Lin-lin

Good luck Vanessa. You’ll probably find that your experience of ill health will give you an added dimension in your job because you know what it feels like. I’m sure you’ll appreciate your patient’s predicament in a way no text book could ever teach you. I wish you well and please update us! L xx

Ah the wonderful world of benefits. It is certainly a labyrinth. You need to attend upon a benefits advisor. Make an appointment with your local CAB. They will either help you themselves or signpost you to someone else who can help. It is important that you get this help because state benefits are complicated and you need to make sure that you receive all the financial assistance that you are entitled to. A benefits advisor will examine your situation holistically and consider what sickness / disability benefits you can claim; what benefits exist for help with your mortgage; help with council tax, plus anything else. If you do not attend upon a benefits advisor there is a big risk that you will not receive everything that you are entitled to. Consider ringing your local CAB on Monday – or find out when they are holding their next drop in service - and start the ball rolling. Benefit forms can be stressful to sort out, but easy enough for an advisor who completes them day in day out. You probably wouldn’t consider fixing your car or your boiler yourself. You’d ask a mechanic and plumber to help. Similarly with applying for state benefits – call in the experts! Good luck xx

I had whooping cough and was not vacinated.

Hi Welcome to BTG. Your post struck a chord with me because I am a Mum of an eleven week old baby. My SAH was in 2009; so our experiences are not identical, but perhaps there is enough similarity for our experiences to feel a little shared. Your body is using up a lot of energy at present. Healing is a big job and the brain can be a little selfish with its restoration, not allowing much spare energy for anything else. Given how much rest you need; and given your commitments as a Mum, it will be important for you to organise as much help as possible. I do not know what your family dynamic is, but you say you are staying with your Dad at present. I am glad that you have some help. Are there other family members / friends who can help out too? From experience, the more hands that are on deck, the better. With regards to the children, you could contact Sure Start. I have done some voluntary work for Sure Start hence why it was on my mind to suggest them to you. Sure Start can help families where ill health has placed some stress upon the household. A member of Sure Start could visit your home, assess your needs and put some help in place. If it were not for my own parents, who are able to help me every day with looking after my baby, I would most definitely contact Sure Start for help. Asking for help is a very empowering thing. It can help you feel more in control of your life and prevent that feeling of helplessness that usually follows a crisis. Your GP should have the phone number for your local Sure Start office. Understanding your condition is also important. It took me 12 months to understand mine and I pushed myself too hard at the beginning. Here is a link to Headway which gives some helpful information. https://www.headway.org.uk/Brain-haemorrhage.aspx Take care.

I just want to echo everyone's sentiments. I think you've done amazingly well Dawn. xxx

Hi Rachel, Michelle has offered sound advice particularly as she has experience of caring commitments too. The best advice is often from those who have been through the same. I am sorry that things are tough for you right now. Your Local Authority need to know about your situation so that they can help you. You may also want to consider contacting Carers UK. They have a helpline on 0808 808 7777. This is a link to their website http://www.carersuk.org/. This is a link for finding help where you live http://www.carersuk.org/help-and-advice/finding-help-where-you-live , giving telephone numbers for local offices across the UK to help those with care commitments. Good luck with everything. Lynne xx

Oh Dawn sweetheart, what an immensely stressful situation. Can I just congratulate you on your amazing effort so far. Returning to work is very challenging after a SAH. I cannot tell you what to do, so I’m just going to deconstruct some issues to help you unravel things you may be confused about. Regarding your feeling that you cannot give up work, because it means that they have won; I think your emotional health is too precious to play this trial with. To stick out situations because we want to show others (whom we don’t care for) that we can do something is perhaps something the brain really doesn’t need post SAH. Such battles take a lot of emotional energy and will not help with fatigue. However, if you want to stick out the situation for your own benefit, then that would be worth the effort. Regarding your feeling that you are too physically capable to go back on benefits; having good physical health does not mean that you are not entitled to ESA if there are ‘hidden’ issues. Ill health is not restricted to physical impairments. You would be entitled to ESA for the ‘hidden’ aspects of a brain injury. A person with ABI may be suffering cognitive issues, communication problems, emotional and behavioural effects, memory issues, heightened anxiety / stress etc. Mental fatigue is a very debilitating condition and is much more than just tiredness. Mental fatigue can affect cognition, emotions, work hours and work methods. Being physically well will not invalidate a claim for sickness benefits if there are hidden issues. You could discuss with your GP whether he/she will sign you off if you need some more rest. You could do voluntary work in the meantime which can be more therapeutic and help with memory / multi- tasking in a more helpful way. Alternatively, you may want to stick matters out at all costs. You may feel that your work is too important to lose. You may love your job and the awards and perks are too good to relinquish. I think it will be helpful for you to consider what you want as an end result. Is your place of work so important to you that it is worth the battle to remain there. If the answer is yes, it justifies asserting yourself at the workplace and requesting changes. If the end result is not worth it, asserting yourself will be a lot of emotional energy you could better use for more rewarding pursuits. A battle is worth it if we achieve an end result that is good for us; but a battle is hard work if the end result is not fruitful. Take care Dawn, L xx

