Lin-lin

Ha! Love the flag!

Hi I totally understand what you're going through. I'm presently experiencing the same and it frustrates me immensely. I'm finding recalling names difficult, even if I know them well. It's spontaneous events that test me the most. Since I'm still at the stage where I avoid people (!) maybe I'm not the best person to advise!! But I find in some situations that admitting a difficulty is easier. A lot of people are aware of what's happened to me and so I don't think it would be a massive shock to anyone that my memory may not be as sharp. Maybe we simply need to be more assertive about the situation instead of embarrassed. When we don't remember a name, we are not being rude or dismissive about the person; it's just that our brains have been through a lot and some little skills have been disrupted. Maybe this is something that we just have to live with. I don't know whether it's possible to improve our memories, but changing our attitude to its loss may be a help. I'm teaching myself to be proud of what I've retained. I know I'm not the same as before, but I don't strive to be either. The 'old me' had an easier life than the 'new me,' and so it's unfair to draw comparisons. Lynne

Shwmae! Nice to have a fellow Welsh person on board! I live in Skewen, Neath, just a short journey up the M4 from you! My SAH was on the 21st November 2009. I'm horrified by your initial misdiagnosis. To then have to travel to Bristol for an emergency operation! (Hope you didn't have to pay £5.50 on the bridge when you came back! Lol!) I'm guessing you were at Heath Hospital? I was there too. My consultant was Mr Nannapaneni. You are very early into your recovery. We all push ourselves too hard in the initial months. We try to slot exactly into our old lives because we don't know any different. As time goes by, you learn to adapt. Recovery from a SAH is very bewildering initially. Things which were easy before may become insurmountable. We may become depressed and tearful and grieve for our old lives. As for the insomnia. I could write a flippin' book on this!! I had to resort to sleeping tablets in the end, which helped but were no magic wand. It does get better, but that's hardly any consolation when you're counting sheep. (Although being Welsh, you would think counting sheep would be easier for us! Lol.) The best advice I can give you at present is to rest. It can be annoying to hear this and it can sometimes be difficult to accept that recovery is a long journey. Feeling tired is nature's way of getting us to slow down. The fatigue exists for a reason. I was very 'rage against the machine' when my SAH first happened, but I accept things a bit more now; and just have a nap if it all gets a bit too much! Let us know how you get on. There's a lot of support here. Lynne

With regards to the problems telephoning the CAB; I've heard other complaints of this nature... One way around it would be to attend the drop in centres. Some CAB's have these daily. You don't have to make an appointment and at least you'll see someone face to face. If necessary, they will arrange an appointment for you to see a specialist adviser who can look into matters for you.

There will be someone at your local Citizens Advice Bureau who can help you with this. It's a free service and they will look into it for you. Good luck, Lynne

Hey, great to have a nurse on board! I'm sure we'll keep you very busy here! I have a huge respect for ICU nurses; you really are something special. After experiencing ill health (first and only time with my SAH!) I now understand that physical recovery is only part of the process, because our emotions are important too. So much goes on 'inside' after SAH, but good health is often measured with physical milestones only. I found this site quite late in my recovery (around 6 months in.) I wish someone had told me about the site when I first left hospital because I felt quite isolated. I genuinely thought my fatigue and tiredness were 'failings' in me and many newbies to this site believe the same. Thanks for taking an interest in us 'mentaloids' (as Skippy calls us!) Ha! P.s Fantastic avatar, by the way!

Thanks for everyone who took the time to reply. As ever, it is always reassuring to contact others who understand. Louise, I didn't relaise you had a shunt, but I was aware that you had one John. You both speak so positively about your experiences. I came so close to having a shunt fitted and was in hospital for 5 weeks because of hydrocephalus, so it was of concern at the time. I'll phone my GP tomorrow, because the letter was sent to him too. Thanks again for all your help. L xx

