Lin-lin

I welled up reading the bit about Jim being word perfect. It really got to me! Ah such a lovely post to read. Congratulations both! L xx

Hello and welcome to BTG. My SAH was in November 2009 and a coil was placed in the location of the bleed. I had my first child in August 2012. My son is nineteen months old now. My SAH Consultant advised my Obstetrician that I could give birth naturally but the main issue overlooked was fatigue. I did try explaining, but found it difficult to get my point across. A residual effect of my SAH is mental fatigue. I become tired quicker than most, particularly if there is lots of activity around. Also, pain is fatiguing and as all of us Mums know, childbirth is a tad uncomfortable! I was fatigued prior to my labour becoming established and as a consequence my pushing was non- existent. It was always planned that I have an epidural to rest me as much as possible during the birth, but I was totally spent before I had the epidural. My labour lasted for around 21-22 hours and I could barely speak by the time they got the forceps out. (Wince.) After the birth, I was exhausted. I was, and still am, well supported by my partner, parents and in-laws. At present, I can go around two hours on my own looking after my son, but I need daily support. For the first 12 months after the birth, any time spent alone with my son was seldom. I was very weak. (I also developed severe anxiety which didn’t help matters at all.) I don’t think my age helps with my situation either! I will be 39 in June and I do believe that this issue adds to my difficulties. I am often asked if I will have more children. For me, I have important considerations to make. I was very fatigued during my pregnancy and for a long time afterwards. This was all worth it to be a Mum, but as I am a Mum now, it would further compromise my ability to look after my son. Additionally, I have to consider those who support me. My parents are in their 60s. In five years’ time, my mother will be 70 and so I have to think about the demand upon them. If I were younger, perhaps I would consider it. I would probably wait for my son to be in school however because I cannot imagine having two pre-schoolers at home! Even though I am well supported by family, if there was a next time, I would contact Home Start and Sure Start (UK organisations) and put a rota of support in place and also consider getting a post birth doula to help in the initial months. This would be in addition to the support I have with family, because I think having two children to look after –and look after me - would be too much for some family members to cope with. My partner and I have tentatively discussed what would happen if we had a second child. We have discussed that he would take six months off work after the birth (he is self-employed) and we would financially plan for this event using our savings. Another thing that I would consider a second time round is a c-section. The midwives present at the birth confirmed that they would support my request because they could see how much I struggled. It took me many months to recover from the birth, best part of 18 months if I am honest. Although a c-section is major surgery; the exhaustion of labour had a very detrimental effect on me in the months that followed. This is my account however and others have fared better. There is a girl here called Jess who had two boys after her SAH; both natural deliveries. I’m sure she’ll share with you her story to give you an idea of how much better things can be. If you really want a baby, consider the practicalities after the birth and if you feel satisfied with that, attend upon your GP so that s/he can liaise with your Consultant. I had an appointment with my Consultant prior to trying to conceive, just to discuss my health. He was very supportive and said a SAH was no bar to pregnancy – but maybe because he’s man – made childbirth sound an absolute breeze! Good luck with everything. My heart goes out to you having a nasah after the birth. Hope to chat again and *hugs*. Lynne xx

Victoria - Ha! Please don't worry, I found your post funny! I'm well aware of the chance of bruising, which is more likely when the patient is under. I daresay the dentist can give it more welly when the patient is asleep! You didn't put your foot in it at all! Win - Hello and hugs. L xx

Hello Paul and Victoria and thank you for your replies. My procedure did not go ahead on the 21st. I developed a cold (more like man flu, really!) and the dentist was very reluctant to proceed. It made sense not to, after all, it would have been a lot for my body to recover from surgery, general anesthetic and a cold. Given that the tooth isn't hurting me, it seemed more appropriate to reschedule. It's likely to take place in April now. Victoria - I will be thinking of you on Monday! I find trips to the dentist very tiring post SAH so I hope you'll have opportunity to rest afterwards. (I used to fit appointments in my lunch hour!? How on earth I managed that, I don't know!) Paul - thanks as always for your hugs and cuddles, they always cheer me up! I asked my dentist about sedation, but because my anxiety is at such a high level, sedation may not work. My dentist said he doesn't want me 'thrashing about!' Will let you all know how I get on after my procedure. L xx