Hi welcome to BTG. I was the same age as your wife (34) when I had my SAH. I had only began dating Luke three weeks prior and so I am familiar with the rotten timing of things! Incidentally, Luke was the same age as you too. So Donna and I clearly have a thing for younger men(!) Skip forward three years and Luke and I celebrated the birth of our first child, a son, in August 2012. I gave up my very stressful job after the SAH and now I am a very fulfilled full time Mum, albeit with lots of family support – thank goodness! Life is more meaningful. I appreciate what I’ve got and live in the present. An insight I never possessed before being touched by illness. Managing visitors is essential after a SAH and you are doing a good job, not only in managing it, but in recognising it in the first place. After a SAH, the brain is doing so much healing and even the act of conversing takes a lot of energy. I had my visits organised at the hospital and it was essential. In some instances, some friends / acquaintances were asked if they wanted to write me a letter – (but to expect no reply for some time – no point people getting shirty about these things when you’re ill!!) Having my family read out letters, or having the hospital ‘postie’ deliver them gave me a real boost. It was contact with the outside world, but at arm’s length, so it felt comfortable and didn’t place a stress upon me. It also gave friends the sense that they had made contact and had expressed their good wishes, which is what they wanted to do through visiting anyway. Writing letters gives people a sense that they have ‘done something’ and people can often express more heartfelt sentiments in writing. For the patient, receiving Get Well Soon cards and letters of support is a positive experience; and can help with emotional recovery when time in hospital seems long and not much fun. Best wishes to you and Donna, Lynne

Welcome to BTG! Your post got me thinking of the Fun Loving Criminals song ‘Barry White saved my life!!!!!’ Here’s a clip – it’s very apt for you!!! Chat soon, Lynne

Hi Welcome to BTG. You'll get lots of good support here and there’s a helpful ‘Back to Work’ thread. I refer to my SAH as a brain haemorrhage when talking to others, but will say subarachnoid haemorrhage when talking to medical professionals. In the early days, I would emphasise that I was ‘recovering from a brain haemorrhage.’ This was for people to appreciate that I had health issues irrespective of how ‘well I looked.’ It has often been necessary to do this because of the demands people can unwittingly place upon me believing that I am back to normal. Hope this helps! Lynne

Aw I am so sorry that you are stressed. I found that in the early part of recovery, any disappointment would set me back considerably from an emotional point of view. Have you contacted the hospital? Perhaps you could speak to your neuro surgeon's secretary and ask him / her whether your Consultant will write a letter in support. I had to do this lots in my recovery as my GP was always reluctant to make decisions without first consulting the hospital; even prescribing sleeping tablets. Hope you resolve things soon. L xxx

