Daffodil

So lovely to see loved ones supporting each other on here. I alway think it's harder for people trying to support and understand as a observer of what's happened. As a survivor of something like this you have no choice but to deal with the hand you have been dealt but I certainly have become more selfish since my SAH as I often i had to focus just on me to get through stuff. Probably doesn't make me very easy to live with at times. I'm a year on. I don't talk much about my bleed as the severity and location of it meant odds dictated I shouldn't have survived, they are still quite bemused I did. But survive I did and I am learning to accept the changes it has brought to my character, to my pace of life, my working ability. I'm not there at acceptance for any of them yet but it has got easier and it's really hard to explain that to a partner , the sense of loss and grief but also the fear. Stereotypes probably mean that's even harder for a bloke to talk about. Male sense of achievement is so wrapped up in providing and strength it's blooming hard to take the fragility of that ability to continue to do what you've always done. Give him some space but keep reassuring him. Help him see that change is ok. A cuddle, a kiss, a gentle touch on the hand. My experience is that these small acts are So healing. Equally as someone else has said I'm sure your taking on sme of the chores that may have previously been his to ease the load. My hubbie is a dab hand at washing now even if he will never fold it how I used to! Do I care? No, just lovely he does it for me out of love. Great you're on here. You guys are our rocks although we are probably pretty hopeless at telling you that. Note to self. Tell hubby he is amazeballs!

Hi Gavin, Welcome. Sorry you had the need to join BTG but hope you find comfort and reassurance here. Everyone has said the key to this is don't rush it. In fact you can't, your brain wont let you. It will stop you in your tracks if you try and overdo it. Slowly, quietly, calmly. These are all adjectives I apply in my life now that I didn't use much before. Post SAH I felt euphoric to be alive and that masked just how ill , fragile and weary I still was. I was nowhere near fit to go back work but thankfully people around me saw that and stepped in. Hopefully your work will wait until you know you are ready. Try building up to little tasks a little at a time that might help your stamina when you are ready to go back. That's what I am doing and I'm due back end of the month in a phased way. Anxiety is so common. Mine has eased as the months have passed. There's some good information and threads on here about it but you might also try meditating , that has helped me calm my fears and thoughts at the worse moments. Best of luck.

Me too. So pleased you won't have all that travel and hopefully you will get peace of mind soon. Best regards.

Wem, i completely understand as my biggest worry about returning to work is whether I will be able to concentrate at the levels needed to complete tasks because I too struggle to stay tuned into something. I have been doing some brain training in preparation by listening to audio books. It forces me to concentrate in a different way to what ive been used to which is hard work but good. I managed to have a long call with work the other day to get all my IT connections sorted and that went ok so I think it must be helping. I think sandi's idea about lots of little breaks works well and how about setting yourself some rewards linked to that as well. So if you get to x point in the document then you break and get a nice cup of hot chocolate.

Hiya Wade. Glad youre doing ok and that youve found us. Im a firm believer in the power of tears, like Win, so let those emotions out youll feel better for it. Your wife will be pleased you're not bottling it up. Wow , you're doing well to be back at work but but i think your brain is sending you all your horrible symptoms and saying "let me rest a little longer". It's really hard adjusting to the fact that you can't do things the ways you used to do them. We all have this in common to varying scales. So I'm not saying you shouldn't be at work , only you can judge that, but I think you need to adjust how you are doing it, maybe take more breaks and make note of what makes your symptoms worse and don't expect to do things the same and as quickly as you used to. Not yet anyway. Accepting and adjusting is important. Your brain has been through a massive shock and it's trying to run all your everyday actions and heal. That's a lot of work it's doing. Think of how long a footballer rests his metatarsal before he plays a full match again... Anyhow What I have learnt in this first year post my SAH is I have a lower speed that I need to sit at most of the time. That way i can still do most things, (not all) but slower. If I get it wrong and head out in my top gear then I quickly hit the wall. I did that last week:roll: Take care. Come and ask anything, someone will help. You can see there are lots of newer members who are experiencing what you feel. You're not alone.

