goldfish.girl

You have so much going on. You are dealing with headaches, anxiety over leaking in bed, bringing up 3 kids and working an incredibly demanding full time job. You might not feel like you're the strong one just now but take a step back - look at how much you are doing after a brain injury!! It takes enormous strength & determination to be where you are today. Michelle x

Thank you all for the support and the advice - there are some brilliant tips, thank you. Things came to a head yesterday when Dylan got so lost & confused in the building that he ended up with a major headache and had to spend the rest of the day in the 'extra support room'. He was still very unwell when he got home so I had no choice but to take action. I contacted his peadiatric neuro psychologist, his social worker, the school nurse & much to my surprise each one of them has jumped on board to get this sorted. I had been promised lots of things would be in place when Dylan started school but for some unexplained reason this hadn't happened. I have handed in a letter today demanding (politely) to know who took the decision to withdraw this support without taking advice from the medical people working with him I am really very tired after all this & am going to re-read all your comments tomorrow. Sami/Mary? one of you mentioned maps & time tables with classes and teachers names on. Dylan had this but it hadn't helped so he is now being given a coloured route map showing him how to get from one class to the next. He will no longer be doing a full day of classes but now has 'chill out' time scheduled into his day. This had to happen but I do feel a little sad that this feels like a step backwards. Thinking positively, it may not have to continue forever. Interestingly, I discovered through this that when I am fighting for my sons' rights I don't forget the words, or get muddled on the phone (usually I find phone calls quite hard) I say things firmly & sensibly. It made me think of people who stutter but don't when they sing. It was a nice discovery but one I hope I won't need to test out again any time soon!! Thank you everyone, especially those of you who work as teachers/in school for the insider tips (it's hard for me to remember what being in a school was like, it was so long ago). Michelle xx

How things turn on a penny... Much as I stand by my post above, things changed about an hour later but the positive side is still relevant. Just in need of a bit of tweaking Michelle xx

Hi all, I'm hoping that other carers can make a suggestion which will help please? As a quick background, I had a SAH 4 years ago. My son had a brain injury & op 19 months ago. Not an SAH but from personal experience, I can see that the effects of his brain injury are no different to my own. He started High school last week. I knew after 2 days that he was struggling. I can only compare it to how it would be for me to be dropped at an unfamiliar shopping centre with a list of 6 different shops to find, each one by a certain time & expect me to learn the name of every other customer in that shop. One day of this would leave me floored for a couple of days. It is not something I can do, even 4 years later. His dad said tonight when I told him this analogy that 'he isn't as bad as you are'. I totally disagree, the similarities are there for all to see (or maybe I think I'm better than I am, who knows, I just now that I can see my sons struggle & it looks no different through my eyes) Then I'd have to go back & do it all again every day for a week - with different shops & different customers. As a result my son has cried for the last 2 hours, my heart has broken. He does NOT want me to ask for extra support as this will single him out more when he is already trying to deal with new pupils he doesn't know coming up and asking if he has a 'tube' in his head - cue many jokes that he does not have the maturity yet to deflect or laugh at. I can use this analogy to try to explain (I know that fellow brain injured people will completely get what I am saying) but how do I make his guidance teacher understand this when they have no personal knowledge of brain injury??? I can give them print outs which explain how hard it is to learn new things whilst dealing with the fatigue this causes which makes learning & remembering even harder. If anyone has tips or methods they have used to make other people understand the enormity of what the person they care for is going through, I would be really grateful to hear them. Thank you. Michelle x

Hi Jess, I love the positivity in your post. Every cloud has a silver lining - yours is your two boys. I've even found a silver lining in having in an SAH (much as we would all wish we never had) it has given me the insight I need to help my son after his own brain op. I can hand information to his school - that's easy - but being able to explain all his issues with a personal insight is invaluable. There are always positives it just sometimes takes a long time to find them. Michelle xx

