Liz D

Hi John Congratulations on nearing your second anniversary. It's good to hear how well things are going for you, you've worked hard to get here. I too am at the stage of accepting my limitations and the changes in me. It really is true what the others say that the first year is all about healing. I found during the second year I was more able to push things and subsequently reach my limits. It's also so good to hear how supportive your colleagues are, this is so important for us when we return to work. What a difference each year makes!

Hi Sandi I've just popped in to see how things are going with you. I agree with Carolyn, you're such a positive person, I know you will pick yourself up and dust your self down. What a tough thing to hear but he didn't say you would 'never' work fulltime. You really are doing so well. You deal with traffic going to and from work, you are coping with work and then when you are at home you're doing all the chores and on top of that excercising! So be kind to yourself and give yourself a big pat on the back for what you have achieved. Now is the time to re-assess your goals. Set goals that you can achieve in the short term, fulltime working can be a long term goal. I set myself small goals now with a longer time scale. At the start of the year my aim was to be able knit again. I found trying to make sense of the instructions very difficult at first and my left arm complained a lot! So I started with a simple garment and now I am back to knitting complicated patterns. I also was unable to read a book, I couldn't concentrate long enough. I have read 11 books so far, mainly autobiographies, so the next goal is to read a book with a plot! So I have achieved my goals for this year. Instead of making New Year resoloutions, I will set myself some more goals for next year. I have achieved this because I cut back on my working hours and days. My longterm goal is to finish the business degree that I had completed one year of. I know I will finish it but I can't do that and work. So I will wait until I retire in 8 years time. Too late to use the degree but it will never be too late to enjoy the satisfaction of having completed it! It's just that little bit harder when you have no choice but to re-assess things but also there is a freedom in it too. Sending you a big hug Sandi, take care. xx

Well done Lin and I wish you every success in your new venture. I think you will go from strength to strength, at your own pace. I agree with Sandi, you write so well and so many times have articulated my thoughts. Your brain may be 'inefficient' in the way it uses it's energy but your intilligence always shines through. You have had difficult decisions to make and this thread will help others who have to face similar ones. It won't be long before Sure Start see how lucky they are to have you and I'm looking forward to finding out where your journey will take you!

Hi David Welcome to BTG. I've just read your introduction. You seem to be doing amazingly well! You should be guided by your GP in reducing your pain medication, so maybe you need to have a talk with him/her. But in the meantime may I suggest that maybe you are doing too much? You are still very early in your recovery and medical advice here is usually not to try and get back to your normal routine for at least 12 weeks. You need to be drinking plenty of fluids, the blood needs to be reabsorbed by your body and processed by your kidneys, in order for it to be eliminated. I still find now, 32 months after my SAH that I will get headaches if I do too much (ie reading, long car journeys, loud music, bright lights) or let myself become dehydrated. I can get whoppers of headaches when I don't pay attention to warning signs that I am doing too much. I have to go to bed and I feel quite hung over the next day and exhausted. But in saying all this, your doctor should be your first port of call. My GP visited me at home 3 times per week for the first 4 weeks when I came home from hospital, then it went down to twice and after a few months once a fortnight. It was 10 months before he would let me come to the surgery, he said it was full of sick people and didn't want me catching anything! He still checks things every 3 months or less if need be. My GP has had the misfortune to have had quite a few patients over the years have a SAH, so I guess I'm fortunate.

Hi Cas Welcome to BTG. I'm so sorry you find yourself in this position, AVM must be a very difficult thing to have to live with. You have done really well to cope with this on your own for 20 years. Maybe now is the time to ask for support. Have you discussed how you are feeling with your GP? Your GP should be able to refer you on to a counsellor or psychologist. I received counselling a year after my SAH and I found it so helpful and reassuring. Not only are you able to talk through all your fears etc, they can suggest coping techniques, even teach you relaxation and anxiety management. Angios are horrible things to have to deal with. It's so different to having one when you have just had the SAH, you're full of drugs and not quite with it! I remember the state I was getting myself into before my 12 month post SAH angio. I was a nervous wreck and found it very uncomfortable but they are an important part of recovery and for keeping us well. But they do require a lot of energy as we need to try to control our anxiety and keep focused to get through them and for you to have to do this every 3 months, well what can I say, no wonder you sound weary! In saying all that, its good to hear your positivity, what a great idea to put the note on your bathroom mirror! You are a survivor and have done amazingly well in your recovery. Take care.

