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ClareM

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Everything posted by ClareM

  1. 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
  2. Go for it Bri and enjoy that feeling! 😀 clare xx
  3. Sarah I do feel for you having to make such a decision. You have lived with this uncertainty for many years now and now it seems it’s crunch time. The only advice I can give is to trust your neuro team. They have kept you safe so far and only have your best interests at heart. I have a patient who needs a procedure that has a 15% mortality rate which he constantly focuses on. I have suggested he focus on the 85% he will get through it. Surgeons have to give odds so you are well informed and patients always fixate on the failure % not the success which in your case is so high. You survived the original event event that had a much higher risk of mortality so have trust. I hope your angio is soon so you can get a full picture to enable the team to help you with your decision. Take good care Clare xx
  4. Ben when you apply for travel insurance make sure you call them rather that doing online. Have you had an MRI since your bleed? I to had a NASAH and had one at 3 months post bleed. It found nothing and no cause for the bleed. I was given to go ahead to fly 3 months after my bleed by my neurology team and travelled to Spain soon after. Because my risk of a bleed is actually less than most other members of the public - due to a clear MRI - I have never paid anymore for insurance and have travelled far and wide since with nor problems other than fatigue. I am not saying your case will be the same but check. I think a lot of people who have had SAH with aneurysms that were clipped or coiled fall into a different category as I suppose there is always a chance theirs could rupture again. If there is nothing to rupture there is no more danger than anyone else who has never had a bleed. Or in my case less as they have looked at my brain and not seen any aneurysms. Phone around and see, I'd be interested to hear how you get on. Clare xx
  5. I had the same thing Bri and waited 10 months to get my licence back. Never heard it was due to possibility of seizures just knew it was automatic 6 month ban. You wont be be able to challenge it so unfortunately it will be a matter of acceptance. Hope your job doesn’t depend on a licence. Small consolation but you may be entitled to a free bus pass through your local council. Good luck Clare xx
  6. Hi Ami Congratulations and well done for completing the half! I know how hard that would have been, my max is 10 miles. I din't complete that until 18 months post SAH so you've done brilliantly. I can only imagine how you felt when you crossed that line - I am sure there were tears. You should be really proud! Now have a good rest because I'm sure you'll be feeling it tomorrow xx Clare xx
  7. Hi Irene, statins and blood thinners are often prescribed after a stroke. If you are concerned go and have a chat with your GP. Welcome to the site. be good to hear more about you. Have you considered doing your story in the Introduce yourself forum? Clare xx
  8. Happy Anni-versary Andrea, always mixed emotions when that day comes around each year. Hope your scan goes well next week, must a a bit of a trip for you! I’m sure your mum will be with you in your heart. Clare xx
  9. Glad to hear you are making a good recovery. Take it slowly, the fatigue will be the thing to watch out for. It’s hard when you seem to be fine on the outside - on the inside your are still recovering so beware. Good luck with your appointment in September. Is there a nurse specialist at the unit you were treated who you ask about some gentle exercise before then? I can understand how frustrating it is not to be able to run! Clare xx
  10. Hi Bri welcome to BTG glad you have found us and are finding the site useful. I too too am a jogger, actually had my bleed whilst out running 4 years ago. Like you my bleed was non aneurysmal and I had an evd for 8 days - so a very similar experience. I was 55 at the time of my NASAH in Feb 2015. I started running again about the end of May 2015 by joining a C25k group building up slowly. This was after having an MRI and all clear to run from my neurovascular team. I gradually built up distance again taking it slowly as it was obviously a worry I would have another bleed - although the mri said I wouldn’t! I now run approx 5 miles, three times a week, with a group or friends. Have completed the Great South Run twice and intend to do it again this year. To me running is my saviour. It helps with stress which I suffer from at work and I feel I do it more for my mental than physical health. I can be brain dead after a working day but always feel much better after a run so I can understand how you miss it. Get the all clear from from your team, make sure you drink plenty whilst running and get back out there. Good luck, feel free to ask any more questions. Look forward to hearing how you get on! Clare xx
  11. Hi Sheila, welcome to BTG , glad you have found us and are finding the site useful. Sounds like it was lucky someone called that ambulance! You will find lots of like minded souls here on the site, all with different stories to tell. But the common thread is fatigue which could well be an ongoing problem. I am 4 years out and still suffer from fatigue when I push too hard, work being the main culprit. Take things slowly and you will find your new normal. It may be a bumpy road but hold on tight and you will get there. Be good to hear more from you. Clare xx
