Lin-lin

Hi I think exercise helped me a lot, but you've got to ease yourself in gently! I used to be a member of a running club and ran a marathon eight weeks before my SAH. I trained in the gym with an ex marine, so overall my fitness was pretty high. I think this is relevant to how I approached fitness afterwards as I believe my body has retained fitness memory. Even with my level of previous fitness, even basic energy expenditure fatigued me after the SAH, but there are ways around it. Here is how I did it (and still approaching it.) Incidentally, I am 12 months in to recovery. The first thing I did was to abandon the 'no pain, no gain' philosophy. This is not conducive to a SAH patient! You've got to listen to your body and I don't think it's wise to push it too much, particularly at your stage. I purchased DVD's. There is a series of fitness DVD's called the '10 minute Solution.' You can get a pilates version and ones for abs, toning for beginners etc. (You can get the DVD's at supermarkets or online.) The advantage with them is that they are 50 minute workouts, broken into 10 minutes. So you can do just 10 minutes if you want. This is all I could do when I started, but I have built upon it. Not only that, it is psychologically easier to approach a 10 minute workout. I used to walk, every day if I could. Just to the Post Office initially, which should have been a 20 minute walk, but it took me longer! I took water with me and gradually increased the distance, breaking into a light trot for a few minutes, then continuing to walk. (Please factor in that I used to run marathons, so the run/walk method may not be suitable for everyone.) At the nine month stage, I joined a local gym and just re-introduced myself to fitness again. I did not (and still don't) lift heavy weights and don't push myself too much. It's gentle, but I look upon it as building a foundation for when I get better. I think exercise is good and it has helped me physically and psychologically. Obviously, I would recommend that you have a chat with your GP before hand. I did and my GP thought that the way I was approaching exercise was sensible and beneficial. Be prepared to find it initially challenging and don't be disheartened. My first attempt lasted three minutes. I was lying on the floor face down, with the intention of lifting my upper body up with my hands. I succeeded in doing it a couple of times but couldn't lift myself up on the third and remained face down unable to move! I then started a laughing fit, which made it worse! Hope you find what works for you. Lynne xx

Thank you very much for all your encouragement. I went along today to my first Headway meeting, which just happened to be their Christmas Party. I went along for the last hour. The session is open for three hours, but as it was my first attendance, I thought I would just 'pop in' today. There are different types of meetings during the week and today's session was an 'activity session' at a local town hall. Everyone was so kind and welcoming and I had a nice chat with people, over a cup of tea and a mince pie! It was interesting to learn about the array of brain injuries that people suffer. Some people were there with their carers, because their injuries have left them with obvious disabilities. There were others, who looked so well, that I was not sure whether they were staff or people who had suffered brain injuries. It was sometimes surprising to hear someone divulge that they had experienced a brain injury years ago and it was nice to see how they had coped with re-building their lives. Very helpfully, a neuro psychologist attends the sessions once a month and he was there today. We had a private chat and both decided that I would benefit from joining the group sessions, where people share their stories under the guidance of the psychologist. He explained that there was no pressure to contribute to the discussion and that I could just go along and listen, if I wanted. He explained the role of counselling very well. He said that if my house had a burst pipe, I would call a plumber. If I needed help in the garden, I might ask my Dad. Why would we not ask someone to help us with our emotions, when arguably they are more important. I left feeling brighter, lighter and happier; with an appreciation that some peoples lives have changed dramatically and their struggles are exceptionally challenging. I need to appreciate that I am fortunate that there is still a life ahead of me, it's just going to be a bit different to before. So all in all, a good day. And I won a writing set in the raffle too. Lol!! Lynne xx