Hi Neil, It is really shocking to me that you have a bleeding anni that the neuro surgeon is not interested in until 2013 - how can this even be possible???? You are entitled to ask for another doctor & a second opinion. Personally, that's what I would be demanding in your shoes and as a matter of urgency. I have never heard anything like this and am totally gobsmacked. Good luck, Michelle

Hi Cath, I've been through this dilema too. It is not an easy decision. You know that your boss is right but you also know what finances you need to live on. Have you applied for Disability Living Allowance? It's best to get help filling in this form but if you are awarded some payment this might help while you have to reduce your hours. Citizen advice or the illness/disability advisor at your job centre should be able to let you know what else you could claim. You may well get back to full time hours but I don't think you will achieve that by pushing yourself at the moment while you are struggling. Your health has to come first. Giving in a little is not the same as giving up! Maybe if you cut the hours and eventually build them back up later, it will work out much easier for you than it seems to be at the moment? Good luck Michelle xx

Hi Carl, I hope the irony of them having to ask for your help to do this has put a satisfied smile all over your face Good luck with reaching your target of 300. It will be interesting to hear how you get on. Michelle x

Hi Carl, I like that quote. For me, the realisation & acceptance happened last Nov,after attending a large lunch event where I used to work. This was over 3 years after my SAH. I know who I am now & I can move forward because of it. I took me a very long time to get there - I had been constantly trying to be the person I was before. Now I know that person is gone - this is the new me (pretty boring compared to the old version ) Life gets much easier when you finally get to know who the new you is & start working with that person instead of trying to fight them off. You are an intelligent man and hopefully because of this you will find your peace a lot quicker than I did. Michelle x

Hi David, Good to hear that your GP is aware of the 3 main causes of SAH - high blood pressure!!!!, smoking & excessive alcohol. So your SAH is 'in the past'....... Well done on ringing back the secretary and asking for someone senior. This is what I always do now as life is just too short to get angry & do battle with the uninformed. Another favourite of mine is to point out that without people like myself needing help THEY would not actually have a job.......just a thought, works at the Job Centre too in case anyone feels the need to use it there Hope the appointment goes well, keep smiling Michelle x

Hi Jus, My initial thought reading your first post is that your work mate was trying to be funny & maybe thought it would make you laugh? Along with not fully appreciating what you are going through. For some people, the only way they can deal with something as serious & shocking as a brain heamorhage is to try to be jokey rather than give in to the negative thoughts something this serious provokes in themselves. I would give them the benefit of the doubt as they probably really do not understand what you are going through or realise how upset & angry their comments made you - I'd like to believe that no-one would deliberately do that to someone who has been so ill. Time will tell..... Over the 4 years since my SAH I've found that the people close to me, who care about me don't need me to explain. They have watched how I've recovered, they can see my limitations for themselves and there is no longer any need to keep discussing it. They gradually understood that some things didn't get better & they've had to adjust as I have done. There can be insensitive remarks from people I am not so close to but they don't really bother me now. I did get a stupid comment from a relative recently about my medical retirement settlement and how they wished they were given a sum of money too. My reply? 'You could have a brain heamorhage too but I wouldn't really recommend it'! It made me laugh, instead of being angry at their insensitivity & left them feeling slightly shame faced. Works for me I had a comment from a workmate just after I returned to work 'so, what's this I hear about your head exploding', everyone else was shocked but I burst out laughing - it worked better for me to have someone come right out & say it rather than pussy footing around me. Try not to take things to heart, I know that's easy to say a bit further along this recovery road but you & all the people around you need time to adjust & time to see how your recovery will go. However, if you can explain to people or show them information on how brain injury affects people & they continue to say upsetting things the only way to protect yourself is to shut off emotionally from those people and stick with the ones who genuinely care, accept you as you are & encourage you to recover as fully as you able to. Michelle xx

