Lin-lin

Done! Lynne

How lovely to hear from you and thank you for your update, particularly during what is an emotionally challenging time for you. The signs of progress with Theresa appear to be evident already. I accept she is very weak and tired at present, but to be talkative and drinking tea so early on seems promising, (despite the tea reappearing!) It is good to learn that she has a room of her own. That hopefully will give the brain some added peace, which will be of help. How insightful of Theresa's husband to point out how, despite looking poorly, Theresa is in effect 'better' now than what she was before. I imagine some people here who have future procedures planned, may draw some comfort from those words. It is a constructive and positive way to look at the event, (and very clever!) Please pass on my best wishes to Theresa and I wish her the very best. She seems to have very good family around her and it is a support system she will find invaluable. Thanks again for the update, I had been thinking of Theresa and hoped that things had progressed well. Lynne xx

This is a timely one for me. My 2nd anni-versary is on the 21st November. I'm not a sentimental person, which I describe as a fault really. I am very non emotional about birthdays, Valentines and Christmas for example, but I wonder whether it is because I see such events in consumer terms which I dislike. I don't like the pressure there is on everyone to 'spend, spend, spend.' But I should see my anni-versary differently and Myra's post struck a chord and gave me an idea, (thanks Myra!) Maybe I should reserve the 21st November as an opportunity to do a good deed. The one that's in my mind at the moment is to clear my wardrobe and take some stuff to the local homeless shelter. Maybe I should do something 'good' every 21st November... Mmmm .. I quite like this idea! Lynne xx

Good luck for tomorrow. I do sympathise immensely with those who are aware of forthcoming procedures. I feel lucky that I knew of my coiling operation days after the event; otherwise I would have been very nervous. It is a natural human response to be anxious before such things. I know people who have had a craniotomy and were out of hospital before me, say after six days or so. Despite being coiled, I developed some problems with hydrocephalus and was kept in for five weeks. I guess this shows how individual our recoveries are. Coiling is traditionally a procedure one would expect a shorter physical healing, but in my case, I saw many patients who had technically more invasive surgery than me come and go at hospital. When we are stressed it is difficult to look for the positives and I for one can be quite annoyed when I am anxious and someone tries to encourage me to see the 'brighter side.' I can feel a little agitated that they are not feeling my pain properly! So when I say this, it is in the context of understanding that you are stressed about tomorrow and I am not minimising that. I just think that the recovery from a planned procedure is probably better than an emergency procedure where the brain has received dome damage from bleeding. The planned operation is to 'fix' as opposed to 'fixing and mending.' I would imagine that the brain is in a better position to heal with a planned operation and I hope your recovery is towards the shorter end of the scale. Maybe it will be nice if one of your family / friends could log on to BTG to let us know how things are going for you, because you are going to need to rest for a few weeks and writing on here may be challenging. But if you appoint a 'secretary' (!) it means we will know how you are getting along and we can also send you messages of support, which may give you a little boost!! Take great care, Lynne

Yes, heat affects me lots after my SAH. It's become a bit of a joke in the family because it has been noted how I am prone to flushes. (I am 36, so I am confident that it is not 'my age' which is the cause!) It is not uncommon for me to be standing outside on my patio in my dressing gown trying to cool down. And sometimes when I arrive at work I am perspiring lots, (very attractive!!) I sometimes wonder whether anxiety has something to do with it because I can sometimes get 'het up.' It's very uncomfortable and I have no memory of being like this prior to the SAH. I am sure that some of us here had this discussion a few months back and I think a few said that they feel the same. As to solutions, I haven't really got any. I suppose it's easier in my country where the temperature is cool, because I only have to open a door or window to allow cold air in, which reduces the discomfort. Not so easy in a hot climate - but there are some members here from hotter climes who may be able to help. Lynne

Congratulations Louise!!! You are a very valuable member of this site and your kindness is really uplifting. It's always lovely to 'see' you in the Green Room and I have always considered you very thoughtful and helpful. It's wonderful to be able to congratulate you on your amazing progress. Lynne xx

John hun, I very much understand your anxiety. It is very frustrating when people express shock at the pace our recoveries, especially the sentiment that the recovery should somehow be complete. Most of us here have 'incomplete recoveries' and we will never be the same again. I do become upset when people try to cross reference me with other people who have recovered from their illnesses, with the expectation that I should have recovered to the same extent. I know where you are coming from. I still remember the time when someone expressed shock that six months after my SAH that I had not returned to work... Two years on and I am still battling with that one. I get very frustrated with some of our newspapers, (Mail and Express being the biggest culprits,) with the way they talk about benefit claimants. Obviously I am sensitive to that one given my circumstances, but their reporting on such matters is factually inaccurate and I feel confident to say so because I work as a volunteer at the CAB. It is frustrating to read inaccurate articles in the press, particularly when we know how real life circumstances are different. And if someone tells you that the 'woman in the Mail' has recovered faster than you, just ask them if they believe everything they read in the newspapers.. Big hugs, L xx

