Lin-lin

Skippy calls us 'mentaloids' ! I don't think NASAH's will cause too much offence!! Lynne xx

That's one hell of a chat up line, Kelv!! (Joke!)

Thanks for taking the time to reply to me. It is correct Kel, that I have not experienced this problem until now, so I do think I need to mention it to the doctor. Kelv - It is interesting that you describe similar symptoms. Maybe it is a side effect of the SAH, but not necessarily an indicator of something untoward. We should both mention it to our medical professionals, however. I received a letter form the opticians the other day, saying that I need an eye test, so maybe I should go along to that. I will let you know how things go. Lynne

I have been to the cinema and haven't noticed anything adverse. If you previously enjoyed going, then it would be good for your emotional recovery to do something you enjoy. If you find that it is too much for you, then at least you will know! But until you try, you cannot be sure. There are ways to organise a trip to the cinema to make things easier. Some nights/ days/ times are busier than others. When I worked full time, my Saturday nights were usually reserved for the cinema, but this is a busy time and I don't like crowds these days. There are quieter nights mid week, or in the afternoon; but this can be tricky if you are going to the cinema with someone who works full time. Additionally, if I can organise an aisle seat I will. This leaves me feeling less 'boxed in' and I can leave the theatre if I need to without causing too much disruption to others! Word of caution, 3D films may be a bit too much!! I did the mistake of going to see Avatar. I came out looking like Edvard Munch's painting, 'The Scream.' (Google it if you are unfamiliar with it!) Give it a go. If it's not for you at the moment, give it a while before trying again. But you may find you really enjoy and want to go again. Lynne xx

I know what you mean. I don't want to become hyper sensitive to every twinge and relate everything back to the SAH. I did read your post on eye socket pain, but I have not experienced the same. I didn't realise you were going to see a neuro surgeon. I hope everything pans out well for you. I have made an appointment to see the doctor tomorrow. I need to have my BP checked, so I may as well mention the problem with vision. It's been a few months since I last had a torch shone in my eye, burning my retina; and I do miss it... (Joke!!!) Thanks for your reply, (as always!) Lynne

Hello! Welcome to BTG. You will find lots of support here. I have submitted quite a few posts about the effects of pushing ourselves too hard in the early days and how this is ultimately damaging, not only physically, but emotionally and psychologically. We sometimes forget that we are in control of our lives. We can actually make decisions post SAH! Those decisions include how much we do at home and at work. I was very impressionable post SAH and became overly placid. If someone told me to put my finger in the fire, I would have tried and would have felt that it was my fault that it hurt and that I was 'weak' for not wanting to do it again. After a while of feeling ill, sick, depressed and out of control; I had to become assertive. I started telling people what my limitations were and this included (for me) resigning from my job and commencing voluntary work. (Please note that others have returned successfully to their jobs. I'm just explaining my story, which by no means is the 'only way' to do things!) With recovery, it is better to build things back up in little steps. In this way, you commence a journey of 'achieving.' If you do too much too soon, you find you have to pull back and reduce what you're doing and you can wrongly think you're 'failing.' You're not failing, but just doing too much and not factoring in the brain injury! (Easy mistake to make and we all do it.) I am presently seeing a psychologist and I received a letter from him this morning which says, 'When it becomes clear that your symptoms are permanent, to some extent, then finding a new life that works is far more successful than trying to regain a life that has been lost.' (Please note that the symptoms referred to, does not mean physical discomfort! That does subside! It's a reference to how our personalities can often change after a SAH and so trying to slot back into our old lives can be stressful.) If things are too much, re-organise your week to how it suits you and you start feeling comfortable. You are allowed to rest lots after your SAH and you will see the improvements if you allow your brain some time to heal properly. Take care, Lynne

