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Everything posted by ClareM

  1. Sad sad news Gem at a sad sad time. My thoughts are with you and your family xx
  2. Congratulations on your anni-versary Kathy. Good to hear that you are recovering well and enjoying the new normal. It certainly does take time and every year brings changes and often improvements. I'm 5 years out now and have forgotten how I was before though my family say there have been changes. Sounds like you have your work cut out looking after your two adopted children however it must be really rewarding - well done! Hope you continue to find support through BTG. Clare xx
  3. Hi Greg and Gemma, great to hear how you both are. I too have just passed my 5 year mark and like Gemma feel I have plateaued. It's strange now that I have difficulty remembering what I was like pre bleed. I miss my old life though particularly my job and the fact I could do so much more without getting fatigued. I am fortunate that I do not have any long term issues other than memory and fatigue. I exercise regularly and manage to work 4 days a week. However I am now at a point where I think I need to stop pushing myself and sit back a little. I am investigating the possibility of reducing my hours further and spending more time doing the things I want to do and seeing the people I want to see. I have spent a lot of time pushing my self to be able to get back to the old me, but now I have forgotten who that is it's easier to start making new plans. Life is so short and there are lots of places I want to visit and things I want to do before I am too old to be able to do them. Clare xx
  4. If that secretary did not have the MDT summary on her screen she must have had computer failure or lost her log in! MDT summaries are clear to see on patients records whatever programme the Trust uses. I'd keep on at them Sarah, or go to PALs and make a complaint. Fingers crossed for you. Clare xx
  5. I really feel for you Sarah as it is a horrible situation not having the information you need to put your mind at rest. I can only reiterate what Sami has said and what I know through my experience of being part of an MDT. If they considered it life threatening or serious you would have been seen by now, Doesn't help with your anxiety which I am sure is through the roof. Try and think positively and if you haven't heard in a week, give the secretary another call or even try and email them. That way it's documented and has a 'paper' trail. Thinking of you xx
  6. Sarah my advice would be to call the author (doctor) of the letter’s secretary. Advise them you have been given a copy of the GP letter and it has caused you major concern. So much so that you are requesting an urgent appointment with that Doctor. Doctors can choose whether to copy patients in to hospital letters but as patients have a right to see them there should not be any information in them a patient should not see. Get on that phone first thing and take the first steps to getting some answers. The only thing I can say is that after a case has been to MDT if the patient needs to be seen urgently it is noted and multiple people would be aware. Good luck tomorrow and keep us posted - sending big cyber hugs xx Clare xx
  7. Hi Liz, must be a very anxious time for you. I am sure if the neurosurgeon thought there was a high risk of rupture he would have operated sooner. Try to keep yourself occupied, I expect you have a lot of Christmas prep to complete as it looks like you will be in for the 25th? I am sure there are others on the site who have been through the same, hopefully they will offer you advice and tips too. Clare xx
  8. Congratulations on your anni-versary, glad to hear you are learning your limitations. I think that is one of the hardest things post bleed particularly with regard to work. As Michelle says be kind to yourself, it’s a long road but hopefully not as lonely knowing you have people here on BTG who understand. take care xx
  9. Casey I suspect it was a side effect of the medication. Anything in that line of drugs always leaves me with a massive ‘hangover’ effect the following day. As Macca says read the patient info leaflet and speak to the prescriber. It may be that if you took in earlier in the evening that the effects the following day would not be so noticeable. Good luck clare xx
  10. Hi Jenni Please stop torturing yourself over not going to the hospital earlier, it may well not have made any difference to your outcome. A lot of people are misdiagnosed at the start which can cause delays as long as yours. The fact you need to focus on is that you are here and although you have vision problems you can see and hopefully things will get better. I believe you have an ophthalmology review in January? (just trying to remember what you have said in previous posts). I think we all wonder what would have happened if we had been treated sooner. I was left from 8pm until 4;30am in a hospital side room with worsening hydrocephalus. It wasn't until my husband kicked up a fuss that I was moved to the nearest neuro hospital, I often wonder if my outcome would have been different if I had been treated sooner. However it is what it is, we are here and we need to be able to mourn our old selves and slowly move on. As others have said it is really early days for you. I was unable to face shopping for a long time, too much over stimulation with all the lights, noise, colours etc - and that was in March! I still struggle shopping, often too noisy and busy but I do go and honestly the Christmas stuff is much better now for me. I'm sure your little girl realises that her mummy has been unwell and is struggling a bit a the moment. But it will get better you just need to take time and find other ways of doing things. I internet shop a lot now it's just so much easier on the senses. You may find that this year you can't do all the things you want to do with her but hopefully this time next year you will have improved a lot and be able to do them then. Take it easy and relax, spend some time with cuddles and reading Christmas books together - or looking a the Christmas catalogues so she can chose what she likes (then buy online ) Be kind to yourself, things will get better maybe just not as quickly as you'd like. Clare xx
  11. Sorry we are unable to give medical advice on the forum. your best best is to speak to your primary care provider or neurology dept for advice. I’m sure they will guide you in the best way. Sorry can’t help more Clare.