The significant clue here is that you read this article in the Daily Fail, sorry Mail. It's a very right wing, reactionary paper and my only surprise is that the article doesn't seek to blame brain haemorrhages /strokes on asylum seekers or benefit claimants. It's a truly awful article, in an awful paper. Boycott it - reading such stuff will not help in lowering your blood pressure!!!! Lynne xx

!!!!!!!

Ah, your name is James. I called you Ian.... If I may blame that on the SAH, I would be most grateful(!) Will get 'a man' to look at my laptop later..(!) Thanks, Lynne

Hello! I am trying to complete this survey, however, when I click on the link, I immediately get signposted to a page which ‘thanks me for completing the survey’ and inviting me to buy some products so that I can complete my own survey (??!!!) I fully accept that I am doing something wrong, but because I possess a near to empty skills set where IT is concerned, I cannot work it out!!! Would someone be kind enough to provide me with another link to the survey, as I seem to have exhausted the two links which Ian has been kind enough to provide in his first post!!! It would be very convenient if I could blame this confusion on the SAH, but it would be wrong to do so. This kind of behaviour was also present in my pre brain injury self… (!) Thanks!!!

Thought I’d update you with my progress and my attempt to return to work. This thread may be of more use to people who have left their original place of work and are attempting to try something new. My previous employers could not offer me a phased return after my SAH and requested me back in less than six months. I did not have the emotional energy to disagree and I handed in my resignation and drew a line in the sand. I still think it was the best decision for me. Over the last fourteen months, I have been working as a volunteer at the Citizens Advice Bureau on Tuesdays and Fridays. In February 2011, I extended my responsibilities and began working Thursday mornings at the Shaw Trust too. I now feel able to progress further again and because I intend to sell my house (although not up for sale yet) and move in with my boyfriend who lives around 45 minutes away; I need to plan to move my voluntary work to where he lives, which is a rural area. I have approached Sure Start, which is a local authority project which basically helps vulnerable families in our communities. I hope that there will be better employment opportunities for me as the local authority, statistically, is a better employer of people with disabilities / health conditions. I also feel very passionate about issues such as child poverty, and although this is not exclusively the remit of Sure Start, it is a big part of it. I started my first day of training today. I have nine more weeks to go. The training is on Thursdays 9.30 am – 12.30 pm which makes it easier for me to attend. Unfortunately, I have had to stop my work at the Shaw Trust which is sad. The training venue is around 15 miles away, so my father gave me a lift there and back. This was wise, because I was anxious about starting, which obviously depletes energy levels. I took fruit and water with me to keep my energy levels topped up. (I will plan things a bit better next time and take flapjacks which are good ‘fuel food!’) The first day was enjoyable, but I have needed to sleep all afternoon. I was exhausted. Partly nervous energy, but the process of new venue / people / information took its toll too. I usually meet some friends on Thursdays, but I cancelled plans yesterday foreseeing that my first day was going to be tiring. I expect it will get easier. I think I have a better handle on my circumstances which I accept may be permanent in nature. I, of course, accept that improvements may be seen in the following years to come, but I do not think they will be revolutionary! I am ok with this. I believe I can have a fulfilling life as long as I chose what I do with my time wisely. I may not be able to do much as before, but if I make life choices that bring emotional rewards; despite doing less, I can still feel enriched. In basic terms, I think my brain is ‘inefficient’ in the way it uses energy. My brain seems to burn up too much mental energy in circumstances which others may not find stressful, but it leaves me unable to do as much as others. I value my health and mental well being enormously, and so have decided to find a life / work balance which my brain can cope with; rather than impose a way of life upon my brain which is not possible. I will be overjoyed to commence voluntary work for the Sure Start and it remains to be seen what the employment opportunities will be in the months to come. Lynne

Hello! I have sent you a private message because I think we have a mutual friend!! Welcome to BTG. Great to have you with us!! Lynne xx