I too went through what I now call my ‘Greta Garbo phase,’ i.e. “I vant to be alone!” (Imagine me dramatically collapsing on a chaise longue while saying it.) I became very insular after my SAH and it was in stark contrast to the social butterfly that I once was. I was simply happier being left to my own devices and did not feel that I needed company in the same way as before. After a period of around 12 months, my mood was not great and I stumbled across a local Headway group on the internet and learnt that they met up twice a month at a local hall. I was intrigued to meet people who had experienced something similar to me. It’s a bit like BTG, but in person! I was mindful that limiting contact and denying myself friendships was possibly amplify feelings of depression. It was something that needed to be addressed. I ended up going along to one of their meetings and have been a faithful member since 2010. The right type of contact, with the right type of people has had a positive effect on my mood and recovery. I find it easier to socialise at Headway because our experiences are shared. No one questions my fatigue, simply accepting what I can or can’t do. Also, people understand why I don’t always maintain contact, because they too have times when they need to retreat. There is a lot of mutual respect about another’s needs. I’ve never come from a Headway meeting feeling worse, only better. I have group therapy at Headway which has been invaluable. I recall one discussion about how insular some of us had become after the SAH and the psychologist present was correct to point out that repeated distancing ourselves from people was not good for our well- being. This does not mean that we have to force ourselves to be sociable when we do not want to; but contact with others can be meaningful for us if we choose the correct people to be around when we feel up to it. In an attempt to leave you with a silver lining – the money I saved on texts and phone calls in my first year was phenomenal! Although on a serious note, we humans are social creatures. Maybe you don’t feel comfortable with how you used to socialise and with whom, but it does not mean that there isn’t a new way to do it and perhaps with new people. My relationship with my parents is now better than what it was before my SAH, although we did go through a difficult patch after the SAH. I felt they wanted to molly coddle me too much whereas I wanted to reinstate my independence. I’m a Mother myself now and can see things from their perspective. I can’t imagine going through what they went through when I was first ill, and if it was my little boy, I would be wrapping him up in the proverbial cotton wool. Explain to your parents that you’re struggling with company and that this is a common symptom of a brain injury. There are many books on the internet about brain injury recovery which you and your parents may find helpful. When my parents and I started educating ourselves about brain injury, things started to make a lot more sense and we re-built our relationship in a way that we could all cope with.

Amazing Win! I'm so proud of you! Thanks for sharing. L xx

Thanks for your replies. Win and Jess – you are very brave ladies! Having a tooth out awake is way beyond what I could cope with. My mother had a tooth out with just local anaesthetic and I’m utterly amazed that people can do that! That said, I see from Mary and Wem that I’m not alone with hating appointments at the dentist! I am like Wem in that I had anxiety re the dentist before my SAH- but it’s skyrocketed after the SAH. Re your future tooth extraction Wem, can you request sedation and emphasise your anxiety as being the reason? I hope it all pans out well for you. Thank you Iola for your reply. It was comforting to hear that root canal is worse because I’ve had that and survived! I do foresee that this is a procedure that I’m likely to look back on and think that it wasn’t that bad, after all, I will be asleep for the duration. I’m glad I’m having general anaesthetic as I don’t think I could walk into the hospital otherwise; but Win is correct in saying that the recovery under it will be worse than with local anaesthetic. I am prepared to take the hit however, because my emotional state before the procedure will be heightened if I undergo the procedure awake. Thanks again for replying, they were all helpful.

Anyone had a wisdom tooth extraction post SAH? I’ve had a date for mine – 21st February and to say that I’m dreading it is an understatement. I was diagnosed with anxiety last April and so it is advised that I have my procedure under general anaesthetic, despite the extraction being quite easy. I am anticipating that the general anaesthetic will aggravate my issues with fatigue, plus the healing of the wound itself is likely to exacerbate fatigue. My family are already putting a plan in place regarding childcare, so I have plenty of help on hand. People assume that given my medical history that having a tooth out is something I will be fine with, but it’s really not. I even hate check -ups, so having a tooth out is way out of my comfort zone. Plus, not looking forward to my cheeks resembling Marlon Brando’s in the Godfather for a few days afterwards either. Unfortunately, my dentist has also made me an offer I can’t refuse; either have the tooth out, or face agony in a few months. Anyone else hate going to the dentist as much as me? I can’t help think I’m losing some perspective, but it’s going to take more than ‘tree pose’ during yoga to keep my mind balanced over this one! L xx

