Lin-lin

Hey Bill, I can see some positives in what you write, even if you perhaps don’t identify with them, at least yet. It is good that there are no environmental factors which are causing you concern. When we feel emotionally drained; it is usually difficult to deal with problems at work, stresses with relationships and family politics. How fortunate that the environment around you is operating well, which means you can invest all your energies in your emotions. I think it is a good thing that you have recorded your feelings here, particularly if this disclosure is not something you would done before. For my part, battling depression without sharing my thoughts with others would make the recovery all the more difficult. It is a matter for you whether you disclose your depression to your family. We are all different. My strategy is a ‘no holds barred’ approach with my boyfriend first and foremost, and my parents and boyfriend’s parents help me too. I find this ‘protective circle’ a big source of comfort. I was never depressed before my SAH, so I do consider my experiences post SAH to have caused it. A SAH is a brain injury after all, so we are bound to be feeling the after shocks, even if we had no psychological vulnerability before. If there can be advantages to the timing of this, I suppose it is fortunate that you can make good use of the summer holidays. It will be a good thing to not have to deal with work pressures for the time being. Like you, I also crave my life before my SAH. I used to list one of my hobbies pre SAH as ‘laughing until my face hurts.’ I have not done this since my SAH and I miss it. I cannot listen to music, visit certain friends and visit my nearest town all because of the happy memories which are churned up. I can get quite bitter about this, particularly when I hear of family/ friends/ boyfriend, enjoying nights out and weekends away. I feel that I am observing others living and to be honest, it is no fun. In two weeks time, I will be attending Headway and speaking to a neuro psychologist. I think my problems are deeper than depression. I genuinely believe that I have some problem with my emotions. I don’t think I am depressed at present, but I just can’t seem to tune into any joy at all. I have lovely, supportive people around me and when in their company, I can see their happiness. They make me laugh, I can even make them laugh; and ostensibly, I interact ‘fine.’ But I cannot experience, nor seem to identify with happiness as an emotion. It is not that I am sad, but I am not happy either. For this reason, I will not be discussing matters with my GP… I think this is one for the psychologist! Do you have an opportunity to speak to one? Can you contact your local Headway for example? I will let you know how my chat with the psychologist goes. Maybe there are parallels with what you’re experiencing. I hope this week will be kind to you. Lynne

Well done for highlighting this. It is a very important message. Lynne

Hi, Whereabouts in South Wales are you? I live in Skewen, near Neath. Welcome to BTG! I haven’t heard of Arnold Chiari Malformation before, but I googled it and so know a little bit more about it now. I am sorry to learn that you have been through the mill. Unlike you and unlike some other members here, I have had no difficult decisions to make regarding my health. I was simply told when I regained consciousness at Heath Hospital that I had suffered a brain haemorrhage and that I had undergone a coiling operation. Speaking personally, I am glad that it happened like this and so I am always touched by stories where people have had to make decisions about whether to undergo procedures or not. I am pleased to learn that you have reached a decision and that you have a clear understanding of how you are going to progress. I would imagine that the task of weighing up the pros and cons is an exhausting one and I hope you have gained some inner peace in arriving at a decision. You highlight the advantages in addressing the issue now rather than later, i.e your age and good health. What you say makes sense. I am sorry that I cannot offer you specific advice because our circumstances are not identical, but I thought I would send my best wishes anyway. Chat soon, Lynne