I am pregnant – due date Friday!! I am 37 years old. My SAH was on the 21st November 2009 and I was coiled. I had complications after surgery with hydrocephalus and came within a whisker of needing a shunt. I was in hospital for five weeks. My physical recovery is considered good, but I’ve lost athleticism which, quite frankly, I find hard to accept! But I acknowledge that in medical terms, there are no physical problems. Mental fatigue is a different matter and I seem to have a very small window for concentration and social contact. Busy, loud environments sap my energy quite quickly. Prior to conceiving, my partner and I attended upon my Neuro Surgeon who confirmed that there was no reason why I could not try for a baby. I fell pregnant in November 2011 – two years after the SAH. My pregnancy is Consultant led and I’ve had numerous appointments. Fatigue is a big problem and I’ve been exhausted throughout my pregnancy. I have needed to return to bed many times after preparing breakfast which may give you an idea of the level of the fatigue I’m suffering. There is no way I could have combined working with this pregnancy. I did manage some voluntary work at certain points, but my duties were exceptionally light and my parents often had to take me to and from work because I couldn’t safely drive there and back. In my second trimester, I was only managing one morning per week and had to stop all commitments in the third trimester. I am well supported with family which has made the situation very manageable. My Consultant did discuss a C Section with me. This was not considered the best option for my circumstances. It was feared that surgery would compound my issues with fatigue and that my recovery – because of fatigue – would be arduous and compounded by the demands of looking after a newborn and breastfeeding etc. I notice that Vicky reports about her C Section in positive terms, and she has Lupus too, so maybe she is in a better position than me to comment upon this. The plan for me is to have a normal birth but with an epidural. The rationale is that pain is fatiguing, so by taking away as much pain as possible, I can hopefully rest and conserve my energy for the pushing stage. There may also be a time limit on how long they will allow me to push, which does lead to the possibility of medical assistance. I am keeping an open mind as the variables are massive. Good luck with everything. It is perhaps a good idea to get medical clearance in advance, just for reassurance. One thing is sure; they will keep a close eye on you. Obstetricians don’t get many SAH survivors as patients, so we make for very interesting case studies! L xx

After my SAH, I was talking to some people whom I did not know very well. I was joking with them, and intended to say that I had to put my boyfriend in the ‘recovery position’ after his night out with the boys(!) But I ended up saying that I put my boyfriend into the ‘missionary position’ which is something different altogether! Funny moments aside, I do get stuck with words and it is more apparent if I am tired or need to think quickly on my feet. I am not upset by it anymore, although I daresay that if I was in certain types of paid work it would make the situation stressful, as the world of work is a more unforgiving environment than what family and friends provide. That said, when I was doing some voluntary work at the Shaw Trust, I did ask a work colleague if I could collect his ‘lettuce’ for the afternoon post. He asked if I meant ‘letters’, looking slightly baffled (!) On occasions, I can insert a word into a sentence that is not the correct one, but I just carry on hoping that the other person thinks they’ve misheard me. All this tells me, that I need to pick my environments, especially future jobs, very wisely. My previous job, which involved advocacy and representing people at court / meetings, would make the situation very stressful and would undermine my ability to do the job. It would cease being funny and I am sure it would lead to people challenging me. So it’s ‘background’ jobs for me from now on which is a much safer prospect for both the general public and my stress levels!

I've got to give birth in two weeks time... yikes!!!!

Having my haircut at a salon!!

Welcome to BTG! I’m two and a bit years post SAH and I am most definitely not ‘cured!’ Mental fatigue is my nemesis and this impacts upon my life in a way that many people fail to understand. In living with a brain injury, I also live with people’s misunderstanding of my abilities and I find this very frustrating. There are some people in my life who ‘get it’ but others, although well meaning, can be confused by my condition. Social contact needs to be controlled significantly. Tasks which require deep concentration can only be executed in brief spells. Crowded, busy environments are energy sapping and kind invites from friends to go on shopping trips are always declined. I am unable to meet friends for drinks as the noise of bars and hopping from venue to venue would be impossible to enjoy. I am also more forgetful and absent minded than before and neither can I multi-task. But 'I look well' and am often judged on this alone. I am no longer depressed about my circumstances, although I do not like them; but I do however consider myself ‘at peace’ with it all. There are ways I manage my condition. For me, carving a different existence was necessary and I stopped trying to slot into previous routines. I used to run marathons, enjoy festivals and music gigs, but to engage in these things to a lesser capacity is just painful. It reminds me of what’s been lost and it doesn’t make sense to engage in hobbies which make me sad. I have carved a different identity for myself. My ‘hobby’ is now my voluntary work. It is social contact in a ‘structured’ way and in working with impoverished people I have a greater gratitude in how fortunate I am to have been born into a family who has the resources to support me. I access counselling at Headway and this continues to have a positive impact. As I’ve said previously, I’m at peace with my circumstances but I am still trying to reconcile within myself, people’s misunderstanding of my abilities. It can leave me upset and frustrated when people overestimate me, but I am making some progress in trying to not let things aggravate me so much. Self -acceptance is a peaceful stage to reach but I’m finding other people’s inability to grasp things a tad trickier!