Hello! I feel somewhat ‘qualified’ to continue the conversations in this thread. I believe if BTG were handing our prizes for ‘Most Anxious of 2013’, I probably would be one of the front runners for an award! By way of background, people with brain injuries are more likely than the general population to develop anxiety. When you say that you convince yourself that you’ve a new disease every day, this is called ‘catastrophic thinking.’ Personally, this way of thinking became out of control for me after my son was born in 2012. (Incidentally, my SAH was in 2009.) No matter what was happening around me, I would twist it to the worst case scenario. If someone was carrying a knife, I’d imagine them falling and plunging the knife into my baby. If they were holding a cup of tea, I imagined them scolding him with boiling water. If I was carrying him downstairs, I’d imagine us falling and him sustaining an awful injury. These images were continuous and I had very little respite from them. I saw my GP and arranged counselling. I learnt about catastrophic thinking –which is about always obsessing about the worst case scenario. Fortunately, it is possible to disrupt this thinking process. One way of doing that is to manage the thoughts, not try to put them out of your mind and discount them. The thought needs to be confronted, a bit like standing up to the school bully! We can interrupt catastrophic thinking by what is called ‘reality checking.’ For example, if I saw someone holding a knife, I would note that whoever was holding the knife was a very careful, responsible person and they were deliberately standing away from my son. The chance of injury was zero. I would also voice my catastrophic thinking to people I trusted and the mere utterance of the fear sounded so incredulous when I said it, that it would help make my thoughts more rational. Confiding in a sensible person is important. You don’t want someone telling you you’re being stupid! (Not helpful!) There is a reason why catastrophic thinking happens. It is often the case that a person is generally anxious in the first place. The brain will try to give a reason for the anxiety – to try and justify it. This means jumping on any situation as an explanation. So when I was focusing on knives, boiling water and staircases, my body was in a general state of anxiety BEFORE these thoughts developed. Had I not seen knives, boiling water and staircases, I simply would have jumped on something else to be anxious about. Perhaps you’re doing the same with your body sensations, telling yourself that something is seriously wrong. So irrespective of where the pain is, i.e. head, arm, foot, wherever; you will think of a serious condition to explain the pain. It is likely that you are in a general anxious state to start with and therefore jumping onto anything to try and justify the anxiety. So if there were no body sensations for you to react to, you would probably find something else to worry about. I have been where you are. It’s horrible but there are lots of things that can be done to manage it. Counselling / therapy are probably the most important. Additionally, meditation and relaxation exercises are helpful. An anxious brain is a very active, whirring brain with thoughts racing. Relaxation CDs (you can go on you tube for lots of examples,) teaches the brain how to be still. These moments of stillness give the brain a respite from the constant racing and can help with healing. Like a little holiday for the brain, if you will! Exercise is recommended for both depression and anxiety – but I don’t know how you are physically at your stage of recovery. Perhaps this won’t be possible for you yet. In any event, I don’t mean you train like Usain Bolt(!), exercise can mean a 5 minute walk or some very gentle yoga. I have lots of yoga DVD’s - I am a big fan of it post SAH - and you can have yoga exercises for fatigue, anxiety, almost anything. (Again check you tube.) I also found self-help books great. You could go online today and buy books as cheap as a penny, (they do make their money on postage, however!) but I found such books really good. There are countless books written on anxiety and you may find one that resonates with you. Learning about anxiety was an amazing journey for me. Looking back, I am almost glad of the experience. I’ve learnt more about myself in the last year than the previous 37 before that. Other things came out of it too, i.e. I learnt that I needed to become more assertive and this is something I’m working on at the moment. Anxiety is something that can be managed. You will be able to control it when you learn how to, and I’m sure therapy will give you the tools to start fixing the problem. L xx