SAH should come with a Brain Injury Manual. Garages provide us with a manual when we buy a new car, but when we acquire our new brains after the SAH, we leave hospital without a clue about how the thing works. At the beginning, I used to apologise for my behaviour. I apologised to people when I was tired. I apologised for not being able to attend an event. I was ashamed that I could not return to my former job. I felt guilty when I could not meet friends. I have since stopped apologising. I have a brain which works a bit differently to the old one; that is all. My brain still works, but it has new settings. When my boyfriend and parents started to understand the medical side of a brain injury, I had less to explain. They are learning with me. In terms of explaining it to other people, it rather depends who the person is. If I feel that the person will not grasp the situation, I just say I am feeling better but hope to make further improvements. To others whom I feel may understand, I say I am working through a few things at the moment. I explain that the SAH has left a permanent brain injury and I am adjusting to a different life. I say that the adjustment is difficult but I work very hard to improve and I can sometimes feel positive about the changes. A few people in this thread have commented that they are ‘going through the motions.’ I know what you mean. I do not get excited about things like I used to. I observe others enjoying themselves, but I cannot seem to connect with them. I initially though it was depression. But I do not feel depressed at present, but I still seem to lack that sparkle and fizz. I learnt at Headway that this is common amongst people with a brain injury. Emotion is the result of neural messages being passed between emotional centres in the brain. When the pathways have been disrupted, emotions are not registered in the same way. Emotions can be less intense but we can feel other emotions more so, hence the crying at a drop of a hat. I find that I cannot get excited about nights out or social gatherings like I did before. I tend to ‘show my face’ to be polite, but leave early. If the event is going from bar to bar in town; I simply do not go at all. My boyfriend and I compromise. I encourage him to go to some events without me; and because he knows the reason why I don’t wish to accompany him, I receive no pressure. He does not say I should push myself to be more sociable because he understands the medical reason behind my decision. He is aware that people with brain injuries cannot filter out distractions. Hence very busy environments are tiring and can make me feel a bit nervy. The brain is processing ‘too much information.’ So in a nutshell how do we explain to those around us how we feel? Well, we don’t have to. Direct them to books and online articles on brain injuries and let the medics and academics who wrote the articles do the groundwork for you. Explain that you are learning about the new you and you would like the support of a few people along the way.

For anyone who has suffered ill health and is unable to return to what they were doing previously; it can be very scary to start something new. There is a lot to take on board – a new environment, new people and procedures. Also, it is common to suffer a lack of confidence after ill health. If you prefer to start on a voluntary basis, this may help take some pressure off and may help with confidence. As a volunteer, you are very much in the driving seat. There is no contract of employment and you can put your health first. If you are ill one day, you simply do not go in to work or if you feel unwell whilst in work, you can go home early. When you start, (be it as a volunteer or under permitted work,) it is very important that your employers know exactly what your parameters are. When I started at the Shaw Trust, I had an appointment with the head of department. I explained that I was very anxious about starting something new. I said that I preferred a routine and did not cope well with unexpected events. I would need to be office based and would prefer a slightly later start because I have battled with insomnia for 18 months, (feel my pain!!!) I explained I would need to undertake one task at a time and would find multi tasking a problem. Following from this, the Shaw Trust have followed my suggestions to the letter. As a consequence, I am functioning well there. Being upfront and honest at the start, is a good way in protecting yourself from people inadvertently expecting too much from you at a later stage. In the employment market, there is only one person who will put your health first and that person is you!!! It is therefore important that we look after ourselves. ‘Looking well’ can be very misleading for people when they assess our capabilities. It is therefore very important that we explain our circumstances very clearly at the beginning. If the environmental factors around us are correct, we perform at our best. You may find that as time goes on, you will need less ‘sheltering’, but starting off with baby steps will help you make long strides later. Write a little list of things which would make working at your new place comfortable and consider what would cause stress. Discuss this with your prospective employer. If they quibble with your suggestions, (which I don’t think they will at all,) this is an indication that working there may not be conducive. You can then focus on work places where reasonable adjustments will be made without fuss. Just remember to run everything past the Job Centre and DWP. Good luck and well done for doing your utmost to progress. L xx

Hello! I really enjoyed reading your post and I hope I can learn from you. The elements which I am interested in, is your re-entry into employment, in particular your change in career. My SAH was 18 months ago and I officially resigned from my Solicitor's job around six months thereafter. Following from this, I seem to have a total rejection of all corporate environments and can no longer see myself in a similar job where the motivation of the firm is money, money, money. I am now only motivated by people’s needs, in particular the needs of the disabled community. I now do voluntary work at the Citizens Advice Bureau and the Shaw Trust, (which helps disabled people overcome barriers to employment,) and I am totally inspired by the people I meet. I hope I am lucky enough to secure formal employment in this sector, but I will be looking for part time work first. I will be commencing a sign language course soon. I think it is fabulous that you work with impaired children. I believe that suffering adversity, (like we have through our SAH and depression,) provides a different insight into life and really forces you think about what is important and what is not. Post SAH, I have developed a greater empathy with people whose lives have not presented an easy course. I am really looking forward to reading your story. I was really drawn to your comment that you feel privileged to be given a second chance to do something worthwhile. I can relate to this and feel the same. Hope to chat soon, Lynne