John you are so right about the relief of realising that you have reached your limits! I worked 35 hours before my SAH and now work 18 & 3/4. I was coping with work, that is with concentration, accuracy etc. I too couldn't (and still dont') multi task but could still get through my work load. But it was when I came home and switched off that the fatigue would hit with a vengeance and weekends were being lost to headaches and sleeping. I kept thinking that it would get easier but it didn't and that's when I decided to reduce my hours and reduce the number of days I worked. It's having to adjust to another change, as a result of the SAH. Another reminder that I'm not the same person but I am so glad I made that change. I love my work, I look forward to going in and I don't ever suffer from Monday morning blues (maybe becauuse I work Monday afternoons)! I now have enough time and energy to really enjoy my hobbies. But from time to time I still get hit with fatigue and will give in to it and rest. I dont' let it get me down because I know it will pass. We have to remember not to be so hard on ourselves and realise when it's time to stop pushing (I know it's not easy). Everyone, whether they've had a serious illness or not, has to find a work life balance. You have to have enough time and energy to enjoy life away from the workplace, it just seems that we SAHers might be a wee bit more stubborn than most! Sandi this really is such a good thread you have started and you are doing amazingly well on your return to work. Good luck Mags on your return to work.

Hi Gaynor I was told about the need to keep up with the fluids whilst still in hospital. Not only do you need to keep hydrated to reduce the headaches but also that your body has to process the blood and it's your kydneys that do this. So the more you drink the quicker the blood is dispered and again this reduces the headaches. I was also advised not to drink alcohol but I've been told that caffeine is definately out. I have had my left vertebral artery coiled as well as the aneurysm, so I will feel the affects of alcohol very quickly. Also they think my aneurysm may have been caused by an inherited weakness and I was told that the weakness could be there dormant elsewhere. Alcohol (in large excesses!) can fur up your arteries, so this is why they advised me to stay away from it. I had a glass of champagne on our 25th wedding aniversary last year, it took me almost 2 hours to drink it. I could feel each sip going to straight to my head and I felt woozy. I did finish it (eventually!!) but have stayed away from alcohol since then, I just don't like how it makes me feel. I didn't drink a lot before my SAH but did enjoy and glass or 2 (sometimes 3) of red wine. I don't miss it at all now. If you have problems with your blood pressure then you should stay away from caffeine. Caffeine causes your blood pressure to spike and drunk regulary will cause it to be raised. but I'm assuming that your doc has checked this for you. Like our SAHs and SAH recovery we're all different and the effects of alcohol are different for us. So as Sandi has said maybe have a little 'taster' and see how you get on! Cheers!

Hi Sandy I've flown quite a few times since my SAH but only on domestic flights, to visit family in England. I was very nervous about flying and how my head might feel. So I got myself prepared! I took pain killers 30 minutes before I boarded the plane, to try and stop any possible headache. I had to close my eyes on take off as I got very dizzy and the same when landing. I no longer take painkillers because I don't get a headache when flying but I do still get very dizzy on the take off and landing. I also wear in flight ear plugs to cut out the noise from the engine. The worst part of it all for me is actually dealing with the airport. I find the noise, the lights and the amount of people difficult to deal with. This leaves me tired when I arrive at my destination but I just go straight for a lie down. This has put me off travelling further at the moment but it's on my 'to do list'! Next year we are going Christmas shopping to New York, so plenty of time for me to psyched up for it! There are quite a few 'jet setters' on this site and fly all over the place! I'm sure you will get plenty of more adice/information from them once they read your post. Good luck and enjoy (I'm assuming you're flight is for pleasure)!

Hi Julette What your feeling is very normal. I work with psychologists and I'm always asking them 'is it normal to feel like .....'! I'm absolutely fine all year round but in the lead up to my anniversary I can get quite emotional. My aneurysm ruptured on the 10 Feb and I had a sequential bleed on the 14 Feb. It's my birthday on the 13Feb and we were outside the restaurant when I collapsed on the 14th. So my difficulty is separating my birthday from this. My 1st anniversary was also my 50th and we had a quiet family dinner but I had to be out of town on the 14th, so we went away for the day. I had this overwhelming desire to feel safe! On the lead up to my 2nd anniversary I had arranged to take annual leave but was thinking of cancelling it about 5 weeks prior because I felt so calm. But 2 weeks before it, my husband came into our bedroom to find me in tears, it was all coming back to me again. Again I had to go away for the day because of this desire to feel safe! My husband also takes time off to be with me, don't think I'm ready to cope this with on my own yet. What I was told by the consultant psychologist was that, when you suffer a trauma you are not always aware of the triggers that will bring it all back. It can be a trigger that your subconscious picks up on and so out of the blue you are having to deal with all sorts of emotions. So you really have got some triggers going on at the moment! He told me that because I can only deal with these feelings once a year it could take me several years for most of the emotion to subside. So I have to deal with it bit by bit. This year my goal is to try and stay at home and not run away from it! You should do what you need to do. If you feel you need someone with you then that's what you should do, make sure it's someone who is very understanding of what you are going through. But it such a great feeling when it's over and you realise that a whole year has passed!