Very encouraging and thanks for the post. Nice scarf, by the way... Lynne

Hi, Welcome to BTG. I am 12 months into my SAH. I recall the 6 month stage marking a difficult time for me emotionally. At the six month stage, I realised that I was not exactly the same as before and I started the process of grieving for my old life. The medical profession consider this process healthy, because you are developing insight into your new life and it allows you to move on and gradually come to terms with what's happened. It is not possible for anyone to accept new circumstances, especially ones which were forced upon us, immediately and happily. You have to work it through and unfortunately it takes months. An added problem is that the tool we use to process our emotions is our brain - and that's the very thing that's injured! We would not wonder why we can not put pressure on a broken ankle, we would just accept it, but we wonder why we're upset post SAH. The truth is, we are dealing with a massively stressful event and the very tool we use in such events is the brain, (and it's a little broken!) No wonder we're struggling! It helps to be easy on yourself and to realise that it is healthy to be tearful. The low mood is serving you a purpose in getting the upset out, but I accept it feels rotten. Your brain is healing and the low moods you're experiencing is proof of that, even though you probably think you're moving backwards. You're actually moving forward and even though you may not realise it, you are commencing the process of coming to terms with the event. Think of it like an emotional washing machine. The tears will give you clean linen one day! It does get better. Take care and use this site often. Lynne xx

My understanding is that Welfare Rights can send an advocate to accompany you at the tribunal. The CAB can in certain circumstances, but you have to be within a certain income bracket. Someone in my situation, i.e. single, living alone and on benefits would qualify for representation at a tribunal by a CAB representative. This qualification is allowed under the Legal Help scheme, or Legal Aid as it is sometimes referred to. However, if I were married or cohabiting, this would mean that the household income is higher and it is likely that I would not qualify for representation. (Unless the partner in question was on benefits and then I would qualify.) If the CAB cannot send an advocate, but you would like a specialist to accompany you, try contacting Welfare Rights, because they may be able to help, irrespective of the household income.

Hello, I am sorry that you are experiencing a difficult time right now. Our circumstances are different. I am not a carer. I had a brain haemorrhage 12 months ago; but I am an only child, so we have something in common. I am sure that there will be carers here who can relate to what it is like to see a loved one unwell. I can only share with you the patient perspective. Your visits will help your Mother. I looked forward to seeing my visitors, even if I mainly slept throughout the visits or was unable to communicate. It was comforting just to hold their hands and to hear their voices. There is no reason for you to feel guilty for eating. I did not resent my loved ones engaging in normal life. In fact, I encouraged it because I needed them to be physically well to look after me. Your Mother would not expect you nor want you to feel any guilt. I would imagine that she would take great comfort in you eating well. (You know what Mother's are like!) I would sometimes hear my Mother expressing guilt for various things, which as a patient, I always thought a bit odd! Even to this today, she will not complain to me when she has a headache; as if I have some authority on them. (I don't!) The tiredness your Mother is experiencing is very normal. My boyfriend started calling me 'Cat Girl' because of my need and ability to nap numerous times throughout the day. Four weeks is incredibly early for a condition like this. The brain has an amazing capacity to heal, but it is very stubborn and will do things in its own time. Rest is an important aspect of recovery, although it can seem to carers that nothing is happening. This isn't quite true and there's a lot happening 'behind the scenes.' I hope the following days and weeks bring some comfort. Lynne

Thanks for taking thhe time to reply girls. I am definately going to give it a go. It sounds good from what you both report. I think it would really assist with the emotional side of things, which I think I need some help with at the moment. I will email Headway for details of meetings. Cheers! xx

Hi Just want to know if any members have had any dealings with Headway and whether you have found their meetings of benefit. The predicament I have found myself in is this. There were elements to my previous life which occupied my mind and time. I played hard at parties and bars and was also a member of a running club, training around 5-6 times a week. I now shun the party scene and cannnot run as before and so am unable to return to my running club. This has resulted in my friends, (quite understandably,) continuing with their busy lives, but I have been left behind. It is isolating and I do not feel that I am making the most of my life. I realise that a new way of living is not going to come knocking on my door and instead I have to put measures in place to find it. I have thought about Headway but do not really know much about them. I have seen their website, but wonder what goes on at their meetings. I just think it might be a way to extend my social life with like minded people and to inject some kind of routine into my evenings. Many thanks, Lynne

