Lin-lin

Hello! Welcome to BTG. It is natural to feel afraid and unsure after a SAH. Like most of us here, the SAH is the first and only experience we have had of ill health, so there is no previous experience to cross reference and compare. As a consequence, it is unchartered territory and so it is understandable that we feel some trepidation. ‘The future’ is a very long path, with lots of twists and turns and so I have found it helpful to shorten my horizon. I tend to think about things in terms of ‘this week,’ or ‘this month,’ and try not to think too much beyond that. It makes projecting forward more manageable and realistic. Headaches are very common after a SAH. Very unpleasant to experience, I know, but it is a normal part of our recovery. We often forget how important rest is to our recoveries and mistakenly believe we are ‘doing nothing.’ Your brain has been through a massive ordeal, but it has ensured that you are still here and so maybe, your brain needs a little reward. Look upon rest as a holiday for your brain! Give your brain the ‘time out’ it needs. You have a milestone pending in around six weeks regarding the MRI, so up until then, why not say thank you to your brain and prevent it from becoming unnecessarily stressed. Take things very easy with lots of rest, because your brain needs it, even if you don’t want it! Even professional athletes orgainse rest days into their schedules, because they know the body will ultimately function better if they allow it to heal. You don’t need to push yourself at this stage in your recovery. There will come a time when it will be healthy for you to try and progress, but the timing of that is not quite yet. I look forward to chatting with you again and hearing how much rest you’ve had! Lynne

Yes of course, hun. Thanks for you kind words. L xx

I can relate to this thread, but I have undoubtedly improved lots since the early days. More importantly, I am relaxed about it and accept the slight differences in me as part and parcel of who I am now. I may improve further, but I am ok if I do not. I am presently engaged in two voluntary work placements. I work at the Citizens Advice Bureau offering free legal help at a drop in centre. I find this job manageable because it is familiar (and easier) to the job I used to do. However, I sense that some of the managers treat me as a (healthy) qualified lawyer and they can inadvertently explain things as a pitch which is slightly out of reach. (And my goodness they speak quickly!!) I used to feel ashamed of this and just smile and nod my head. I feel more confident to say now that they need to explain things differently. I also work at an office which helps disabled people get back into employment. They have taken me on knowing I have a brain injury and understand brain injuries. They are teaching me reception work. It should be easy for me, but the tasks are new and I do not find it straightforward. I am not embarrassed about this. I am given short and succinct instructions and given time to master them before moving on to something else. They insist I have regular breaks saying my brain needs ‘time off.’ I work alongside many disabled people. Some of my work colleagues are wheelchair users, others are deaf, some are blind, not to mention countless people with hidden disabilities. They have taught me about equality of outcome and how this involves treating people differently sometimes. This is not about treating people better nor is it positive discrimination. It simply acknowledges that if everyone is treated exactly the same, some people get left behind. My brain works a bit differently to before. I can’t retain information as quickly, crowds tire me, my memory is poorer and the pace of my life needs to be slower. But all this is ok. I’m not stupid and my intellectual capacity is the same. Things are just a bit different. I feel empowered when I tell people I have a brain injury. I look upon it as a measure of what I can achieve despite the SAH. There’s no point in me pretending that everything’s going to be exactly the same as before and ‘putting it behind me’ as JayKay’s friend suggested!! (Aren’t people just full of helpful advice!!!) If people treat me as I was before the SAH and if I try to emulate all aspects of my life before the SAH, I am not going to cope and I will feel depressed. ‘Putting it behind me,’ will not help. Harnessing the experience of the SAH in a positive way will help me improve. Facing up to things is healthy. Sweeping things under the carpet is not, and problems do not go away in doing that. I am not going to put the SAH behind me. It is going to be the very thing which drives me forward to achieving a better life than what I had before the SAH. A previous work colleague told me at her retirement party that you ‘can always play a new tune on an old fiddle!’ I intend to follow the advice! Lynne