Hi John This is truly awful! There will be a complaints procedure within your NHS Trust and there will be set guidelines as to how and how long it should take to be resolved. However, find out your MP's email address and email him (or if he has surgery due and you can get there go and speak with him/her). He/she will contact the Chief Executive of your Trust, on your behalf, for answers. Things have a habit of moving very fast (at least it does in the Trust I work for) when MPs get involved. This guy needs a bit of a wake up call!!!!

Hi Mags Welcome to BTG. My goodness you are doing well, it took me months to be able to sit at the computer! Wishing you well in your recovery and hopefully it will keep going really well for you. Take care.

My first attempt at returning to work was 10 months post SAH and the occupational doc thought it could take me 6 months to work up to my 35 hours. I was to start with 6 hours a week, over 2 days and not to be consecutive, for the first month. I managed this. I'm an administrator and work with all sorts of computer packages and accuracy is very important. The second month I went up to 12 hours per week and again the days were not to be consecutive. I was managing the work and the hours well and my accuracy was even better than a girl who had just started! I was feeling really good. But my problem was my manager and office supervisor, who put me under huge pressure and were very annoyed about the slow progress of my phased return. I've wrote about this before. I eventually cracked under their pressure and after 11 weeks was signed back of with work related stress and it took 4 months for me to recover from that. Occupational health doc said that it would be detrimental to my health to return to that office and I was redeployed. I work for our NHS. My second attempt to return to work, in this new office, was so much easier. I was now 16 months post SAH. I've not looked back. However, I work for psychologists! I can't imagine a better place to be after having a ruputured aneurysm! I no longer sit in at meetings and take minutes and I can't carry files upstairs to the filing cabinets, the stroke that has affected my left arm leaves it too weak and I drop things. They even bought me an electric stapler (the best invention ever) because I had difficulty using a stapler (I'm left handed). I have gone from strength to strength working here with these lovely people who are so encouraging and supportive. But also, my children are older and my husband is a senior civil servant, so there is no financial pressure on me. It's pressure and stress that really saps your energy. I really do admire the mum's on here who cope with young children (even more so you single mums) and people who are maybe single or breadwinners who feel financial pressures because the bills are still coming in. You are the ones that amaze me (and inspire) with your strength and ability, just how do you do it!

Hi Sandi What a day! I'm impressed you managed to drive home, well done. It's so easy to push on with things when you are on a 'roll'. I've done that, more when working with spreadsheets. I know I have to take more regular breaks from the concentration but when I'm making up new ones and working on the formulas, I just plain forget. It's afterwards that I know the headaches/fatigue/brain fog are going to come with a vengeance! So now I only work on them on a Friday because I know I have the weekend off. Try to take note of your recovery, see how the symptoms are and how long they last. Over time you will not only get better at pacing yourself, you'll also see that recovery doesn't takes as long. But you really are doing so well, take care.

Hi Zoe I can only add my sympathies for what you are going through now, you have worked so hard to try and makes thing work as well as look after your young family. His family need to take a step back and look at what you have been dealing with! I agree with Skippy, let them try your life for a week! You have got your priorities right, the children come first but you also have to start looking at what you need, because then you will be able to give your children the energy and time that they deserve. The children are having to deal with their dad's SAH too and it can't be helping them at all the way these adults are acting! Sending you hugs, take care.

Hi Tracy Glad to hear you're getting some relief and hopefully this will progress. Sorry you had a bad time later on, nothing wrong with a good old cry! Pain does get you down, it can be almost be torturous, keep your spirits up and keep telling yourself it will get better. When I was getting physio I was always told to have a bit of time to myself and to have a glass of water, I can't imagine having to have typed minutes after it, well done you! Take care.

