Lin-lin

Thank you for your support.

Thank you, Liz. You are so right about support being the key. If I approached work at a quicker pace and/or I was not in a supportive environment, I would not be able to sustain work long term. Little baby steps seems to be the way forward!

Thank you for your kind words.

Thank you for your encouragement. I understand you are commencing a return to work too and I wish you every success.

Thank you for your support. I am certain that your friend would find the CAB very rewarding. It’s an ideal voluntary placement for ex lawyers! Not only that, I think the life experience of suffering ill health and being unable to work, provides an invaluable insight in advising clients with welfare benefits and debt. Oddly enough, my brain injury allows me to do my job better. I think every lawyer should have one(!)

Thank you, Sandi. I’m still learning about the ‘new me,’ and I don’t always get it right. It remains a work in progress. You are doing very well and I have noticed the good advice that you have offered to newbie’s of late.

Thanks for your encouragement Louise; as always!

Thanks Gary. You are right about not getting too complacent; had a wobble myself on Friday.. I better not iron my Super Hero costume, just yet….. !

Hi everyone, I have taken steps to increase my work hours. Presently, I am engaged in voluntary work at the CAB twice a week, from 10.30 am to 3.30 pm. I have maintained this for seven months, although there have been periods when I have been unable to attend work due to ill health. I have decided to test increasing my working hours and have commenced working a third day (Thursdays,) at the Shaw Trust from 9.30 am – 12.30 pm. The Shaw Trust is a charity, which amongst other things, help people with disabilities/ incapacities/ health conditions return to work. They recognise that certain groups need more support. Any person recovering from ill health is going to feel daunted by their return to work. Often this anxiety is accompanied by the ‘pressure’ which many benefit claimants feel that they are under from the DWP/ JobCentre. The Shaw Trust understand disability/ ill health instinctively, and it is a pleasure to be in an environment where I do not have to ‘insist’ upon my limitations and remind people that incapacities exist. The Shaw Trust are aware that people can have conditions which cannot be seen, but even ‘hidden’ incapacities can impact upon a person’s work capability. Everyone was very gentle with me today and keen that I was not ‘overloaded’ with too much information. This demonstrates to me how a return to work can be made easier if we are supported appropriately. Some work environments and people hold more ignorance than others, and I am keen to avoid them! The Shaw Trust have shown me how some employers can be very understanding and importantly, have a strong commitment to challenging discrimination and unfair working practices. I will let you know how I get on. Lynne

Hi Michelle, Firstly, I'd like to put in my disclaimer! I am not a doctor and therefore cannot recommend whether you have a flu jab or not. I will simply share my experience. I developed a lot of colds during my first 12 months of recovery and they had an emotional affect too. I became very depressed during them and I wondered whether my immune system was low. I had the flu jab during November. Whether because of the jab, or coincidentally, I became very ill after it. (GPs never blame the jab, however! They suggest the virus was in you anyway...) I felt awful for @ two weeks and had to retire to my bed, shivering. I also felt very depressed. I don't blame the depression on the jab per se; rather this was a symptom of me being unable to cope with being ill again.) I'm obviously fine now and have not been ill since, despite having been in the company of people who have had colds. (This may have something to do with me eating healthier and taking vitamins.) Personally, I would have the jab again. One episode is not enough to judge it against. Plus, I had had the flu once a few years ago and I was no where near as bad as that after the jab. I would hate to have the flu after a SAH; I suffer so much with a cold, (or man flu ) I am not sure whether my reply has helped you because I have been rather non committal. No one can really tell you what to do, but I hope you are able to make a decision soon. Lynne

I found your post very empowering and I hope others find strength in it. It is very refreshing to hear someone share how work was not possible for them because their health prevents it. Work is only realistic for me, because my health is going to allow it. It has nothing to do with me possessing any extra determination, it is just that I am fortunate that my recovery has progressed the way it has. To that extent, those of us who are well enough to return to work are the lucky ones. I am very supportive of people who are unable to work because of ill health. I always worry when I hear how some people return from their jobs exhausted and clearly distressed and I wish that society could look after people recovering from ill health a bit better. I am very pleased that you have decided to ‘chose life,’ and that you recognise that the demands of the work place would detract from this. How unfortunate would it be, to survive a sah and then hurl ourselves into an impossible work/life balance. Well done Louise. I hope that some people reading your post gain confidence from it and acknowledge that it is ok not to work if they are unwell. It is the sensible option for some people, but I acknowledge that it can be a difficult decision emotionally, not to mention financially. In supporting our cyber friends who cannot work, I hope the emotional decision is made that much easier. Lynne xx