Hi everyone, I was in company Saturday night and suddenly had the feeling that a contact lens had fallen out. I felt that the strength of one eye was stronger than the other and touched my cheek to see if a lens had fallen out. It had not and it then occurred to me that it was my vision. The eye corrected itself, but the problem transferred to the other eye. The problem went back and fore for about a minute. It was akin to taking a strong painkiller and experiencing a visual distortion. The problem corrected itself and has not returned. I 'think' that there have been two occasions today when I have heard a 'whooshing' noise in my ears; but I cannot be sure whether it was internal or maybe there was an actual noise that I was hearing. I'm telephoning the doctor today, but I was wondering if this has been experienced by anyone else. I don't feel in pain, but have certainly felt the need to be on my own today and have been a bit lethargic. Any ideas???!!! Lynne

I am so pleased to hear that you have been able to put measures in place to make you feel more in control of things. You are correct about how the workplace can be good for recovery and it is good to get out of the house and have some structure to the day. Voluntary work at the CAB has been a godsend to my emotional recovery. However, you must get the balance right. Doing too much work, will leave you feeling exhausted and emotionally drained. This can have a devastating effect upon you psychologically and you feel you're failing in some way when you are not. You're just doing too much! I force myself to remember that I am in control of my recovery. It is for me to dictate the pace of it, not others. Be proud that you have attempted to return to work. It is a phenomenal achievement that you have succeeded so far. Reward your very impressive attempt, with a gentle few weeks/months. Be honest with yourself and reduce the days even further if you need to. If you feel strong, increase your hours. You are in control of your recovery and you are allowed to steer it as you see fit. Reducing your working hours is a very empowering step. You are learning about what your present capabilities are and fitting work around your health. I have learned to be assertive about my recovery. People have had very definite views about what I should or should not be doing. There have been occasions when I have tried to accommodate friends/ relatives views and sometimes it has left me very upset, depressed and exhausted. No more! I now work within my capabilities and I feel far better for it. Best wishes, Lynne

I am quite concerned to hear that you are struggling and I wonder whether there are methods which can be adopted to make life a bit easier for you until things get naturally better. I accept what you say in that your GP is a nice person. I am sure that she is. I am sure that she is a good GP too. However, that does not translate to her getting everything completely correct all of the time. I saw my consultant four months after my SAH. I insisted upon the appointment because my employers were ringing me weekly asking me when I was returning; and I somehow thought my fatigue was my fault and that I was somehow lazy(!) I explained this to my consultant and he laughed, adding that to contemplate returning to my kind of work in under six months of a SAH was madness. He explained that if my job was more practical in nature; perhaps I could contemplate, in time, returning to some light duties. However, if the job requires more reasoning, then it is more difficult to return to it, because the brain is under greater pressure. He explained that a professor in mathematics at a local university may find that s/he can never return to that kind of work and perhaps search for something else. He said that an anaesthetist at his hospital had a SAH and it took him two years to properly return to work. Being that you're a teacher, you are in a far better situation that those of us who have worked in the private sector, because you can get more reasonable time off sick - and I would imagine getting full pay initially, (or half pay.) I have had a few appointments with my consultant and a neuro psychologist, none of whom have advised me in the same way as your GP.... Do you have a local Headway group who can offer you support? I was very impressionable after my SAH and had a GP told me that I should go back to work soon after my SAH, I would have tried; believing I was the one in the wrong for struggling. In the early months, I felt that I was lazy and how needing to sleep was 'wrong.' Fortunately, members of the medical profession were strongly against my returning to work, (unless I really wanted it,) but the overwhelming advise I had, was to look after myself and to rest. Tiredness is nature's way in getting us to slow down. I listen to my fatigue and feel healthier for it. Would another month or so (at least) off from work, really be that impossible??? Lynne