The main tip that I have for you is to be aware of the ethos behind the medical, so that you understand why it is happening and therefore the likely result of it. ESA replaced the old Incapacity. There is a huge misconception in society that people claiming Incapacity are lying about their health problems and are lauding it on benefits at the expense of the tax payer. I am not saying that there are not dishonest people out there, but they are such a small minority and the situation is presented as a far greater problem than what it really is. The purpose of the medical is to sieve out the 'liars.' The way the medical assesses this is as follows. It is thought (and Ian Duncan Smith intimated as such in the Commons recently,) that those who are lying about their ill health will not appeal the medical decision. This means that far more people fail the medical than what should, with the idea being that the liars will not appeal and the honest people will. The appeal tribunal is generally considered a fairer process, with more people passing. To pass your medical, you need 15 points. However, the questionnaire the doctor works from is very closed and s/he cannot deviate to discuss your problem broadly. They are just ticking 'yes' or 'no' on a computer. Also, the maximum points you can receive for each area is 12 points. So even if you get a full score for your incapacity, you are still going to be three points short. Many deserving people fail their medical. Don't take it personally, it is just the process. If you fail, get someone at the CAB to prepare your appeal, which is an easy form filling exercise for a specialist. When the appeal is lodged, your benefit will be re-instated at the lower rate at @ £60 pw. The appeal date will probably be in March/April, if not later. The system is quite blocked at the moment, indicating how many people 'fail' their medical. I am not saying for one moment that you will fail your medical. However, I simply want you to be aware of why you might. Lots of people become upset at the outcome of their medicals and feel that they are not believed when they 'fail'. Do not take it personally. Lots of people on BTG 'fail' their medical. It is annoying, frustrating and quite frankly insulting; but being aware of why it happens does help the way you deal with it. I went into my medical with an open mind, reassured that it was not going to be the final decision and the appeal was in place if I needed it. So my tip is as follows. Hope to pass. Don't be surprised if you fail. If you do fail, appeal the decision and let off steam here!!! Good luck, Lynne xx

Hi I developed hydrocephalus immediately after my SAH. I was in hospital for 5 weeks because of it. My consultant gave my body the opportunity to try and resolve matters itself despite pressure from other doctors to fit a shunt. In my fifth week, matters started to improve and I was discharged. A recent CT Scan in July has demonstrated that I have dilated ventricles which I understand to be from the hydrocephalus. I am awaiting an appointment with my consultant to discuss what needs to be done about this, if anything. Regards, Lynne

Thank you for your post. I have had a difficult time of late, culminating in flu like symptoms over the last week. This has all contributed towards a very low mood and a general resignation that I will always be unwell and things will never be easy again. It is encouraging that things can get so much better. Lynne

Thank you for sharing your post with us. Your positive attitude is very impressive and I have taken some lessons from it. I wish you well. Lynne

I'm sorry to hear that things are difficult at the moment. I can't offer you a carer's perspective because I'm a SAH survivor, (coming up to a year this month.) I do take on board how confusing it must be for family and friends to live with someone who has had a brain injury. It strikes me that maybe your husband is frustrated during DIY because he remembers how he used to perform projects. It's difficult to try and repeat tasks, only to find you are slower or don't have the same reasoning to work through problems. It's difficult to consider yourself a reduced version of yourself and I am sure all carer's would understand that; however, it must be very difficult for family who have to bear the brunt of our emotional fallout. Shouting at those closest to us is the unfortunate and unfair way in which we deal with our frustrations. This is true whether or not we've had a brain injury, I guess. I can fully understand your upset at being shouted at. It must be confusing for you to have your husband behave in a way which is unfamiliar to you. Conversely, I understand how recovering from a SAH is frustrating and the feeling that no-one understands makes it worse. I become anxious when people try to get me 'back to my old self,' and there can be trigger words and phrases which make me angry, to the surprise of those around me. I don't know whether your husband is on this site. Would it help him to contact people here? It may help him to come to terms with things, which will have the advantage that he becomes easier to live with! I was a real pressure cooker of emotions before I found this site in July. My interpersonal relationships have become easier since that date. I take what I learn here into my emotional life and I've developed more insight and have become calmer. Hope things improve soon, Lynne