Hi Tracey, Glad you found us. It’s a horrible thing when we leave hospital with no information. It took me 12 months to get a proper handle on things which is when I commenced counselling sessions with a neuro psychologist. Have you considered counselling? My psychologist started talking to me about brain injury. I explained that I did not have one. I had physically recovered very well and there were no outward signs that I had suffered a SAH 12 months earlier. He told me that ABI, (an acquired brain injury,) is an injury caused to the brain in childhood or adulthood. There are many possible causes, including a fall, a road accident, tumour and brain haemorrhage. ABI can affect the way the brain works and does not have to leave a physical disability. To understand a brain injury, imagine a very busy city with lots and lots of traffic. Imagine there is a road block. The traffic has to work out a different route to get to its destination and the cars might try other roads and side streets. Neuro patterns in the brain are similar. When there is an injury, different paths are sought, but it takes time for different routes to become established; and even then, they may not be quite the same as before. This is where we sense that things are ‘a bit different.’ A SAH can affect the cognitive effects of the brain. This is the way we think, learn and remember. Maybe this is why you are struggling with your memory. I struggle with names too. It is so frustrating! A SAH can also affect our emotions and behaviours. I am definitely different to before. Not massively perhaps, but enough for it to seem life changing to me. I am quieter and need more time on my own. I can find people quite irritating sometimes! If we do not know what out problems are, we cannot work them through. When I spoke with a neuro psychologist and he explained why I felt different, things made sense and I started working with my brain injury, not fighting against it. I will look forward to chatting with you again, Lynne

Hello! Not only does your friend have a great family, but she seems to have a great friend in you too. How lovely that you have continued your friendship. A lot of us here have seen people we were friendly with disappear. Something like this really does expose the true nature of people. Six months is still very early in terms of recovery. The normal benchmark is around two years, but even then, people see improvements five years and beyond. I would imagine the night spent at your smallholding did wonders for your friend. Moments like that will help her wellbeing massively; and I believe we recover better if the environmental factors around us are conducive. In terms of offering you advice in how to support your friend, I do not think you need much guidance! You seem to be doing brilliantly! To help you understand the medical side of things, try reading about ABI; that is an 'acquired brain injury.' A haemorrhage, amongst other things, can cause ABI and it may help you to understand what is happening to your friend's brain. There is a charity called Headway which helps people with brain injuries. Families and friends can seek support here too.This is their website: - http://www.headway.org.uk/home.aspx Chat soon, Lynne

Hi Melissa, I echo Karen's comments; gosh, 26 years old is very young. I am very sorry to learn that you have been through the mill. I don't have a shunt either, but came very close to having one fitted. I am unsure what the future holds for me in that respect as I have 'dilated ventricles,' which is damage caused by the hydrocephalus after my SAH. There are people here who have shunts and I am sure that you will receive a lot of support from them. It is very helpful to be part of a community where you can share experiences with others and it has helped me enormously. I look forward to chatting with you again and receiving updates of your progress. Lynne xx

Excellent news! Really pleased for you. L xx

That sounds like a very sensible plan. Good on you. I hope it works out very well. Great to hear that you are feeling so good. L xx

Haha!!! (I love a play on words!) Welcome to BTG. You will find a lot of support here. Look forward to chatting soon. Lynne

I'm sorry to hear you're struggling. In complete fairness to you, you are coping with a lot of challenging circumstances and working them through is bound to be very scary. When I feel that life is getting too much, I try to surround myself with like minded people. BTG is great for online, but it is possible to find the same support in person too and in our communities. I wonder whether you have a Headway group nearby? Google them to find out. I have made a very good friend there who had a stroke nearly a year ago. He is unable to use his left arm at present, but is receiving physio. I am sure you would receive a lot of comfort in meeting people in a similar situation who you can share your experiences with. Lxx

I think they should change the headline to, 'Reading The Daily Mail is most likely to give you an aneurysm.’ All hospitals should remove the Daily Mail from their neuro wards until consultants are certain our operations have been successful… ..just in case(!)

