SarahLou

Hi Raine, How wonderful to see you back here! Fantastic to read about everything you've achieved. Well done you! Your'll get to the movie theatre before you know it, the best things come to those who wait. Take care hun and keep smiling, SarahLou Xx

Hello Nic, Ummm a very interesting tread you've started! I too was treated at the Wessex when I had my SAH 18 months ago. I can't fault the wonderful Mr Sparrow and his team, I'd not be here if it wasn't for them, but I agree there are nursing issues. I don't have much memory of the few days run up to my SAH or for about a week after, family and friends have filled in my memory gaps. When I was in HDU they put my catheter in the wrong place (yes, you read that correctly) I ended up on anti biotics for a urine infection. I also ended up with a very bad tummy bug. Imagine coping with that having to use a bed pan and keeping totally flat. It was distressing and very uncomfortable and horrible not being able to clean yourself up properly. I'd cry in frustration. I don't remember eating in HDU. I was in a side room but one night they moved me to a ward with other patients as the Sister on duty said they would beable to keep a better eye on me. After about a week I was moved to D Neuro. I was put on a ward with 2 men and 1 other lady. There was a young male who had been bought in with head injurys following a drunken fight, he kept sneaking out for a smoke so nurses would have to leave the ward to look for him.there was another man who clearly should have been on a special ward that dealt with mental health issues. He would rant, rave and get very abusive. He would go right up to other patients faces. Very scary. They got his family in for a meeting, not kidding there was about ten family members including loud noisy children running around and screaming. This man was also given one on one nursing 24hrs a day. There were a few fantastic nurses, totally dedicated to their jobs. I was desperately wanting a shower and hair wash, the nurse advised my family to bring in Johnsons baby shampoo and conditioner, which they did, this nurse helped me shower and washed my hair for me. It totally exhausted me and bless her she even combed through my mop of hair for me as I just didn't have the strengh to do it myself. I was also very sensitive to the light, I'd pull the curtains around my bed, they'd pull them back. They told my family to bring me in sun glasses, uncomfortable to wear when your face and head are very swollen. Being given meds very late was also common. One night they were hours late, I was screaming and crying in agony. I snapped at the nurse and she snapped back at me. She did come to say sorry later. My cousin used to come in and help me at afternoon meal time as I didn't have the strength to cut up my food, I had very limited jaw movement. My hub would come and help me wash in the evenings, settle me for the night. I was moved to a side room which I thought would be better, more peace and my own toilet. However I got forgotten a few times, changing bed linen, breakfast, meds etc.And that room was not cleaned at all in the 3 days I was in it. I was glad to be sent home to continue my recovery. Lucky to have family doing my meds etc. And home visits from my GP However, I'm lucky to still be here, and I cherish every day. I have my GP and the Wessex to thank for that. Take care and keep smiling, SarahLou Xx

Hello Dawn and Kaz, Yes raar raar raar this is a tough subject! Many things I could put but I'm sure they'd end up being deleted and I'd be banned! We've been down this route when the hub was taken ill and again when I had SAH. We didn't get any help with council tax or anything at all all through his illness. Even though he was strapped to a machine 3x a week that kept him alive. Applied again after SAH but again no help from council tax etc. However, after my SSP ended I got ESA, that's lower and limited now because I'm on phased return to work. I also get DLA. There'll be a big shake up again soon so as usual the people who really need and deserve the help won't get it. I could rant on and on!! But I'll take a big deep breath and a step back. Take care, SarahLou Xx

I agree Dawn, timers are great. I will easily forget I've put things on and as you say won't remember unless it's a 'what's that smell?' question, or 'why's the smoke detector going off?' In the earlier days of recovery it was much much worse. Wouldnt use the cooker when I was home alone. To be honest hub always has and probably always will do most of the cooking in our house. As I've said before.. The only reason I have a kitchen is because it came with the house!! Take care and keep smiling, SarahLou Xx