Hi Nic. I used to get in awful trouble for taking off my thigh length support stockings, (I caused a laugh on another thread as they were green, how bad is that? I hope your mum's are a nicer colour). I can't offer you much advice on the DVT risk Im sure one of the others or maybe your Dad will help there, i didnt have any meds for that i dont think. I had Nimpodopene for three weeks but after that it was pain relief and lots of it. I do know that it took me an age to be able to walk any distance or stay on my feet. I spent over 5 weeks in hospital initially. That's a lot of lying down and a lot of muscle wasting. Then you have the brain trauma to deal with so sleeping and resting were my lot for a considerable time after. So that meant so were my support stockings. When I came home I had a rota of my babysitters as I called them. Friends , their mums , my mum all came and kept me company in the day but I mainly just slept. If I got downstairs for lunch that was my achievement of the day and it was a good one. The healing your mum is going through is immense and it takes up massive energy. Have you asked her whether she feels like doing any more or is she happy with the pace? If she feels wobbly she might need a stick, I still take one with me when I'm out and about , it was hard at the age of 40 , any age to be honest, to need a stick but it gave me reassurance to venture out of the house when I was ready. That was about three months after I walked down the road... My little book of mindfulness today said... "and sometimes the most important thing in a whole day is the rest we take between two deep breaths" It must be hard knowing how to help mum but if you keep her energy levels up with food, help her rest and make her smile then that will be enough. Most important look after yourself and your little one because she will worry about you otherwise.

Siobhan. Glad you're here. I know NNH very well having spent the best part of ten weeks there last year for a few overnight stays:lol: The staff of the HDU are amazing aren't they.I owe them my life. I'm glad you're making the trip home. I think if you plan ahead like karen and paul suggest and get help then I'm sure everything will be fine. Yes you'll be tired but the prize is you will get to cuddled within the safe confines of your Grandmothers arms and that will be healing that no pill or doctor can bring you. It will probably be a very emotional trip. That's going to knock the stuffing out of you so be ready to slow things down if you feel rubbish. Come back and tell us how you did. It will inspire others. . one member on here recently flew home in America post discharge so it will be ok. Enjoy yourself. Keep being kind to yourself. And be gentle with your brother, you scared him.

Welcome Chris. Wow they had a pickle getting you coiled, glad they sorted it and you're doing so well. Hope your leg is fine now. Driving. Hmm. Know the feeling. Well I'm still waiting after giving it the extra 6 months required from putting my shunt in. It's like pushing treacle up a hill coordinating the NHS and DVLA some days. It has improved my stamina through walking everywhere. I could hardly walk when I came out and now I can do pretty fair distance. Take it slowly. The brain is truly mysterious. When symptoms flare up its usually brains way of saying rest up, so try and listen. Drink lots of water and drop in to ask anything. Take care now.

Hi Wendy, I hope you're having a good day. Your daughter sounds amazing and very resilient, you must be proud. A big hooray for all our sons and daughters who help us through this. The techniques you have learnt to help your MS may help you manage the SAH fall out. I hope so. Keep resting and my very best wishes.

Thank you all. Pickle of a head this morning . I am thankful for this special place that I can come to and get these answers and support. Bless you Karen for giving us that, it must have been so lonely before, I'm so grateful you built this haven. The fact that I actually don't need to list out how I feel, that you guys get it means such a lot. I'm not alone with my fears. It comforts me. Wem, wow, you did a huge thing with your work visit. Well done. interestingly my doc acknowledged that it was fear of the known, fear of the returning pain that is a huge battle. He is pretty cool. A make your own BTG coffee morning would be just the ticket Win. Us all sat in different corners, earplugs in, sunglasses on stuffing our faces with cake singing, quietly, ' hey ho silver lining' Mary, thanks for saving me £200 on finding out why I resort to watching the Waltons when I can do nothing else. Michelle. Your lad is an inspiration to me, when I find myself grumbling about my shunt I remember that those much younger than me are dealing with these adult issues often with much better grace and epic courage. Hope he enjoys the race this weekend. David, your stamina is equal to that of an Olympian with how you battle each day. Onwards and upwards.