I can’t really remember if I did anything on my annie day. I have a recollection that I had the flu around that time which more or less dealt with the issue. I’ve tried to look at previous posts to see what I was up to around that time, but I can only find posts about me moaning about my cold! (And I’m still doing the same this week – how depressing!) That said, just because the annie date is not a trigger for me, it does not mean that I don’t suffer any triggers at all, (I think Liz summed this up very well.) My triggers can be things like music, people, and places. This causes me more of a problem than a date in the calendar as they are things which can crop up un-expectantly and are always present. Maybe your anxiety is not only the date in the calendar, but the fact that the day seems to be mirroring the day of the SAH a bit too closely. I think it is very natural that you are feeling panicky. Something horrible happened to you last year and the anniversary of the day is following a similar routine which isn’t given you emotional respite. Is it possible to rearrange the day, so that the reminders of the day are not so acute? Is there a family member / friend who can accompany you on the school run to make the routine different? And if you are in the company of someone, why don’t you go off and do something nice after dropping the children off? As I don’t know you very well, I do not know the type of things you enjoy, but you could have a spa treat or elevenses at a nice coffee shop or a nice lunch somewhere? This will make the pattern of the day different and may help you celebrate the day instead of being anxious about it. We all have our triggers and the advantage of a trigger being the annie date is that you know it is coming and you can plan for it. It is not something that it going to catch you unawares. This means you can take control of the day. (And taking control reduces anxiety.) Lynne xx

Hi Sandi I think the first point which has to be made is how amazing you're doing. The motivation you have to improve your circumstances is laudable, but it is very important you remain true to your health and look after yourself too. The only person who can be the proper judge of this is you, but during our recoveries we can lose some insight, which makes decisions harder to reach! Speaking for myself, I can sometimes become trapped in ideas that ‘I must try harder.’ I can blame myself when I am tired and seem keen to ‘prove’ to other people that I am not lazy. I think many of us here have sometimes felt that we are ‘failures.’ We are nothing of the sort of course, but we try ever so hard to replicate the pre brain injury self and lose sight that the brain is a bit different now. 5 hour, three hour shifts per week is BIG. You are fabulous for giving it a go. I am really in awe of you. It is very inspirational. Is part of the problem that the Monday and Tuesday shifts are on consecutive days? Is it possible to work Monday, Wednesday and Friday for example? By splitting the week up like this, you may find that you can fulfill working 15 hours per week. But if you are working ten hours over two days, maybe you are not recovering adequately between shifts. Just an additional thought – are you perhaps doing too much on your rest days? Speaking for myself, I need my rest days to be as straightforward as possible. Busy environments fatigue me. If I rushed around on my days off work, it would make my days in work very difficult / impossible. In terms of my working week, Wednesday is one of my days off. It is also a ‘day off’ from all other things too. I don’t visit family / friends and they know not to visit me either! I use my Wednesdays to re-charge. No errands, no shopping; just a glorious day alone, pottering around and giving my brain ‘time out.’ It helps enormously. Use the brain fog as your friend. Your brain is trying to communicate with you and perhaps it is asking you to tweak your week so that things can be managed better. Maybe you don’t have to work less, but maybe it needs to be spread out differently. And I am not saying ‘don’t go shopping,’ but maybe you don’t have to go shopping in the working week. Of course, all this brain fog could be because the working arrangement is new and your brain hasn’t accepted the routine yet. Maybe a few weeks of it will seem better. However, you will probably help your brain more if you properly rested between working days and importantly; if you still feel this sluggish after a few weeks, maybe it is a sign that you need to make bigger readjustments. Cross that bridge if / when it arrives, but it is never a ‘failure’ to tweak your week to make you feel better. It’s just good common sense!! Hope you find a method that works well for you. Let us know how it goes as it’s great to hear about your progress. L xx

Don't feel that you are complaining, you are simply pointing out that a 50 mile round trip is difficult for you to manage. Being stressed is a tiring experience for us alone, I am not surprised that the journey to and from hospital is taking its toll too. Are there any family members / freinds who can assist with some journeys? L xx

The coincidence is startling. I am glad that he is chatting however and seems of himself. One thing is for sure, he will have an excellent counsellor in you. How fortunate he is, that he will be able to seek guidance from you as to his feelings. It is bound to help him. I daresay you will both develop a stronger understanding of one another given that your experiences have mirrored each other so much. I hope you're ok and that you're husband is as settled as possible. L xx