Hi Welcome to BTG. My SAH was on the 21st November 2009, just over a year ago. The first year post SAH, is very, very tiring. It's completely normal that you feel the way you do and there is no magic cure around it; but there are ways to make life easier. I took the very difficult decision to resign from my job last year. I never went back after my SAH. I was a Solicitor, and the environment was far too stressful for me to consider returning. Not only that, my bosses would not offer me a phased return(!!!) In July 2009, I commenced voluntary work, two days per week at the Citizens Advice Bureau. As a volunteer, there is no contract of employment, so there is no pressure for me to work when I'm unwell. I look upon this as 'work fitness' for when I am ready to consider paid employment again. (Which I'm hoping is achievable within the next few months.) I am going to start a third working day with the Shaw Trust, a charity who help disabled/ incapacitated people get back into work. I'm waiting for my CRB checks to clear and then I'm good to go. There has been some delay in my starting with them, because I have had bouts of feeling ill; which indicates to me that the time is not entirely correct for me to be in paid work. The tiredness is nature's way of getting the body to slow down. The brain needs more rest than usual to heal and repair. Pushing yourself will do no good at all. It's difficult, but you've just got to give into it. By 'negotiating' with your brain, i.e. giving it the rest it sometimes needs, it will reward you with feeling better and alert more frequently. A mistake I made was trying to slot back into my previous life, but it became like knocking a square peg in a round hole. Recovering from a brain injury, does not mean that you cannot do anything ever again, but it may mean that you cannot do everything the same way as before and in exactly the same way. For me, the stress of paid employment needed to be removed for me to concentrate on my health. But I say this because of the working environment I was in. The corporate world is ruthless and does not fit the person I am now. I hope the doctor's appointment goes well. Lynne

You are encouraged to make your initial claim for ESA by telephoning Jobcentre Plus on: 0800 055 6688. I don’t know whether this is the same number for Northern Ireland, but your local Jobcentre will know. They will send you a statement about your claim which you must check, but you do not have to sign it or return it. You will have to gather any further evidence required, usually a valid medical certificate. Upon Social Security receiving the correct documentation from you, your first payment will arrive in around a week or so. You will be paid fortnightly. I think the initial rate is @ £132 pw. You will have to send regular medical certificates to Social Security as and when they ask. During the first 13 weeks after you claim, you will be asked to fill in a medical questionnaire called ESA50. You must return it to the Department for Work and Pensions (DWP) within six weeks. Thereafter, you will be called for a medical examination with a government doctor. Different things can happen at this stage and it is difficult for me to list all the variables, some of which may not happen anyway. Whatever the outcome at this stage, let me know and I’ll talk you though the various steps. Remember that there are other benefits you may be able to claim alongside ESA. You can apply to your Local Authority for Housing Benefit to help with rent, or Council Tax Benefit. If you have a mortgage, you can apply to the DWP for help to pay the mortgage, although it may not cover the whole amount. The form you need is MI 12 and is obtained from the Job Centre. I do not know much about your recovery and so I am unsure as to whether you may qualify for Disability Living Allowance, but someone at Welfare Rights or the Citizens Advice Bureau will be able to help you with this. Take care, Lynne

That's fantastic! The message actually makes perfect sense to me! I see life very differently after my SAH and am able to distinguish what is important and not. So, I can say with complete genuine honesty that 'I can see clearly now my brain has gone!' It should be our life motto here! Fab, thanks for sharing! Lynne

Haha - very funny Sami!! I'm thinking of getting one done which says:- 'Out with the old, in with the neuro...' xxx

I went to a headway meeting today. The main session was a simply a social meeting, presenting an opportunity for people to have a chat over a cup of tea and meet others recovering from a brain injury. There was also an opportunity for us to talk to a psychologist, as part of a group; and I went along to see what it was like. There were five of us in the group, all suffering with an array of brain injuries. I was the only one there who was a SAH recoverer. One lady there was @ 15 years into her recovery and attended Headway simply to help others. It was interesting to hear her account and she remembered the various stages we were at. Others were a only a few months into their recoveries and I was able to share with them how I felt @ the 6 month stage and relate to the emotional stages they were going through. I noticed that when the meeting started, we were all quiet, a bit nervous and some of us looked sad. By the end of the meeting, there was laughter and I noticed how there was a certain lightness in our manner after the meeting. Today has had a very positive impact upon me and I will definitely go again. If you have a local Headway group, I would consider contacting them. Even if you consider yourself well, attending the meetings and helping others is an invaluable assistance to them. I got a lot out of today, not only from the help I received, but also from the small help I was able to extend to others. All in all a good day and I'm beginning to see how fortunate I am to be able to say that. Lynne

