SarahLou

Tulip, you and your family are in my thoughts and prayers. May your dear Dad rest in peace now. SL Xx

Hi Sandi, Thank you for the update on how things are going. On the whole they sound like they're helping, I really hope that they will continue to do so. Keeping all aspects of your life that little bit easier to cope with. I would love to try something like that, say, while shopping or even walking down a busy street. I have such difficulty in situations with that. I also struggle to understand conversations unless the person is in front of me, especially when there are other conversations going on around me at the same time. Has anyone heard of these custom made ear plugs being fitted in the UK? Keep us updated Sandi. Take care, SarahLou Xx

Hi Mary, Yes, the full body pain hits me hard too. As I write this the whole of me hurts, such deep pain it's like my bones hurt. This week I've started working an extra half hour per work day, not my choice (best not get me started on that rant !) and its floored me. Add to my day the normal things, cooking a meal, household chores, being a mum , I'm all out of strength. Then fitting in exercise, gym work, shopping etc... Yes, my brain and body scream at me! I'm fed up of hurting his much Take care, SarahLou Xx

I read this book about 6 months ago, I thought it was ok but for me personally I found it a bit tricky to follow, it jumped around a bit with different quotes from many people's experiences. I have to be honest and was surprised it was written this was way as I know a lot of SAH survivors have struggles with reading following their SAH. I felt it would have been better to have each survivors story/ advice per chapter. Only my honest opinion though so don't be put of trying it. SL Xx

Hi Rachel, I'm so sorry for your loss , you and your family are in my thoughts and prayers. Cherish all your happy memories and please take comfort that your mums wish to donate her organs will give many others a second chance , I know exactly how that feels. You will all gain strength from those around you. Give extra big hugs to your brother-in-law. Take care, SarahLou Xx

Yipeeeee Daff! That's brilliant news, I'm so pleased you're able to drive again. Enjoy your first trip out. I bet you drive to your mums, get out the car then have a big dance and sing around! True Win style. Take care, SL Xx

I'm glad that you're proud of yourself dear Michelle, you quite rightly should be. I hope that you have a fantastic holiday and that you make lots of happy memories. You know my address so you'd best send me a postcard!! As for the gardening tips... Yes, I'm sure you can give me some so I will be asking, chop chop get writing down ideas!! Loopy Xx

I also agree, it is all about pacing yourself and planning things. As you know though, un expected things get thrown at us which end up using up way too many spoons. I work 3 days a week and I know that's my limit. Although being a housewife and mother is way more than a full time job! My two days off work are spent doing all the things that need to be done as well as having to fit in a lot of medical appointments at the moment. I have learnt that when my brain says it really needs rest then I have no choice but to rest. My brain just goes into shut down. I still can not plan to do any type of social thing after work. I just wouldn't be able to cope with it. We went out Saturday evening, had a great evening, but I knew that I'd need to not do much during the day and planned nothing for the Sunday. In fact it was nice to laze on the sofa with Miss C and watch a DVD. As for gardening, that's still something that totally exhausts me. I need to come up with a plan to deal with that. I'd quite happily concrete the whole lot!! I think I shall take some tips from you Michelle, all your garden plans sound great, good luck with it all. David, maybe you could get someone to help you with a small veggie patch this year ? Mary, hope those dogs stay away from your tomatoes! My Frog likes tomatoes too. Enjoy your duvet days guys, I shall cherish mine tomorrow!! SL Xx

Dawn, I've lost my fear of spiders too! How weird is that! I used to be petrified of them,I shook, felt sick etc etc. Now.. Nothing. I want to crawl under the duvet and hide. Not sure what hurts more, the persistent pains in my head or the aches from today's physio. I think that tomorrow I shall stay under my duvet all day. Take care, SL Xx

Hi Dawn, I too am glad that you've bought this up. This also happens to me, I'll do something, or say something that I'll have a complete blank memory about. It's not my 'normal' memory problems, this is different. Last week I really told the dog off for pinching food off the kitchen side. She looked up at me with those big brown eyes. Frog hadn't taken the food, I'd thrown it in the bin but I had no memory what so ever of doing that. These complete blank moments happen to me now and again, yes they do scare me a bit. After I'd told the dog off and realised I had thrown the food away I just sat on the floor asking myself over and over why had I lost that memory. Why couldn't I remember. I've done other things that hub or Miss C have seen or heard and yet I've a complete blank on that memory too. I think it may be because I'm really busy at work and I've got a lot of other medical issues going on at the moment, but, hey, I'm not really sure. Sami, I understand with worrying about dementia , this is also something I've looked into and asked questions about at support groups. I asked are people with brain injury at a higher risk of something like dementia , they replied there was no proven link yet, but I believe more studies need to be done in this area. I'm very glad I'm not the only one this happens to , so thank you Dawn for bringing up this thread. Take care, SarahLou Xx

I don't want to be 'Sarah, who had the SAH' any more, I just want to be 'Sarah' again. Does that make any sense to my fellow re-arranged brain friends !? SL Xx