Hi Lil Miss Goldfish Girlie, My hub has to take many different medications everyday, at different times of the day and certain meds everyother day. Ever since he was diagnosed he has printed off a month by month calendar and it's blu-tacked to the kitchen cupboard, he will cross off the days as he takes the meds, also keeps track on there of the meds he has everyother day using a different colour pen. Don't know if this is an idea you could try, thought I'd mention it. Take care and keep smiling, SarahLou ( not the naughty one!!!!) Xx Ps... Derrrr this is what Karen suggested! Guess my rearranged brain didnt read what she wrote properly!Oooh I think I need some sleep. That or some small geezers to help wake up my brain!!

Hi Dawn, It's been 18 months since my SAH and I struggle with my short term memory. I have note pads everywhere and use my phone a lot by setting reminders on it. I also write down all meds I take. I also am really rubbish at making decisions now. When talking to friends and family I'll forget what I've said so just ask them if I'm repeating myself! When I'm tired or in a stressful situation I still struggle finding the right words. My family and friends are used to changes in me now. As for myself, most of the time I'm ok, but now and again I really, really miss the wife and mother that I used to be. You're doing great Dawn, be proud of your achievements and keep going with writing notes about everything, you do get used to it! Take care and keep smiling, SarahLou Xx

Hello Dawn, As others have said, it does feel a bit like you've been abandoned. They fix us and off we're sent. I do have to say though that the neuro support nurses where I was treated are fantastic. They met with my family and I while I was in hospital and they made it clear they were only a phone call away. And they were, many times! Even speaking to my hub and giving him advise when a few weeks after leaving hospital I went through a mega bad time of head pains, couldnt speak, screaming in agony etc, all because I'd done too much too soon. Ive have had a couple of follow up appointments at neuro out patients, and an MRI in december, my results were back quite quick. I'm waiting for a hospital appointment with hearing therapy, now that is proving a bit of a nightmare! Raar! Got to phone them back in a few weeks. It often seems the way that we're the ones having to make all the phone calls, chase all scan results etc. I do have to add that I'm also lucky enough to have a fantastic GP who I've known for over 25yrs so she knows me better than I know myself! She'll ask how I am, I'll answer, then she'll ask me how I really am. I'm walking close to the line with a few things lately which she is aware of. I go to neuro support groups run by the hospital and I find them really helpful. The most support I've received though is through this wonderful site. Don't know how or if I would have made it through without it, god bless you all. Take care and keep smiling, SarahLou Xx

Hi David, Seems like a while since we've chatted! I found my way out from under that heavy rock I was hiding under for a while. I know how you feel about the sleep thing, I can get to the point where my brain just shuts down and I zonk. It's normally after a couple of busy days at work or if I've just not planned my days well enough and done too much. I can literally be having a conversation with the hub and Miss C, I'll just walk off, they'll come and find me curled into a ball, deep asleep. It also takes me a long time to wake up in the mornings, for my headaches to ease. As Lin said, brain injury fatigue and tiredness are two completely different things. Something most people can't begin to understand. As for the gym, if you feel ready to try it then do. Trying it on your quieter days is good advice though. I tried to get back to swimming and water torture (aqua aerobics) but I had to give that up. Maybe one day I'll try it again. Im enjoying my walking, do at least an hour every day now. Still got my mate Fred , as I've called him, the skipping rope and I do Wii fit too. I'm getting there slowly. Take my frustrations out on that or I'm sure I woulda punched my way through more doors in this house by now!! Anyway, I've rabbited on too much hun, sorry! Enjoy going back to the gym, just take it easy. Let us know how it goes. Big hugs to you. Take care and keep smiling, SarahLou Xx

Ahh Alison honey don't be so tough on yourself. You're a lil star and coping so well. Has Chris been assigned a Neuro Nurse Specialist yet? It would be worth having a chat with them about things. Take care and keep smiling, SL Xx

