JayKay

Hello and Welcome! My SAH was 4 years ago too. I'm glad you have found us - maybe showing this to your family will help them understand It's really hard adjusting to the "new you". I'm still adjusting.... Every time I think I have a handle on it, I crash and burn. Doh! It's ok though. We are the lucky ones, so I just focus on that. On how beautiful life is and how lucky I am to be here. Don't get me wrong, it's not all sweetness and light. My 13 year relationship broke down, I had to move out, I had to get a new job.... BUT although I know the bad, I focus on the good (That's not my quote by the way, that's from a lady who survived Auschwitz!) Anyway, lovely to meet you!

Wow it's amazing how similar we are isn't it? I can't deal with lots of noise either. At work I'm coping because it's part-time, but I do relish the days when I can sit in a back office and get on with it (normally I'm in the open plan office). I don't do well with big gatherings any more either. The noise levels really just overwhelm me, and it's no fun at all! I too try and tell myself I'm not lazy. My relationship broke down for more reasons than I'll go into here, but I did feel he didn't understand why I wasn't back to 'normal', even though I'd say he's jolly lucky I wasn't more disabled personally!! Anyway, I like the fact of not crashing into the wall but the wall coming up and stopping you. Great visual! Night all

This is my main problem! I'm just 9 days off my fourth anniversary and it still hits me like a ton of bricks sometimes. I have got better at "pacing myself" but it's not always possible. I also have to contend with very low Vitamin D and psoriatic arthritis, both of which can make you tired. I work in the NHS and I went back to work gently, 10 hours a week, after about a year. Then at 2 years I got a part-time job 18.5 hours which is a jobshare. Luckily this means I only have to get up early 2 days a week. I don't know how I'd cope at all if it was every day. I have recently realised that I have adjusted my ways - I used to just say yes to everything and was busy all the time. Now I'll turn things down if I'm tired. It's not been easy but now it's second nature. I don't worry about "letting people down" any more either! If I'm tired, you don't want to be around me, trust me! Wem I'm not sure why the neurosurgeon said what he said. Look at the first line of this! http://www.stroke.org.uk/sites/default/files/Fatigue%20after%20stroke.pdf Anyway, as long as the clinical reasons for fatigue are eliminated (vitamin deficiency, thyroid etc) then fatigue is just an after-effect we have to learn to live with. Keep smiling

How weird! I never though of it, but I too have had that "dog poo" smell when there was none. I just thought I was imagining it. More recently, I smell gas in the house, but I'm told it doesn't smell and the gas check was fine, so who knows.... I also smell gas often in the street and think the place is going to blow up! I never noticed any of this before, but I've no clue if it's related.

Thinking of you here too. So sorry Big hugs xxx

Brilliant thread! Like Winter, I'm coming up to my fourth anniversary (10th Feb) and it's been quite a ride! It's true, it does take years to get over a SAH - even if you don't want to hear that when you have one. I still don't think I've completely got it sussed. It's very hard to accept your limitations, and who the "new you" is, but I think I'm kinda there. It's more automatic now to turn down invitations or rejig my diary to avoid being overtired. I used to say yes to everything and now I realise I can't. I can't do tai chi at lunchtime AND a volunteer committee meeting in the evening for example... but luckily my friends (and family) understand. I wish my partner had been able to read a thread like this 4 years ago. We split up about 2 years post-SAH. Lots of reasons of course, but I know he didn't understand how different I was for a while. Unfortunately it was impossible to tell if I'd ever be "back to normal" again, and if so, when. We're still very close, but he's no longer my life partner, which has been tough. I started working part-time about 1 year post SAH, and 2 years on I started a part-time job. That was reallllly hard at first, because one of my after-effects is problems with speed of processing, and taking on board new information. I've got into quite a routine now, but there are still days when my speech gets a bit slow or I get overwhelmed by paperwork. Oh and of course, there are the days when I say thank you to the cashpoint like this week lol, or get confused by the plot of a film. On the plus side, films are always new to me, even if I've seen them before hahaha. So if you're new here, take heart. It's going to be ok, it just might be a bit different

Hi Dave and welcome to BTG! Listen to everyone on here: TAKE IT EASY! It's very hard having an invisible disability, for that is what it's called. It's very hard to do but you must learn to pace yourself. There is no use forcing yourself to do stuff because you'll just crash and burn. I did that for AGES and still do occasionally, but it gets better All the best!