I wish someone would have given me this link in the early days:- http://www.headway.org.uk/home.aspx It’s a link to Headway, which Gill has already signposted you to. I stumbled around with my recovery for just over one year, blindly lurching from one confusing moment to another! It was a godsend when I was able to talk to people at Headway who had experienced something similar. I also avail myself of their counselling sessions with a consultant neuro psychologist, which has helped enormously. This Saturday, my boyfriend and I are going on a trip to a country park with Headway and we have made lovely friends there. When I left hospital, I wish someone would have told me that a SAH falls into the category of a ‘brain injury.’ Do not be alarmed by the phrase, it does rather conjour up an image which may be difficult to digest, but it just means that the brain has suffered a trauma and is healing. Although I have recovered well physically, and look ‘fine’, there are some hidden differences in my emotions, cognitive abilities and personality. I am by no means dysfunctional(!) but there are some differences in how I was before to how I am now. (Some aspects of my personality have improved, so change can be a positive thing!) The mistake I made in the first year was to try and fight every change in me. I now accept that I am a quieter person, that I do not like busy environments and I accept that I cannot deal with high levels of stress. It is important that the people looking after the person with a brain injury learn as much as possible about the condition, so that things are understood and worked with positively. My parents and boyfriend have made a huge effort to read up as much as possible on brain injury and as a consequence, they have provided me with a very strong circle of support which I can draw from always. In the next few months, you partner just needs a huge amount of rest, but do not confuse this with just physical rest, mental rest is important too. I.e. having lots of visitors, particularly surprise visits can be very tiring. Unfortunately, a lot of recovery is trial and error and we learn by our mistakes. The basic rule of thumb is; if it starts to feel uncomfortable – stop!!! Lynne

Oh Zoe, I am so sorry that you are going through such a horrible time. I guess the adage of a ‘brain injury happening to the family not just the person’ resonates particularly loud in your family’s circumstance. I sometimes look upon brain injury like a game of skittles, with the person who has had the brain injury being the bowling ball, knocking all other family members for six. I believe you completely when you say that you love Richard. You have a family with him and you have made very definite attempts to rehabilitate Richard’s new circumstances into yours and your children’s lives. You knew it would not be easy and you anticipated struggles. But as a mother, how far can you adapt when you feel that your children’s physical safety and emotional health is being compromised? On one hand, someone may suggest that a husband and wife have responsibilities to one another; but I firmly believe that as a parent, the overriding responsibility is to the children. It has to be, no matter how difficult this is for the adults. If I was in your situation, I would consider counselling, which can take different forms. Some people engage in relationship counselling in an attempt to stay together or to steer their relationship in the right direction. Others need counselling to help them separate in the most civil and constructive way possible. Perhaps you and Richard need to consider these options. ‘Relate’ is an organistion who can offer relationship counselling. I would imagine that you have heard of them, but many people do not know that Relate also help couples separate amicably. It is not just about trying to save relationships. However, there is another dimension in your circumstance because of Richard’s brain injury. Perhaps Headway will have some psychologists / counsellors who can either help with the task, or recommend a professional who can. Richard’s emotions have been disrupted massively with his brain injury. His emotional breaks may not be as finely tuned as before, thus making his ability to deal with emotive situations, like a separation, particularly difficult. His fuse may be shorter than before and his ability to be objective may be dented. Dealing with relationship breakdown is very hard for the majority of people at the best of times. But dealing with a separation when one party has suffered a serious brain injury, may bring an added complication. Will Richard be able to put the children first? Will it be possible to negotiate sensibly with him over financial matters? If I were you, I would not consider going through such steps without professional help. Going through a separation, even with counselling will be difficult, but with counselling, at least there will be others to help you along the way. I am well aware that your thoughts of separating have not been made in haste. This is evident in your asking BTG members for advice in how to save your relationship. But it is perhaps with qualified counsellors who can mediate between you and Richard who will be better placed to help you with the finer details of your decision. Maybe you could contact both Headway and Relate with your concerns. Explain that you need some relationship advice as a couple, be it to work things out or to ultimately separate; but it needs to be emphasised that one party has a serious brain injury which makes the process of separating a bit different to the run of the mill scenario. I am sure that at Headway and Relate, you will find some invaluable guidance. Lynne xx

I can relate to this enormously. Nearly every symptom which I quote as being a feature of my day to day living, someone will tell me that they are like that too; or alternatively that it is part of the aging process. I feel that it trivialises my experience. However, the ‘aging process’ in its proper sense, is something which happens slowly, gradually and organically over time. It creeps up on us. Our friends, work colleagues and family members grow old with us. We go through the natural stages with others. For us, it did not happen like that. In my particular circumstance, I was at the hairdressers, getting ready for a big night when I had my SAH. The weekend before, I was in London, socialising in Camden bars. Eight weeks prior, I ran the Berlin Marathon and had made plans with a friend to return to Berlin in the New Year. In four weeks time, I planned to go to back to London with my boyfriend. He did not know, but I had planned a weekend away for his birthday and I had arranged that we go to White Hart Lane to see Tottenham play. When I woke up three days later in hospital, my life was different and has still not recovered to its former pace. I did not make it to London that November and there was no New Years Eve Party. (Instead my parents came round to my house with a take-away and even that exhausted me!) My friends’ lives have continued. My boyfriend, who is fantastic, is nevertheless still able to have big nights out and weekends away. I have missed so many social events that I cannot remember how many, but it is a regular feature of my life to hear of my friends go on shopping trips, weekends away, hen parties, running weekends and for me not to accompany them. This is nothing like growing old in the natural sense because our peers are not experiencing the same. When people tell me that my SAH is ‘just like getting old,’ I explain that it is not. I say that it happened too suddenly for it to be measured in that way and that my present pace of life is an unnatural one for my age. I have not encountered a person who contradicts me when I put it in that way. (But perhaps that may have something to do with the very direct way I deliver it!!) L xx