Hi Jill, Nice to 'meet' you here. Your poly tunnels & small holding just sounds so lovely to me - my dream lifestyle!! Although I think I would find the amount of work involved a little bit too much for me now. It sounds like you have achieved such a lot in the short time since your SAH. I hope reading other posts on here is helping you to see that how you feel now is pretty common after SAH. Michelle x

Hi Shellie, You are not an emotional basket case. You have just gone through & survived a SAH! It is traumatic for you and your family & it can take time to come to terms with everything that has happened even in the early days when a lot of us aren't always aware of what on earth just happened. I know in the UK the 'standard' time off for recovery is 3 months, so it is quite quick for you to be going back to work. If you are having a hard time emotionally could you ask for more time off before you return to your job? For some people it can take a lot longer than this but others go back to work & do really well. As it's been just over a month for you I'm pretty sure everyone on here will agree that, yes, things WILL get better. It just takes a bit of time. Michelle

I had never heard of this either. It's a little bit scary. I don't like having a back tilting wash either and always stagger & trip over things after it but bending forwards (like when gardening has the same effect ). Found your link really interesting Karen along with all the other comments - thank you. Michelle xx

Hi David, I can't recall burning at all, my pains are always like being stabbed in the head rather than burning sensation. Without wanting to cause you further worry, I believe you already know yourself that a BP reading that high needs to be discussed with a doctor. Personally, I would take it as a warning sign that something needs attention or that you are doing way more than your body is able to cope with. When I was pregnant (7 years before SAH) my BP kept spiking to that level and I was sent to hospital each time it did, there is obviously a reason why this reading should be worrying as I had a midwife visit me at home EVERY day to check it. I'm sorry I can't say anything upbeat but I think it would be silly for me to say I'm sure you'll be fine. Look after yourself and definitely speak to a doctor. Michelle xx

Hi Jus, My sister is a nurse at BRI - I'm going to ask her if there was rumour going round the hospital about a hairy woman who they thought was a man Welcome to BTG. It helps so much to find out that others have the same/similar worries to your own & it's good to hear you are taking comfort from it. Your story about your legs reminded me that for a very long time after SAH I kept a toiletry bag (with some make up in it ) ready to go & told my family exactly where it was. I also had a major clear out of my clothes - this was all because my ex husband trying to help took me pyjamas which weren't actually a matching top & bottom & my filthy, ripped gardening trousers to the hospital for me! He didn't bring me any underwear at all & when I asked for a lip gloss, he took an eye liner Obviously, these things were necessary to me AFTER I left HDU. The memory still makes me giggle - I was so horrified when the nurses were going through my bag to find me clothes so I could get up, dressed & walk about!! They must've thought I was really scruffy by nature.....cringe..... No matter how embarrassing your memories of your hospital stay are, the neuro nurses & doctors will always have seen something worse. The need to always be prepared in case you end up back in hospital will fade over time along with the fear of it happening again. Good luck with your continued recovery & it's nice to 'meet' you here. Michelle x

Hi Bev, I was also sent to an eye clinic a few weeks after SAH. I can't really remember why, so it's possible that it's routine? One of my annis (the one that bled) was just behind my left eye so that may be why I was sent. I also lose bits of my vision when my headaches are really bad so it's possible that's why the referral came about. Sorry, wish I could remember more clearly. Perhaps your GP will know why you have been referred there. Good luck Michelle x

