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ClareM last won the day on July 15

ClareM had the most liked content!

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About ClareM

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    Super Moderator

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

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1,306 profile views
  1. ClareM


    Jan a consultants secretary has no right to tell you you can’t speak to a nurse specialist. You should be able to access one through the outpatients department. Or just try asking for the neuro nurse specialist through the switchboard. They will be able to give you the definitive answer so try again. Hope you get an answer. Clare xx
  2. Such wise words from Macca! I think as he says that some of the problem lies in the fact that it is a sudden change, and a huge change. I am 3 years down the line and still trying to accept the new normal. I've had several job changes each throwing me new challenges which probably in hindsight I could have done without. Each job change brings new learning which I struggle with now. Please don't rush back to work, take your time and do it gradually. Hopefully you will have a sympathetic employer and if so take full advantage of what they can offer in support. I wish you all the best, please don't think you are abnormal in your recovery, - what you are experiencing is normal, just take your time. Clare xx
  3. ClareM

    My Sister by Clare

    I hope your sister one day realises what a great sister she has. It does sound to me like her mood is very low at present and when someone is not open to suggestions re this it can be a hard place to come out of. I am sure her husband not being sympathetic is not helping, have you asked him to take a look at his site, that may help with his understanding. I am so lucky I had a supportive family around me, though even they were a bit dismissive sometimes. Unfortunately SAH is a hard thing to recover from and made even harder by the fact that we all look so well. Have you thought about maybe writing your sister a letter explaining how you want to help but are finding it hard getting through? Maybe suggest she has a look at this site too it may make her realise she is not alone. As Karen says, the location of her bleed can cause different effects so it may be worth having a chat with the unit where she was treated for advice. I wish you luck with the GP, unfortunately not many have had experience of SAH so are hard pushed to offer constructive advice. Good luck, keep trying ....... Clare xx
  4. ClareM

    My Sister by Clare

    Hi Clare, you don't say how old your sister is or if she is married/children? 3 months is still early days but she should be starting to feel a little better now. I am surprised at the TV, although I watched I often could not stand the noise so had to watch with the volume well down. It could be that she is suffering from some mood change post the bleed, so you could be right thinking she could be a bit depressed. If so why not have a chat with the GP and see what they think. Depression can be common after a life changing event, I'm not suggesting medication is the answer but maybe talking to someone who is not emotionally involved with her may help. Is she worried about going out? It could be that she is frightened that it may cause another bleed or that all the stimulation when out and about is too much for her. Have you asked her what she would like to do if you took her out? I know venturing out for me was daunting to begin with and I was often keen to get back asap. Short trips are best, possibly to places not to manic. Shopping is still after 3 years often too much over stimulation for me, hence I shop online a lot now. Don't forget to look after yourself too as well as caring for her! Let us know how you get on. Clare xx
  5. ClareM

    My experience

    Hi Mandy, welcome to Behind the Gray. Sorry to hear about the problems you have had since your SAH, it's very hard coming to terms with the new normal after such an event. You don't say how long ago this happened and if you are back to work yet. I too have found that my personality has changed post bleed and my emotions are all over the place. I cry at the drop of a hat which can be a bit embarrassing some times. Unfortunately as your Gp has said this is probably irreversible but don't give up hope. Ask to be referred to see a Neuro-psychologist for an assessment. Not only can they see if you have any cognitive deficits post bleed but can also help with the emotional side of things. I have seen mine for some time now and she has been really helpful in how I deal with life now. Don't give up hope! Clare xx
  6. We are always here for you to rant Joan. How frustrating to find out that had the medication not been stopped your sugars would have been on. I would put in a strong complaint at your doctors. Try not to get too down, hopefully in a few weeks you can get rebooked in. Clare xx
  7. ClareM

    1 year today!

    Congratulations on your first anni-versary, glad to hear you seem to be doing well - a nap at the end of the day is mandatory for sah'ers xx
  8. ClareM

    3 years and counting....