Hi all, I have had a surprise letter from my Consultant today. I last saw him in July 2010 and it was pretty much assumed that it would be our last meeting. He said that for the sake of completeness I should undergo a further CT Scan, to assess, not so much the cause of the SAH, but the hydrocephalus I suffered after it. (I narrowly escaped having a shunt fitted by a matter of days.) Apparently, I continue to have 'dilated ventricles,' i.e. water on the brain. It's not improved since December 2009; (but conversely it means that it's not got any worse either.) Has anyone else had experience of this? I am assuming that the lack of urgency on the part of the hospital means that they are not overly worried about it. I haven't been given an appointment date as yet, so had it been a big deal, they surely would have called me in immediately(??) All this however, has reminded me of the infamous joke in the 1970s space drama, Blake's 7; about the best thing for water on the brain being a tap on the head! Oh for true life to be as simple! Lynne

Hi Maddi, Welcome to BTG. Our story's quite similar. I'm 35 and had my SAH in November 2009. I was fit and healthy too. I ran the Berlin Marathon eight weeks before falling ill!! Feeling tired and being forgetful is very common so don't place heavy demands upon yourself. You feel tired for a reason. It's your brain's way of making you slow down. It's all trial and error, however and you will get days when you push yourself too hard. You gradually become more adept at knowing what you can and can't do. It's often frustrating but we try to see humour in some things here! Looking forward to hearing more from you. Lynne xx

Another step which has helped me is not putting too much pressure on myself to slot back into my old life. I am a bit different to the 'old me' and so derive pleasure from different things. I used to love city breaks, shopping, clubs and bars; but I now dislike those things and so protect myself from upset by instead doing things that suit me better. Admittedly, some friends have dropped by the wayside, but I do not put pressure on myself to try and accommodate other people's views on what I should be doing. I have long ended the attempt to try and emulate my old life. I am not being defeatist in saying that I no longer try to be the old me. I strive every day to improve, especially where my stamina is concerned, because this makes life easier. But I don't look at returning to the 'old me' as a benchmark of where I should be. Instead I'm learning about what the new me likes. It reduces the pressure and takes away the sense of 'failing.' Recovery is a journey not a destination!!

Hi Welcome to BTG. I'm very sorry to learn of your loss. Look forward to hearing more from you very soon when you are ready. Take care Lynne

Aw Gill hunny. Sorry you are going through a bad time. With brain injury, recovery takes various stages. The first of which is the denial episode. I was in denial initially and I sensed you were too in the early days. Do you remember all the things you used to try and do, packing too much in the day? Over the months, I developed insight to my problems and grasped how much my life had changed, perhaps permanently, but certainly for a long time. It is natural and common for a brain injured person to become depressed as time progresses. With insight comes the realisation how much loss there has been, loss of mobility/skills/freedom and physical and emotional losses. Your depressed mood is a realistic reaction to the losses you have experienced. I understand from members of the medical profession, that depression in a brain injured person, (whilst alarming to the person,) is a positive sign of recovery. It's a sign that you are understanding and appreciating your problems. This recognition is vital for us to continue rehabilitating. When depression hit me Summer time it floored me massively. I am not predisposed to low moods and therefore had nothing to cross reference my feelings with. I was joyless, tearful, anxious and felt permanently sad, even in the company of lovely people. My depression is better these days, but I look upon it differently. Depression is a positive sign that I am improving. Understanding and accepting depression allows you to recover in a more positive way. You are going through an ordeal and you are entitled to feel down, cross, bitter, upset and angry. We shouldn't expect ourselves to bounce through this with a smile on our faces. People can sometimes say stupid things to us during recovery. How can you realistically forget about your op. (Why should you have to, anyway?) With regards to 'moving forwards' that is precisely what you are doing, each and every day; but you have got to move through this at your own pace. It's not fair for others to suggest a pace. People are so ignorant of ill health. People have told me to 'pull myself together,' 'start facing up to things,' and 'to think of those worse off than me.' It's all so ridiculous. I now only seek the counsel of those who are more empathic. Depression's the pits..... but you have moved onto a different stage of your recovery now, Gill. The low moods ease... it gets better. Keep us posted with how you feel day to day. We'll help you through it. Lynne xx