Hi Jean, I'm not sure if my post will be helpful as the option may not be available to you or not something you would want to do. I spent a week in an epilepsy assessment clinic in March this year. It's Quarriers Epilepsy Assessment Centre in Bridge of Weir (near Glasgow) if you want to google it for more information on this type of facility. Most of the other patients were in there to be monitored as they withdrew from one medication and started a new one. I was there for testing to confirm or refute my epilepsy diagnosis. I feel very lucky that the tests showed I do not have epilepsy. The rooms all have CCTV and the beds had seizure alarms which, as far as I understand, are set off to alert staff when a patient has a seizure. If your anxiety is a major problem (understandably so) maybe this type of clinic could be an option for you if there is one near by? It wasn't an NHS clinic although my stay there was paid for by the NHS. As I said I really don't know if this info is helpful to you but it may be an option you could explore if it is of any interest to you? Secondly, I am horrified reading about the side effects of these drugs & the difficulty of withdrawing from them. I was advised, several times, to take medication as I had 'suspected epilepsy'. I am very head strong & do not like taking medication (although I do now have to take a few other ones since SAH) so I stood my ground and refused to take them unless epilepsy was 100% confirmed. I wasn't popular with the doctors but I am very glad I didn't start on these medications - more so after reading this thread! Good luck, I hope all goes well for you. Michelle x

Hi Paula I don't have any numbness but I do remember all my limbs were incredibly weak for a long time after the SAH. They still are not as strong as they were but they are fully functioning. I think the fatigue in the early stages may have a lot to do with this - so hopefully you will have improvements with it. Have you spoken to your surgeon or GP about this? Maybe they can help? The only time I've had numbness since was after a holiday with my children earlier this year. It was quite full on with a lot of travelling & not my usual rests while we were away. I was so tired after it that texting & typing were a huge challenge for 2-3 days. Even my face & lips went numb which was quite scary but it did all settle down over a week of rest or doesn't seem to have been anything serious in my case. It's so hard on all your family members when SAH happens (as well as yourself) and perhaps it would help your husband to understand if he has a look on this site too? I think all of leave hospital after the event with very little support & information and perhaps talking to your GP or if there is a nurse specialist at the hospital where you were treated about how you feel & how your family is coping will point you all in the direction of some help. I know some members have found Headway' really helpful, is there one near you? Please remember that at 13 weeks you are still very early in your recovery and things will keep getting better for as time goes on. Michelle xx

Hi Olef, I didn't notice any new symptoms from the 2nd op. As far as I remember I was off work for 2 weeks after it. I was very, very tired but I had already been tired as the SAH was only 11 weeks before the 2nd op. The main difference after it was the enormous feeling of relief that all the anni's had been dealt with. Please feel free to ask me anything else you need to. I also found it helpful in the run up to the operation to not dwell on the surgery itself but to imagine the relief of waking up and knowing it was all over - hope that helps you. Michelle x

Enjoy your day Kris and celebrate all the achievements you have made against the odds Michelle x

Congratulations! Enjoy that fishing Michelle

Ron, I am loving reading your happy posts. You must feel like you've finally got your life back. Great news Michelle

Hi Olef As Sarah has said, I went back for a second three months after the SAH, although mine was to coil a 3rd anuerysm (not for a re-coiling of the original two) that they hadn't been able to coil during the emergency op. I was told of the risks involved and asked the surgeon who was going to perform the op what choice he would make in my shoes. He was very definite that he would have the operation. Everything went well & waking up from the elective surgery was nothing like coming round from the op after the bleed. I felt like a fraud being in the High Dependency Ward after it as I felt so well! I asked to go home the following morning (they wanted me to stay in for 48 hours) and it was agreed that I was well enough to go home. It is an incredibly scary situation to be in and I was terrified but I will never forget the feeling of relief after the operation was over. Good luck! Michelle x

Brilliant to read all the positive posts on here today! Carl, David, Cath good luck to you all! Carl with keeping positive as the countdown continues. David & Cath with the increased hours. (Sorry Sarah Lou, I can't remember if you said you are increasing too?? If so good luck!!) Sarah K, great to hear you feel like you have finally shrugged off the dreaded fatigue, that must be a FANTASTIC feeling Dawn - I am really delighted to hear how well your meeting went - congratulations & good luck on the 22nd (?) August. Sandi you have the experience of hindsight now to help you recognise when the time is right for you. Mary - I really believe that your new hours will help once you have adjusted to them and got a routine going again. Brilliant to hear how well everyone is getting on work-wise Michelle xx