Hi Neil, We haven’t chatted before. We live close to one another. I must apologise for not having greeted you earlier. Unfortunately, I have been in a bit of a trough of late and I have barely had enough energy for myself. Your account of life after SAH is precisely as I feel. I am receiving help from Headway where I receive group counselling from a neuro psychologist. Headway is a charity for people with brain injuries. A SAH leaves a brain injury, (which I did not know until around seven months ago,) and reading about brain injuries has helped me. I know exactly what you mean about self identity. I do not know who I am anymore, but am able to describe the old me very well. I previosuly believed that everything that I had achieved was through my own hard work and determination. Life is what you make it, blah, blah, blah.. (!!!) In hospital, I had the attitude that the SAH would not beat me. Consultants told me that what I had experienced was significant and that there may be emotional fall out. I did not believe them. They did not know how ‘strong and independent’ I was. I cannot explain why, but I have changed lots. I now dislike large crowds and avoid the centre of towns as much as I can. I struggle in the company of people who knew me before my SAH. Fortunately, I have a family and a boyfriend who are very supportive and I rely upon them lots. I can sometimes feel under confident and anxious. I feel like a diluted version of my former self and it often saddens me. My neuro psychologist encourages me to think how the SAH has brought some positives. I concede that there are some. I am far more empathic; I appreciate how much our circumstance and environments affect us; I shun materialism and shallowness and I am more understanding. In a lot of senses, I am a better person. This flatness that I feel of late is a recognised symptom of having a brain injury. It is quite ‘normal’ to be experiencing it. Just knowing that helps me and I hope it brings you a similar comfort. Lynne

Thank you for sharing your story choccibicci. I ran the full gamut of emotions reading it! Have you thought about hustling?! I bet you could make a small fortune!

This really helped me Jen, thanks for posting. I have not been around much recently, ironically due to feeling too tired!! It is more of a mental energy deficit than a physical one. I took up a four week sign language course recently and I think it was just above what I could really cope with, given my other commitments with voluntary work too. On reflection I think I used too many spoons!!* Lynne xx *Disclaimer:- For those who have not read the Spoon Theory in Jen's link, my spoon comment may have inadvertently made me look a little weird!

I echo John's sentiments. I found everyone's replies very helpful and it undoubtedly helps to know that the mental tiredness is a feature for us all who live with a brain injury. As long as I know it is ‘normal’ for us, I can accept it better. Thank you, Lynne

I have decided to pick up this thread because I am getting bouts of tiredness and find myself confused as to the reason why. I am undoubtedly able to do more in a particular day or week compared to when I came out of hospital and I am happy that I have moved on from that. Life is different to how it was, and in a way, I accept that. I do remember how busy life was, i.e. working full time and long hours, rarely taking holidays (so stupid in retrospect!), socialising frequently, not to mention the odd marathon here and there, to ‘relax!’ I am not happy that life has slowed to a snail’s pace in comparison, but I do accept it, albeit grudgingly some days. Why then, after a week, which cannot be described as busy in the slightest, have I had two unexplained days of wading through treacle? I call it my ‘satellite delay’ when I am a few seconds behind the pace of everyone else. This reminds me of the early days of recovery. Is it normal that it is still happening? My boyfriend noticed yesterday when talking to me that I was not quite ‘with it.’ I slept most of the afternoon and when I tried to wake up, it took a good 30 minutes of starring into space to focus. Today has been similar. I have managed a walk/ jog and so this is not a physical fatigue. This is purely a mental tiredness. Does anyone else suffer with this mental fatigue? I find myself in a paradox where I can exercise; but a mere conversation or being in the company of people can wipe me out. I am sure it is very difficult for friends and family to understand. On one hand I am capable of going for a walk/ jog; but must do so on my own, because ‘chatting’ whilst exercising would tire me. It seems that going for a walk is less taxing on my brain than inviting a friend round for coffee... Does anyone else know what I am talking about?