The 18 months preceding my sah was the most stressful of my life. There did not seem any respite to it and it was a constant preoccupation. Interesting to hear how others have mentioned stress as a factor. Maybe there are some interesting lessons we can learn from this. I'm not saying stress caused my sah, (I simply don't know,) but I never wish to return to that kind of life; and I am confident that I have learnt too much after my sah to do so. Lynne

I do not think it reflects negatively upon anyone if they have been unable to return to work. It is rather an acknowledgement of how our conditions make the workplace challenging. I resigned from my job six months after my sah and commenced voluntary work at the CAB two months after that. Voluntary work prepares a person for the workplace. Athletes don’t turn up for a race without any preparation and it is the same principle for a person who is off work. We need to build up our stamina and get ‘work fit.’ Next week, I commence further voluntary work with the Shaw Trust who are a charity who help people with incapacities/ disabilities return to work. Giving up work and not returning to the same job, is not a weakness on my part. It is just me adapting to new circumstances. I look upon it as nothing more than that. It is different for us who are not returning to the same job. In returning to the same job, an employer must make reasonable adjustments. When searching for a job whilst suffering with a condition, we are competing against healthy people. Employers, by and large, prefer to employ healthy people, so it is all the more difficult. It is for this reason that I am going to request help from the Shaw Trust. They are the ‘experts’ in dealing with sick/ disabled unemployed people. Their entire task is to find work for sick/ disabled people and help alleviate some of the difficulties we face. I agree with Louise, who asked you not to beat yourself up about not returning to work. Some people have returned to work quickly and how fantastic for them, but I do not compare myself with anyone. Similarly with those who cannot return to work. I am pleased they have made the right decision for them and hope they have secured the quality of life they deserve. After doing voluntary work for a while, you will have a better understanding of what you can and cannot do; and it will become clear whether paid work is realistic for you and if so, what type of work and hours. It is a massive achievement that you have commenced voluntary work and what worthwhile projects you have chosen. In the short term, just try to maintain what you are doing, and in a few months, either increase or decrease your hours; see how you feel. Lynne

I often think about what you have achieved in commencing BTG. I truly think it is remarkable. To have the vision to start something like this and the passion to continue with it is very inspiring. BTG saved me from a serious emotional downturn in the Summer and I am so glad I found it. BTG helped put a lot of my problems in context and I began to work things through better. The community you have created is amazing and you can be very proud of it. I for one am indebted to you. My psychologist told me that a brain injury, whilst takes some things away, it also gives. I accept that, like a lot of us, when you commenced your recovery, you were staring at a lot of closed doors. But my goodness, look at the one you opened! Thanks Karen, for all you do. Lynne xx

Hi Anna, Sorry to hear that you are going through a very difficult time. I can only offer you a patient perspective. My brain haemorrhage was @ 14 months ago. I can't imagine how stressful it is for relatives to witness a loved one suffer a brain haemorrhage. I don't have children, but I am an only child, and my parents went through all the anxiety that you are going through now. My parents even had a conversation about whether they wanted me to survive if I was going to be profoundly disabled. I can't imagine what it feels like to have those thoughts and conversations in relation to a family member. Your mother's recovery has began, you just can't see it; but there's a lot happening behind the scenes. Your mother's brain is working very hard at the moment. It has suffered a trauma and it needs a lot of rest. Look upon it like the brain putting out a big 'do no disturb' sign! When I am facing a big situation, I always find it easier to break things down into smaller sections. At this stage, thinking about Uni in September is a long way away, so instead, concentrate what this week will bring you. In terms of a brain haemorrhage recovery, surviving an operation and breathing independently is good progress. The brain is probably congratulating itself at this moment because it has achieved so much. You may find that the brain decides to progress things a little bit further again this week, although, even remaining stable is an example of the brain working hard to make sure things hold. It is so early in your mother's recovery, that even if she spent the week sleeping, it would be normal. In the brain's terms, it has already run a marathon. Imagine telling an athlete at the end of a marathon that you wanted them to run another ten miles. They might scoff at you and say that they need some rest first, but give it a few days and they'll do it. Your mother's brain is doing the same. It's putting it's feet up because it's tired. To reassure you and to show you how things can improve dramatically, I commenced my recovery having to use a wheelchair initially, I was unable to feed myself and neither could I hold long conversations. To look at me now, you would not know that I had suffered a brain injury. The recoveries we make can be remarkable. Just concentrate on the next seven days for now. We often see things with more clarity when the horizon is nearer. Lynne