Hi Susan and welcome. First thing to remember: be gentle with yourself! Time is your friend, don't try to run before you can walk take it as it comes. Remember to pace yourself. When struggling, remember: don't compare yourself to how you were before but how you were when you came out of hospital - that way you'll see how far you've come. We've all been there and it was really reassuring for me in the early days to see how well people were! Keep smiling

I'm the same as Daffodil. No one spoke about it to me, really. I kept asking what happened this time, and what did I do then? etc. I do think, though, that WRITING about it really helped. It was suggested to me by more than one doctor/nurse, and as I had a blog, I used that. It has been very therapeutic. As soon as I came round in the hospital I was all "I don't want this to define who I am" and it hasn't BUT it is still a huge part of who I am now, so I have come to accept that and wear my scar with pride - not that anyone can see it really, but I can! Be gentle on yourself. We have survived a life changing event and it takes such a long time to get over it. We have to learn to pace ourselves and I can't tell you how hard that is! We are so used to living such hectic lives, but our body is telling us to slow down. I've just (nearly 3 yrs post op) started Tai Chi and I'm loving it. It teaches us to breathe, to slow down and yet helps to strengthen the body (and mind). This place is the best, and I'm so glad you have found us. Keep coming here. Ask any questions you might have. Sorry, that's all for the moment but I hope you will find solace here.

Hi Mikey - I'm just discovering this thread as I have been away from BTG far too long. As Gill says, please do not be so hard on yourself. I have had plenty of ups and downs since the SAH and the best thing I did was go on anti-depressants. There is no reason to be embarrassed or upset about taking them: if you had a bad heart or bad liver you'd take meds, right? Well this is no different, ok? I hope you will continue to see the therapist and if it's the wrong one, then ask for another referral. Don't give up. The NHS is there to help you and even though sometimes it doesn't feel like it, there IS help out there. Have you joined a Headway or Different Strokes group locally? I got a lot of help from the Stroke Association although on the first visit there I nearly never went back because most of the others were in their 70s and 80s lol. In fact, you can learn a lot from them all and I am glad I kept going. I will go and find the wise words of Lin Lin that I copied and kept, and will come back and post them. They really helped. It also helps to not try to compare yourself to the pre-SAH you, but instead look at what you were like when you came out of hospital for example. See how far you have come. Sounds like you have a wonderful daughter. My daughter is 22 and has been my rock too. My 13 yr relationship broke down because of the SAH, so it hasn't been all sweetness and light BUT I try to keep positive and remind myself that I'm a survivor because I made it through. We all are on BTG. YOU ARE A SURVIVOR ok? I'm glad you came on here to ask for help. It's what we are all here for, and what BTG was created for (for which I am deeply indebted to the founders!) Edited to add: this is what LinLin wrote:

Fascinating! I was in a very stressful temp job at the hospital, and that day had been the worst day for weeks. I even had an appointment with HR at lunchtime to discuss my horrible line manager. Had a bad headache all day, and had had a bleed in the eye a couple of days before. I went to Pilates anyway (I'd paid, I wasn't going to miss it) but while they all did energetic stuff like rolling from their backs to a standing position I just lounged on the mat. Got home, sat down, took a sip of Diet coke and bam. Like someone else said, I felt like I couldn't move my shoulders or neck, and my head felt like it was in a pressure cooker. Then I started feeling sick. Then I said to my family, call 999. The paramedics said "do you want to sleep it off or go to hospital" and I said I don't WANT to go to hospital but I must. I pointed to my head with my right hand and said "something's wrong in there" (or words to that effect). I knew I had to get it check out. Thank GOODNESS!! (I've read elsewhere that Coca Cola is sometimes a factor. I also know, from work, that Coke of the other variety is another one, and a friend's brother in law died like that - massive SAH, was brain dead by the time he got to hospital)