  12. Hi Diane welcome to BTG glad you found us. Out of interest when did you have your bleed? As Jean says we are all survivors and coming to terms with what has happened to us is one of the hardest things to accept. The changes this forces on your life can be difficult to process and adapt to but you will with time. My bleed was 4 years ago and I still daily have to think about the changes it has forced on me. Work has never been the same it’s different now. Not worse but different and not what I ever imagined I would be doing. However many changes I have been through I feel that each one was meant to be and all of them were post the bleed. I too was in a very stressful job and do wonder if that played a part. I know I can’t deal with stress now and avoid it if I can. Take it slowly and don’t rush into working too many long hours. You’ll get there! Clare xx
  13. Hi welcome to BTG, glad you have found us and are finding the site helpful. Mine was also a non aneurysmal bleed and I too was fairly fit pre event. I was actually running when mine started and ended up collapsing and being blue lighted to the nearest hospital. It's a long recovery journey but take it slowly and you will get there. I'm back running again and that helps with the stress I suffer from work. Be prepared to adapt your lifestyle to fit in with your capabilities and accept the new normal. Be good to hear more from you. Clare xx
  14. Well done Rebecca (and Mum as I am sure you have given her endless support). Something to be really proud of, I know how hard it is learning new stuff after a bleed so hat's off to her! Good luck in the new job, I am sure she will be a great asset to the NHS! Clare xx
  15. Hi apart from the prostrate problems your husbands bleed sounds very similar to mine. No aneurysm detected and hydrocephalus drained using an external drain. Mine was 4 years ago, I have recovered well except for the invisible signs - weak memory and fatigue. I have just had a very busy socially active weekend and it has floored me. I too had headaches to begin with but took regular paracetamol and drank plenty of water - it really does help. My nurse specialist did not seem to think that the hydrocephalus would cause any problems once dealt with by draining. I do find though that if I get stressed or anxious that I get headaches and stabbing pains in my head. They pass with time and I use them as a sign now that I have done too much. Unfortunately there is nearly always a lasting legacy of fatigue and poor memory after sah and it can go on for years if not indefinitely. Very hard when to everyone else you look fine but you know inside you're not. Keep up with the exercise, it helps with the mood and fatigue. I can be brain exhausted but after a run feel much better. Glad to hear you have sympathetic employers - they are often few and far between! Take care, Clare xx
  16. That looks really interesting Louise. I may look into getting one for me self as I struggle with all the airport noise. Clare xx
  17. Happyish anni- versary Jan. I hope this year brings some positive changes to your life. I am just ahead of you on the journey and too feel my life has changed so much since the big event. I too feel I lost a lot of people along that journey but am heartened by the new ones I have found. Glad you have some people you can you can trust and rely on. Hang on in there girl. Fingers crossed for your move. Clare xx
  18. Congratulations of your 5th Anni versary Michelle. You are an inspiration to many here on BTG. You have had a hard year, I hope you are now seeing the light at the end of the tunnel and that the neuropsychology testing and support has helped you too. Clare xx
  19. A lovely tribute Neil she sounds like an amazing lady. Deepest condolences Clare xx
  20. Hi Ami, I echo what Skippy has said, there is no way I could work those punishing hours now and I doubt whether your brain will cope either. You could end up making yourself quite unwell and stressed. I did this to some extent in my last job and ended up going off sick and eventually changed my job and working hours. You say your immediate boss has been helpful and understanding so far, let's hope he continues in that vein. Maybe he could explain to your colleagues your limitations. It may be that you will never be able to work those punishing hours the same way you did and that you may have to make permanent changes. Sad but it may be something you have to consider for your own sanity. Sorry to sound so harsh but you have had a life changing event happen and you need to protect yourself. I hope the meeting goes well and that you are supported by your employers. But seriously maybe now is the time to make some changes. I didn't think I wanted to do that but now I have made those changes I am much happier. Good luck, keep us posted and keep venting here on BTG, we do understand xx Clare xx
  21. 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
  22. 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
  23. 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
  24. 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 😀
  25. 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
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