A warm welcome to the site. I hope you find some comfort here. Things are very recent and raw for you, so it is important that you allow yourself time to heal properly. Don't feel the need to rush your emotions. You are allowed to react to what has happened to your mother. I am very sorry that you have suffered this at such a young age. There are a few members here who have lost loved ones and I trust you will find some comfort from them and that you are able to share experiences. I have found it of enormous comfort to seek the company of those in a similar situation to myself and I have also commenced counselling. Whilst our experiences are different, (I am in recovery from a SAH,) we have both experienced a traumatic event and need to take care of ourselves while we getting better. I have acquaintances who have accessed bereavement counselling and they say it has been a helpful mechanism to steer their emotions. I look at counselling as handing over my 'mixed bag' of problems to a professional; and they put my problems in some kind of order, which makes it easier to work through. It is not a magic wand, but I am able to make sense of why I am feeling a particular way. I am sure you will find the method which works for you and I wish you well in doing so. Lynne xx

How is Dylan today? Is he feeling any better after the weekend? Lynne

That is really fantastic news. It is so important that we have good moments to balance out some of the struggles we've had. It is great to hear that your work is very sympathetic and well done in having a plan to return to work. That is very impressive. Remember that you're still in recovery, so you are entitled to tell bosses/ colleagues if their demands upon you increase. Sometimes people can expect a lot of us, because (as we often hear,) we 'look so well'!!! I am thrilled that things have improved for you and wish you well. Lynne

Hi girls, Isn’t depression horrible? I don’t think it’s possible to have a brain injury and not feel depressed. I had a bleak episode over the summer and I thought I was having a breakdown. It faded. That’s not to say it has disappeared. But I know how to handle the depression now and understand why it happens. Have you noticed that we all get depressed after a brain injury? This means that our depression is normal. So let us all congratulate ourselves for being ‘normal’ at least! Have you noticed that we all get upset about not being able to do the things we used to? This suggests to me, that our reactions are reasonable. Anyone and everyone would get frustrated about this. It is an adjustment we all battle with and find very difficult. Another cause for depression, in addition to reacting to changed circumstances, is chemicals in the brain being disrupted through a brain injury. The brain controls our emotions, but our brains are bruised. We would accept that a broken leg is weaker, but we often struggle to understand why a broken brain is weaker, and we don't always grasp why we can’t cope with the same pressure as before. And with this ‘weaker’ brain, we are dealing with life changes, loss, stress and money worries. A healthy brain would struggle to process this, but our brains are sick and are struggling that little bit more. Isn’t it ironic how we are dealing with the most traumatic experiences of our lives and the very thing we need to cope, (the brain,) is injured. Typical! I have joined group therapy with a psychologist. I have made new friends and they understand what I am going through. Yes, I get upset from time to time, but I know why and I don’t think it’s wrong for me to feel frustrated. If I feel down, I don’t try to fight it. I allow myself to wallow and lick my wounds. I eventually become motivated to introduce some changes to my life; and for this reason, my depression is vital for me to move forward and accept things. Lynne xx

Hi, I am so sorry to learn of your news. It seems very unfair for your household to be touched by something like this again. I found this website. It's basically a BTG for kids! http://www.cbituk.org/information-children-young-people I noticed it has some books aimed for children with brain injuries. There is one series about a little bear who has a shunt fitted. I realise that the age group for this book is lower than your son's age, but I am sure the message within it will strike a chord. Would you be willing to read the following message to your son?- Hey Wee Boy! I hear you have been through a tough time. I am sorry that you have been poorly, but I think you are very brave. It is healthy and normal to be upset after a big operation. It is normal to be feeling very tired. I know resting can be boring, but it is very important that you do this, so you are able to feel better. I have attached a link to a website. It is a bit like Behind The Gray, but for children. Maybe you will make new friends you have been through the same as you. You can ask them questions about their operations. When you feel better, you may be able to help other children who have had a shunt fitted. You can tell them how you felt after your operation and how, after time, you started to feel better. Being a special person takes a lot of courage. It is ok to feel upset about things. All special people feel upset from time to time. I am sending you lots of good luck and I look forward to hearing regular updates from your Mummy so that we all know how you are doing. Take care and rest lots in the next few weeks. (Get Mummy to buy you some new DVD's as a treat!) Lynne

This strikes a chord with me. My blood pressure is presently high. Maybe it's symptomatic of that. Thanks for contributing to the thread. Lynne

I am glad this has been raised. Around two weeks ago, I heard the 'seashell' noise that Louise speaks of. It occurred on two separate occasions and I even looked around in search of the noise, but concluded it was internal. The difficult thing after SAH, is that we can react to any sensation and it is difficult for us to know what to react to and what to ignore. I still don't know how to approach this with a proper balance. I have noticed a numbness/ weakness in my right arm today and as I write this can sense a difference in the fingertips in my right hand.. I feel that after SAH we are in a heightened state of anxiety and it is very confusing. Lynne