This is a good thread! I don't remember from last year either - oops! I'm nearly 3 years post-SAH and I'd say most days I'm 100%! Am I just being optimistic? Or am I in denial?! The problem is, when I feel ok I go at everything like there's no tomorrow, and then, like before Christmas, I crash and burn and spend days in bed. I'm stillllll trying to get the hang of pacing I started a new job 2 1/2 days a week in March. It was a new job because I had my SAH when I was temping, so didn't have a job "to go back to". I was doing a bit of ad hoc work here and there from about 18 months after the SAH and as I work in a hospital they were more understanding than a corporate employer. I did 5 hours on a Tues and Thurs which gave me time to rest in between, but there were some weeks I couldn't do it. Since starting this job, however, I have come on in leaps and bounds and although I know I could definitely NOT do it full time, I seem to be coping really well. So, I'd say that I average at about 80% when I take care of myself and listen to my body. I'm happy with that!

BIG HUGS! I had emergency clipping so it's always going to be slightly different to what you experience, but still basically the same. I remember seeing the stitches and thinking Well, you might be an amazing brain surgeon but I don't think much of your stitching skills, lol. In hindsight it was probably the Registrar or another junior who closed up but anyway, the head is well perfused and I must say you can't see my scar now (on my forehead) unless I point it out. I had a bit of hair shaved on right temple and down to the ear, but it didn't really look too bad. I have pics on my profile. (see this link here, as for some reason they don't come up under "photos"). The main thing is to drink plenty of water and to get plenty of rest. I don't know how much of my story/recovery is related to the bleed or the surgery, it's hard to tell. I was in hospital for 6 weeks with the last two in my local general hospital, where I needed to concentrate on getting better and managing stairs before they'd let me home. You can read my story on my blog (see below) and clicking on the theme "the brain thang" in the menu on the right hand sad. The fun begins here. All the best and keep smiling!

WELCOME TO BTG Alison It's so good you found us. I, too, have two birthdays. My SAH was 3 days before my 50th, and I had surgery the day before my 50th so it was an amazing gift. It'll be 3 years on 9th Feb. I blogged about it (link in my signature) and you can read the Brain Thang posts on there, starting in Feb 2010. This place was a godsend. To speak to other people who'd been through the same thing was so reassuring. You can come on here and say "today I feel...." and there is ALWAYS someone who knows that exact feeling. People are so welcoming and lovely. After I had my SAH my sister-in-law sent me a link to the blog of a lady who had a stroke just a week before me. She was paralysed down one side, the whole shebang. Reading her story made me feel better because if SHE could be positive then what did I have to worry about?! I also read the blog of an American lady called Catherine who had hers 3 years before me (http://champagneandchocolates.blogspot.co.uk) which really really helped because I could see how well she was doing. We are online friends now. So it's 'pay it forward' time - my blog has helped others, who now help yet others. Isn't it wonderful? I have to add, I was a Christian and pretty spiritual but not devout before my SAH. As soon as I was in hospital having scans and then finding out what was wrong, I just started praying. I said the Lord's Prayer, Hail Mary and anything I could think of, but especially the phrase "if you believe, what are you afraid of?". And I say hand on heart that I was the calmest I have ever been in my life! My brain surgeon even said to me once "someone up there loves you" because I had such a bad bleed I think she was not sure of my outcome. Sorry to waffle, but I have to say, just look at us "oldies" on here and see how everyone is getting on and there's no way you will feel anything but positive and uplifted! See ya

Hi Inez and welcome! You are in the right place. Now: TAKE. YOUR. TIME. recovering, ok? Lots of rest, lots of fluids. Take it one day at a time. You are welcome to read my blog to see how far I've come - it's nearly 3 years since mine and boy it's been a journey All the best!