Hi Sally I really sympathise with how being on benefits make you feel. It’s demoralising and scraping by every week can take its toll on your wellbeing. It’s not fair that you feel pushed into considering returning to work. If you do not feel fit for work, it is only fair that you explore the out of work benefits which are available. To answer your question specifically, a full picture would be needed of your personal circumstances. Details would be needed regarding your savings, husband’s earnings, husband’s hours of work, benefit details, details of your council tax, details of your rent/mortgage and whether your home is rented/owned etc. As you can see, it is not possible for someone to offer you specific advice on a forum like this. Too much information is needed. As a generic overview, people unable to work can claim ESA, but you may be able to get other benefits too depending on your circumstances. (I accept you have received a negative outcome concerning your DLA, but the CAB help people in this situation daily. Maybe the decision can be challenged?) With DLA, you have to have care needs or mobility needs for at least three months. You have care needs if you need help with things like eating, washing and getting dressed etc, or you may need help on a day to day basis. You can be considered as having mobility need if you are blind or partially sighted. DLA (care) is payable to anyone who struggles with personal care or needs someone to keep an eye on them. Normally, the illness needs to have lasted three months and be expected to last another six months. Statistically, people who request their DLA forms to be completed by specialists have a higher success rate than those who do not. I appreciate that you have attended upon Welfare Rights, but do they know your DLA has been stopped? Is it possible to challenge the decision and re-attend upon Welfare Rights? It’s a good idea to get advice from a specialist before taking any steps with this. There are time limits which are strict, normally one calendar month. You can ask the DWP to provide written reasons of their decision, this actually gives you an extra 14 days to ask that they reconsider their decision. But to be honest Sally, this area is complicated and I would refer it to the CAB or Welfare Rights. You and your husband may be able to claim Working Tax Credit. This is paid to anyone who is working 16 hours or more per week and is on a low income. Child Tax Credit is paid to anyone responsible for at least one child. You will need to make an application with your husband, because you live as a couple. Your combined income has to be within a certain level. The way this credit is calculated is complicated. If you are responsible for one child and you have an income of less than £50,000, you should get some tax credit. It’s claimed from the Inland Revenue and HMRC have an online calculator which you can use to find out whether you qualify for tax credit. http://www.hmrc.gov.uk/taxcredits/payments-entitlement/entitlement/question-how- Tax credits are claimed on the Tax Credit Helpline 0845 300 3900. Council Tax Benefit is for someone on a low income or who lives with another on a low income. It doesn’t matter whether the person claiming is in or out of work. You claim this from your Local Authority. If you are in rented accommodation you could consider obtaining Housing Benefit from your Local Authority. To claim DLA you can call the Benefit Enquiry Line on 0800 88 22 00 and ask for a claim pack, but if I were you, I would refer the challenging of the DLA decision to a specialist. I’m concerned about your time limit however. Maybe it would be worthwhile contacting the DWP to explain that you are going to take legal advice and ask for an extension. Good luck, it's a jungle out there! Lynne

Tracy, Benefits are so confusing. I’ll try to simplify the rules concerning ESA for you. ESA is the new Incapacity Benefit (IB). New claimants don’t receive IB anymore, it’s being phased out. The purpose of ESA is to give people who are suffering ill health a replacement income because they’re too unwell to go out and work. If you are too unwell to earn an income, it is only correct that the Government help, because without assistance people would be impoverished. There are two types of ESA. 1. Contribution based 2. Income based Contribution based This is for people who have made National Insurance Contributions i.e people who have been in employment. What normally happens to employed people who find themselves unwell, is that they first receive Statutory Sick Pay; and when 28 weeks has elapsed, they move onto ESA. Income based There are some people who fall ill when they are already unemployed. It would be unfair for these people to remain on Job Seekers Allowance because a component of that would be that they have to actively seek work. Otherwise their benefits will stop. People already unemployed therefore receive Income based ESA. Applying this to you Tracy, if you have not worked for many years, (I’m guessing 12 years?) you would not qualify for contribution based ESA. Income based ESA is means tested and your husband’s income would be calculated as being your income too. For you to qualify for income based ESA, you/your husband must be on a low income; have under £16,000 in savings and your husband must not be working more than 24 hours per week. You can double check with the DWP on their phone number 0800 055 66 88 Lynne