Hello Stubborn Miss! I love your analogy about your brain moving out if you push it too hard! I can relate to this. I am sure there were occasions in my early recovery when my brain wanted to divorce me! Think of how a toddler needs to nap in the day. It is because their brains are learning continuously. Every sight, smell, sound is being processed, and as a consequence they get tired quicker and need to have naps. If they are denied their naps, they become irritable and cranky. If you are presently finding certain work tasks difficult, it is because the brain is pulling the reigns on you and forcing you to relax your demands on it. With regard to your day in work, your brain is dealing with your commute to work, chats to colleagues, processing all the office interactions; and you ask it to work on your budget too!! Your brain probably thought, ‘Well, she can forget this!’ and decided to ‘cut out’ on you!! When I get into a muddle, it’s just my brain asking for a rest. If a toddler asked us for a nap, we would not deny him/her a rest and reply, ‘you’ve got to keep going!’ We would accept that they are tired and wrap them up in a blanket! Our brain needs the same looking after immediately post SAH. Life won’t always be the way things are now. It will improve. The extreme tiredness is temporary, but you are at a stage where it is almost unbearable. We usually push ourselves too hard post SAH and we are all guilty of it. But, as far as I know, SAH recovery is not an Olympic event. There is no medal for the fastest SAH recovery and there are no world records! Maybe you are judging yourself too hard(??) From what I can tell, you don’t seem to be receiving pressure from work colleagues or family. The pressure is coming from you. It is your entitlement to live your life as you see fit. I am simply pointing out that your present fatigue is normal and explaining why you are tired. You may continue at your current pace if you wish. But if you want a rest, then that would be OK too. Just a thought, if you find the idea of reducing work too difficult; could you simply take a week or so off work? (We call it taking a holiday here; do you say vacation?) This may allow you to judge things with more clarity. Maybe a little week off work would be a nice rest, to reward you for your amazing effort in returning. Lynne xx

Fab! Fab! Fab! I am so pleased for you. Nice to see that common sense has prevailed. Excellent result. You are not a fraud at all and to be honest, very few people are within the welfare system. The media and politicians have done a lot to damage the principle of sickness benefits and it breaks my heart to hear people believe they are doing something wrong when they are legitimately claiming what they are entitled to. Remember this statistic the next time you hear people talk about 'spongers.' Welfare fraud is very low, at a measly 1% 9 billion is unclaimed in benefits every year through people not knowing they can claim a particular benefit or because they are too scared to be labelled a cheat. When I hear people talking about 'benefit cheats,' I always broaden the argument and point out that if we are going to be talking about all misrepresentations at the expense of the public purse; then this country loses more money in tax avoidance (£25 billion) and tax evasion, (£160 billion.) Sickness benefits is a very important provision for this country. It is an insurance policy for us all. You have been through a lot and it is entirely appropriate that the country looks after you whilst you are healing. I am very happy for you, Lynne xx

Hi Sandi, I hope today has found you well. I have noticed some progress in your posts and attitude and I wanted to say well done! You explain that you are finding it difficult reconciling the balance between what you want to do and what you can do. This demonstrates to me, that you have identified what the problem is; and in knowing what the problem is, you can work it through. You have assessed that your present limitations don't allow you to do the things you used to do. There is a way around this! In approaching tasks differently, you can still achieve things; but it may take more organising, more time and you may need to take more breaks than before. You are tired for a very important reason. It's your brain's way of communicating with you and asking for rest. (This is why pregnant women feel really tired initially. It's nature's way of getting you to slow down.) Let's think of a way to make this recovery a bit easier. You say you have good benefits at work. Does this allow you to take more time off work, without severe financial pressure? If the answer is yes, you will be amazed how well you start to feel. Your brain can't shout at you and ask you to slow down, but it can impose a tremendous fatigue and make you listen. It can also play havoc with your emotions when over tired and the brain will not be ignored! It will get you to listen somehow. Rest includes 'mental rest.' Your brain needs to put its feet up as much as you. In making it confront the stress of a workplace and commuting at this stage, maybe your brain is feeling the pressure. Returning to work is something which you could address when your health has improved. You may find that a phased return later on, will have a positive effect in getting you back to strong emotional health. If it's permission you need... then here it goes, 'Sandi, you are allowed to have a rest!' I know you want your old life back immediately, but let's approach this in a gentle way. Have a good, proper rest for another few weeks/months; and start thinking about re-building things when you are a bit stronger. Lynne xx