. You are doing so well with your recovery, be proud of how far you have come. Perhaps read 'A letter From Your Brain' under inspiration on the Home Page. It's a fantastic piece of writing. It's over 5 years since my SAH, it's been a very long, and at times very lonely, road to recovery. I had awful head aches and temple pressure, visual and balance issues. They eased off after a couple of years but I still have them now and again, mainly when I've done too much. It took me over a year to return to work, and it floored me. I never gave up though and went for a complete career change (and studies) nearly two years ago. Still can't believe I did that! It was the best thing I ever did. Yes, I still have short term memory issues. Yes, I still can't multi task and I still can't cope with noise/radio/tv, brain just doesn't filter things the same way. Oh and I stopped dreaming too for about a year, but oh boy once I was dreaming again it was awful for a while! I could have written horror books! Yes, life has changed, however I prefer the 'new' me, I'm much happier. I don't waste time worrying about things that I can't change. Sadly, I've lost friends who I thought would stand by me, but I've made many new friends. Fatigue issues have stayed with me, but I've learnt to adapt and pace, and I have acceptance, well, most of the time! I still have a paddy now and again! Have patience and understanding with yourself. Your family and friends strength will become your strength. Remember not to compare yourself to how you were before your SAH, but how far you've come since. Keep up with the fitness, I find it very important to match my mental and physical states. I love to walk, and have pushed myself to continue to do so, even if I do look drunk because my balance can get so bad! I've managed just over 7 miles and want and will do more. I wish you well in your recovery, Take care, SarahLou Xx

Hello Ashley and Kim, A warm welcome to BTG. As others have advised I think it would be a good idea to make an appointment with your GP when they have the results from the consultant. Also do you have a Neuro Nurse Specialist? They are always a fantastic first point of contact but I know that sadly not many hospitals have them. I'm very lucky to have one, who over 5 years on I know I can still contact at any time. I hope that you get some of the answers that you're looking for. Wishing you well in your recovery Kim. Take care, SL Xx

I can not stress enough on the importance of Super Marios advice to not put symptoms down to SAH, I've read her wise words about this many times and I wish I'd listened. I've been putting some symptoms down to the aftermath of SAH when in fact I was shocked to the core when I found out at a hospital appointment last Thursday that I need a joint reconstruction due to severe arthritis. Always always listen to your body and seek advice from GP. Take care, SL Xx

Hi Gemma, My SAH was in August 2010, I needed clipping surgery and I had hydrocephalus although was lucky enough not to require a shunt. From about six months after SAH I was advised to be going out for little walks twice a day and I can clearly remember walking down the road and stopping, wondering why an earth I couldn't walk in a straight line! My balance seemed to be getting worse the more I was doing. I still struggle with my balance now. I was referred back to Neuro because of this, had another MRI the beginning of this year and was told 'no significant change since previous MRI ' ... So I was basically told it's a part of me now and something I have to learn to live with and accept. Yes, it's much much worse when I've been doing too much, I walk like I'm drunk and muddle my words! But it does get easier to cope with. I've learnt to adapt and notice the signs, but hey I still push myself too hard sometimes! I returned to work 14 months after my SAH and it totally floored me but I wanted to get back to work, have that piece of 'normal' back. I even managed a complete career change and studies! You are in early days of recovery, you've done amazing, be proud of yourself, but also have patience and understanding. I've learnt the hard way that I must try and 'rest' on my rest days off work, even if it is an hour of 'me' time. When I do too much and don't listen to my brain it gives me a kick to remind me it has been injured! Be wise with your 'spoons'... Look up 'The Spoon Theory' that will explain things! I wish you well with your continued recovery. Take care, SarahLou Xx

Hey lovely lady, Happy 7th anni-versary. Ummmm.... I've broken quite a few mirrors over the years, oooops, that'll be it then!!! If you still have the broken mirror Sarah up-cycle it into something else and then it won't really be broken, will it!? You my lovely friend, and your family, have been through so many tough journeys. However please remember that it's these experiences that make us into who we are. You are a beautiful person inside and out, you have empathy and understanding, sadly that's something some people never gain. You have been a tower of strength to me in some of my darkest times, checking in with me, asking about my family, when you are facing troubled times yourself. That shows what a wonderful person you are. You are strong and caring and you will get through whatever life throws your way. Your strength has become my strength, now let mine be yours. You will be ok hun, lean on all your friends here on this wonderful site. Take care lovely lady, SL Xx

Hi Louise, Many times your posts have given me inspiration and when I've been at some very dark and low points your messages have given me strength, so thank you lovely lady for everything that you do and all that you are. You reach out and touch so many people. Great big hugs to you. Take care, SarahLou Xx

Hello Andrea, For many years I've worn a Medic Alert bracelet, had all my SAH information added when I had that 5 yrs ago. It gives me great peace of mind knowing that all my medical details are there should they be needed. You also get a wallet card containing further information on any conditions, ICE numbers, GP details, hospital numbers etc. When ever I've contacted them (needed new info added quite a lot over the years!) they've always been very helpful, no issues at all. Please look them up online, might be an idea for you to look further into. Take care, SarahLou Xx