I work alongside people with disabilities at the Shaw Trust and some of them are very sporty. I was talking to a colleague today who was rushing off after work to a darts tournament. I understand that he like playing golf too. My work colleague has physical disabilities incidentally. Does Richard enjoy watching sport? Would going to a local football / rugby game be a nice thing for him to do? My Headway branch organise trips to sporting events and they are very popular. Your local council / social services department should have details about facilities and sport clubs in your area. Many local councils work in partnership with local sports organisations so they will be able to signpost you to the relevant people. Playing sports, especially in a team, can give people a sense of belonging to a group, which can be a very positive thing for our well being. L xx

Hey gorgeous! (Love the new avatar!) I was in a really bad place last year. I had never really experienced depression before. The experience taught me how it is not possible to simply possess a positive attitude to get you through it. It is an enveloping, oppressive feeling. In complete fairness to us, the environmental factors around us post SAH are stressful. Not only are our brains injured, (the very thing we use to process our emotions,) but we are dealing with a life changing event which has resulted in losing a job, friends and life as we knew it. To feel depressed about this, I think, is a normal reaction; so do not berate yourself for feeling down. Try not to feel guilty for feeling depressed because you perceive others may have worse circumstances. The thing is, stress is relative and we react to what is happening to us. So although other people are going through what we may consider ‘worse’, we cannot feel what they are going through; we can only feel what is happening to us. Not once in your post did I think you were ‘whining’ as you described it. You were just articulating your feelings and it is better that you do this rather than bottle it in. Expressing your feelings is a good thing. I am pleased that you have episodes when you feel good and I am so glad that your depression is dispersed with these lighter moments. Advising others is always an easier process than advising ourselves, so that is why you cannot apply the help you give to others to yourself. We always see other people’s problems with more clarity because we are objective and cannot ‘feel’ what they are going through. With ourselves, we are subjective and we have our gut feelings to contend with as well, so things become more confusing for us. I am sorry that your depression has plighted you for years. If this is the case, maybe it is the stress of the SAH which has turned your depression from one you could function with, to a feeling that you are now overwhelmed. You have an excellent grasp of the methods which should help with the depression, i.e. the medical care, counselling and support groups. Did you find that these helped you before? It is a horrible feature of depression that a person lacks motivation. It can be an enormous struggle to do things which another person may consider straightforward. And so I do understand how seeking support/ counselling can be overwhelming for a person with depression. In situations like this, I find it easier to turn and ask others for help. I used to be a very independent person and it took a long time for me to realise that I could do this. Is it possible that a family member or friend could make the initial effort to sort out some group sessions/ counselling for you? Maybe they could even accompany you; just as a method of bridging the gap between where you are now, to a place where you could receive help. I also find that being in the company of positive people is helpful. If counselling helped you in the past, maybe it could help you again, but maybe on this occasion, someone needs to make the arrangements and accompany you. I am unsure if you can get counselling for free in the US, so if there are costs, could family members help? Instead of asking one person, maybe a few could contribute and share the costs between them? The thing that keeps me going is counselling, meeting people at my charity; and voluntary work, which has given me a sense of purpose. If I am suggesting something in this post which is not possible for you, let me know and I will reconsider what else can be done. L xx

It's difficult to know what to do for the best regarding exercise. I do exercise, but I cannot do it at the same intensity as before. It is not a case of 'holding back', I genuinely am unable to attain the same level. I was describe myself as incredibly fit prior to my SAH, which was 18 months ago. I trained six times a week, with a running club and a personal trainer at the gym. I ran the Berlin Marathon 2009, eight weeks before my SAH. I can't run with my running club anymore as realistically, what I do now is 'jog' it is not running. I am unable to jog without taking regular walking breaks and I often stop. I used to love running with my friends, but I have to jog alone now as jogging and chatting is tiring. Plus it is difficult for me to make allowances for another person's pace. I sadly focus better if I have my own agenda. Additionally, I ended my gym subscription recently too. I could not lift the same weights as before and the travel to the gym and back was jading me. The gym was located in a nearby town and I hated the close proximity of other cars and people. I did not like the loud music in the gym and I would become startled with sudden noises. Additionally if someone chatted with me, I would be too tired to train and would have to come home early. It was a complete waste of money! I have since bought some DVD's for the house, which are suiting me better. (The old me would have found them far too easy!) but I think it is important to do some exercise, rather than none at all. So in a basic sense, I think it is possible to revert back to your old hobbies; but whether you do them in the same capacity may be a different matter. I used to run marathons; and I don't think it is totally unrealistic that I could do so now, if I trained of course. However, the way I approach the marathon would be very very different, to the extent that I may not think it worth it. I would probably have to train for six - nine months instead of the conventional four; I would have to give up all my voluntary work, as training alongside work commitments would be impossible; I would have to choose a quiet, countryside marathon, as I hate busy cities now and I would have to take regular walking breaks and stop every 2-3 miles at least.... Not only that, I get good days and very bad days. I may wake up race day feeling rubbish - and that would be the end of that! So yes, I think it is possible to do the same as before in a basic sense; but whether it is in exactly the same way is debatable..... I know understand that exercise, whilst is very good for improving fitness; the brain injury still remains - and no amount of running is going to get rid of it! Lynne