  12. Hi Jenni as the others have said you are really early days in your recovery. lots of good advice given already and I will add to it by suggesting you get some noise cancelling earplugs to wear to the cinema. You will still be able to hear but it will soften the often loud soundtrack of a film. Noise is a major issue for me post bleed and I struggle in a noisy environment. Shopping has lost its appeal so I do a lot online much easier on the brain! I hope you continue to recover albeit slowly, we’ve all been there so keep asking questions and we will help with tips and suggestions if we can. take care Clare xx
  13. Hi Margaret I work as a health professional for the UK NHS. I moved into this employment after my NASAH 4 years ago, as working in community was too stressful. I have never worked full time hours since my bleed, I think I would find it very hard. I started back doing 34 hours a week and currently do 30 hours a week over 4 days with a day off mid week as a recovery day. I am currently contemplating dropping another day...... In answer to your question does anybody work full time in the health profession after a NASAH - I don't know. I have been told that not many people return to full time work post bleed which I find hard to believe. However, in my experience, and I have made a good recovery, I think it is hard. Long hours may not be your best friend, how many hours at a time have you been doing so far? You would need to factor in regular breaks and a good work schedule which allows recovery. I hope you manage to come to an acceptable plan with your employer, keep us posted! Clare xx
  14. Hi CM Behind the Gray is a UK based online support group but we have members from all over the world. There are lots of tips and advice on the site and hopefully some members from Canada will see your posting and get in touch. You are still very early in your recovery, please don’t rush back to work, 3 months is quite soon. Phase back slowly and consider reduced hours. What is your employment? Feel free to ask any questions on the site there is always someone there to help with their own advice and experience. take care Clare xx
  15. Hi Lori, thanks for sharing some of your story. My bleed happened too when I was exercising but I have been told that it would have happened without. I have actually found exercise to be my saviour in my recovery so when you are feeling better and your vision has improved speak to your healthcare team about getting back to it. Take things slowly you are very early in your recovery, and drink plenty of water it really helps with the headaches. Clare xx
  16. Happy anni-versary Colleen, hope the tooth extraction was painless! xx
  17. Hi Ami, I too have eye twitching, not very often though. I had it pre my SAH so can't relate it to that. I do get it when I am tired though and as fatigue is such a legacy of SAH maybe that's why it is happening to you. It may be worth a check up with your optician, hopefully he can put your mind at rest. Clare xx
  18. Sorry I missed your anni-versary yesterday Louise, a lovely posting from you. So glad you found BTG and are part of the family. Hope you and Ronnie had a lovely evening and you are enjoying the champagne and chocolates. Clare xx
  19. Hi Sarah I too have problems with attention deficit, it is one of the most lasting legacies of my bleed. I have difficulty paying attention which means I forget things. I thought it was my memory and while this plays a part, more importantly for me, if I am distracted I have difficulty refocusing which is all to do with my ability to pay attention. Get your Gp to do a simple blood test, that will tell if you are perimenopausal (in the period prior to menopause) and may give you some of the answers you are looking for. I think your fatigue may well just be something left over from your bleed. I still suffer now, 4 years post, and find I have to rest more often. It is one of those symptoms that people who haven't experienced a SAH find it hard to recognise. When you see your GP to discuss your medication change, I suggest you ask for a test for the menopause and also for other diseases that cause fatigue such as thyroid. Hope you get some answers. Clare xx
  20. Glad you managed to get through the procedure Sarah, though it sounds very stressful. Hopefully the results will concur with what he has suggested, I am sure that will be a relief to you. Keep us posted and in the meantime relax xx
  21. Yes Sallios, I too don’t remember dreams. Have noticed that for the last few years. I also don’t remember what I have read if I read a book in bed at night. Takes me ages to get through a novel nowadays. Clare xx
  22. Hi Locotex, welcome to BTG, glad your wife found us and that you decided to join too. I had a very similar story to you and am now 4 years post bleed. I hate to tell you this but I couldn't drive 500km over 2 days even now, the concentration would probably leave me floored for a few days. I presume you are not in the UK as if you were your licence would have automatically been revoked for a minimum of 6 months after the EVD (temporary drain) placement. I actually didn't drive for 10 months post bleed and even now don't drive much. To put it into perspective I drove 20 miles (admittedly in very heavy traffic on a motorway) a few months ago and actually cried when I got there. It was just too much concentration needed and when I got there I spent the whole day worrying about getting back! I think you need to stop expecting so much of yourself, take things a bit slower and don't push. Start slow and gradually increase what you do. Expect to feel floored on a regular basis and try and learn from your mistakes. I went back to work after 6 months but over the last few years I have changed jobs twice and reduced hours too. Even now I think I push myself too hard and should do less but I am a very driven person and it doesn't sit well with me cutting back. On a positive note physically I have re gained my fitness and regularly run 5 miles three times a week with no problem, in fact it helps with the stress. Good luck with your recovery just don't push too hard! Your brain won't thank you.
  23. Congrats on your 4 year anniversary Chris. Good to see that you can still see improvements, I hope they continue. Keep on running my cross Atlantic run buddy. We are proof that you can get back and better to fitness! Clare xx
  24. Go for it Bri and enjoy that feeling! 😀 clare xx
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