Hi Dawn, It's all over now so hopefully you can get some good nights sleep. I had an angio in the early hours when I first was taken into hospital, I can remember bits about it. I had an MRI 22nd December and my results took about 3-4wks but there was Christmas and new year breaks that caused delays. Fingers crossed for good , quick results and the answers to your queries soon for you. Take care and keep smiling, SarahLou Xx

Hi Alison , Wow, such brilliant news that he's responding so well today. I bet you're so pleased that you could do a lil skipping dance around his bed! Go on, do that dance! Keep holding onto his hand honey, and keep talking to him. Remember to reach for the stars for they are your tomorrows. Take care and keep smiling, SarahLou Xx

Hello David, Well done you for getting through the week! I increased my hours last week, won't deny that it's been tough, although struggling through being poorly hasn't helped. Had a big chat with my gp on Friday, she's advised me not to increase my hours again for a while. Not had a chance to mention this to my boss yet. I agree, Skippy should become a Life Coach! Keep us updated of how you're getting on at work. Take care and keep smiling, SarahLou Xx

Hi Nic, Welcome to BTG. Wow you're so early into your recovery, slow down and rest! Have you read 'a letter from your brain' on the home page in inspiration. A very good piece of writing. I was also treated at the Wessex Neuro in Southampton. My SAH was August 2010, I was clipped 2 inches behind my left eye. My SAH made an existing problem much worse and I've been treated at Southampton Eye Unit since my SAH. I get a very patchy blurry vision from my left eye that goes over my right eye vision. I've tried a new prescription that was very complex but it was too much for my brain to cope with so they reduced the prescription back quite a bit. I've only tried them a few times to see if it helps with tv, it'll be too much to cope with for wearing them outside. So it looks like I have to live with the very long distance blurry vision. I see the Eye Unit again in march. It's good your optician picked this up and that you're being referred to your gp. You can always go to Southampton Eye Unit direct on referral from your optician if you want to be seen quicker. They are a fantastic bunch there. Yes, I did get a few probs with back cramps and extra pressure, they did another ct scan about 9 days after surgery and I had to have a lumber puncture. I hope things get sorted for you quickly. But remember you've been through such a serious thing, have patience and understanding with yourself. I wish you well with your recovery. Take care and keep smiling, SarahLou Xx

Hello Alison, Chris, you and all your family are in my thoughts and prayers. SarahLou Xx

Hi Roshni, It's so wonderful to read about the way you've turned negatives in your life into positives. You seem to have some fantastic goals in your life. Well done you. My lovely Miss C was only 10 yrs old when I had my SAH, she's had a tough lil life, watching both her dad and I go through serious illnesses. She is without doubt the laughter, light and strength in my life. She's a beautiful young lady inside and out and I'm sure her experiences have helped shape her into the person she is. She has just started doing some homework entitled 'coping with illness'. I'm sure it'll be an interesting read. A very teary one too. I hope that your dad gets to have his hydropool sessions soon, I'm sure they'll be a help. Fingers crossed that the adaptations get sorted out soon too. All these things seem to take so long to get sorted out don't they. Keep in touch with us all, it's good to hear about how you're all doing. Take care and keep smiling, SarahLou Xx

Hello Roshni, I'm sure that your parents and all of your family and friends are very proud of everything you do and all that you are. Reach for the stars honey for they are your tomorrows. Take care and keep smiling, SarahLou axx

Brilliant news Jess. Big hugs to you. Take care, SL Xx

Hi David, That's good-ish news on the work front, gives you a bit of time, a bit of breathing space. I think I'll be facing a similar situation myself soon, my boss has mentioned a few times about me changing my contract hours. All the best wishes with your wifes operation, please keep us informed. Big hugs to you both. Take care and keep smiling, SarahLou Xx

Ah Sandi stop being so rough on yourself or I'll start singing and believe me with this scratchy husky voice and sore throat I've got at the mo I'll give you very bad ear ache!! Seriously... I know the journey you've taken on returning to work has been very tough for you but you've gotta look at how far you've come. You've done so well and should be so very proud of yourself. Maybe your ideas of you doing a slightly different job is an avenue to explore. Or could you job share? Don't give up Sandi, have a read of 'a letter from your brain', that'll give you a reminder about a few things. Stay strong. Big hugs to you honey. Take care and keep smiling, SarahLou Xx