Hi Sandi Stick with it, you're doing really well. It will get easier but remember it's an uphill struggle. Give in to the tiredness and don't try to do too much at home. When I went back to work last year (it was my second attempt)I went straight back to 35 hours. But I work 5mins down the road from my house, so I don't have the added strain of having to drive and deal with traffic. I took regular breaks and would even go into the loo for a few mins, close my eyes and let my brain calm down. I kept an eye on my fluid intake and kept fruit on my desk to snack on. I found that at weekends I mostly was recovering from the working week but I did feel really good about myself. I did this from July until the end of October. This is when I cut my hours back to 18 3/4. I work 4 hours on a Monday, Tuesday, Thursday, 6 3/4 on a Friday and I have every Wendesday off. I needed to get a balance between work and home life. I was coping really well with work and making very few mistakes but I could hardly do anything at home and there was only me and my hubby! I really feel that now I have the best of both worlds. I cope really well with work and I'm back doing most of my hobbies (knitting, reading, cooking) and I can keep the house spic and span! I do still get fatigue and I will always give in to it, this is when my hubby takes over the chores and I'm allowed to sleep and rest at much as I want. I know I couldn't manage without having Wendesday off. The very best of luck with your return to work. Remember to listen to your body and give things time to adjust. Remember to add in the fact that you drive to and from work when you are looking at what you are able to achieve!

Hi Victoria Welcome to BTG. You are doing really well to be on the computer so soon after your SAH, well done you! I was still sleeping for most of the day when I was a month post SAH. It took me 3 weeks just to be able to get the strength and co-ordination to be able to stand in the shower and wash my hair! I was told by my surgeon on the day of discharge to wait 12 weeks before getting back into my usual routine. I took from that, that he meant I should be back at work then and was getting a bit stressed at my slow pace of recovery. Some people do make it back to work after 3months but for most of us it takes a lot longer. I went back after 10 months, on a phased return, lasted 11 weeks (I'd only managed to work up to 12 hours per week) and was then signed back off again for 4 months. I returned to work last July, straight back into my 35 hours and haven't looked back since! I've only had 4 days sick but have also cut my hours back to 18 3/4. Your GP is absolutely right, you have to listen to your body. It will let you know when you have done too much and the dreaded fatigue will set in and/or the headaches. As Louise said, try not to push things to much and don't put too much pressure on yourself. Remember you have had a brain injury and our brains determine the timescale for each of our recoveries and it will refuse to be rushed! Have you visited the Brain & Spine Foundation website? There is an information sheet on there and it gives advice on returning to normal activities etc. There are neurospecialist nurses too that can give advice on the phone, or did your surgeon give you the name of the specialist nurse in the hospital you were treated? Wishing you all the best in your recovery.

Hi Elaine Welcome to BTG. You are still very early in your recovery but are doing amazingly well to be on the computer and finding this site! It took me months to be able to sit at the computer! I'm also on the east coast but I'm originally from Greenock and have family there so I'm still a frequent visitor to the west. As the others have said, at the moment you should be getting plenty of rest and keep up your fluids. I was still sleeping for most of the day when I was a month into recovery but starting with a a short gentle walk is the best way. But you must get advice from your GP about when to start with excercise, I'm assuming that your GP is keeping an eye on you. recovery from a SAH is very individual thing, although we seem to go through a lot of the same emotions. I found the support from this site invaluable in getting through the emotional roller coaster but I also had counselling which helped too. Take care.

Hi Robert Welcome to BTG. I too had my coiling op at the Western General , Edinburgh and the staff were wonderful. I have 5 siblings, one sister has been checked and is clear and one sister is waiting on a scan. My other siblings don't want to be scanned. My paternal grandfather died from a SAH and I have two cousins who have had SAHs. Sadly one died. My cousin that survived her SAH and had 2 aneurysms lives in Canada and her daughter has been scanned and is clear. She will have a scan every 5 years. 2 of my other cousin's children have been scanned, one is clear and one has a small aneurysm that doesn't need treatment at the moment. The one that is clear has been told there is no need for any more scans. It's interesting the difference of opinion in the two countries. My 3 children have been advised to have a scan but have been told this won't happen until they are 30. At the moment they want to be scanned (although they may change their minds) but they are 24, 22 and 20. I do worry about them, especially the youngest as he suffers from severe headaches the way I used to. But at least they know that they should lead as healthy a lifestyle as possible and that they certainly shouldn't smoke!

http://www.brainandspine.org.uk/whats_new/news/coping_with.html Hi Janet Welcome to BTG. Follow the link above and get your family to read the leaflet about the fatigue that we suffer from. People don't seem to understand the difference between fatigue and feeling tired. If you feel tired, you have an early night and feel refreshed the next day but with fatigue it can go on for days/weeks and no amount of early nights will make any difference! You most certainly are not lazy! It's such early days for you and you are doing really well. It took me months (about 7) to be able to sit at the computer for any length of time! Take care.

