goldfish.girl

Hi Daff, My boys were 17 & 7 when I had my SAH. My (at the time) 7 year old was alone with me when it struck. I have to be honest and say a lot of what has happened since is stuff I know because his Dad tells me about it. My son was badly traumatised after seeing me in HDU the day of the op, I don't remember this, I just remember feeling upset the following day because his Dad came to see me without him. I didn't know he had been violently sick & didn't sleep after they left. He used to panic at my slightest tiredness, wobble on my feet or if I had a headache (I vaguely remember this & having to reassure him that it would be ok). Time really is a great healer. He still gets worried if he comes home & shouts 'hi mum' & I don't answer because I am asleep or in the back garden & haven't heard him. He still gets tearful if we talk about what happened (which we don't much now as it was 4 years ago). A few months ago he got very upset when we spent a week away with his brother, who mentioned that his naughty teenage antics at the time probably didn't help & my little son cried and thought it was all his fault as he was quite a difficult wee boy at that time. Hearing this was heartbreaking for me - I never knew that either of them felt in anyway to blame. My younger son was given a book by the Social Work department called 'The big bag of worries' aimed specifically at children who are worried & scared by family events. He also joined a Young Carers group where they do activities with other children who have a sibling, parent etc who is unwell in any way. This has been a huge help & maybe an avenue to explore? The shock & horror does fade for them & they return to their usual cheeky selves but I don't think the worry ever leaves them totally. Also they learn to accept that you can't do all the things you used to with them and over time they start to realise and understand that too. It's not nice to be less fit to do things with them but as your children get older, it is easier for them to learn to do something quiet at the times you are sore or need to rest. They WILL get there and they WILL be ok in time with the changes to life as they knew it & if you can access help via social work or carers groups to help with this, please think about it. Michelle xx

Carl, It's always lovely to hear when things are going well for someone. Your days to do are getting few You'll be a man of leisure before you know it! Michelle xx

Hi Kris, I did go back to work but my cognitive problems meant I couldn't do my job any more. I don't feel jealous of others who do go back, I just think 'why didn't that happen for me'? It makes me really sad & frustrated and occasionally makes me cry my eyes out for what I have lost. My sensible side recognises it as a great opportunity to do something else (I was getting fed up with admin work anyway) but even the volunteering opportunities with support scare me. I have absolutely no idea how I will feel when I wake up each morning & obviously a level of commitment is required. Some days I feel good, most days I don't. The good days see me catching up on things in the house & walking my dog myself. The bad days see me in bed or doing something 'simple' like organising a meal, then guilt ridden because that was all I achieved for the day. My dog has a face to add to the guilt trip (luckily my dad walks her a couple of times a week & she's nearly 10 so is more sedate these days). It does trouble me that I had a 'small' bleed albeit with 3 annis & two brain surgeries required - other people have a 'bigger' bleed & get back to the life they previously had. How is this possible? Why can't I do the same? It drives me mad so mostly I try not to dwell on it. Maybe a different part of our brains took the blow??? I do, however, know that it is not due to a lack of effort on my part or a weak spirit. Knowing that is what keeps me going when I feel sad. Michelle x

Just a thought Dawn......if you were deaf, would that excuse everyone else from having to get your attention some other way when necessary? Or would they just sack you because your needs caused them extra work? It is disgraceful that to this day in the UK disability employment rights are open to such wide interpretation. I only have light ear plugs, I'm going to look for sleep ones after reading your post, it would make supermarkets bearable again!! Hope next week is a lot better for you xx

Hi Dawn, I'm sad & angry on your behalf over this. Why on earth did the new girl run to your manager? If she had tried again to get your attention you would've had the chance to explain that you didn't hear her because you had ear plugs in or even that you were so busy concentrating on what you were doing that you didn't hear her! Either are possible after a brain injury!! It is a difficult situation for you. You have gone back & deserve so much credit for that and support from your work mates. I know now that we have to remember that others do not 'get it' and if I'm honest I knew NOTHING about brain injury before I had one - they need to learn from you. They also need to learn that a good manager would highlight your achievements too, not just things they see as negative. To say' if you don't want to make friends' is just outrageous. Perhaps it would be better if you tried to explain things to the others without her input? I'm wondering if the staff from your Headway group can help? The lady I saw from Momentum (which is similar) met with my bosses to explain things more clearly to them. I chose not to go into that meeting as I felt that my bosses would ask more questions if they weren't considering how their questions might make me feel if I was there. I had no feed back at all when I went back (everyone was really helpful although I see now that it might have been helpful if I had been more aware as I thought I was fine). A year later a new deputy manager turned up & nasty does not describe it!! A bit like your manager is being just now. Don't let them get you down Dawn, look how far you have come and if you can have someone from Headway mediate I think that would be a great thing. Good luck Dawn, keep smiling. Michelle xxx