    Congratulations on your 3rd Anni-versary Weedra. Yes we may never meet each other but we all share a common bond. You are just behind me, my anniversary was in February and I still struggle sometimes with the new normal. So good to be able to share here! Clare xx
  9. ClareM

    Complicated SAH

    Hi Lori I too had a non-anuerysmal bleed and have been told it was large. I asked where my bleed was and was told by the nurse specialist the following; The blood from your haemorrhage was located in the sylvian fissures, basal cisterns and extending down the brain stem into the foramen magnum. There was also some intraventricular blood in the III ventricle and occipital horns. My haemorrhage was extensive and caused me to have hydrocephalus for which I needed an extra ventricular drain for 8 days. No cause was ever found despite 2 angiograms and an extensive MRI. Fortunately my child bearing days are over so I do not have the dilemma over getting pregnant, I think you can only take medical advice on that. I think you need to have this new MRI to see if they can shed anymore light on what caused your bleed. Unfortunately I think it is fairly common in non aneurysmal bleeds that no cause is ever found - despite us all wishing otherwise as it would answer the unknown. Good luck keep us posted Clare xx
  10. ClareM

    13 years post SAH today.

    Happy anni-versary Karen, looks like you had a lovely day, the food looks pretty good too As Paul says your are an inspiration and it took an inspirational woman to set up what has become an amazing support to us all. Thank you Clare xx
  11. ClareM

    New - Reassurance Needed

    Just out of interest have you asked for your wife to have a neuro psychological assessment? This would find out if she has any cognitive deficits which may mean she is entitled to help with the children. With a try , ask your gp. Or neuro unit for a referral. Also you say you have recently moved to a new area would family not be prepared to come and stay for a short while just to help? I just think that without some support your wife is going to find the road to recovery very hard 😥 clare xx
  12. ClareM

    New - Reassurance Needed

    Hi welcome to Behind the Grey, glad you found time to find us in amid your busy chaotic life 😀 Sounds like you have had a very rough time in the last few months you seem to have coped with it amazingly. Looking after four children without a SAH would be hard enough so it must have been a real struggle. You say you have support from your family but no other external support. Maybe this is what you need to look into for your wife over the next few months while she recovers. Have you considered contacting Headway? They are a brain injury charity who may be able to give you some help or advice on who could give you some support. You also say your wife wants reassurance, get her to come on this website and read all the stories, that may help her realise she is not alone. I hope you manage to return to work and I hope that your wife manages to recover. Try to make sure she gets as much rest as possible with four children though I can imagine that would be very hard. Take all the support that is offered to you, good luck keep us posted. Clare xx
  13. ClareM

    ongoing issues years after brain haemorrages

    I hate to say it but your current job with a need to remember numbers is possibly not your best bet! Prior to my bleed I was known as the walking phone book, I could remembers numbers so easily. Now it takes time and repetition, repetition, repetition - if you get what I mean. The only tip I can give you is write EVERYTHING down. My life has become one long list, but it does help. Good luck!
  14. ClareM

    ongoing issues years after brain haemorrages

    Hi Robert, welcome back! Sounds like you really need some support, I hope that your meeting with Headway and talk to doctor can help you. I suspect that the majority of the problems you describe are related to your brain injury and you need help learning to cope with the changes have experienced. I have had to change my job twice since my bleed due to stress and anxiety. Where I work now is much better for me but I still miss my old role and the way life was pre-bleed. It's very hard coming to terms with the new normal and I think we all fight against it. Letting go and starting to live as you are now is one of the hardest things to do especially as it was all thrust on us so suddenly. I have had the help of an amazing neuro-psychologist who is still helping me with the transition, I don't know what I would have done without her - probably crashed and burned long ago! I hope you manage to get some help today, please come back and tell us how it went. Clare xx
  15. ClareM

    Personality changes?

    I think it is fairly common to have personality changes after a bleed. I know I can get very frustrated when I am tired and the act out of character. Last night we were unable to get a taxi home after a meal and drinks with friends. I was tired and basically threw a paddy! Stopped short of stamping my feet but found it very difficult to control my emotions. Are you in the UK? If so please go back to your GP and see if you can be referred for some type of counselling to help you come to terms with things. No one should feel they are on the scrap heap so take action and get some help, it is out there. Good luck. Clare xx