If you google a generic search, such as 'volunteering opportunities,' a list of websites appear. There are an array of office opportunities within volunteering. My voluntary work is office based and I start at 10.30 am because of my insomnia. There is no contradiction with someone claiming ESA and doing voluntary work. The purpose of ESA is to help people back into work from ill health. The Job Centre encourages it.

Aw Jules - the article is just fabulous! Well done! I love the fact the article mentions how illnesses of this nature can present big challenges in an emotional sense and not just physically I.e. Being healthy and well one day, but dealing with disabilities the next. I, and many others here, have been lucky in how we've escaped obvious physical difficulties and how grateful we are for that. But I am sure that others, like me, have more empathy after hearing stories here. We will never know what it is truly like to be faced with a physical disability, but perhaps we are less ignorant. Thank you for raising awareness.

I'm eager to get back to work too. You're in a similar position to me in that we will not be returning to a previous employer. Instead, we will be competing in the employment market with people who have no health concerns. In view of the fact that we are at a definite disadvantage, (cognitive difficulties, reduced stamina, fluctuating good and bad days,) the task of persuading an employer at interview may be difficult. This is the point of ESA. It's far from a perfect system, but help from the government exists for help people like us, because getting back into work is difficult for a healthy person, let alone someone recovering from ill health. You can do voluntary work whilst claiming ESA and even earn £95 pw whilst on it. (Keep an eye on this with the new government, however; the welfare bill is subject to lots of reform.) Voluntary work is a good way to phase yourself back into work. I started volunteer work in July - eight months post SAH. There is no contract of employment and you can please yourself with the hours. Being at home all day can sometimes fool us into thinking that we are better than what we are. A day at work is tiring, particularly if you have to repeat the process more than once in the week. Volunteer work is a process to get me 'work fit.' It's my 'physical and mental training' before I'm unleashed into the world of proper work! Athletes always train for an event; this is the same principle. It would be perhaps different if we were returning to a previous employer who would make concessions for our ill health; but that's not our reality. You are entitled to this benefit Gill and so it's entirely appropriate that you look into it. You can even look for work whilst on it and so I think it's worth putting the forms in. You've got nothing to lose. Did you know that around 9 billion pounds goes unclaimed in benefits each year? We don't hear so much about that in the House of Commons, do we Lxx

I have had no dealings with DIAL so cannot comment. I wonder whether they are a telephone service only? If so, they will not be able to help you completing the paperwork as such. I stand corrected if they have local offices which you can visit; but my instinct is that they are an advice line. The CAB have benefit specialists who you can attend upon in person and they can help you with the forms. The general way a CAB office works is that they have drop in centres. You don't need to make an appointment. You will initially meet with a 'Gateway Assesor', whose job it it to deal with the array of problems that people bring to the CAB on that particular day. The Assessor will help you as much as possible on the day, but will then, if appropriate, make an appointment for you to see an adviser. This may be within a week or so. If there are time limits on your paperwork from the DWP, it is possible to telephone the Benefits Agency and request an extension to enable you to take legal advice. I am aware of an organisation called 'Welfare Rights' whom the CAB frequently refer people to. I have not dealt with them personally, but my understanding is that they can arrange for representatives to attend medicals/ tribunals. It's often beneficial to defer benefits forms and queries to specialists so that they can sort them out. Since they deal with matters of this nature everyday, the paperwork is not daunting to them; and often it is important to get the language and tone of the wording correct. We see so many people lose points on their forms for simply using words such as 'coping' and 'managing.' If you are 'coping' it's not often thought that you have an incapacity to work(!) It's a minefield Gill - give the forms to someone else - you've had enough headaches this year and you don't need a metaphorical 'pain in the neck' too! Lynne