Perfect Macca! I agree with everything you say. To add insult to injury… ATOS are sponsoring the Paralympics this year(?!!) Hope the assessors don’t watch the games…. They may sanction all the competitors!!!

Wise words Michelle! A healthy return to work extends beyond a desire to do so. There are other considerations. My firm couldn’t offer a phased return which limited my options; but my job was unsuitable post SAH as I was a lawyer. The pace of the job is quick, advocacy is stressful and the margin for error is small. SAH aside, the last time I had a full fortnight off work was in 2001. I know what it’s like to have a strong work history; and what it feels like to lose it all. I do voluntary work now, hoping it will develop to paid work one day. During recovery, I have regrettably pushed myself too hard, but have scaled back. Through working within fatigue, I have improved emotionally. Some people advise time off work to recover; others tell us to push hard at work to get better, but it’s more complex than this. Consider the job in question. What reasoning is required? Are we allowed breaks? What is the pace? What are the implications of mistakes? Is there a long commute? Will the workplace adapt? Are the bosses supportive? We also need to examine physical / cognitive issues. Returning to work can highlight cognitive problems, making pre injury routines difficult to sustain. Cognition and fatigue are separate. Pushing through tiredness won’t assist memory, decision making, speed of thought etc. These problems require coping strategies. Tiredness makes cognition worse and this may be a permanent limitation. People also need to consider their dependants. If other people rely on us, this requires extra energy outside work. A return to work needs to be examined carefully and extends beyond saying ‘yes you can do it,’ or ‘no you can’t.’ There are a host of factors. Let’s say a pilot and a cleaner have the same cognitive problems post SAH. There’s no room for error for the pilot and s/he may be unable to return to work, but the cleaner may still be able to clean. But this is not the only issue. The pilot may not have children and have lots of family support, making it possible to find another job. The cleaner may be a single parent of young children, with no support network and unable to juggle parenting / work as before. The variables are massive. We try to ‘get back to normal’ post injury, but I have no intention of ‘going back.’ I want to move forwards, beyond my ‘old normal’, creating a ‘new normal’ that’s more fulfilling. For me, progress does not mean replicating the past. Instead it means creating an improved future, accepting new circumstances and not forcing myself into past routines which no longer fit.

Glad to hear that you have a Social Worker at last. My joining of Headway was very different to your experience. I emailed them and a representative telephoned me a few days later. It was Christmas time and I was invited to their Christmas Party for a cup of tea and a mince pie! From then, I attended the sessions regularly and so far, have not paid a penny for the service. It's very surprising to learn of the vast differences in our experiences of Headway. Hope you are as well as can be today. L xx