Sally, I'm looking forward to hearing what your doctor says. I haven't spoken to my GP, I spoke to the neuro psychologist about it so it will be good to hear Scottish GP's views on this. Good luck. Michelle xx

Hi Sandi, I love hearing how this is going for you. It must be fantastic to have that 5 hours of being how you used to be? It sounds like a dream come true to me (although a pill that just made everything better full stop would be even better ) I also love the thought of something that works but am not brave enough to try it myself but I take 2 different blood pressure medications so I'm not sure I'd even be allowed to try it?? Thank you very much for keeping us updated on your progress. And long may the few great hours each day continue! Michelle xx

Patsy, I read all the mis-diagnosis stories on here with absolute horror. I was lucky that the GP who responded to my 'medical emergency' call knew what my SAH was - he wrote '?SAH' on the paperwork for the ambulance crew he had phoned. Although he didn't hang around until they turned up & left me with a 7 year old child in charge - thank god things didn't get worse at that point, my son was scared enough! I made up a few (not repeatable here) phrases for what SAH might mean whilst lying there waiting for the ambulance- I had never heard of SAH before that day. As an NHS employee, you know exactly how to hit that GP where it hurts over his failing and have nothing to lose by doing so. Maybe that would wake him up to what he should have done on that day & teach his colleagues a valuable lesson. Perhaps others in that practice will attend training in the SAH/Stroke field and be better GP's for it? Michelle x p.s I have to say though that for me an acknowledgement along with an apology & a commitment to learn from their mistake is more than enough (they diagnosed me correctly & quickly but in my sons brain cyst case they could not have got it more wrong & their error caused a few more weeks of unnecessary suffering). Financial compensation will never help but a willingness to learn from their mistakes absolutely would.

Hi Sonia, Great to hear you have some answers & even better to hear you've found a health professional whom you trust (they seem hard to come by with brain issues!) Fingers crossed your eyes will remain stable now. Michelle xx

Patsy, I am so sorry to hear this. I know exactly how frustrating the driving issue is. My GP was also very reluctant to get involved with DVLA. I think it was something to do with legal issues and they are not brain experts. My neurologist, however, was happy to do so although I also had to complain about her secretary too, obstructive & up her self doesn't even begin to cover it! Hopefully your husbands e-mail will do the trick. Did you get a copy of the instructors findings to send to your surgeon as this will cut down waiting times for you? I would also send the report to DVLA. Don't give up. I went to pieces many, many times over this issue & I have only been back on the road for about 5 weeks. Already it seems like that awful time was ages ago. Dealing with DVLA is a very long, frustrating road but YOU WILL GET THERE. You have proved that you are competent to drive the rest is just paperwork now. I don't say that lightly because I really do understand how hard it is to be without your freedom especially when walking every where uses up all your energy. I live alone with my son and quite far out of town with one bus an hour so I really do get how badly not having your licence interferes with daily life. Good luck! Michelle x

Hi Stephen, Nice to meet you here. Sadly, I think it's a little bit to common for doctors to miss a brain condition in young people. Obviously, these things are rare when you are younger but as you say, you didn't see your GP for a long time (I had the same situation with my son) and I agree that if you are a very infrequent visitor perhaps that alone should alert them to the possibility that something really is wrong. Two weeks does seem to be too quick to return to work so ask for more time if you need it. I went back to work after 8 weeks but it was very difficult and the tiredness was quite severe. I was told that 3 months is the standard 'starting' point for time off after SAH but everyone is different - some people need less, some need a lot longer. It would good to hear how you get on. Michelle x

Hi Lisa, I get the aura too. Flashing zig zags at the sides of my vision & blind spots when I look at things. The last one was the weirdest yet as the flashes & lines were in very bright colours not the usual black & white. I am usually exhausted after them, my speech gets muddled & I sleep for several hours. My SAH was 4 years ago & I've had them since then. They don't seem to happen as often now though. I hate saying that because whenever I think 'oh they must've stopped' I get another one!! Michelle x

Hi Kris, I do hysterical, tears running down my face laughter at things that really are only mildly amusing (mostly at my own errors!) and cry at things that are sad but not really in any way related to my own life. Guess it's just another of those 'brain things'? I like the giigling fit part, except when I'm driving,the tears I could happily live without Michelle x