Thanks for the nice words Karen. That helps me it really does. Relights my hope. I had a friend with me today who had a brain op two years ago who just held me whilst i sobbed and said' I know' ...you guys know too. that's huge comfort. I feel very blessed to be here so it was nice to be able to do this morning for a good cause but selfishly the plan was it was part of my ' go back to work' stamina plan. Part of what I used to do at work was manage some huge staff events , in fact I was at a major event when I popped so it's pretty disconcerting that I don't think I would want to do that anymore and im pretty sure I'm woudnt even cope with anything on a scale that i used to. Wow. Some thinking to be done. But will keep on keeping on.

Weather changes really affect me. Interesting I think? Has research ever been done on the effects of air pressure changes with the brain .... Hot Wheatie bags are in most rooms in my house and I always wear a hat in cold weather now.

Hi everyone. I set myself up for a challenge today, i wanted to test myself. I organised a charity coffee morning. Something I have done many times prior to having an SAH but as the day approached my pain levels and symptoms increased. Yes i have done more but have paced myself as best i can. Even with that this morning i woke up with a feeling of dread, and pain and fear which increased as the hours passed. Suffice to say that during the actual coffee morning I had numerous tears, difficulty talking and speaking and left midway to go an see my GP to check on my increasing pain level. (I am very lucky as he is a sympathetic and knowledgable chap on SAH ) I did go back and finish up and it was a success, and yes I used up ALL my spoons which really annoys me but my question is this. How do you deal with the fear when it creeps up on you? Yes I know and truly believe that the fact that im coiled and regularly checked means I am far safer than many, but how do you ignore symptoms that really could be your shunt playing up but ,ore likely may just be your brain playing tricks or healing. Today was the first time I have actually thought,"but what if the coil is leaking" and then my beloved brain had a field day with me. I know we talk about anxiety a lot on here but I'm struggling with my manifestation of fear and what it does to me. The pain is so real I'm just never sure if I should ignore my symptoms or not. Lucky so far I have always checked it out and one time thank goodness I did as that's when I had my shunt put in. I have had some counselling and will ask to go back I think but I would be interested to know from our lovel SAHers further down the line how you talk your brain down off the ledge of fear? Thanks

Aw Nic, sorry, I didn't mean to worry you further. I needed to have a permanent shunt placed .It was always on the cards to be honest for me as my hydrocephalus at the time of the SAH was so bad. I got through it and it was nothing like the emergency that is SAH.

Welcome Nic and well done Mum for getting this far, you're doing well and everyone will tell you it's early days.Drink lots of water and rest rest rest. Having the SAH in a different country it must have been challenging to deal with all the tough conversations and google is definately not your friend...BTG can be though! I have a similar story to your mum and I'm a year in. It gets better buts it's a slow old journey. On the jaw pain, if she had an extra ventricular drain put in to relieve the hydro then she will have had to be sedated and put under for surgery , therefore tubed for breathing probably. I had a lot of jaw discomfort after that and it can cause some pretty nasty pain, breathtaking really, like it's clicked out of place. I could just be trying to eat or talk and it would spasm. So gentle and careful chewing, some gentle local massage and hopefully it will improve. Your dad will probably be able to advise if it doesn't. The placing of an EVD to release CSF was described in a recent documentary as entering the holy grail of brain surgery. We think coiling and clipping are amazing but draining CSF is major surgery so youre mum rocks! But shes going to have some odd sensations as it heal and that can be very frightening and worrying. On the double vision and eye pain. Not unusual but if anything changes in how the head sensations feels for your mum then please get it checked. I had a blue light taxi more times than i care to remember but alwys better to check than ignore. I personally required intervention later so getting checked was a good thing for me otherwise I'd of been in a whole lot of trouble. Avoid over stimulation in the early days, things like tv etc and gently bring in sensations, sunglasses help take the edge off all the brightness. Try relaxing sounds and definately have as much sleep as possible. Also don't get hungry, I found that made things worse. If dont fancy eating then get build up shakes, keep the energy high. People will follow on and offer far more advice. My very best wishes to you all. Sending a Group family hug!

