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Everything posted by ClareM

  1. ClareM

    My story up to now - Maria

    My heart goes out to you Maria, such an awful situation to be in. I hope Paul is getting the care he needs and that you are managing to keep in contact with him. Big hugs xx Clare
  2. I know exactly how that must have been Julian - terrible. I always avoid place with loud noises now, babies crying is another big no no for me, luckily I haven't any grandchildren yet! Glad to hear you are well. Clare xx
  3. ClareM

    Feeling scared

    Hi Sarah I read your post and really feel for you. Employers always stay just that close to the line to protect themselves with no care for the employee. Not much you can do in this situation except ride it out, they hold all the cards and will play them as required. Regarding your headaches I would predict that they are due to stress but would suggest you get them checked out to be certain. Stress can cause headaches. I had a period of stress recently and found I was getting a lot of stabbing pains in my head. When I sought medical advice I was told they were most likely caused by stress and true to form when my stress lessened so did my headaches. Try to relax, get some medical advice and take comfort from the fact that repeat SAH is very rare. I hope you get your employment issues resolved my only advice would be to do what is best for YOU, no one else. Stuff the company - they will only be thinking of themselves too! Clare xx
  4. ClareM


    That flat week Sue is your bodies way of telling you it’s too much. Slow it down and it will happen less. My only way way of learning in the earlier days was by making the mistake and paying for it! You’ll get there 😀 Clare xx
  5. ClareM


    Hi Sue You really should take the advice of your rehab doctor as he may have a reason for giving such directives. Your work routine does seem a bit punishing is there any way you could change it to make it a little easier? However on a personal opinion, I too was running when I have my bleed and have successfully returned to that. I was walking around the same time as you and started doing the couch to 5K program at around three and half months. I gradually built on this and now run 5 miles up to 3 times a week. However I am 3.5 years post bleed with no coils or clips. I find the running helps with my stress which lessens my fatigue. I work four days a week with Wednesdays off as my recovery day. It’s taken a long time to reach the point where I feel settled and happy with my work as stress does pay a huge part in my life. I would ask your your rehab doctor which parts of your routine he thinks is likely to cause more problems and go from there. Well done on your recovery so far sounds like you are doing well - just don’t over do it. Clare xx
  6. Hi Ruth Welcome to BTG, glad you found us, sorry it wasn't earlier in your recovery. I too had a NASAH with an EVD but it wasn't perimesencephalic mine followed more of an aneurysmal pattern which was why they were convinced it was due to an aneurysm. I have recovered well without any major issues, I just have a terrible memory and am always tired. Physically I am fit and exercise regularly. I was running when I had my bleed and have managed to get back to that, I have completed the Great South Run twice since it happened something I am really proud of. Odd but running makes me feel less fatigued - it clears my brain I think fatigue is often an ongoing issue. The Nurse Specialist at the unit I was treated said it can be a lasting legacy and just something you learn to live with. Have you tried to make some adjustments since your sah as that is key in recovery I think? I hope others post here, there are many NASAH members who will have stories to tell. I know Chris from across the pond is one and he like me is a runner Clare xx
  7. I would contact the unit you were treated at for advice as well as the DVLA. There are rules and regulations and the DVLA are notoriously slow but best to get it right than be illegal. Hold off selling the car though ? Clare xx
  8. Hi Bev sounds like you have had a rough time of it but are doing all the right things to come out the other side. I too was left in my diagnosing hospital for many hours initially with no treatment. It was my husband kicking up that prompted my dash to a neuro unit who operated immediately on arrival. Hydrocephalus and and EV D for a week not much memory of any of it. Vision and hearing are often common problems post bleed. I still suffer in noisy environments and avoid them. As Daff says ear plugs can be useful and keep on with the dark glasses. I hope you can continue to recover well, take it slow and be patient. Drink as much fluid as you are told to and rest rest rest. Take care Clare xx
  9. ClareM