I agree Kelly, it is a kind of grieving process and grieving is an individual thing. It's having to go through the shock, disbelief, anger and then acceptance before finally finding peace with your situation. Leo it is difficult coming to terms with the changes. I was told in hospital to try and not keep going back to how I was before the SAH and compare how I was then. I was to compare myself with the first day home from hospital. It took a bit of time to stop thinking back to preSAH but when I started to look back at how I was when I came home I could see the improvements. I think this helped me stay positive and deal with the grieving process. I always started with 'well I'm alive' as the bottom line and then looked at all the things I could do. The list slowly started to get longer and I no longer dwell on what I used to be like. I wasn't perfect before the SAH, so it's all right now that I'm still not perfect!

Hi Neil I think I can relate to this. Before my SAH I thought the same, that life is what you make of it, don't have any regrets just learn from your experiences. When faced with anything my mantra to myself was 'will it kill you? No. Then just get on with it!'. My sister once described me as the strongest person she'd ever known, as no matter what I faced I got throught it. Even when the docs were giving me statistics in hospital - they'd no idea how I managed to survive 2 sentinel bleeds, a ruptured aneurysm and a sequential bleed. So when they were giving me the stats on the likelyhood of me ever working again, I thought right I'll be one of them that does get back to work! But as the weeks went by I found it very difficult to push things the way I used to because I could have died. I found it very hard to get around these thoughts and so lost my 'mantra'. This was when I needed some counselling and it was my counsellor that helped me work through things and get my confidence back. I'm 2 and half years post SAH and see some of the old me and yes I use my 'mantra' again! Before my SAH I had a photographic memory. I used to rewind the video in my head if I needed to find something I'd misplaced or when I was sitting exams I would 'read through' my notes in my head until I found the answer. After my SAH when i tried to do this, all I saw was a big black hole at first. Then as the months went by it changed from the black hole to a very jumbled up picture that I couldn't make any sense of and it's still like this. Now what I've discovered is that I was using the back of my brain to do this and this is where my bleed was. I was told that your brain is 'elastic' and that if one part stops working sometimes another part of your brain takes over. When I try to remember things now it's the top part of my brain that does this. I am now starting to 'rewind the video' once again! I can get a stomper of a headache doing this but it's worth it! I am now very aware of my brain and very aware that it is this that makes me 'me' and makes every part of my body function. I had a brain stem stroke during my coiling procedure and have had to do a lot of work in regaining control of my left shoulder/arm. I have found it fascinating just what our brains control and we never think about until it gets injured. But then why should we? I am such a changed person now and I really like the 'new me'. I feel I've found peace with it all. I am so laid back, I never get angry and very seldom even get irritable. I know I see the world differently to most people because of what I've been through but I see it as a priveledge. I have a great job working with great people and I have a very supportive family. I feel lucky that I don't need to be striving for 'things'. The most important things in life are the people that surround you and fill your life with love (bit soppy but true). I hope this makes sense! I do struggle sometimes finding words. It's so important also to be able to express ourselves to people who really understand where we are coming from you. Thank goodness for BTG!

Yes WinB143 (I also remember waving back to the arab, lol!). It's not much fun for family at the time. After my coiling I needed to be monitored constantly and had a nurse sit by my bed 24 hours a day for 5 days. As they moved people in and out of the ward I was in, I kept wondering why they never moved me as I didn't think I was that poorly! It's only now that I realise how many tubes I had in me, including a tube stitched into my artery in my right leg and another stitched into an artery in my left arm. I knew it upset my youngest son seeing them all but I thought by putting my hands under the covers when he came to visit he wouldn't see them. Forgetting that they were plugged into the wall behind me! We can now laugh (and do laugh about it) but I know they found it a very scary time. I hope this helps you in some way Sharon and helps keep you positive. I had a brain stem stroke during my coiling procedure and had to relearn quite a lot after I came home and still have left sided weakness. I do remember a teacher friend saying that I was like a child, but not childlike, because of the things I had to relearn. But my SAH was Feb '09 and I've been back at work since last July and I'm still improving! Time IS the best healer. Sending best wishes to your mum and all your family.

Hi Sharon I'm sorry your mum has had a SAH and wish her well in her recovery. My husband told me that (when I was in HDU) I was convinced that one of the night nurses was trying to harm me and asked him why she kept putting me and my bed in the staff kitchen! My memory of this is still me sleeping in a kitchen at night! But this was also when I was having halucinations - I kept seeing a rastafarian crawling on the ceiling and an arab waving to me from the circular light in the ceiling, to name a few. I think this was caused by the amount of morphine I was being given to help with the pain but the staff said it was part of the healing process. I was like this for a week but things got better once the doses of medications got less. If you have any concerns or questions speak with the staff that are looking after your mum. You can even ask to speak with her consultant too if it helps give you some answers. We are all different and our healing can also be very different.

Excellent article Jen. Some people are listening to us! Well done Brain & Spine Foundation!