Hi Jimmy, a warm welcome. Sounds like you've been well looked after. I'm very glad. I imagine Cardiff was abuzz yesterday with the rugby result so well done for keeping it calm. Exciting news about the baby, one thing I can guarantee is that there will be tears when the little one arrives,Surviving your SAH will make that event extra special. Send my regards to your missus, I hope she has weathered the stress of all this ok at what is quite a stressful time anyhow. Keep getting plenty of rest, both of you. It's worth asking for some help for her ( both of you) when baby is here. You will want to do all of it but may find that losing that much sleep is not a good recovery option. Do you have parents or siblings that could help out the odd night just to take the pressure off. Admitting and planning for that now might be a good thing. I had my mum stay one night a week with my first child ( and that was pre SAH) so my hubbie could sleep for work and it was a gift. The strange sensations and tingling are wierd, and may get a little worse before they get better, then again they may just disappear. Everyone has similar yet different reactions. I found sleeping with my pillow slightly raised helped me at night, I still do. Slowness youve picked up already, lots of rest and water. Sunglasses and earplugs can also be good friends. Glad you found BTG. Ask away. I was at the same place as you a Year ago . ;-)And everyone will try and help and reassure Let us know when your baby makes an appearance. ( I'll cry , i always do at newborns now!)

My happy SAH things 1. An understanding that I don't need to rush at anything. I have an appreciation of slowness that I didn't before 2. A Deeper love of family and friends and we have told each other and that feels good. 3. BTG friends Things wot I miss 1. Being able to hear without a buzzing noise 2. A pure night sleep that leaves me feeling rested 3. Concentration

Lucky, welcome to BTG. I'm sure you will be back to flying in no time. This is an honest place to come when you have unexplained feelings or symptoms, someone will help you if they can. I'm a year on and honestly I'm a world away from where I was 11 months ago. My fatigue is so much less, my headaches are not as constant and the irritating niggles and pains are not as breathtaking. The reality of the trauma though has to be faced and that's part of the recovery, accepting the shock of the event and the aftershock of having had blood in the brain. ( i think it's that's a bit like sand in your engine, never a good thing.) you will come out of this either a little or a lot different but healing will come at its own pace for you. For right now my best advice is to turn down your speed dial and go at a new pace. It'll be a change but they say it's as good as a rest. Be kind to yourself. Ask for help if you need it. Let the emotion flow and be proud you survived.

Karen and Jim. So nice to hear of your progress. Keep laughing and loving !

Hi Scarlett. Penny offers some good home truths there. You need to try and turn this situation around rather than have it rule you. You are lucky that they know about the aneurism and they will do something about it , i know it doesnt feel lucky but the facts speak for themselves; it is actually very rarely that they do they burst. There's others in the same boat as you on here who have had to wait for surgery and it's very hard on you. For those of us where those odds have happened and they burst without warning I think we would all trade places to be forewarned and able to approach surgery in a calm and considered way. You have been given a gift in a way. An angiogram in an emergency situation is NOT ideal, a radiographer will always try and avoid that plus there is no way that they would proceed to an angio from A&E without the confirmed presence of blood in the CSF. The only way they confirm the resence of blood is with a lumber puncture. If you suspect that the anni is bleeding then you need a lumber puncture. If its your only way of being certain then you say yes. I have had three LP now and like Lin Lin says they are totally manageable, an epidural was harder. I am not being callous here, I totally understand your worry , i have a anni that isnt coiled and that they monitor with angios and MRIs so i get it but you have to keep it together and focus on the postive outcome here.