Hi Jo Welcome to BTG. We seem to have a few American cousins joining of late! It's nice to extend the group! I'm sorry you've been through the mill and acknowledge that your difficulties have been more challenging than most. I am certain we will learn a lot from you, especially in how to adapt to our new lives. Look forward to hearing more from you. Take care, Lynne

Hiya Jules, A very warm welcome. My goodness you've been through the mill. I've had a quick look at your website and will read it more carefully later; but you've battled through so much. James has kept a wonderful account; and isn't it superbly written! It's very impressive and I'm sure others have learnt a lot from it. I hope you're continuing to improve and look forward to hearing more from you. Lynne

My immune system has taken a bit of a beating this year. I've had 'man flu' on three occasions. I refuse to call it the common cold(!) My remedies were good old fashioned paracetamol and vitamin C, (which is what a Lemsip is, basically.) For comfort, I'd make my own drink, mixing a dollop of honey with boiling water, topped off with a massive wedge of lemon. I also find that moaning incessantly helps(!) On a more serious note, colds are miserable affairs even when a person is healthy. To have a cold post SAH really knocks you sideways because your foundation is weak to start with; so you undoubtedly feel the dip more. Hope you're better soon, Lynne

My goodness Kel! I'm so shocked by these stories. I can't believe that some of you are here to tell the tale. You've really defied the odds. I have no such horror story. I collapsed in a public place; the hairdressers! Paramedics arrived at the scene before the hairdresser put the receiver back in the cradle! Apparently an ambulance was around the corner. I was in A&E within minutes, diagnosed relatively quickly and then transferred to another hospital a few hours later. I can't imagine the pain and stress that some of you experienced when your SAH first happened. I always appreciated that the speed of my diagnosis was good, but I hadn't factored that it was not the norm! ..and Kel...you drove your car!!!!??? As Dizzee Rascal says, 'Bonkers!' Well done on your recovery and super human strength! L xx

I don't know what your present circumstances are, but I am assuming that you are presently off work. In such a case, you are able to claim statutory sick pay. Depending on your income and circumstances this can be topped up with Income Support. Millions of benefit money goes unclaimed every year because people don't know what they're entitled to- (the government don't bleat on about this!) I know I bang on about the C.A.B a lot(!!) but because I work there, I see the problems people face on welfare. If you listen to the government you would think we're all work shirkers and undeserving of our benefit money. The truth is, the vast majority are genuine cases and a lot under claim. There are people at the C.A.B who can give you a 'benefit check.' That means discussing your circumstances and advising you which benefits you're entitled to and even helping you with the paperwork. It's a free service and all offices have a drop in centre. Lynne

Thought I'd share with you how I'm approaching the work thing! I am a qualified Solicitor, having worked in private practice for over ten years. In the early months of recovery I tried to return to my old life but as the months unfolded I noticed I was not as assertive, my memory poor, concentration reduced; not to mention the fatigue and insomnia. I became depressed. I resigned in May. I have cognitive problems which would have made my job almost impossible; but even without that, I'm a different person now. Life is short and I don't wish to return to all that stress. In July, I commenced voluntary work at the C.A.B, two days per week. It has eased me into the working environment without pressure and I don't start work before 10.30 a.m because of my insomnia. Tomorrow I have an appointment with the Shaw Trust, a charity which helps people with disabilities, incapacities and health problems get back into work. I may consider voluntary work with them too. I'm probably ready for a third day now. It remains to be seen what work I will do but I like the idea of using my legal skills in the charity sector. One thing I've learned, albeit late in my recovery, is to become assertive about how I lead my life. Our recoveries are very individual. Even amongst us SAH sufferers, it has been possible for some of us to return to work within months, but not for others. This doesn't make some of us 'right' and others 'wrong.' There is no 'one size fits all' with recovery. I commenced voluntary work in my eighth month. This timescale was right for me. You may feel that you can return to work sooner or instead, you may want more time. It's all acceptable. ....but for now, I'd just rest a bit more, if I were you... Lynne