I seem to remember some discussion a few months ago regarding how yoga is not recommended for SAH survivors. I am presently reviewing my fitness ‘routine.’ I joined a gym a few months ago for no other reason other than I have always been a member of one and I wanted to get back to the person I was. However, my return to the gym is not as successful as I hoped. I find the crowds overwhelming and if someone starts chatting to me, it leaves me too mentally exhausted to train properly. I am easily irritated by the noise and music and the experience of attending is becoming unpleasant. This is supposed to be a hobby and I see no benefit in sticking with an arrangement just because I used to like it before my SAH. The fact is I do not like it now. In order to adapt, I have purchased a series of fitness DVDs and I am really enjoying them. I can exercise at my own pace, how I want and when I want. Not having to travel to and from a gym is a godsend too. One of my DVDs is a yoga one. I seem to remember a discussion a few months back that yoga is not recommended for us. (Was it Ern and Louise whom I had this discussion with?) Can anyone shine some light on this? I don’t want to end up in casualty locked in my ‘downward facing dog’ position!

I had my first follow up around four months after my SAH. I too was told at hospital that I would be invited to an appointment after six weeks and having to wait longer made me anxious. The appointment itself was a simple chat about how I felt I was progressing. We discussed my fatigue and insomnia and I was reassured that this was normal. I was told at this appointment that I should undergo a CT scan. This was not to do with the SAH per se, but rather to assess the damage caused by the hydrocephalus after my SAH. Looking back, I can understand how my follow up appointment took so long to arrange. The recovery journey is unfortunately long and the doctors know this. Had my doctor seen me at the six week mark, I am unsure what progress could have been made. I was still very ill. It is unfortunate how a lot of us experience conflicting emotions whilst recovering, but we are not warned of this at hospital. Maybe doctors are reluctant to tell us, because I guess it is not guaranteed that we will feel down, but from chatting with people on this forum and at Headway, I understand that it is more common than not. I have found chatting with people on this site and meeting people at Headway an important part of my emotional recovery. It is reassuring to hear how another person is experiencing or has experienced the same. You are incredibly early into recovery, although to you it probably feels like a long time. I am 14 months in and if I could do things differently, I would have taken the first six months easier and not put too much pressure upon myself. Another thing I should have done is contact Headway sooner. I approached them in December 2010 and it is a shame that I did not find them in the summer when I was really struggling. Your brain needs time to recover form its ordeal and the only way it can do this is if you give it lots of breaks and take the pressure off. Every time you are feeling anxious or emotional, remember that it is your brain’s way in asking you slow down. Use it as friendly advice from your brain; try not to rage against it. (The brain usually wins so it’s a losing battle anyway!) Try to rest as much as possible in the next week or so. Don’t look upon this as ‘doing nothing.’ Instead, you are building a strong foundation to build your recovery. Chat soon, Lynne xx

Aw Zoe, I am truly very very sorry to read that you are experiencing a lot of stress at the moment. It seems to me that the situation is one which you need to take advice upon from professionals. I understand you want to fulfil your obligations in caring for your husband; and you have shown tremendous courage with this. However, you also have an overriding obligation to your children. You mention that a social worker is involved. I am guessing you mean Richard's social worker? If I were you, I would share the situation with him/her so you can receive help and put the necessary protection in place. I accept that Richard has been through more than what most people could bear and if my life had changed as much as his, I know that I would take it out on those close to me. In acknowledging all this however, your children need to live in an environment which nurtures them positively. If you are struggling in balancing this, there are professionals, i.e. social services who can help. Consider telephoning the social worker tomorrow and ask him/her how you best manage living arrangements. They are likely to offer solutions. As a minimum, I would imagine they speak to Richard about matters. He may need specific counselling regarding the impact of his behaviour upon his children. I hope you receive the help you need very soon. Lynne

Viva la revolucion!!!!! or in other words, 'walk like an Egyptian!!!!!' Lynne xx

I think this thread demonstrates how lucky we are to have a National Health Service. I cannot imagine having to balance health care against cost. Those of us who have free access to health care need to be reminded how lucky we are; because we can all sometimes take things for granted. I watched Michael Moore's 'Sicko' a few years ago and I did not realise how badly some families suffer under the American system. For my part, I will do everything I can to defend our NHS, particularly in this climate. Carolyn, I am appalled that Americans cannot have free health care. There are some industries were profit should not feature - and health is one of them. Lynne xx