OOh a baby! How exciting (i'm just catching up lol!). Many belated congratulations on the birth of your baby. I'm so glad you have great support because let's face it, a new baby is so tiring, even without the added complication of a previous SAH. As for the joints and the hobbling, I know how that feels. Have had psoriatic arthritis since my late 30s/40 but it was all quite well controlled until the SAH when I had to stop taking one of my meds. My type of arthritis is inflammatory and auto-immune. I have realised over the past couple of years if I eat low carb and cut out sugar I feel so much better and my joints don't trouble me. Why I keep falling back into the trap of eating is anyone's guess Anyway, if you do have some kind of arthritis, one of the symptoms/side-effects is brain fog. Fatigue. So it's a double whammy for us. I do hope you get lots of help and answers and wish you many wonderful things for 2013...

Hi David! You don't know me, but it sounds like you have been a rock for others in the past. Now it's your turn to lean on us. I too have known depression, both in the past and since the SAH. Personally, I have found meds useful and have always been able to wean myself off them without problem. I feel that (if you get the right ones), rather than blanking it all out, they take the edge off the worst and allow you to step back and see the wood for the trees. That way, you can start working on getting better. I'm another proponent of the gratitude list. It really really works! At first, finding something you are grateful for can be difficult, but if you start with things like being grateful you made it through the SAH, the sun is shining, or that hug from a loved one. Bit by bit things seem a little brighter. I hope you don't think I'm being preachy!! Hang in there David!

Hello again Wem! Thank you for your kind words on my thread. I have to say, although I wasn't in a managerial role when I had my SAH, I certainly understand the term "workaholic"! And as you read my blog you'll no doubt have gathered that I have had to reassess my life. A lot lol. I know when they say said "18 months to 2 years" for recovery I thought "oh no, not me" and this seems to be a recurring theme among BTG devotees. I now know, nearly 3 years on, that I'm only JUST getting back to me, really in the past 6 months. I think working again has really helped, although I wasn't inactive for all that time, what with creating a website for the community centre, being a trustee, running a Different Strokes group etc. HOWEVER, as someone on here once said, I've had to adjust to a "new normal". I am thrilled to be working part-time, and I only manage this financially because I share the bills with my daughter and I get tax credits. It wasn't my choice to do 2 1/2 days in a row, because it's a jobshare, but it's definitely the most I could do. I do have an ad hoc sort of second job, which helps financially obviously, but it's one I can fit in when I have the energy. Anyway, enough waffle. I was just coming to say I know how hard it is to go back to work, and how hard it is for others to understand our limitations. Hell, I didn't understand my OWN limitations! But I do remember there was a Stroke Association leaflet on the after-effects of stroke that you can give to your employer so they can see for themselves that you are not exaggerating your problems. I look forward to talking to you more!

Fun thread! Lots of little subtle things, such as I would cry at the drop of a hat before the SAH, but I've only just started to cry at stuff 2 years on. I used to hate slapstick and certain "funny" things and I used to always ask my daughter to switch off the Simpsons... now I laugh out loud at them! Never remembered my dreams after the SAH for months and months, but that's come back now. I had a huge problem understanding jokes and reading verbal and non-verbal cues (in fact it caused big problems in my relationship) but now I'm more less back to how I was before. Listened to music all. the. time. before - but couldn't listen to anything for the longest time (I eased myself back in and now I'm back to listening to music most days). As for the tick tick noise in my head, I'm glad someone mentioned that! I had a craniotomy and was told it was most likely the bones knitting back together. Hmmm, problem is, my skull is supposed to be all mended now but I still hear it every single day! If I press gently over the area of my craniotomy it stops......