Hello, Or should I say, Shwmae!? I’m a fellow Taff too. I take it you were treated at the Heath? I spent a ‘glorious’ 5 weeks there. I had a SAH, but developed hydrocephalus and nearly had a shunt fitted; but the problem started to correct itself. As you said in your post, it is different for everyone. I was not able to return to work – but lots here have. It just wasn’t possible for me. I suffer with mental fatigue, so concentrating is very tiring and my memory has suffered. There are some teachers on BTG who have returned to work successfully, so I will let them guide you in this respect. What will be of greater interest to you is that I had a baby post SAH. My SAH was in 2009 and my son, Osian, was born in August 2012. Prior to conceiving, I visited my Consultant (Mr Nannerpaneni) who confirmed that it was safe for me to plan a family. I had a healthy pregnancy, although the fatigue was debilitating throughout. I was monitored very closely. I had a vaginal birth. My Consultant advised that I have an epidural to rest me as much as possible because pain is fatiguing. The birth ended up being a forceps delivery. (I still can’t look at my salad servers without wincing!) I needed medical intervention because I was exhausted and my pushing was non-existent. In retrospect, a C section would have been better and my medical team concede that. I must confess to finding the time after the birth tough. This is just my experience however. I was very weak and tired, but I have a very strong close knit family, not to mention my partner’s family, who all help out. (I should also add that I am 38 now, so my age probably doesn’t help!) I need daily help. I become tired multi-tasking and can go around two hours on my own, but to be safe, I need others with me after that time. As time goes on, especially as Osian’s needs change, I may fare better, but for now, this is how things are. I’m going to say something philosophical now – of a ‘life changing’ nature. Given my issues with fatigue, (which you may not have at my stage,) I find it difficult combining many things into my life. I have to make choices about what is important. The old me was very busy - working long hours in a stressful job, hectic social life and numerous hobbies. I find that I can’t cram so much into my life anymore. Although I used to do voluntary work after my SAH, at present I could not combine this with the demands of being a Mum. For me, being a working Mum would be impossible. That is not such a bad thing if you think about it. Being able to devote all my time to Osian is something I find a blessing and I don’t envy my friends who tread that difficult balance between work and family. It may be very possible for you to return to work. It may be highly likely that you have another baby. Perhaps combining the two, may put a pressure on you that makes enjoying life difficult. (That said, we have a lady here named Jess who is a working mother and has two little boys following her SAH – so anything is possible!) I am not saying that you will never work again, but perhaps doing so during pregnancy and during the pre -school years may be a challenge. (That said, I am making this statement based on my own experience and can’t stress enough that things may be better for you.) No SAH is the same. The levels are different and the parts of the brain where is happens are different. We use some parts of our brain more than others, so the location determines outcomes too. At your stage in recovery, thinking about what is going to happen in years to come, can be stressful. Although difficult, focusing on ‘today’, ‘this week’ and as a long term goal ‘this month,’ may help you more at the stage you are at. Hope today is ok for you. L xx

What a fantastic thread! I did not accept my circumstances immediately. Looking back, I can see how I struggled with confidence and self-esteem. I was, as I saw it, officially ‘useless.’ I do however appear to have taken a leap forward. I attend regular group sessions with a psychologist at Headway. There is a theory that ‘we are what we think.’ So if we think that we are useless, we are going to feel useless. At these sessions, we practice Cognitive Behaviour Therapy (CBT) which is all about managing our emotions in a more positive way. Another thing I do is try to adapt my environment to suit the new me. After 12 months of trying to slot into my old life and failing miserably, I decided to create a new environment for me to live within calmly. Although difficult at the time, not being able to return to work turned out to be the best thing. My job had unpredictable aspects with a need to think quickly. Instead of returning to work, I undertook voluntary work, choosing my hours and duties. This gave me a sense of control over what I was doing and because it was new, I wasn't comparing myself to how I was. I scaled down my friends and ceased contact with everyone who was a challenge. This ‘clearing of the decks’ saved me a lot of wasted emotional energy. I also adapted my hobbies. I tried to resume my running, but as hard as I tried, could only manage a jog. Pushing too much in this aspect led me to being fatigued for days afterwards. Also, my reduced ability was frustrating and a reminder of what had been lost. I therefore took up a new way to keep fit and now enjoy yoga, pilates and walks; and because they are new pursuits, I don’t cross reference with how I was. For me, the essence of dealing with the changes post SAH, has involved creating a new environment, suitable to the needs of the person that I am now. Take a house plant for example. It needs the correct conditions and environment to thrive. If it needs sunlight, it won’t cope very well in the shade. For me, the SAH changed my ‘environmental conditions.’ Although I have issues after the SAH, notably fatigue, memory problems and anxiety; these do not make me less of a person. I am also far more empathic, emotional, caring, nurturing and kinder. These positive changes have improved family relationships. Those who love me do not think less of me because I get tired, forget messages and become nervous in some situations. I am going to make an analogy. Since having a baby, I’ve gone up a dress size. I would love to be the size I was, but when I squeeze into my old clothes, they feel uncomfortable and make me feel a little depressed. The tight clothes remind me that I’ve put on weight. By wearing a size that is correct, I feel comfortable and consequently am less worried about my weight gain – the new clothes don’t dig in and so I don’t have that reminder that I’ve gained weight. Sometimes squeezing into the past (or an old pair of jeans!) just doesn’t work – and for that, my SAH and pregnancy weight gain, have something in common!