Aw, Caroline. I am very sorry that you have had a traumatic time. I have not heard of neurocardiogenic syncope before. I am sorry that you are dealing with another condition on top of the SAH. I was struck with how positive you sounded at the end of your thread. I wonder whether the SAH has equipped you with an attitude which means you can deal with things courageously. It would make sense. You are probably drawing from your SAH experience and are able to apply the same coping mechanisms to deal with the new condition. It takes time to adapt, but I do think it brings a more positive outlook. I experienced financial difficulties in the summer, (as do most sick/ disabled people. Isn’t that wrong?) and it did not occur to me to ask my family for help. They were very upset when they discovered that I was going some weeks without buying food and it does seem odd to me now that I did not turn to them sooner. This didn’t happen overnight. I had to reach a crisis before I learnt to reach out; and when I did, it didn’t seem that bad. Maybe you have reached your crisis, meaning that turning to family and friends seems more natural to you now. The world can seem a less scary place if we let people help us. No man is an island and thanks for sharing. Lynne xx

Karen I am sorry you are feeling rotten. It really is a horrible feeling and I hope you find some way of dealing with it. I will share with you what worked for me, but we are all different, so my method will not suit everyone. If like me, you have suffered a reactive depression after SAH, (as opposed to clinical,) then this can mean that changing some environmental factors around you can assist. I do accept that it is difficult to find motivation when you are depressed. In view of this, try introducing very small changes, because it is easier to cope with this. (We will leave the revolutions to the Tunisians and Egyptians, for now at least!) For me, I struggled a lot with isolation. My friends’ lives have carried on and I accept that my pace of life is too slow for them now. It is difficult to hear of their nights out, city breaks and holidays. It is difficult not to contrast your own life with others and to feel that life is leaving you behind. The way I see it; is that my life as it was, has changed, but that does not mean that I don’t have a future. I’ve just got to work out the route. When I look back at how things were before my SAH, it is not the case that every aspect of my life was brilliant. I had good days and bad days even then. It is tempting to view the past in an ideal way and forget the bad days and the things about our lives that probably needed to change. My SAH has given me a blank canvass. It is a hell of a shock and it is tempting to view it as an impossible situation, but I am now starting to paint a new landscape. I joined a local Headway group and I am making friends with people who have suffered more extreme life changing events than mine and I am learning from them. I have commenced voluntary work at the CAB and Shaw Trust. I am making new friends there too. Through my voluntary work, I help lots of people whose situations are worse than mine and it has given me a perspective on my own life. I didn’t suddenly start doing all these new things overnight. It is a process which has taken around eight months and the journey is not over yet! Interacting with people can have a positive effect upon depression, but the difficult thing about depression, is that it can hold you back from being proactive. I found a way around this, which was to introduce very gradual changes. As a starting point, why not consider joining a local Headway? I have counselling sessions at mine and they are very helpful. Hope you are better soon. Lynne

When people ask me whether I’m ‘back to normal,’ this is not possible because of (amongst other things,) environmental factors. I have lost my career and any future job will not be on the same basis and so this will contribute to me being different. I have not retained friends and whilst I am in the process of making new friends; this will also contribute to a different life. Even if I were to recover emotionally to the tune of 100%, there are very different circumstances around me and so I cannot be exactly the same. In the same way that University changed me, my divorce changed me and changing a job changed me; my SAH will change me. But change is not always bad. It can mean that you’ve developed. My SAH has brought emotional and psychological problems but even if I recover healthily with regard to this; the experience will change me. Already I have a greater awareness of mental health issues and I am far more empathic. I strive to carry these traits though life and I use this as an example of how change can be a good thing. I do feel that my present emotional state is like driving a new car. I may reach for what I think are the indicators, but am surprised to find that the wipers come on. My emotions can be unpredictable. I react differently to situations and often I don’t understand it. I don’t fight this any more. I am allowing myself to grow into the situation. I don’t force myself to behave as I used to behave. My life experience means I am a different person now; so I cannot always cross reference with the person I was. The old me had life too easy; and often, a person doesn’t acquire nice traits through not experiencing adversity. I think back at how I used to think and shudder. I was ignorant about lots of things. I am sorry that you are having a bad spell at the moment. I have not had a good week myself and will probably need to take time off work next week to re-charge. It is important to identify the indicators that things are not well; but taking control of the situation helps. Do you have a local Headway? I have found them brilliant and it’s basically like BTG, but in person. I hope next week is better for you. Lynne

Well, I never knew that Sharon Stone had a stroke a few years ago. Blimey. Is her Brain Injury the reason she forgot to put her knickers on in Basic Instinct?(!)