Oh believe me, I know what you mean!! One of my biggest problems was memory - and it appears it still is I am just over 2 years post SAH and although I am a lot better than I was a year ago, I know that my memory still isn't back to what it was. Will it ever be completely? Who knows! I just know it's better so even if it's not perfect, I'll just have to live with it. At least I tend not to leave pans on the stove or taps running now I think the main thing for me was when I started to accept that I couldn't do what I could before. It's still painful at times but accepting it is the biggest hurdle. You are very early on in your recovery aren't you? Don't worry too much - the brain is amazing and you will come on in leaps and bounds!

Hi Alison - gosh you've been through a lot! I'm glad Chris is making progress, it must have been heartbreaking... but keep looking forward, not back Like you say, the brain is a-ma-zing and as it heals I'm sure he'll continue to improve. Do get in touch with Headway and see how they can help you while Chris is still in hospital. All I can say is, no one can really predict anything at all with brain injuries, as each one is different. If my mum can recover from a serious stroke at 74 when she couldn't speak, move, anything, and live independently at 80 with just a home help and cleaner, well there's hope for everyone!! Take care and keep smiling like you are

This thread makes me so angry on all our behalf!! I am here to tell you it's normal what you are feeling and I so wish that everyone got the right support after SAH. I actually feel like I did get better help than most, and maybe because I work(ed) in a hospital, most of the people I interacted with were very supportive and knew what an awful thing I'd been through. That wasn't the case with some "friends" - in fact I distinctly remember getting really pxxxxd off by an old friend who lives in the US telling me after a couple of months that I had to move on and forget about it (all the while telling me that it took her something like five years to get over a hysterectomy.... yeah, I didn't feel too well disposed towards her!) Anyway, you are welcome to check out my blog (www.wagwaan.typepad.com - Click on "the brain thing" in the right hand column and go back to Feb 2010 to see from the beginning how I felt). I know that when I had my SAH my sister-in-law sent me a link to the blog of a lady who'd gone through it before me and it was SO wonderful to read it and know I wasn't alone! (hers is http://champagneandchocolates.blogspot.com/) And lastly, BTG was a lifeline, so do keep coming here and asking us anything - there's always someone who's felt the same. Good luck and take care xoxo

What an interesting thread! I'm on ESA as I was a temp when I had my SAH - I tried going back to work as a temp (in the hospital, as before) about 6 months ago and crashed... I have been doing two five-hour shifts, Tues and Thurs, for a couple of months now and it's just served to confirm to me that I can't do full-time yet. I'm 19 months post-SAH and I thought I'd be back at work after a couple of months, ha ha! Basically, you are allowed to do up to 15 hours as long as you don't earn over £90 or so a week I think. I'm due another ESA medical soon and we'll see what they say but the fatigue issue has been horrendous. Not only because of post-stroke fatigue but also due to my arthritis meds - and also we've discovered that my Thyroxine levels were too low which has never happened in the 20+ years I've been on it! Anyway, I recently had ten days at my mum's in Normandy and i rested and slept and feel much more "normal" now. Thing is, I want to do more work at the hospital (despite my GP being against it, but at least it's only a 3 minute walk from home) - and I'm scared of giving up ESA and then crashing and burning again. It's really weird as I used to be such a high-flier! Oh well, I'm sure bit by bit it will fall into place. Anyway, I should be in bed by now - this always happens. Oops.. Nite nite!

Big hugs!! Onwards and upwards then. Like the others have said, his parents are probably pretty shell-shocked but still, it's weird they didn't mention the children Take care!!

Oh sweetie - I'm so sorry you are facing this situation right now. As others have said, we have seen how hard you've tried to make things work. His family aren't looking after Rich 24/7, they have no idea what it's like. And do they know that he has said he doesn't love you like before? Don't feel guilty. You are doing what you feel is right for your children and I totally agree. You cannot put their lives at risk. Rich's brain injury has turned him into someone else and I don't think anyone has the right to judge you for putting the kids first. I'm rambling now but I wanted to tell you we're behind you all the way. If you ever want to chat, PM me. Take care xxx