Try not to worry Daffodil, your hair will grow back and hide the shunt soon & no-one will notice it then. My sons burr hole & shunt come out of the right side of his head, the valve is behind his ear which makes it stick out quite a bit compared to the other ear but he keeps his hair longer now to hide this & it is not noticeable. His pipe work runs down his neck & chest to his abdomen & was very noticeable at first but as he's got better and put on some weight it is really hard to see (maybe just as it crosses his collar bone now). At the start I could track it all the way down his body so I assume it settles in over time and becomes almost invisible? You have had such a lot to deal with while recovering from SAH and I promise that in a few months, a year, 18 months you will keep getting better & better physically & emotionally. Michelle xx

I can honestly say that when I was working - that was it, just work. It left nothing to do anything else in life. I can deal better with fatigue now that I am not working but the triggers haven't changed & the effect is just as bad. ANY kind of noise - passing traffic, dogs barking, people talking too loud and car left with the engine running outside my house cause a headache & then the fatigue kicks in. Supermarkets & bars/restaurants are incredibly tiring because I struggle to filter out back ground noise. Any thing that requires my concentration, even having a conversation, trying to fill in forms or driving leave me sleeping for a couple of hours afterwards. Being in a busy place, like a shopping centre will wipe me out for a day or two. Doing anything physical like carrying shopping, or a small amount of work in my garden leave my head banging, my body shaking and the need to sleep for a couple of hours. Stress when something changes in my plans for the day or there is a problem with my child etc will floor me. Think I remembered all my triggers to fatigue??? Michelle x

Hi daffodil, I don't have a shunt but my son had one fitted in Jan 2011 (for a brain cyst, not an SAH) The operation knocked the stuffing out of him & he was incredibly unwell for a very long time. However, I am seeing improvements now - he can run about & jump on his trampoline for longer periods, although those may not be activities you're planning to do . He also struggled (and still does occasionally) with the emotional side of having a shunt fitted. One of the other members on here gave me the advice to see it as a friend helping you instead of an enemy. This seemed to help him a little & I hope it helps you too. As Penny said, once it is set right you will hopefully have no further problems. My sons' has not needed to be adjusted so far and although it has been a long road, there are very definite improvements happening now. Michelle x

Hi Dawn, Using excel almost broke me when I went back to work. I hadn't used it previously & was given another new task which involved using it. I got tearful with frustration too & hated myself for being so 'thick'. My boss arranged for another member of staff to work with me on it whenever I used it as being shown something once or twice doesn't work for my brain! I have to see and do something new many times before I get it. Once all the staff at your workplace change to it, you will all be learning together & can ask each other - you won't be the only one who struggles. And if you need help, is there someone you can ask to arrange extra help like I had until you understand it fully? I felt very embarrassed about it & more so when I kept making the same mistakes over & over again but the person helping me was someone I got on well with and really showed his true colours when it came to helping me & understanding that my brain wasn't working the same (we had always had a work relationship that involved banter & cheek before then - I never even knew he had a caring side ) Good luck & don't give up - it just takes us a bit longer than others to understand something new, but we CAN do it! Michelle xxx

Kris, in my own experience I have found that ANY type of brain injury, however caused, has very similar effects and I can honestly say that after the patient is 'fixed' there is very little understanding of the long term consequences by medical professionals. I have personally found that the only true understanding comes from people or carers who have lived the experience. As Bev says, I have put the actual SAH event behind me. What I deal with now is the permanent brain damage that, in my case, has been left behind. I believe that the more of your old life you are lucky (???) enough to regain the further forward you move on. However, if you have issues with pain, fatigue, personality changes, cognitive defects, the list is endless, you can't put that behind you even if you can distance yourself from the event. For a lot of us now that the horror of SAH & surgeries is at last behind us, the understanding on BTG from others who are living with damage to their brains is the only understanding we have contact with. I would imagine (and hope to never find out for myself) that even a breast cancer survivor who is in remission will think people see them as better & forget what they have had to go through? Michelle x

That is such a good question Carl. One that I have asked myself a lot recently. I want all the obvious things like the pain & tiredness to go away, my boys to be healthy and happy & to not have to worry about money. Like Penny (kind of) I am lucky that I have a medical pension BUT it only covers my rent & council tax with none left over so money is still a worry and always will be unless I am ever well enough to work properly again. Aside from those obvious 'wants' what I really, really want is a house next to the sea just in case I ever lose my right to drive again (even with it, I am not always well enough or energetic enough to go there everyday). That would make me happy, honestly. I do not ever want to return to the stressed out life I had before SAH and living without needing to be well enough to earn plentiful money but close enough to hear & walk to the sea every day would be my absolute dream. Perhaps a small handful of genuine friends to share that with would make that lifestyle perfect. Michelle x