Mary, you're great. I shall be taking a few of your hints and tips to put into my own life. Especially the work one. I am wasting far too many of my spoons at work over other co-workers. Michelle, I wish I had enough spoons left to work out your math but... Errr... No chance! Had a good chuckle when I pictured your face hearing that Dylan has to go to school as an African tomorrow. Read that sentence a few times! I've already given my spare spoon to my Davie, I really could do with it back as I need some energy for the huge amount of will power I need, I've got my fasting diabetic bloods tomorrow and all I want right now is a great big mug of tea and some toast with marmite on. Ages ago I printed out copies of 'the spoon theory' , given it to many family and friends, it's the easiest way to help them understand what my life is like after an SAH. I even had hospital nurses reading it and printing it off. Ummm... I wonder if I plaster many of them and many of 'a letter from your brain' copies over my works staff room wall that perhaps anyone would take the hint! I still want a spoon tattoo, that WILL be done, I'll always have spare spoons then eh! Take care, SarahLou Xx

Wow Louise I can't believe you've not heard 'the spoon theory' mentioned on here before! Davie Bud watch out! I'm going to throw you my spare spoon, catch it! SL Xx

Hi Siobhan, Welcome to BTG. Sounds like you've a really good positive attitude which is wonderful to read, well done you for looking on the bright side of life. I love your Grandad's quote of 'you're as sick as you let yourself be', so very, very true. I had double vision for a while after my SAH, was referred to the Eye Hospital, saw them a few times. For me an existing problem was made worse due to my SAH. Various things were tried but they didn't work. There's nothing more they can do for my left eye now. It settled down slightly but I still have a long distance vision problem. Not so much double vision, I get a blurry image from my left eye, clear vision from right, put that together long distance and its a struggle! I've kind of learnt to cope with it. I hope that your appointments on Wednesday give you some answers. If your Optician recommends a patch over one lens then you can have that lens 'frosted', looks and works better than a patch. Go and see your Gran, enjoy great big hugs. Life is all about making memories. I wish you well with your recovery. Take care, SarahLou Xx

Hello dear Davie Bud! Well... Im not sure I want to add up how many spoons I use, I know that right now it's way to many. I use a couple before I've even left the house. I still wake up with head pains so take my time in the morning. I've got to get myself organised for work, make sure Miss C is ready for school and out the door, sort out Frog Dog, often empty the dishwasher or put laundry on before I go to work. Then I've got to get to work. I walk which takes 50mins, I think this uses less spoons than if I were to try and cope with getting a bus in morning rush hour traffic. I use most of my spoons getting through my work day. When Hub works earlies he will pick me up so at least I don't have to use precious spoons on a bus journey home but that's normally only once a week. When I get home I'll then use up more spoons having a shower, making the tea, odd bits of housework that need to be done. Then I need to dig deep to find some spoons to spend time with my family. Sometimes I simply don't have enough spoons to even hold a conversation so I lay down in the quiet and dark for a while. I'll gain back a few spoons as I have a cuddle with Miss C and she chats to me about her day. I'm trying hard to have some proper 'me' time on my days off but there's always appointments to attend and things to do. I'm trying to catch up with my friends more but things still have to be planned carefully. I've just started intense physio, that will be 3x a week. Where will those spoons come from eh???!! As said in true SarahLou style.... 'Rrrroooaaarrr' !!!!! 'Nuff said! SL Xx

Hi Nic, A big welcome to BTG. Wow, what a special birthday gift for your family for your mum to wake from coma on her birthday. So, she was in France when all this kicked off eh, all my family were on their hols in France when my SAH rocked my world. As others have said her jaw discomfort may be due to all the tubes etc. I had clipping so my jaw was agony for quite some time, I lived off yogurts and squashed strawberries for quite a while. The fatigue is very hard in the early days. A shower was totally exhausting, it would zonk me out for hours. Just had to learn to take things slow and steady, and I learnt the hard way when I'd done too much! As for the double vision problems, I had this quite bad, very scary. My bleed was two inches behind my left eye and my vision was made much worse following SAH. I was under the eye hospital but there is nothing more they can do, tried various things but it didn't work. I still have a long distance vision problems. I wore sun glasses all the time for months, still wear them a lot as still mega sensitive to light. I had hydrocephalus, but lumber puncture sorted this so thankfully no shunt. As for the headaches, that's very common. There's a lot going on in your mums head, things to adjust back and repair. Some people's head aches ease, some don't. I'm one of those who still has headaches daily. Please tell your mum to take baby steps, have patience and understanding with herself. Drink plenty of water and remember we are a great bunch here for you, her and all the family. Take care of yourself, the strength of her family and friends will become her strength. I wish your mum well with her recovery, Take care, SarahLou Xx