Hi Sarah, welcome to the site. Sorry you had a reason to join but I hope that it helps you in the coming months. Early days so take it very easy as much as you can. Driving...well I would apply now to the DVLA , it'll take them a while to get their act sorted but the general guidelines are 6 months after coiling you can drive again. Exercising I think has to be governed by how you feel, I wold probably avoid any mega energetic but I am swimming again now and other members do a variety of exercise. So take are, drop by the green room for a general chat, anyone can join in that, and ask anything that's bothering you. Someone here will respond with a shared experience.

You're right, it is far too young to be dealing with the harsh realities that SAH makes us face but that said you have done so well in getting back to University and regaining some of your normality. you should be very proud of that achievement. What you decide to do next is up to you, maybe it's a change in direction, maybe it's a deserved year out, whatever it is seize that change and try and find enjoyment in it. I could offer many platitudes about how lucky we are and how time heals and whilst those are true it's still so scary , not to mention frustrating , whatever age you are , to be stopped in your tracks and be reminded how fragile our lives actually are. Once you have accepted that though it can be easier. Its good youre talking, I used to do something at work where we got people to plot their life journey line , the peaks and trough, and then we would share them. On mi gosh, some of them just made me gasp when I heard the hardship or pain that people had experienced. Some were lots older than me, but some were younger. All of them without fail when they had a sharp dip indicating a very troubled time all were soon followed by a high point. That make me hopeful that this experience im in right now won't end up defining me but be one of many points of my life and there's more ups and downs to come. You're so young , but with that youth you have courage, determination and stamina which has been sharpened even more that your peers because youve survived something most of them can have no idea about. That will be a gift in the future. Sure you can't do everything they can but hey why follow the crowd anyway.

Hi Sally, Pleased to hear your sister is making progress. I can't offer help on the sneezing but I have had on and off shoulder pain since my coiling and SAH. My GP thinks that maybe there was a little nerve damage when they placed in a external ventricular drain. I am not sure if your sister had additional surgery but they do place you in some wierd and wonderful positions during which can affect the ligaments. Mine is improving with gentle massage to the tender area. Best wishes.

Aww holly. Big hugs. It will get better. They couldn't get my BP down even after 6 weeks in hospital, in fact we used to laugh in the end because we knew the readings would be so high. All my echos were fine and i hope yours are too. So at the age of 39 I got to start popping BP pills. The people on here helped me to understand that was ok. I'm sure their investigations will get to the bottom of what's causing yours. They will be keeping a good eye on you it sounds, many of us have other anneurisms or things they are watching with us, we are the lucky ones. It's good you have been released so quickly, that means they are happy with you, but now you need to take things slow and start the hardest job of healing. There's plenty of us on here with kids so we know how hard it is to slow down but slow down you must. The headaches come with the territory but if they change in intensity then seek medical advice. Main thing is drink plenty of water, rest as much as you can and steer clear of noisy and intense environments for a while. I found TV was a no no for quite a while, it wiped me out. Take care now.

So you passed a year at the weekend. That must have felt good. I am at a similar stage to you, my SAH 1 st year is coming up end of the week but I am yet to return to work. The honest answer is We are all different in our recovery rate and I'm sure the size and location of the bleed, what kind of surgery and the treatment we receive all create a unique formula for each of us. We're they able to help with your AVM bleed or are they waiting to do something.how are you feeling in yourself? To be back at university is amazing but I imagine very hard, it's not surprising you are unsure right now. My greatest challenge now I have regained much of my memory and mobility is concentration levels, if youre the same that would make assignments challenging. It's something I'm working on improving just like I did for my stamina levels. Are you getting help back at University,they can offer some I am sure. Also have you talked about your bleed to anyone? Its good to want to get on an resume your life but it's important to face up to the fear and uncertainty that this kind of illness brings to all of us. I'm sure others will be able to give more advice.