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Everything posted by ClareM

  1. That looks really interesting Louise. I may look into getting one for me self as I struggle with all the airport noise. Clare xx
  2. Happyish anni- versary Jan. I hope this year brings some positive changes to your life. I am just ahead of you on the journey and too feel my life has changed so much since the big event. I too feel I lost a lot of people along that journey but am heartened by the new ones I have found. Glad you have some people you can you can trust and rely on. Hang on in there girl. Fingers crossed for your move. Clare xx
  3. Congratulations of your 5th Anni versary Michelle. You are an inspiration to many here on BTG. You have had a hard year, I hope you are now seeing the light at the end of the tunnel and that the neuropsychology testing and support has helped you too. Clare xx
  4. A lovely tribute Neil she sounds like an amazing lady. Deepest condolences Clare xx
  5. Hi Ami, I echo what Skippy has said, there is no way I could work those punishing hours now and I doubt whether your brain will cope either. You could end up making yourself quite unwell and stressed. I did this to some extent in my last job and ended up going off sick and eventually changed my job and working hours. You say your immediate boss has been helpful and understanding so far, let's hope he continues in that vein. Maybe he could explain to your colleagues your limitations. It may be that you will never be able to work those punishing hours the same way you did and that you may have to make permanent changes. Sad but it may be something you have to consider for your own sanity. Sorry to sound so harsh but you have had a life changing event happen and you need to protect yourself. I hope the meeting goes well and that you are supported by your employers. But seriously maybe now is the time to make some changes. I didn't think I wanted to do that but now I have made those changes I am much happier. Good luck, keep us posted and keep venting here on BTG, we do understand xx Clare xx
  6. Ruth lovely to read your blog so far. I know your journey has been very similar to mine but your comments on diagnosis "Am I going to die?" and the doctors response "not on my watch" are identical 💖 I hope you have managed to get back to your acting and managing to remember the lines Life can be a struggle post bleed but we should be proud and grateful that we have the chance to embrace life - even if it's hard to remember that some times! I look forward to future instalments Clare xx
  7. Hi Melissa Have you ever considered reducing your hours? Is this possible or not viable financially? I used to work over 40 hours a week and have gradually reduced since my bleed to 30 hours. I do those hours over 4 days with a midweek break, having Wednesdays off. I find this works perfectly for me - I can't imagine ever working full time again. It may not be that your work can accommodate this or as I said it may not be possible salary wise. It's really worth thinking about it though, one of the best things I did. Without giving medical advice it is possible that the fatigue you are suffering is causing your mood drop, so think about more rest and taking time out. Sounds like you have a great supportive boss. I hope you start to feel a little more like yourself but remember it is a new you. Clare xx
  8. Congratulations on your year Charlie. I think the first year is the hardest and you certainly do find out who is there for you in friends and family. Sorry to hear you are still suffering from headaches, have you talked to your neuro team about this? Hope you can get some relief. Good luck for the future, hope things improve, just be kind to yourself. Clare xx
  9. Hi Melissa, when I read your post I saw myself.... I am 4 years post bleed and often find myself struggling to come to terms with everything. Fatigue and memory are still my main problems and nobody understands that. I had an excellent memory pre Sah so I feel it all the more now. People say ‘ oh your memory is fine - I have problems too it’s just we are getting older’ But that’s not it for me, I’m different now and so is my memory. For me it’s also the mental fatigue, I can cope physically as I run 5 miles several tines a week. But I can only work four 7.5 hour days. Work can floor me mentally so maybe you are pushing yourself too much there. What do you do for work and how many hours? Maybe that is draining you more than you realise. I find if work has been stressful or busy that I ‘lose’ words or get them jumbled. I think it is a common trait post bleed. Yes we we all look fine from afar but many of us are far from fine! And sometimes I wish I could turn the clock back - but it’s not going to happen so it’s all about acceptance. That can be hard, I know only too well so I understand how you feel. You aren't alone, we here on BTG are testament to that 😀