Thanks for the link. I hadn't actually seen that page before. I regularly attend the activity sessions. I don't pay any fee and I am not a member. Maybe you could do the same before joining, just to test the water? L xx

Welcome to BTG. Sorry to learn of your friend's SAH. Two weeks is such a short time in terms of SAH recovery. It's like the first 100m of a marathon, so there is a lot of improvement to come, so do not be too disheartened. I was in hospital for five weeks, but that is because there was a complication because I suffered hydrocephalus. This may sound strange, but those five weeks in hospital were the most peaceful of my life. My hospital environment was very calm and I felt very safe and secure. The biggest trauma at the time was suffered by those around me and from what I gather, the stress that my family and friends experienced was greater than mine. I trust that your friend is experiencing the same peace. To be eating and drinking two weeks after a SAH is very good. It seems that your friend is on good course. Your friend is going to be unbelievably tired for the next few weeks. It's just the brain's way of forcing a rest, nothing more. You will probably see improvements in your friend over the next few days and I look forward to hearing about them. Chat soon, Lynne

Welcome to BTG. Just concentrate on resting as much as possible for now. (I used to hate it when people told me to do that, and now I find myself saying the same!) I am sure you will think of some specific questions over the next few weeks and you will find a lot of support here. Take it easy, Lynne

Hiya, Yes, I am a member at Headway and I'll gladly share with you my experience there. Headway is a national charity for adults with brain injuries, so yes, it includes people who have suffered car accidents, sporting accidents, strokes etc. However, those of us who have suffered brain injuries do share common threads. At Headway, we were all born fit and healthy but something happened to us in adulthood, be it ill health or an accident. As a result, life is different and it has required an adjustment. We all suffer mental fatigue and have had low moments. I suffered depression in December 2010 (my SAH was November 09) and I developed an awful sense that my life as I knew it had come to an end. I contacted Headway, spoke with an organiser and was invited to one of their sessions. It was nothing spectacular. Just people sitting around, playing games, drinking tea and eating biscuits. All pretty benign stuff. I started chatting to people and have gradually made friends; one of whom I will be meeting outside of Headway next week. My Headway group arranges counselling sessions once a month with a consultant neuro psychologist and they have helped me enormously. My Headway group also arranges walking groups, a cinema club and trips to football and rugby matches. I have not been on these yet. I do voluntary work three days per week and so I cannot do too much else, otherwise I get very tired. I am unsure what you mean regarding the £15; is this a subscription? I have not paid any money to Headway and as far as I was concerned it was a free service. In terms of specific support and information re SAH; I would say BTG targets this more than Headway. Headway is a broader community. I do not feel that I must only talk to other SAH survivors to learn how to cope with dealing with my life. Sadly the SAH community is very small because not many of us survive a SAH, which is a sobering thought. I joined Headway over a year after my SAH. Your SAH was quite recent if I recall. I am unsure if I could have coped with meeting a community group very soon after my SAH. That is not to say that you cannot do so, of course. You can take a third party to Headway, if this makes it easier for you. For my part, Headway suits me, but it may not be for everyone. I am grateful for the friends that I have made there, and meeting new people to connect with is always a good thing. Lynne xx

I am not sure whether I should be posting this, so apologies if not! But here is a link for the Hardest Hit Protest in London on the 11th May 2011. http://thehardesthit.wordpress.com/the-may-protest/ There is a march and rally on behalf of the sick and disabled, their families, supporters and charities; to protest against the cuts to disabled benefits and services. It may be ambitious for some of us to actually attend, but there is a facility on the website to email your local MP and Maria Miller MP, the Government Minister for disabled people. I am sure that a lot of us have experienced how difficult it is to work through the benefits system and how the support we need is not always on offer. I accept that our emails to our MP's may not change everything. But if we don't do something; we will achieve nothing at all.