It depends whether you are on income based ESA or contribution based ESA. The benefit agency will tell you which benefit you’re on if you don’t know. Income based ESA will automatically passport you to free dental treatment, but contribution based ESA will not. It is an absurd distinction, because they pay the same amount. However, if you are on contribution based ESA, it is possible to complete a form and apply to be reimbursed. The dental practice will have the relevant forms with them. Lynne xx

This has been a very interesting thread. For my part, I do not feel that I have an option other than to tell people I have a brain injury, although fat lot of good it does me sometimes! I will share with you an incident which happened to me tonight at a meeting, as an example of how infuriating living with a brain injury can be. Since January, I have worked very hard to maintain attending the meetings. (It’s to do with politics, so I won’t bore you with the details!) It has been very difficult for me to try and sustain the extra evening out, but I mange, just. People at the meetings often expect me to involve myself in local issues, over and above a limit which is comfortable. I always refuse and try to explain my situation. Tonight, a person at the meeting told me to do something this weekend, instead of asking me. I have noticed that this person has misunderstood my pace before, and so my emotions were in ‘last straw’ territory tonight. Outwardly, I remained passive and just listened. Inwardly, I felt a massive panic. I knew that what was expected of me was too much, and additionally, I was trying to process the spontaneous nature of the request. I simply cannot cope with being ‘shocked’ in this way. I need time to ‘come round’ to an idea. I walked away from the meeting very upset, as is typical when a person feels out of control of events. When situations like this happen, there can be a tendency to blame ourselves. I have run through a lot of emotions tonight. I have blamed myself for my ‘weakness’ and my ‘inability’ to cope. I can also develop anger towards others and ‘blame’ them for what I perceive as their unfairness towards me. My boyfriend has helped me to see the matter clearer. He views it as a miscommunication, with neither me, nor the other party having done anything wrong. The other person at the meeting and I, are simply not understanding one another. I am confident that I can resolve this and I know that the other person at the meeting genuinely has no comprehension of what my life is like. But it is so exhausting banging the same drum, over and over again. As for quantifying the percentage of my recovery; I do not look at it mathematically. To give a figure which is below 100% implies that something is deficient and not ‘whole.’ That’s all I can say, is that I try 100%. It is for this reason that I feel upset when people demand more, because I am giving it my all already. I feel like that game, Buckaroo. Bit by bit, things get placed upon me, but then if the pressure is too much, the slightest thing can make me buck and I throw everything off! I guess this shows I need to manage people better. I can’t change, but they can, so I guess the onus is on them! Otherwise, I’m going to ‘buck’ off!! Lynne

I’ve ordered one of those cards. It will be my ‘get out of jail free’ card for every future social faux pas. “Sorry I punched you in the face, but I have a brain injury…..” (JOKE!!) Lynne

Here is the link for Headway. It is a charity which helps people with brain injuries. Check on the website to see what they offer you locally. http://www.headway.org.uk/home.aspx I go to my Headway sessions twice a month. We meet at a local hall and it’s nice to spend time with people who understand what living with a brain injury is like. It’s basically like Behind The Gray but in person! Headway is not limited to SAH / stroke survivors. It includes people who have suffered accidents, meningitis, hydrocephalus etc. Despite how the brain injury is sustained, you learn at Headway how all brain injuries have a common theme. Once a month a neuro psychologist visits us for group sessions. I have found these invaluable. Lynne