  10. Hi Crazy, huge congratulations on the marathon, I feel your pride! Your post sounds very like my journey. I too am a runner, was actually running when I had my bleed. When I went back to it 4 months after my NASAH people kept asking " why are you running?" " doesn't it worry you that it will happen again?" My longest run is nowhere as far as yours, my challenge was the Great South which is 10 miles. I completed it 18 months after my bleed and wept when I crossed the finish line. Running has been my saviour. When I am stressed I run, it's the one thing I don't need to tax my brain doing - just my feet and legs! I run with a group and we all run and chat - so we aren't going to win any races. We all say running is for our mental health and the fact it helps with physical health at the same time is an added bonus. I too struggle sometimes, even 4 years down the line I am still accepting what has happened to me and how it has changed my life. But as you say the little victories are the sweetest and bring the most happiness. I hope yours continue and that you manage many more marathons. Clare xx
  11. Hi, welcome to BTG and congratulations on getting back to work albeit part time. I changed my job a year after my NASAH, I declared my bleed during my interview and was still given my new job. After a few months it was discovered by my neuro psychologist that I had mild cognitive changes. My employer decided I should see Occupational Health and I was therefore seen by an occ health doctor. I will add at this point that I am employed by the NHS. I will say that the Occ Health doctor was looking at my problems and how it would affect me in my role. He was keen to help me find tools to help me alleviate these problems and he did give me a lot of tips which were very useful. I can't imagine that they will find you unfit for work, they will just be trying to make your path clear. If your current boss is keen to keep you they will be sure to have taken this on board. Really the Occ Health report will be to protect you both so take advantage and make sure the report reflects what you are capable of. Good luck, keep us posted. Clare xx
  12. Hi Kim, welcome to Behind the Gray glad you found us. Can you tell tell us a little more about yourself and your bleed? We are unable to give medical advice but can tell you about our own experiences. Sounds like your bleed was non aneurysmal, hope you get your angiogram soon so they can sort your treatment out. If you have more medical questions try going back to the unit where you were treated and see if someone can help. Take care and drink plenty of water, it helps with the headaches. Clare xx
  13. My vision was definitely affected after my bleed, mu optician advised me to wait a good 6 months before making any changes. I subsequently did wait and my prescription was changed but not by much. I wonder if as Tina says you may have just done a bit too much last week and your brain is protesting. Mine still does now, 4 years later, when it thinks I've not played fair. Take it easy and rest when you get the chance. I wasn't back to 4 days a week at your stage, possibly working up to that so don't push yourself too much. Enjoy the Easter break and rest Clare xx
  14. You aren't alone, there is always someone here on BTG who will be happy to offer support. Be good to hear more about you and your event, feel free to post in the Introduction section with your story. This site has been a godsend to me since my bleed so it's nice to be able to give back. Take good care Clare xx
  15. Hi welcome to BTG glad you found us. I work in the NHS and too suffered an NASAH just over 4 years ago. My memory of events a few weeks prior to my bleed are sketchy and I too had an excellent memory pre event. I sometimes struggle now to remember patients names though I recognise their faces. I have been told by my neuropsychologist that I have problems with attention caused by the bleed. I can be with a patient through a consultation, leave them for 20 mins then when I meet again I can’t remember their name. I am still learning strategies now to overcome my memory deficits. Writing everything down and using prompts. Its a long road but gets better with time. Good luck. Clare xx
  16. Hi I echo what Daffs and Subs say. You are in such early days and seem to be doing so well back at work. Take it slow and don't try to increase your hours too soon, your brain won't thank you and you may regret it. Outward appearances are always deceiving and it is difficult to explain to people how you can look so well but feel so ill inside. I used to find it very difficult telling people that I couldn't so lots of things I had done previously. However with time you will hopefully regain more energy and get back some normality - it will just be a new normality. Good luck, take it slow xx
  17. Hi Paula I flew 3 months after my NASAH but I did not have surgery other than we evd. I think you need to check with your consultant to confirm if it’s ok. I have flown many many times since then and never suffer any ill effects others than fatigue. I always factor in a days holiday after my holiday now 😀 clare xx