Thank you all for your lovely messages. As always, it means a lot. I'm off to a soft play centre for toddlers this morning - an experience which will test my fatigue, no doubt!..... Wish me luck my friends, wish me luck!! L xx

Hello and welcome to the BTG club, (although we frequently tease each other that this is not a club we’d necessarily choose to join!) I had a SAH in 2009. I spent five weeks in hospital as there were complications with hydrocephalus. That corrected itself without the need for me to have a shunt fitted. I remember the time when I came out of hospital. What a bizarre experience that was. I felt very disconnected from my surroundings, almost feeling like an imposter in my own body. I didn’t even feel comfortable with my own image in the mirror- it was as if I was looking at someone else. I didn’t feel comfortable with my own identity and felt that I had lost my idea of ‘self.’ I remember the headaches which seemed constant – and don’t start me on the fatigue. Oh my goodness, how debilitating. I remember crawling to the kitchen one day because I didn’t have the strength to walk, (I had run a marathon 8 weeks prior to my SAH!) My head also felt fuzzy, like I had cotton wool in it. Altogether, not the best time of my life! If I could go back in time, there are a few things I would like to advise the old me upon after my SAH. I did many things wrong and to be honest, the old me could have treated you to a master class in how not to recover from a SAH. I was in this mad rush to get better – and not just ‘better’ but to be 100% again. 99.9% would have been a failure, so I had to push, push, push. I didn’t listen to my body, believing that I was weak spirited and lazy; and so began this cycle of pushing myself too hard, but crashing for days afterwards. Gradually I learnt to listen to my body. My brain was sending me cues and when I listened to my brain and took notice of the tiredness and rested when my brain was asking for it; I noticed that I felt better on the whole. It just took me a while to get into the swing of a life that is slower paced. 12 months after the SAH, I joined Headway who have been fabulous. (They are a charity for people with brain injuries. Don’t be alarmed by the term ‘brain injury.’ It includes people like us who have had the brain injured by some trauma and are recovering from that.) I have group therapy there with a neuro psychologist and those sessions are invaluable to my emotional health. Anyway, skip forward to 2012, in August of that year I had my first baby. A little boy who runs me ragged! But before I got to this stage – I had to rest lots to give my brain the best chance it could to heal. This doesn’t just mean physical rest, but emotional rest too. The brain will find it a greater effort to work through stress etc. (I know that being ill can be stressful, but perhaps the stress and anxiety of illness is a subject for another post.) Your brain has suffered a very recent trauma and is struggling at the moment. Your tiredness is your brain asking you to rest up and take it easy. It won’t be precisely like this forever. (But if you are like anyone else here – you will probably look back at this moment in a year’s time and think, ‘why didn’t I rest more when I came out of hospital!?’) L xx

Hello everyone, Big day here for me - it is my 4th year anni-versary. Not entirely sure how I feel. I'm not emotional, just reflecting on the day I suppose. I can certainly vouch for how things get better, although that sentence does need some explaining. Life is most certainly different. I still suffer with fatigue which has affected every aspect of my life. I am unable to go through any day without needing a nap to rest and restore. As a consequence, this affects jobs, social life, hobbies, family life, friends, independence and financial independence. No aspect of life escapes it. My mental fatigue has not improved vastly in around two years – although I have had a baby in that time and so my issues with fatigue need to take that into consideration. That said, I still maintain, that I am ‘better.’ By that I mean I am emotionally better. I accept my situation and know that many aspects of my life are blessed. The adage that ‘time is a great healer’ is perhaps overused. I am not sure whether time does actually ‘heal’ in that way; but it does give a person distance from the traumatic event and with that distance comes some perspective. Although health issues place limitations and restrictions on my life, being touched by that adversity has changed me into a better person. I understand people’s predicaments better than I did before and it has introduced me to people on BTG and Headway whom I am very fortunate to know. I don’t think that my old life had many people of value in it. My new life, through this forum and Headway, introduces me to a group, the vast majority of whom, if not all, are people who enrich my life. Anyone who has suffered ill health and lives with the consequences of it carries an amazing life story. To share these stories with eachother fuels the emotional growth within us all. So to all newbie’s on this forum, I can confirm that life does indeed get better. We can become better people. Four years ago today my SAH made me very ill. Four years on, my brain injury is the very thing that makes me better.

Wishing everyone the best for the special meeting today! It was nice to read your recent post and feel the positivity. L xx