The short answer to your question is that I have not recovered 100%. These are my daily challenges:- Physical I used to be a marathon runner and train with an ex marine in the gym. I now jog at a pace that walkers overtake me(!) My ‘weight training’ includes a home DVD and I use two baked bean tins as dumbbells! (Thank god I have a sense of humour.) I suffer with insomnia, which can be chronic. Blood pressure can be high. Emotional/ Mental My personality has changed, making it difficult for me to retain friendships with those who knew me before my SAH. I don’t like busy, loud environments and I need to be accompanied if I do visit such places. My parents have to organise all appointments on my behalf because I get into a muddle and/or become stressed when trying to plan things. The slightest change to my routine can throw me into a panic. I need to know in advance how the week ahead is going to pan out and I don’t cope well if plans change. I don’t like spontaneous arrangements. I have a poor memory and carry a diary with me always. Contributing to social groups is difficult because I can’t guarantee that I am going to remember what I am talking about and I can ‘digress.’ This has affected my confidence. Psychological The changes to my physical health and emotional/ mental health have been difficult to cope with. I am seeing a Neuro Psychologist to help me deal with events. People can’t see these problems, but I know they exist because I feel them. I no longer tell people that I am recovering from a SAH. This implies to people that I will somehow get better some day and they have a false expectation of my abilities. I now tell people that I have a permanent brain injury. I feel that this reinforces to people that they need to be mindful of what I can or cannot do and that it is always going to be this way. I am slowly becoming proud of my brain injury. Whilst it makes life very difficult, on occasions, I look upon how I am adapting and coping and see it as an achievement. It is important that we are assertive about our brain injuries, because people will force their own social patterns upon us otherwise. It is tiring to continuously have to tell some people what you can or can’t do; but the alternative is to go along with what others think we can do, and that is no longer an option for me. Regarding the doctor that assessed you as having ‘no problems,’ was s/he anything to do with benefits? Lynne

Jen! Those photos are absolutely amazing! You have a real talent and it would be such a waste if you didn't try to explore your options within photography. I've never seen such unique baby photographs before. I have only seen 'posed' ones. Your photographs are so natural and exciting to look at. Oh Jen, what a fab idea! Let me know how it goes! Lynne xx

Thank you so much Jen. I think five hours over two successive days is a lot. If you are like me, you may struggle with not having a day in between to rest. If I don’t have this, I feel mentally crowded. It is as if there is too much going on in my head. There may be another way to tackle this. I understand your fears about staying at home and how you may lose the social and emotional benefits of being in a routine. I know that it is tempting to go back to the type of work that is familiar to us, but if this is making us unwell, then it may be possible to approach things differently. If I was unable to do the voluntary work that I presently do; I believe that there would be alternatives for me. My own personal options would be to volunteer at the local library or perhaps help out at Headway. Even if you offered your services for one hour a week; it would be an invaluable hour for a charity or public service, and may be invaluable for your emotional health. If the work you have previously tried doesn’t quite work for you, there may be other options. Remember, there is more than one way to skin a cat!

Kel, thank you so much. I frequently think of your return to work and it exhausts me to think about it! You are so supportive to those of us who have had a slower return to work and your words are always comforting.

Thanks Vivien. The Shaw Trust couldn’t be more ideal. Their offices are even within walking distance of my house, which makes matters a lot easier.

Thank you for your kind words.

Thank you, Anne. It’s very encouraging to hear your opinion of the Shaw Trust and you are right about their ethos. They seemed to know more about how to deal with my brain injury than me!

Thank you for your kind words Michelle. I feel very passionately about the predicaments that I see my clients in at the CAB and I am sure that it will be the same at the Shaw Trust. I hate the unfairness people suffer through ill health, and feel very fortunate to be given an opportunity to work within the charity sector.

Shwmae! Thanks for your encouragement. I can totally understand your anxiety about returning to work but I hope matters proceed as smoothly as possible. I appreciate why you are worried about your work environment, particular if it is stressful and I can totally understand that you are keen to avoid feeling pressure. For my part, I don’t believe that I possess the mechanisms to deal with stress in the same way as before. It is as if my responses are very close to the surface and it takes a lot less for me to react. It is a good thing that you have identified that your employers need to be supportive in word and deed. Keep an eye on them and look after yourself in the same way that you would look after a friend or relative.