I agree with the inaccuracy of the 3-6 month timescale. I have no idea who came up with this in the first place, but I was told I'd be fine within 3-6 months, but I was not. In fact, it was a timescale which contributed towards my depression early Summer, because six months had passed and I was not the same. I misinterpreted this as a 'failure' on my part. I thought I was doing something wrong. We are entitled to take recovery at our own pace and it's vital that we do. My consultant says that recovery can take up to two years and even then I may not be exactly the same as before. Those around me simply have to accept that I can only recover at my rate and not in accordance with their expectations. I feel that I have become more assertive about this in recent months. I used to get neck pain too. I felt as if a muscle had been pulled, running from the neck to the top of the head. It felt like a tendon had been shortened and moving my head forward was over stretching it. The pain has gone now. Good luck with the appointment. Be sure to mention the neck pain. Lynne xx

Hi Ash I've developed a whole new perspective upon depression post SAH. When the doctors told me in the early stages of my recovery that depression was common amongst SAH survivors, I replied that it would not happen to me. Your Mother is experiencing a worse trauma than most survivors because her life has changed drastically. The only reason I didn't commence anti depressants is because I was able to visit friends and email people on this site; but your Mother can't do this, bless her. I'm no doctor, but I have no aversion to the concept of anti depressants. Having been through ill health, I am in favour of taking anything which makes the road to recovery easier. We take pills for headaches; why not for our emotions? I accept that an anti depressant is not a magic wand and it won't make everything in your Mother's life suddenly brilliant; but it may make her a fraction more resilient, which in turn may help recovery. It may give her that little boost to try and feed herself or to try and speak more. When we're at a low ebb it's hard to find the motivation to do anything and recovery can be impeded. Depression made me feel listless, tired and defeatist. The happier I became, the more I physically improved. Your concerns about anti depressants are totally understandable, but I hope speaking about it here helps. Lynne

Lovely to hear from you. The bit I liked reading the most is that your Mum is smiling and laughing. It is often said to be the best medicine!!! Take care of yourself, Lynne

Hello Erin and Welcome to BTG. It's great to finally hear from you, because we've all heard so much about you. I am so sorry that you have been through so much. You possess an amazing spirit and I am sure this will serve you well. You have a very intelligent handle on the event, despite the trauma it brought. It must be very difficult to be away from your family but how fortunate you are living close to home. That said, I am sure that being 'close to home' is no substitute to being at home. Recovery is often a frustrating process because we want to be well immediately; but the brain heals at its own rate and we must give it time to come round - it doesn't like being pushed! We often get tired which maybe is nature's way of telling us we are doing too much. Rest is an important part of recovery and one which is often over looked. Be easy on yourself and your brain will start to play ball again. I hope that next few days will bring improvements, but don't expect recovery to always be a steady climb upwards. There are sometimes setbacks and some days when things just seem the same. This is all normal. Often we don't see improvements in ourselves, but each day is a step in the right direction. Some days I'm happy to be facing the right direction, let alone stepping! Keep in touch. Look forward to getting to know you better. Lynne

Welcome Tracy. You're very early into recovery and I found being ill and not driving very frustrating. It gets better with time and I found life easier when I began accepting my new parameters instead of trying to slot exactly into my old life. It's a massive learning curve and there's peaks and troughs, but it's not impossible to get through. I found this site invaluable and it's helpful to discuss things with fellow sufferers. Some days are difficult, but that's not to say it's all bad. There is life post SAH! Be easy yourself and allow yourself time to come to terms with things. I wanted everything to be 'normal' immediately. That's a bit unrealistic and it's human nature to be depressed about ill health. Stay in touch and we'll help you through the next few months. Lynne

Welcome to the site! I often use the 'cricket bat' description! Talk about being hit for six!! My SAH was in November 2009. I look forward to hearing more from you and swapping stories. Join us in the Green Room tomorrow! Lynne