It's all trial and error and we've all been there. It is only through pushing ourselves too much and feeling exhausted as a consequence, that the penny finally drops and we take the foot off the accelerator. No matter how many times people tell us to take it easy, it is only through suffering the effects of pushing ourselves too hard, that we begin to listen and slow down. I sometimes explain to others that my brain is like a Trade Union. If I place unrealistic demands upon my body, my brain will 'down tools' and insist upon better working conditions! I now use my tiredness as an indicator of what my brain needs me to do, instead of raging against the fatigue and forcing my brain to work beyond what it feels comfortable in doing. By 'negotiating' well with my brain, it rewards me with better days; and as time goes on, the better days become more frequent. Wishing you a nice, restful week. Lynne

Hi Welcome to the site. You are doing incredibly well and it is amazing that you have been able to work. Remember to listen to your body. Feeling tired, (sometimes exhausted) post SAH is common and it is the body's way in getting you to slow down. It is important that you balance your active times with some quiet, calm moments. Sometimes, I would get (and still do,) a little spaced out. This is often reduced if I have some quiet, 'me' time. Your brain is healing from a trauma and it can't get better if you push it too hard. You would not put pressure on a broken ankle, so we need to learn to take the weight off our brains and give it the rest it needs. I used to be in to fitness in a huge way and 'rest days' were always scheduled into my training programmes because muscle repair can only take place during rest. The same goes for the brain. It's great that you are as active as you are; but remember to reward your brain with some quiet days too, as a little gift and thank you to it! You are very early into recovery. You are doing incredibly well; but don't be too eager to slot back into how you were prior to your SAH. You don't have to do everything 'yesterday.' 'Next week' is fine and 'next month' is better. Take things easy and be proud of what you have achieved already. Lynne

Hi Karen, Having a SAH puts enormous pressure on the brain and it does affect the way we process events, so yes, it is very confusing; and you can sometimes feel that you're a slightly different person, albeit in the same body. I will share with you my reaction to my career after SAH. I am not suggesting that the way I'm doing things is the 'only way,' it's just my method. I have said this before, 'one recovery does not fit all,' and what is good for one person is not necessarily suitable for another. There is no 'right or wrong' way, it's all personal and unique to us. My SAH was in November 2009. I was employed as a Solicitor and my initial view is that I would return to work at some point. As the months progressed, I sensed that I was not functioning the same as before. My personality had slightly changed. I developed chronic insomnia which contributed towards depression and my thought processes were not as sharp. I became less vocal in large groups and still hate busy, crowded environments and spontaneous events. I reasoned that to try and slot back into my old life was like knocking a square peg in a round hole. I knew that to return to my previous job would have put enormous stress upon me. I also realised that life is very short and I became more motivated in developing a calmer future. For me, returning to a corporate environment as a lawyer, would have been at a huge emotional cost and I was not prepared to pay the price. I resigned when my sickness benefit run out in May 2010. I can't pretend that living on benefits is easy, it is a struggle; but I had to be realistic and accept I was too unwell to work. In July, I commenced voluntary work at the CAB and totally love it. I find it enormously rewarding and unlike my other job, feel that I am doing something of value. This month I will be commencing extra work at the Shaw Trust. They are a charity who help disabled people and those suffering incapacities return to work. I am going to investigate what schemes are available for someone like me to ease me back into work and liaise with employers on my behalf. A mistake I made after my SAH was trying to slot back into my old life, without any regard to the enormous event I had suffered. I accept that my life is now different, but instead of raging against it, I am becoming proud of what I have achieved in 12 months. Recovering from a brain injury is frustrating and employers (and family and friends sometimes!) can be genuinely confused by the process. Looking the same is not akin to being the same or feeling well. For me, resigning from my job was not a bad thing and good things will come out of it. I know that some people here have returned to their jobs and perhaps they can balance my account with how returning to work was possible for them. Take care, Lynne xx