    Hi Angela Welcome to BTG, glad your partner found us and helped write your intro. You are certainly lucky to have someone who cares and loves you enough to try and help in your recovery. It's a long road back but sounds like you are making good progress on that journey. Take it slow and steady, drink plenty of water and rest, rest, rest. Also try and avoid stress as that will affect your fatigue. I am over 3 and a half years post mine and still have moments when I stutter, struggle to find words and forget what I am saying mid sentence. But I am so much better than the early days. Diaries and written notes are my life now so you have made a good start with yours. Take care and take it slow! Be good to hear more from you. Clare xx
  10. ClareM


    JoJo going back to your question when will I feel normal again? You will feel normal again at some point but it will be a new normal and will take some time for you to get used to it. My bleed was over 3.5 years ago and I think I have reached my 'new normal' though I still have days when I am floored - usually after doing too much. Check with your neuro unit and Gp and you should be able to get back to exercise soon. I do wonder if you have gone back to work too early. Most people have a minimum of 3 months off after a SAH then phase back slowly. Make sure you take it slowly and if it gets too much take time out to recover, don't just plough on as you will probably make your fatigue worse. I have got back to exercise and find it is a stress buster now, so hopefully you can get back to that soon and begin to reach your 'new normal'. Good luck! Clare xx
  11. Jojo you can get back to it ?. As as I said earlier in the thread I too run and am now running more than ever. I just completed the Great South Run - 10 miles - for the 2nd time after my bleed. Get back out there and build yourself up slowly. You will be amazed at the stress busting qualities of a run. Good luck. Clare xx
  12. Hi Vicky Sorry we don't seem to be able to give you more advice about amyloid angiopathy. Have you tried to contact the unit you were treated in to see if there is a nurse specialist you could talk to? Lots of units have such a person now who is often able to give good clinical advice about your diagnosis. The neurologists are often not as helpful and 'patient friendly' as nurse specialists, I don't know why but this is often reported on the site. Try and give them a call tomorrow and see if someone can give you some time and advice. Good luck Clare xx
  13. Hi Vicky glad you have made an appointment to speak to your gp. Make sure you write all your questions down and leave room on the page to write answers down too. I dont know know where you get the idea that you only get 10 mins consultation time on the NHS, patients in our clinics regularly have 30 mins or more. I saw my nurse specialist after my NASAH and she gave me all the time I wanted. She is still happy to answer questions now 3 years later so call the unit you were treated at and ask to speak/see someone. I hope you can manage to try and stop worrying as this will only worsen your symptoms of fatigue etc. Unfortunately the only way this will happen will be by getting support so get on to the hospital soon. I feel for you and hope you get some answers soon. Clare xx
  14. Hi Charlie, glad the advice Sami and I offered has been helpful. Take your phased return very slowly, it's easy to get carried away and think you can do more than you really can. I love my new hours now, 30 hours over 4 days with Wednesdays off - my recovery day. I am glad you are finding the site helpful, I know I did in my early days. Good luck! Clare xx
  15. Hi Charlie I echo what Skippy says everyone is different. At five months I was mid phasing back to work and struggling with the hours I had to do. By a year I realised I was never going to be able to my old job so changed and reduced my hours. Since then I have changed jobs again due to stress and I can now - at 3 and half years out feel I am settling. I still get days when my head feels like cotton wool and am usually floored by Fridays but it's mainly a matter of coming to terms with the new normal and what is best for you. Unfortunately the isn't a one size fits all so it's seeing what works for you and you will make mistakes and feel the consequences. Just try and be kind to yourself and take it slow. And when you do realise that you have done too much take that on board and adjust how you do things in the future. You'll get there eventually, we all do it just takes time and patience. Good luck and keep us posted on your recovery. Clare xx
  16. Hi have you tried opening the messages via the envelope at the top of the BTG home page to the left off your name? Clare xx
  17. ClareM

    Joan saffy

    ? Good luck Joan xx
  18. ClareM

    One year anniversary

    Happy Anniversary, glad you have managed to travel back to to Cyprus again, enjoy! Clare xx
  19. ClareM

    Body Chills

    Hi Ann This is not something I can say I have suffered or even heard anyone else suffering from post SAH. If you are unsure go to your GP or contact the nurse specialist at the unit you were treated. All to often we blame the haemorrhage for problems that are nothing to do with it so get it checked out. Good luck, keep us posted. Clare xx
  20. ClareM

    Returning to work?

