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ClareM last won the day on October 7 2018

ClareM had the most liked content!

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About ClareM

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    Super Moderator

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    Portsmouth UK
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    NASAH Feb 2015 with Hydrocephalus and EVD

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  1. 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
  2. We are all very different and should take the advice of our doctors. Aspirin is a very useful drug than thins the blood, however it comes in various different strengths which doctors use for different things. The article originally quoted was from The Lancet which is a very well respected publication that only publishes credible information. Clare xx
  3. 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
  4. 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
  5. 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 😀
  6. 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
  7. 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
  8. 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
  9. 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
  10. 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
  11. 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
  12. 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
  13. 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
  14. 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
  15. 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
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