Hello, Welcome to BTG. I have not heard of the term ‘idiopathic SH.’ I’m not very well informed with regards to the medical side of things. I know I had a SAH, but I do not know which type. Regardless of that, I am sure that there will be common threads with our recoveries. My SAH was in November 2009, so I’m more familiar with my day to day life post SAH than what I was at the beginning. I do remember the start of my recovery to be a very frightening time and I had no idea why I felt the way I did. Unfortunately, I found BTG quite late in the day in July 2010 and I fumbled around, getting things wrong for many months. I too was fit and healthy. I ran marathons and trained in the gym very regularly. I believed I was invincible and ran the Berlin Marathon in 2009, eight weeks before my SAH. I worked full time too. To say that you’re in the early stages of your recovery is an understatement. Things are still healing with you. With your fitness background, you will appreciate how important it is to rest an injury. It’s the same with the brain. It needs to be free of as much stress as possible and it is going to function better in the long term if you give it the rest it is crying out for now. It is sometimes easier to break problems down to manageable sections. Instead of thinking about where you go from here and worrying about the future in general terms; use your appointment with the neuro surgeon in four weeks as your first milestone. Realistically, there is nothing you can do in four weeks other than rest, so just take that time to give yourself the best foundation stone to build yourself up again. The time for progressing and pushing yourself (within limits,) will come, but it is not quite yet. I think a lot of good will come if you completely rest for the next four weeks and then chat with your neuro surgeon about how you manage the time after that. Take care and hope to chat soon.

Aw Damien hun, I've just read your new post. You are correct in saying that you need to talk to more people. I do not believe that depression is something which a person can deal with alone. It is very frightening the way we are left to our own devices after leaving hospital. I must concede that the medical care I received in a physical sense was outstanding and I am indebted to the NHS. But you are so right about living in a brand new world and basically told to get on with it. When I joined Headway, I was introduced to other people in my 'brand new world.' It turns out that the things I was experiencing were very normal to my new friends and they were either experiencing the same, or had experienced the same. A psychologist at Headway explained his intervention in a very clever way. He said that if my house had a burst pipe, I would call a plummer. If I needed help in the garden, I may ask my Dad. So why not ask a professional for help with my emotions? The only experience of counselling that I have had is at Headway with a neuro psychologist. Personally, I would prefer speaking to a professional with a neuro background instead of a generalist. Brain injury is quite specific and I sense that I am benefiting more from my sessions because the psychologist is a neuro expert. Hope to chat again soon! Lynne

Hello! Welcome to BTG. I am a brain haemorrhage survivor, but there are others here who have had a stroke. I am sorry to learn that you have been through the mill. I can relate to how the eighth month mark is emotionally difficult. For my part, I began to realise the enormity of what had happened to me. At the very early stage of my recovery, I genuinely thought I was going to be back to normal in around 6 months; and when that didn't happen, I suffered an enormous depression. With brain injuries, the patient can lack a lot of insight at the beginning. I know that I did. I realise now, how unwell I was at the beginning, but it is only looking back that I can see this. With insight can come depression. It's a realisation of how things are. But importantly, it is only those of us with insight who can begin to work through our problems. If you don't know what your problems are, you can't work them through. The medical profession can consider the depression we experience 'progress,' because it's an indication that the recovery has moved on a level. From what you say, you seem to be going through a very typical stage of recovery. Depression hits a lot of us. I will share with you some things that I did to help with my depression. Maybe some of the tips will work for you too. I joined my local Headway group, which is a national charity for people with brain injuries. Have a look at their website to see where your nearest Headway is; or give them a ring. I go fortnightly and engage with the counselling sessions once a month. It has helped me enormously. I have made a very good friend there. He had a stroke around eight months ago and Headway has improved his wellbeing noticeably. Counselling was an integral tool to lifting my depression and this forum helped massively too. Remember that you are allowed to feel down in the dumps, so don't be hard on yourself for feeling out of sorts. A big thing has happened to you and you are reacting normally to it. I hope you are able to feel as rested as possible over the weekend. Lynne