  18. Hi Sarah I think consultants usually meet weekly to discuss cases, either your case has not got to them yet (sometimes there are too many cases to discuss and they roll some over) or they have discussed and feel it is safe to wait for your appointment to talk with you. An inter-cranial haemorrhage is any bleeding beneath the skull and includes a SAH. The letter you have received is probably the one dictated after your appointment at the beginning of the month - yes they can take that long to get out. Consultants have to dictate them, then they get typed and then back to consultant for checking and approval then out to GP's and patients, using snail mail! I hope you can manage not to worry too much, I am sure that if something had been discussed with the radiologists and found to need urgent attention you would have been contacted. What I would do in you situation is call the consultants secretary and ask if he would be able to give you a call to reassure you. Our consultants get such requests all the time and they are not 'gods' they don't mind. Alternatively is there a nurse specialist at the neuro unit you could talk to for some reassurance? Either way please do not leave it and stress. They told you to contact them rather than your GP so I would go that way. Give them a call today and get yourself some peace of mind. Good luck, keep us posted. xx
  19. A monthly donation is worth it to keep this great site running. I don't drink coffee so the money I'd spend on one if I did can go to BTG Keep up the sterling work Karen and hope others can help out too. Clare xx
  20. ClareM

    Janet's Story

    Welcome to BTG Janet glad you have found us. I have replied to you re work in another thread you posted in so won’t repeat myself. You are very very early days in your recovery and should take a step back and reevaluate I too was a very busy person who was always on the go working long hours in a stressful job. What this his event has taught me is that I now have to slow up. I still do lots and my physical activity is probably more than pre bleed. But it the mental side that still gets me 3 years later. I’ve just been on a weeks skiing holiday and suffered minimal fatigue. Back home and at work for 2 days and I’m suffering again. It’s because of the concentration needed to do my job, so I’m glad for my mid week day off. You hopefully will will get more energy back. I remember at 2 months I struggled to walk far or do anything that required concentration for any period. Be kind to yourself and slow up - you will get there in time. Feel free to ask any questions. Clare xx
  21. Hi Janet First of all stop beating yourself up about getting back to work and back to where you were. Your brain has suffered a terrible insult and two months out it’s very early days, it was over three months before I started back to work on a very slow phased return. Just pace yourself, 8 hours in one day is probably just far too much. Can you reduce your hours for a while and gradually build them up? Hopefully you will at some time be able to return to the job you love just give it time. Drink plenty of water and take lots of breaks that will all help. It it was over 8 months before I settled back to my job and new reduced hours - full time with a day off mid week. So so take care of yourself and show down, you’ll get there. Clare xx
  22. ClareM


    Hi Jayne Welcome to BTG sounds like you went through the mill in 2000. How are you doing now and do you have any lasting symptoms? I am 4 years post bleed and doing relatively well, some short term memory problems and fatigue but otherwise ok. Hope you are finding the site useful, how did you find us? We are a friendly bunch always ready to help and support other 'victims' so feel free to ask any questions. Hope to hear more from you soon. Clare xx
  23. Hi Rosie I echo what Tina and Casey say, if it is of concern have a chat with your GP or neuro nurse specialist. We often get twinges and pains in areas that were affected by our SAH and it automatically brings it all back. Hopefully you will get the results of your MRI soon and they will be positive. I still exercise a lot and do worry I do too much but so far so good. Can't say I do yoga though and it is a lot of bending with your head down. Have you thought of trying some other forms of exercise class or even swimming? Take good care and make sure you keep drinking plenty. Clare xx
  24. Very interesting and informative video Daff, thanks xx
  25. Hi Jessica sorry I too don’t have a lot of advice for you except what the others have said about water etc. My brother had SAH when he was 16 that’s the youngest I’ve heard. He made a full recovery but was in hospital for a long time. Mind you that was about 50 years ago when you stayed in a lot longer than now. Hope she she recovers well and you find the support you need. Clare xx
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