Hi Jo, Sometimes the bravest decisions in life are the ones where we say 'no, I'm not doing this.' It takes a lot of courage to be assertive and to put our health first; so well done in acknowledging that work is too much at present. My SAH was in November 2009 and I never returned to my job. I see no shame in this. SAH is a big thing! I started voluntary work at the C.A.B in July. I'm still there and go in when I can. There is no contract of employment when you're a volunteer so no-one can say anything when I'm too unwell for work. Anyway, with regards to benefits, it's not possible to advise you specifically on line because 'one benefit does not fit all.' There is an array of benefits out there and they depend on your own personal circumstances, i.e. whether you've worked, do you have children, are you co-habiting etc.... I recommend you attend your local Citizens Advice Bureau or Welfare Rights. Since I work for the C.A.B I can only outline what the C.A.B do but I hear Welfare Rights are good too. At the C.A.B you will meet with an advisor who will discuss your exact circumstances and tell you precisely which benefits you need to claim and how to claim them. It is important that you do this as so many people do not receive the benefits they are entitled to. It is estimated that 9 billion pounds are unclaimed in benefits every year. Benefits are confusing and the forms are not easy to understand. There is a particular way to complete the forms and an advisor will know how to go about doing this. It's easy for me to get help at the C.A.B because I am there every week; but if I was not, I would not attempt to sort my benefits out myself, I would get an advisor to do it. One word regarding the mortgage; it is possible to get assistance towards the mortgage, (housing costs,) but it may not cover the entire amount. I was able to freeze my mortgage for 12 months, so you may want to contact your mortgage provider direct and make enquiries. But, go to the C.A.B / Welfare Rights first, see what they say. Any problems, PM me. Lynne xx

Hi My SAH was in November 2009 and the emotional impact and the subtle changes in my personality have taken me by surprise. I have learned to be gentle on myself and try to accept the way I am, as opposed to trying to slot exactly into my old life. I found trying to be exactly the same as before a tiring and exhausting process, so I now try to work within my new parameters. I was a social butterfly, always the last to leave parties and frequently attended bars and clubs. Talking to strangers was never a problem for me and I guess I would describe myself as socially confident. I am quieter these days, but that's ok! I avoid busy crowded places. I am quieter in groups, listening more to people as opposed to contributing. I still get tired upon meeting new people. I think this happens because I have to concentrate more when talking to someone I don't know well and I become tired quicker. Instead of raging against this, I work with it. I know that a shopping trip in a busy town will exhaust me- so I avoid it. I don't particularly find this a hardship as I can shop on line. I sometimes think about the shopping trips I used to enjoy, spending whole Saturdays parading from store to store. I really couldn't think of a more banal thing to do these days. I now go on countryside walks or visit the beach and can't believe I didn't appreciate the more beautiful things in life before. So change can sometimes be a good thing. I went to my first Headway session in December and met a psychologist. I am going to commence group sessions with him in January and even from my brief chat with him I felt better. He explained counselling very helpfully. He said that if my house had a burst pipe, I would call a plumber. If I needed help in the garden, I may ask my Dad. Why would I not ask a professional to steer my emotions? It was a lovely way to explain it and it made sense to me. At Headway, I met people who could relate to what I was going through and if I were you, I would consider contacting them. Take care, Lynne