    4 months is really early days, you need to step back and take stock. I returned at about the same time but on 2 hours a day for 2 days increasing to 3 hours the next week. I t was an incredibly slow return to work over several months and i have never got back to the 41 hours I was working pre bleed. I now work 30 hours over 4 days, Monday Tuesday, Thursday, Friday - I have Wednesday off for recuperation and I still need it now 3 and a half years post bleed. Take stock, consider your options and readjust. I have changed my job twice since my SAH something I never thought I would do in my late 50's but had to for my sanity. Good luck but more importantly think of YOU, no one else will and think of your options using the wider picture. Life is different now ........ Clare xx
  21. I think we all get odd symptoms post bleed and it is all too easy to blame it on that. However I think we need to be mindful of our general health and make sure we get things looked at by our GPs. It could be an infection or purely wax but get it looked at either way. Anxiety is also a common complaint, I know I suffer and have difficulty dealing with it. Talking therapy can help, ask your GP for a referral. Clare xx
  22. ClareM

    17 years on

    Hi Lisa I agree with Super totally. SAH can change us and some of the changes are often not so good. I think it is worthwhile you having a chat with your GP although there may be problems with confidentiality. Even if it's to get some support for you on how you are dealing with him. I hope you get some answers. Clare xx
  23. Hi Sarah I know exactly how you feel. So many people say to me that they think my memory is fine. It may be fine to them but to me it's not a patch on what it was. And it's not everything, it's more my 'attentional' memory. If I'm not paying really good attention its' gone until I receive a verbal or visual reminder and that's not a definite either. Earlier this evening I said to my husband I needed some parmesan on my pasta - he reminded me I'd put it on not more than 5 mins previously .............. And it is frustrating when other people say you are fine when you know you are far from. I think that is one of the hardest things post SAH which only we who have suffered understand. Keep coming to BTG, we understand! All I can say is the more you repeat things the more they 'stick' in the memory. Repetition is my best friend and hopefully will become yours too Clare xx
  24. Hi Pat I too echo what Sami says. I am 3 years post NASAH and still suffer memory problems. I have had in depth help from a neuro psychologist who has helped me no end with my recovery. She has pointed out that my memory is affected by fatigue and also by my mood. I experience low mood and this is worsened by fatigue which then leads to the memory problems being more pronounced. Bit of a viscious circle and it's hard to break the cycle. I think fatigue is one of the most difficult legacies of a bleed, learning what your limits are and making sure you don't go beyond them. I am still learning now and have spent many a Friday evening totally floored by the week. And that's with a mid week recovery day off! My advice would be to step back a bit, very hard if like me you were a 'full on' type person pre bleed. My neuro psych has told me that as my health is one of the most important things to me that I have to work towards 'good health' and that means being kind to my self and not pushing the boundaries. It's hard but I'm learning I think the psychological effects of a bleed can carry on for a long time post bleed, we are all looking for answers which sometimes no one can give us. My GP is hopeless too regarding advice, they just don't have the experience of dealing with our problems. A support group is a good idea which is why I have found BTG so helpful in my recovery. Good luck, you'll get there eventually - but it takes time and perseverance by ourselves to accept and embrace the 'new normal'. I'm still working on it! Clare xx
  25. ClareM

    Kay - new member

    How exciting Kay. Congratulations xx