Thank you for your very thoughtful replies. I really appreciate it. You are all correct about having an open mind as I have heard many people tell me that their birth plan did not turn out as they had visualised. I am worried about the fatiguing aspect of childbirth with the added complication of pre pregnancy fatigue, but this baby has got to come out some way and the midwife tells me that the body’s ability to labour is impressive. Sarah, I do like the idea of the breathing space that an epidural would afford me, particularly during a long labour. At present I am unable to sustain a single day without napping (very deeply) in the afternoons. I do wonder how I’ll manage during labour, but maybe I just need to see how it develops. Yes Michelle, the pregnancy is passing very quickly for me too! Maybe that’s because I’m sleeping for most of it. Lol. It’s a bit like time travel – I lose days!! I notice that you Gill, along with Michelle, also recommend a water birth. I have been very taken with the idea and have done lots of reading. However, I am not allowed one according to my midwife, as my pregnancy is ‘high risk.’ There is a worry that if I fatigue considerably, it will be easier to deal with me on dry land than in water! Shame, as I rather like the element of ‘privacy’ that water births afford and they seem very calm births which I thought would help with my deficits in cognition / mental fatigue. I watch One Born Every Minute and the epidural births seem to attract a crowd! I don’t like how ‘busy’ the delivery rooms seem to be. I can find that very tiring in normal circumstances! Gill, my Consultant has recommended that I ask my midwife for signposting to an ante natal class. I’m seeing her next week and will ask for details. Win, you are right – the pain of childbirth is not a pain without purpose. There is an immense reward at the end of it and I need to hold on to that thought as it is a positive way of looking at the situation. MaryB – I’ve joined a maternity yoga class. It’s held in the village hall directly opposite my house, so it’s ideal. It is helping with my confidence, but the focus is on natural birth; so I’m not absorbing other alternatives. I think this is why I panicked when I was told that I may have to have an epidural, because I will then be flat on my back and not able to use gravity to help me. As for a C section, my SAH consultant has written to my pregnancy Consultant and explained that the SAH and coiling is not a contraindication to me trying a natural birth. There is the fear, that a c section may make my fatigue worse and recovery from such surgery may not be straightforward and quick. They think that on balance, a vaginal birth with epidural is the best option. Of course, that does not mean that I won’t end up with an emergency c section anyway – so an open mind, as the others have said, is vital. Just to make you laugh – or wince – my partner is 6’4” and was 10lb 8oz when born - ouch!!!!! This prompted my midwife to ask ‘Why do all you small women hook up with big men??!!’ I’m told that if it seems that I am carrying a ‘giant’ baby – a planned c section may be the best course! I don’t think I’m going to argue too much with that! Thanks again for all your kind words and encouragement. L xx

I have picked up this thread as I have a question about giving birth. My SAH was two and a bit years ago and I am now 26 weeks pregnant. Fatigue is at a debilitating level in pregnancy and I am unable to sustain much activity without breaks. My Consultant has advised that an epidural may help in birth. The basis being that pain is fatiguing and through reducing pain, my stamina levels will be maintained. I understand the logic of this and it may be helpful for the physical aspect of my fatigue. But my fatigue (pregnancy symptoms aside,) is to do with mental tiredness; i.e. meeting new people or meeting too many people. Stress is also fatiguing as is confronting new situations / environments. My medical team seem to be taking into account the physical aspects of fatigue, perhaps considering it a bit like ME / MS / or Chronic Fatigue Syndrome. But the bulk of my brain injury fatigue is centred on cognitive fatigue and I am unclear how an epidural will help with this. Any advice warmly welcomed!

Hello A warm welcome to BTG and, by the way, I love your user name! Your husband may have cognitive problems. Such problems can often be hidden in the sense that a person may have no physical deficits as such and may even seem ‘fit and healthy;’ but the way the person thinks has altered; causing much confusion to those around the individual and it is something which changes relationship dynamics. It must be very difficult for family members and us survivors need to take that on board sometimes! The process of initiating tasks is part of cognition and can be a common problem amongst people with brain injuries. In the two and a bit years since my SAH, I have initiated very few tasks. The majority of my routines and progress is organised by my partner and parents who work together as my ‘team.’ It’s a big difference in my personality and is in sharp contrast to the highly motivated and independent person I was. My inability to initiate tasks does not mean that I am lazy and it does not mean that I do not want to progress, nor that I am not interested in doing something; but the ability to start and organise something overwhelms me. I am far better in following another’s lead and working towards set goals. I would not be able to do this without support. I do not think that there is a fast cure for improving initiation, although I am getting marginally better, but progress is slow. I am not trying to get back to the person I was and my family are not awaiting that event either. I would feel much pressure if that was the case and I think it would inhibit further progress. Counselling has helped. I know that you are not from the UK, but we have Headway here, a charity for adults with brain injuries. Here is a link which has some detail about apathy and poor motivation. http://www.headway.org.uk/Emotional-and-Behavioural.aspx Counselling perhaps needs to be a family engagement. My partner accompanies me on my visits to a Neuro Psychologist and as such he understands precisely the nuances in my personality and how to encourage me forwards. Likewise my parents have read a lot about ‘brain injuries’ and have even attended seminars on the subject. I think that if a family understands the reasons for the survivor’s behavious, they can better relate to it. Behaviours which I could be accused of are ‘unmotivated, quiet, apathetic, anti-social, withdrawn and entrenched.’ But that would not be a proper analysis of the situation. My psychologist doesn’t call me those things. Instead he offers explanations as to why I am behaving like that and offers ways of coping differently. If you google ‘brain injuries’ and ‘lack of motivation’ and ‘lack of initiation’ you will find a wealth of information; but I also think that counselling is a good way to improve, or at the very least, understand, the situation. Best of luck and I hope you find some approaches which work well for the both of you. Lynne xx