Sandi/Macca, thank you for your supportive words. I am OK again today. I cut down a tree & finally did my ironing (months worth!!) AND I didn't have my afternoon snooze To bring the positivity back in I was bored with my administration job a while before the SAH so it is an opportunity to start again now that I am no longer working and not able to do that type of work satisfactorily. I can't believe that I walked out of my job nearly 2 years ago - it has gone so fast in some ways. I don't think any of us would choose to walk out of a well paid job to do something we might enjoy more - this is an opportunity that without SAH I would never have been brave enough to take. A few tears, a bit of sadness & feelings of loss then it's time to get back on that horse & find something better!! Even if it doesn't pay me a wage The possible volunteer work within a brain injury day centre seems to have fallen through in that they thought I could benefit from the service they provide rather than help out. I really don't think I need more help than I am currently getting & working with clients & staff who have such a good understanding of brain injury really did seem like the ideal voluntary job to me. Ah well, on to plan B! Will update if/when I take the volunteer plunge. Michelle xx

Hi Olef, it's brilliant to hear your news You must be so relieved that it is now over and you can look forward to carrying on with your life once you have recovered from the op. Definitely a cause for celebration once you are feeling up to it!! Michelle x

Sami thank you for clarifying - I thought I had just discovered the perfect job when I read your post It's great to hear that you are going to have time to get back to work slowly Cath. I know how awful the work/sleep/work situation is. I used to work 3 days a week after SAH and the 2 days I was off were spent sleeping. It is not a good situation to be in. I had a neuro psychology appt this week and (like Sandi!!) we talked about work. For me this will only be voluntary work & the agreed facts are: it would have to be supported and only a couple of hours once a week. The idea being that it would help me break out of the reclusive life style I am currently living & hopefully be good for my self confidence too. To me this would be a huge achievement but the thought of it is very scary. This evening I met a friend at the supermarket who let me know what several of our other acquaintances are doing. The place where we all worked closed down & everyone was made redundant (this was as I was waiting for medical retirement). They have all managed to get good new jobs. While I am really pleased for them all, I came home & cried. I feel like I am stuck where I am. I know that I will never be capable of that type of work again and it hurts. I can't really see anyone feeling the same joy if I turn up and say 'I found a job too, I'm a cleaner'. Another blip even 4 years later I'll get over it but at the moment I just feel very sad at being left behind. Michelle xx

As you know Sandi, I am very interested in how this goes. I spoke to the neuro psychologist on Tuesday & told her that someone I know was trying this. Her response was very much what your doctor said: 'She explained there is no science to back up the choice to use these meds for brain injury'. I think she also mentioned something about no conclusive studies but my memory is never reliable so I can't quote exactly what I was told. I'm also not sure if it is something I could be prescribed in the UK, for this reason but it would not be her who would prescribe it anyway (I don't think? I think it would have to be my GP?) However, I am following your progress Sandi to help me decide if it's an avenue I could attempt to try. I did google the side effects of long term use of these type of drugs and to be honest I didn't feel comfortable with what I read. Good luck Sandi & please keep us updated. Michelle xx

Hi Julie-Ann, I was nearly 2 years post SAH when I found this site. I'd had no input or medical support either and just felt like a fraud for not being better (as the GP's seemed to expect me to be). I couldn't believe that there were others on here further along the road to recovery who were still not 'better'. This was really shocking to me. Being able to read other people's comments & posts made it ok for me to finally admit I wasn't 'better'. It was a huge relief & a great support to me. Since then, I have had neuro psychology input which has been invaluable. On occasion, the np doctor has contacted my GP to explain that how I am is NOT unusual after a brain injury. I have often felt a lack of understanding from my GP practice - I don't think they are uncaring just massively uninformed about the lasting issues with pain, fatigue & cognitive skills following this type of injury, especially if you look well on the outside. Could you ask for a referral to neuro pysch perhaps? Their main aim is to help you understand what happened to your brain, which areas control which functions & help you to adjust as necessary afterwards. Even 3 years later, this would undoubtedly be helpful to you if you have had no help until now. Good luck! Michelle x

Sami - I am being really thick (it often happens!!) or do you really get 38 weeks off a year? Even I could do that as a full time job so I'm assuming it was a typo? I bet I've missed the point & when you reply I am going to look very, very silly - apologies in advance. Michelle xx