Hi Scarlett, I wish that we could take away some of your worries and stress. When you see your doctor tomorrow please be open and honest with him about how you're feeling. I needed a lumber puncture about a week or so after surgery. I was out of HDU and back on a neuro ward. To be honest they said it needed doing so I let them do their job. I didn't have any pain or discomfort just couldn't stand laying flat and still for so long afterwards! I remember pleading... 'Please nurse, can I move now?'... 'No, Sarah dear, not yet' then I'd ask again ten minutes later, must have driven the nurses mad! My anni burst and I needed emergency clipping, I've no idea how long I was walking around with that in my head. I saw neuro consultant last December, when I commented to him that I'd had a ct scan in April 2010, my SAH was August 2010, so I'd always thought it happened between those times, he told me that was unlikely and that the ct probably didn't pick up the anni. I was surprised to hear that, threw my theory right out the window! He also told me that 5 people out of 100 walk around without knowing they have it, and that 4 out of those 5 people will die of completely un related reasons, nothing to do with an SAH. I know it's really tough, I was also told then they would scan me in a few years to check no further aneurysms are present, something that hasn't been mentioned in previous appointments. I can honesty say that I don't worry about it, what will be will be. I hope that you can find a little bit of peace and understanding soon. Take care, SarahLou Xx

Hi Dan ... Or Lucky as Win has renamed you! Welcome to BTG, it's great that you've found us so early following your SAH. My brain still goes into shut down two and a half years after my SAH when I've done to much! I recommend you read 'a letter from your brain' on the home page under inspiration, it's a fantastic bit of writing and I still read it often. I wish you well with your recovery. Take care, SarahLou Xx

Hi, I've also had headaches / temple pressure every day since my SAH two and a half years ago. I've forgotten what it's like to not have a headache. They have eased off over recent months, now mostly bad when I'm tired, stressed etc. I'm very limited on what medication I can take so mainly ride through the pain, take paracetamol if I need to. I get those nasty lil head stabbing pains too, stops me in my tracks and takes my breath away. I also still get a general aching feeling where my surgery was if I've done too much, my brains way of reminding me it has been injured and that I need to rest! The only thing that helps me when my head pains are really bad is a totally quiet, darkened room. Take care, SarahLou Xx

Hey my Davie Bud, Glad to hear you had a duvet day, your body and brain must have needed it. I still can't quite believe I had a duvet day all week last week, I followed my doctors orders! I've done as I was told, THUD!! Actually I enjoyed being in my pjs all day, slept when I needed to and read lots, something I've really missed doing. I don't often have enough spoons to read much. I know that things are a struggle for you hun, but please remember all that you've been through and all that you've achieved. It's great that you're out socialising, playing poker which I know you enjoy and are good at! Don't be so tough on yourself, it wasn't a wasted day, I'm sure your lil re-arranged brain enjoyed its duvet day! Take care and keep smiling, SarahLou Xx

Hello Scarlett, I've been following your story, most of the posts I've had to read a few times because I can't quite believe what I've been reading. Wow, you've had such a battle on your hands and its honestly shocked me to the core and bought me to tears. I hope now that this is a turning point for you and that things will now start to move forward for you. As for your husbands reactions... Errr... Now, I shall not comment because my Mama always taught me if I can't say anything nice then to not say anything at all!! I really do wish that you had a better support network around you, however, all our strength shall become your strength. I wish you well and send you big hugs. Take care and keep smiling, SarahLou Xx

Hello you lovely lot! Gosh, it's been a while since I've had a skip around on the BTW thread! I work 3 days a week and seem to be coping better as time goes on, although I do still have good days and bad. Dawn, I also have times when my mind will just go blank and I can't take in what a patient is saying to me, my brain doesn't hold onto the information. I know then its time for me to take a break. I still have many post-it notes all over the place! Last week Miss C was quite poorly, I had to take unpaid leave from work, I knew I wouldn't be able to cope with work due to the lack of sleep I'd had. I feel as if I'm turning a corner, I've always walked to work, got a bus or lift home, lately I've managed to walk home too (50 minute walk each way) I'm really chuffed at this because I know that's a proper bit of 'normal' back for me. I still can't multi task though! Sandi, it's great to hear that your volunteering is going well, hope your eyes settle soon so you can go ahead with your extra hours. David, Bud, how's things with you? I know that you're in much pain, I like many others wish that things could be easier for you. Right, I'd better get on, a woman's work is never done! Take care, SarahLou Xx

That's a great idea Wem, life is all about making memories. Take care, SarahLou Xx

Well done dear Gill! I'm very, very pleased for you. We've got to fight for our rights! I'm doing a lil skip around the house! I'll show you my dance at the next support group, your'll love it!! Take care, SarahLou Xx

Hi Wem, Well done you for getting this far, be proud of yourself! It took me a long time to settle back into work, the early weeks back were exhausting, I never thought I'd make it. I was just settling into things when I changed clinics and pretty much went back to square one again. I'm working three days a week now and that's the limit for me. Work still floors me but I've learnt to cope with it. Well, kind of!! How it feels to have that bit of 'normal' back still can not be put into words. I wish you lots of luck dear Wem, your'll get there, just take your time and have patience and understanding with yourself. Take care, SarahLou Xx