Hello, welcome to BTG! The way you describe your emotions post SAH and your concerns about returning to a demanding job reminds me so much of my circumstances in the first few months. It is obviously a huge shock to the household budget when you end up on sick pay and this brings lots of stress too. I will gladly share with you some steps I took, including my mistakes! I made some poor choices very early on in an attempt to be my usual independent self, not realizing that my brain needed a bit more rest than what I was giving it. Before I launch into a proper reply, can you tell me a bit about your family? I.e. do you have a partner, parents, an aunt or uncle; or simply some very close friends? The reason I ask, is that delegation was a major part of my recovery. Even if there are no family members, there are some community services available, but I don’t want to overload you with too much information in one go. When you are able, let me know what your family dynamic is and whether they can be approached and utilised in some way. Will be in touch soon, Lynne xxx

I’m two and a bit years post SAH and headaches were a daily problem until recently. I would take between 4-6 paracetamols every day. I have noticed that the headaches have reduced in pregnancy; but I don’t think that the reduction in headaches is necessarily a hormonal thing. Prior to pregnancy, a common criticism by family members and friends was that I was pushing myself too much. I was very focused on my voluntary work and despite suffering with chronic insomnia, would drag myself into work after sometimes two-three hours sleep. My commitments at work were so important to me, that family had to visit my home very regularly to help with chores, because I couldn’t cope. It’s as if any spare energy I had was invested into my work routine and there was very little spare for anything else, not even social visits. In pregnancy, I have been unable to push myself to the same extent due to a level of fatigue very reminiscent of the first few months post SAH. As a result of not being able to do much; my headaches have reduced. Possibly, through taking extra care of myself, through drinking more water and a better diet, (which wasn’t bad anyway,) I wonder whether all this has nevertheless helped. It’s swings and roundabouts though, although my headaches have reduced, I am not able to live very independently and have to ask for assistance lots, i.e. even a trip to the GP surgery 6 miles away can be demanding and family members / partner help out with travel. It’s ok being like this in pregnancy, but it would not provide the best quality of life otherwise, because although not technically housebound, I am not able to travel too far alone. I do think that a slower pace of life at present has helped with my headaches; but it’s a difficult balancing act when previously I would equate a busy life with a meaningful one. Perhaps I need to take stock of things in future. I live in the countryside now (since January just gone,) in a village of only 600 people. So, perhaps a slower pace of life beckons and hopefully fewer headaches. In the early days post SAH, I think headaches are an inevitable symptom because the brain is healing, so maybe rest alone wouldn’t necessarily stop them. At my stage in recovery, I am wondering whether there is a correlation between doing too much and headaches.

I can relate to this massively. I recently moved to live with my partner and he has a cat, called LeBon! Obviously, I started to know and love LeBon during my relationship with my boyfriend, but now, the three of us live together! It has been commented by family members how the cat has improved my emotional health; obviously assisted by the fact that I am a cat lover. I am very preoccupied with her, which has provided a healthy distraction to my own problems. I like ensuring that her environment is close to perfect, (nearly wrote purr-fect then, but thought that it would be a bit sad!) I also give her lots and lots of attention and affection. Snuggling up to her and hearing her purr is beautiful. People also say that the cat, through having constant company in the day now, seems to be happier! She has a little spring in her step, communicates more and is developing some spoilt attitudes, for which I take full responsibility. She doesn’t however quite grasp my need to nap in the day and it can be inconvenient for her if this overlaps with her mealtimes! I am nevertheless reminded of my chore when I am awoken by her sitting on my chest, nose to nose, with her paws gently padding my neck. I think that it is well established that pets can help with depression and I do believe that LeBon has enhanced my emotional well -being. p.s. what a lovely little thread this is; and I don't think it's been mentioned before..... Not since I've been a member anyway.