Hi Karen, Our lovely John had some very wise words there. Have you looked up 'the spoon theory' online? It's really, really good and the best way for those around us to learn how things are for us now. I've referred a lot of my friends and family to that piece of writing. And as for the swearing.... Oooooh yeah, I have that problem too now! We'll be sat having a nice family meal and I'll put a swear word into the conversation and turn the air very, very blue! It happens at all sorts of random times. My dad will still raise an eyebrow though and say in as sturn voice as he can 'Sarah-Louise!!' but I do notice the slight smile on his face. Take care honey, and keep smiling, SarahLou Xx

Hi Ron, I'm so sorry to hear of the way you've been treated, it doesn't seem fair or right. Maybe as Lil Miss Goldfish Girlie says, your employer could find something different for you to do a phased return to work. I do know how you feel, when I returned to phased return to work after 14 mths off a regional manager asked why was I still even employed by the company. That hurt very much, especially as I've worked for that company on and off for 22yrs now. Wow. That looks a lot when I write it down!! To that question my manager replied to the regional manager that if they 'just got rid of me' they would be breaking various employment laws. I am now nearly 4 mths into my phased return to work, I'll be increasing my hours again next week. I have a year to do my phased return to work and if I can't get back to doing my pre SAH hours by then then I know I never will. I'll deal with that if and when it happens I guess. As others have said, and I agree, I would get some professional advice on this. I hope that things work out in the way you want them to and the way you rightly deserve. Stay strong, you're doing so well. Big hugs to you dear Ron. Take care and keep smiling, SarahLou Xx

Hello Mary , Hows things with you today? As others have said the headaches, pains, creaking, cracking etc does all ease off a bit after time as the brain is healing and things are going back into place. I had many bad migraines before my SAH but haven't had any since. I do however have permanent what I call head pains. I still get a lot of temple pressure too. I can never sleep comfortably and will always wake up with bad head pains. I also use a V pillow like Karen said about. I'm very limited on what I can take, just have paracetamol. I'm learning to live with the pains most of the time, it's a part of me now. However, I know now easily know when I've done too much, my brain will go into shut down mode and I'll have no choice than to lay down and sleep. Its all about 'spoons', using them wisely. Very wisely. I hope your change in meds helps. Let us know. Take care and keep smiling, SarahLou Xx

Hello Karen, Louise is right, four months is still such early days and you're doing so well. I know it's hard but please try to not be so hard on yourself. I know exactly how you feel. It's nearly 18 mths since my SAH, I started my phased return to work last October. It's great to have that bit of normal back but so, so tough sometimes. Most of the time I'm ok with the new me, I prefer me now, but it's one thing accepting how I am now with friends and family, another thing accepting the changes in my work life. My best bit of advice is to rant and rave if and when you want to! I've learnt that life is hard and it's not fair but then no one said it would be. I'm trying to take each day as it comes now. I am so grateful for all the support I get from BTG, not sure how I'd get through without the guys on here. Take a big deep breath Karen, your'll get there. Read 'a letter from your brain' if you haven't done so already. I read it often, but not enough lately it would seem! I've been a bit impatient with myself! Big hugs to you. Take care, SL Xx

Hello Karen, Welcome to BTG. The same as many others feel, this site has also been a godsend to me. It's full of support and advice with a few good giggles along the way! Ask away with any questions you may have. I wish you well with your recovery. Take care and keep smiling, SarahLou Xx

Hi Ron, Good to hear you've ordered one, I'm sure it'll bring you peace of mind knowing all your medical history is right there if its needed. Ermm.. Yes.. Maybe a tattoo of the MedicAlert logo is a tad too far!! Take care and keep smiling, SarahLou Xx