I am very sorry to hear that you are scared and upset. I hate the idea that you are feeling anxious. The medical language used to describe to your condition is above my understanding and only a doctor (and a neuro doctor at that,) can properly explain things to you. So that I am able to understand the situation fully, I am assuming that you do not live in the UK? I say this, because I am aware that Cedar Senai are a private company and I am not aware that they have hospitals in the UK. The nature of a private company, unlike the National Health Service (NHS) here, is that they are essentially businesses. Their motive is to make money. When I had my SAH, my family were anxious as to their own health and enquired as to whether they should have scans. They were told that the NHS could not fund the scans unless there were definite external symptoms that were necessary to investigate. There had to be more of a reason simply than their worry that something 'might be wrong.' The doctor explained that if they wanted to pay for scans in the private sector, then the hospitals would certainly take the business, but the consideration my family needed to take on board is this. The brain can sometimes show patterns that are not necessarily life threatening; but of course, if we know they are there, we worry and might seek investigative work that may not be strictly necessary. Following from this my family did not pursue matters. It is curious that two nerosurgeons have said different things. I wonder whether the second 'problem', showing abnormal blood distribution, is because you are recovering from a SAH. That is, your brain is still settling from the trauma of a SAH, so you may have an irregular pattern, but it may be a 'normal abnormality' for someone who has had a SAH. A few of us here have had scans showing 'normal abnormalities.' That means, patterns which are not normal for people generally, but 'normal' for a SAH patient. Do Cedar Senai have your full medical records? It may be the case that your first neurosurgeon is aware of the problem the second doctor speaks of, but because the first doctor knows your full medical history, s/he may think it is not a problem that needs further work. If I were in your shoes, I would revert back to the first doctor and explain the new findings and ask for an explanation. There may be a plausible explanation as to the different medical opinion and the first doctor may consider more investigations unnecessary. You have to bear in mind, that if a hospital is working as a business, it is making money from appointments and scans. I am not saying in any way that they are acting unlawfully; but they can legitimately suggest that numerous things be investigated. (And invoice you!) I used to work in a corporate environment as a lawyer. (Never again, I have seen the light!) But my bosses told me that if 'a client came in with one problem. Make sure they leave with five.' It's horrible, but it does go on. I would ask you to bear this in mind and if I were you, I would revert back to your original doctor who has all your medical records and the advantage of having cared for you from the outset. Take care hun, Lynne xx

Hi Jo, I did not have a craniotomy, as I had a coiling procedure 12 months ago following my SAH. After reading your post, I wanted to send you warm wishes, despite not being able to advise you specifically upon your recovery. Your story struck a chord with me and I felt the need to contact you. I hope your return to work is as comfortable as possible, but ask that you put your health first. Listen to your body, especially the little indicators it gives, like tiredness! We try to override fatigue when recovering from ill health, but it's nature's way of getting us to slow down. I hope the next few weeks progress well for you. Lynne xx

Aw, shucks! Thanks! You help us too. Glad you're feeling a bit better. Take care, Lynne xx

I recently answered a question on exercise for a new member. Look up started posts for 'bay' under the thread 'exercise.' I was very fit prior to my SAH and so was very eager to get back into the swing of things. I'm 12 months in and it remains a work in progress, but I am persevering. Take care, Lynne

Hi Welcome to BTG. I read your exercise thread before reading this one and I think that you really should speak with your GP before commencing any fitness routine. I am sorry you feel rotten. You are unbelievably early into recovery, although I appreciate you won't feel that it is! It is only as the months unfold and we look back, that we realise how early five months is after a SAH. However, when you are living it it seems like a very long time and it drags on. I predict one thing, that you may not believe at this stage. When you, (like me,) are 12 months into recovery and someone joins this site explaining how they feel five months in; you will tell them how early it is and how feeling tired and emotionally drained is common. You will probably also point out that five months is such a short space of time in SAH recovery. When I was five months in, I assumed that I should have been feeling better and that I was somehow failing in my recovery. I now understand things a bit more and am far more gentle with myself. If I had my time back again, I would have taken the first six months a lot calmer. Easier said than done, I know; but really, there would be no harm at all in you taking the next four weeks very gently. Rest is an important part of recovery and the one we neglect the most. I think we all push ourselves too much initially, but we then reach the stage where we 'get it' and take the foot of the accelerator! Take care and keep in touch. L xx