Welcome, Guest!

By registering with us, you'll be able to discuss, share and private message with other members of our community.


Super Moderators
  • Content count

  • Joined

  • Last visited

  • Days Won


ClareM last won the day on May 6 2017

ClareM had the most liked content!

Community Reputation

3,542 Excellent


About ClareM

  • Rank
    Super Moderator

Profile Information

  • Gender
  • Location
    Portsmouth UK
  • Interests
    NASAH Feb 2015 with Hydrocephalus and EVD

Recent Profile Visitors

1,011 profile views
  1. I agree wholeheartedly with Macca. If you can lower your self expectations you will find things easier. Take the pressure off yourself, step back and look at what can be done to ease your working situation. I didn't ever believe I would reduce my working hours but post Nasah I don't believe now that I could go back to the punishing hours I used to love. It's a life changing event and journey. Slow up and take stock of they things you enjoy, then make more time for them. Clare xx
  2. Very true Karen. We are all individuals and the damage our brains have suffered is individual too. However i would like to thank you for providing this site where we can compare and support collectively. Thank-you Clare xx
  3. Hi dbc, you are still only 7 months out from a life changing event. At your point I too was back at work though not at the hours I was working pre-bleed. I was still suffering from extreme fatigue and felt very heavy headed. I am now 3 years out and am living my 'new normal' life. I work 30 hours per week (with a days break in the middle), I go out with friends, I run and exercise. I'm probably at the point when I can say this is IT and actually IT isn't that bad Hang in there it's still early days, Clare xx
  4. Yes great to hear from you Gemma and good to hear you are back at work xx
  5. The thing is I don’t think there is an answer to that question. Otherwise there would not be the term ‘of unknown etiology. ‘ My bleed was the same as yours and yes I would love to have answers as to what and why it happened but I’m just not going to get them. I just rest assured that I have had a large MRI scan, that not many people have, that has shown I don’t have any unruptured aneurysms. So at least I have the reassurance that for me it’s highly unlikely to recur. Just something we NASH’ers have to live with and hopefully learn to accept. Clare xx
  6. Glad to hear you are coming to probably some sensible acceptance of leaving your job with the NHS. It is always sad when we have to leave jobs we previously enjoyed through no fault of our own. Unfortunately the legacy of SAH is that we have to look out for number 1 as no one else will. You have to be selfish and think what is good for YOU and if that is retiring go for it. Money is often a big factor in this type of decision but you seem to have that covered which is good. If you can get back to doing some of that craft stuff go for it as it will give you some purpose and fulfilment. Good luck Issy, just a sad indication of the way the NHS can treat staff. I am lucky with my current manager but maybe as she has had brain surgery herself she’s a little more understanding. Xx
  7. Fourteen Years Later

    Happy anni-versary SM congratulations on 14 positive years. You are an inspiration to many people on BTG and I love to read about your holidays. Have a lovely day celebrating xx
  8. Carer new to SAH

    Hi Liz Welcome to BTG glad you found us and hope you are finding the site useful. It's full of useful advice and friendly members Some very wise words from Michelle. I too had leg pain and was told it was the blood dissipating down the spine. Hopefully it will pass in time as mine did, if not make a plan to speak to either a nurse specialist at the unit you were treated or your GP. Mum really is in such early days, she just needs to rest and drink plenty of water. Hopefully she will start to regain her appetite soon. I lost half a stone and didn't eat much at all for some time. It's all back on again now though! Just let her eat little and often and try tempting her with things she really likes. As Michelle says it must be really hard for you with 3 children, make sure you take some time for yourself. Get other members of the family to support mum, maybe draw up a rota. My kids took it in turns to spend a day with me to begin with but it wasn't long until I could be left with just regular phone checks. I was asleep half the time! Hang on in there things will get better! Clare xx
  9. My story so far

    Hi Ian your discharge sounds very like mine, it seems to be a common theme after SAH. Was there a nurse specialist where you were treated? If so give them a call if you have questions they are usually really helpful. Rest up, drink lots of water listen to your body. Take one day at a time and don’t entertain the idea of work for a good few weeks if not months. I hope you have a sympathetic GP who will help with pain relief. The headaches will hopefully subside but don’t suffer in silence. All the symptoms you describe sound normal so try not to stress too much. That will only serve to make headaches and fatigue worse. Take it slow and take comfort from some of the posts from people on this site. Glad you have found us, keep us posted on your recovery. Clare xx
  10. Win I have exactly the same problem. SAH has destroyed my love of reading. So frustrating to open the book and think 'who the hell is that character and when did they do that?' lol! I've been recommended to read short stories! xx
  11. Hi Nikki, sorry to hear you are still exhausted and not getting much help. You really should try and have that family chat or you will end up 'crashing', Yes do little things and maybe get your kids to help too, draw up a jobs list and explain why you need help. Please don't keep pushing things though, it will make it harder for you in the long run. xx
  12. Delusions

    I believed I was sharing a ward with one of the drug addict patients I dealt with at work. I even sent text messages to his pharmacist to tell her he was in Hospital! It was all totally untrue- no idea where the idea came from. I also told everyone Barak Obama had been to visit me which gave everyone a laugh. I have lots of other memory flashes like scenes from a film but all very disjointed. At one point I thought I was being nursed under my hospital bed. 😂 Clare xx
  13. Hi Nikki Sorry to hear of your bleed but glad you found us on BTG. It must be a very daunting time for you coping on your own with 3 children. I think you need to call a family meeting and discuss the way forward. You have suffered a huge insult to your brain and it is going to take time to recover. You may look fine on the outside but inside is a different matter. Simple tasks WILL exhaust you and it could be for some time. I remember even getting washed and dressed would floor me for a few hours and I had a husband here doing everything else. See if you can arrange for someone to come in each day and help you. Take each day slowly and just try and achieve ONE thing a day - no more. You need to rest as much as possible and drink plenty of water, it really helps with the headaches. If the pain continues have a chat with your GP they may be able to help. If you work, don't even consider going back for a few months, you should be able to get signed off. When you do go back make sure it is on a phased return. Don't feel alone though, we are all here on BTG to give you support and advice (though not medical advice). You will get better, but it will take time so be prepared - and last but not least - try and avoid stress, that won't help you at all. Good luck and keep us posted. Clare xx
  14. New member - Alara

    Hi Alara, I am coming up for 3 years and still suffer from fatigue. I agree with you that my brain seems to function in a different way now, things are not so easy and I have to do things differently to remember them. My neuro psychologist has been invaluable in teaching me new strategies with my memory and making me look at things from a different angle. She has encouraged me to take control and accept that things are different now but not necessarily worse - just different. I think it is a case of accepting the new normal. I actually find it hard to remember what I was like before the SAH now, so maybe I am reaching acceptance point. My memory frustrates me as I had such a good memory prior to the bleed but I am using lots of different techniques to help. Everything is written down or a note put on my phone and if I don't have either pen/paper or phone handy I keep repeating what I want to remember until I can jot it somewhere. People must think I am mad sometimes! As Michelle says try not to be too hard on yourself. Try and learn strategies to help you in difficult situations, or avoid them as I do! Keep us posted Clare xx
  15. Follow up

    Hi I too had a NASAH. I had 2 angiograms in hospitals, one on admission and one 2 weeks later before discharge. My bleed was original detected by CT scan. I was followed up by MRI scan approx 3 months after my discharge, this showed all was ok and I was discharged. I get the impression that this is a fairly standard follow up procedure in the UK after a non-aneurysmal bleed. I am not sure how things work in the States you really need to speak to the hospital that treated you. Good luck, keep us posted. Clare xx