Thanks for the update. It's annoying when we get our hopes up about something only to suffer a setback. Recovery is often a journey, not a destination, and it's human nature to feel really peeved when another hurdle appears. I now allow myself to feel angry for a moment or two. (I used to be far too in control of my emotions, but I'm unsure whether this is always the correct approach.) These days, it's that 'fire in my belly' that allows me to progress and improve upon my situation. I appreciate that you and Erin may be disappointed with recent events, but you strike me as a couple who will use this disappointment to spur you on to the next stage. I wish you both well. Good luck for Thursday. I think it's fantastic that Erin will be online soon and communicating with us. She'll find a lot of support here. Send her my best wishes. Lynne

Hi! You are very early into recovery - well done for being able to use your computer so soon! Welcome to the club. As time goes on, you'll get to know us more and you'll see the things that preoccupy us from time to time. Sometimes we get a little frustrated and anxious, so we post a thread and receive lots of support from our cyber friends! Come and join us in the Green Room tomorrow! (It's probably a bit quiet this time of night, but is likely to be more lively in the day.) Take care Lynne

I echo what Ninja says regarding the CAB. I volunteer at the CAB and we regularly see this situation. There are usually specialist advisers available who can help you with the process of filling forms and appealing. It is even possible to request representation at the appeal itself. I used to work as a Solicitor, but resigned recently because I do not think I could cope with the demands of the job after my SAH. (My SAH was in November too, John.) Since personally experiencing the stress of the welfare benefits system; and after what I've seen clients go through at the CAB, I hope to work into the charity sector so that I can help people with their benefits problems. It's been a real eye opener for me and quite galling too when I think about the amount of tax I've paid to this country; not to mention the tax I will pay in the future. If I were you, I would not trouble myself anymore with trying to complete the paperwork or deal with the appeal myself. There are people in the CAB who are trained to do this kind of thing. Your local CAB should be listed online and have a drop in centre. Take care, Lynne

Glad things appear to be healing. Thinking of you. Hope more improvements will be witnessed over the next few weeks. Lynne

Hi Sam Welcome to the site. I'm glad you decided to get in touch. You will find a lot of support here. Yep - you're in the right place for insomnia, memory problems and cognitive difficulties! They're almost mandatory requirements for site members! Look forward to hearing more from you. Lynne

Thank you for your posts. It's really interesting to read them. My insomnia is reaching chronic proportions. I went to sleep yesterday gone 6 a.m. and my alarm went at 9 a.m. and I worked at the CAB all day. I was like a zombie when I returned home and had to go to bed immediately, waking at 9 p.m. It inevitably ruined my night's sleep. I took a sleeping tablet at 11 p.m. and it had no effect. I took a second one at 2 a.m. knowing full well that this is the wrong thing to do. If someone had offered to hit me over the head with a shovel to get me to sleep, I probably would have agreed! My DWP medical is coming up and I'm fearful of 'failing' because the doctor won't be able to see my insomnia; and I don't think it will be appreciated how debilitating sleep deprivation is. Sleep is such an important part of rejuvenation and for those of us in recovery and unable to sleep, we're losing a vital part of the healing process. I think I'm going to try hypnotherapy and also there's another friend who is really into health and vitamins. She has an autistic son who suffers with insomnia and it is possible control his sleeping with the right vitamins. Anything is worth a go! Failing that, there's always the shovel solution! Maybe I should ask Andi for help! Ha! Lynne

Thank you again for your comments. I'll make a note of that zopiclone, thanks Bluemoose. My insomnia has taken a turn for the worse this week. I wonder whether it's my heavy cold which has set me back? I've 'overly' rested this week i.e. cancelled work and haven't exercised, just to give my body a chance to recover. I'm worried about last night. Took Tamazepam before 11 p.m. and was wide awake by 6 a.m... I fear I've acclimatised to them. Will give them a miss for a few days. I hadn't considered my mattress being a problem. Good point, Karen. I cannot afford a new one at present, but will flip it over, to give it more life! I agree in keeping all my environmental factors conducive to sleeping, to try and help the situation. I'm hoping this week is a blip, made worse that I've been unwell. I can feel the distress of insomnia creeping up again. A friend of a friend, is a hypnotherapist and has offered to help. Has anyone had experience of this? Lynne