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CharlieD

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  1. That's a lovely post to read and know that she still has a great life ahead of her. All the best.
  2. Congratulations on 5 years! Its lovely to read you have made such strong friendships.
  3. Hi Ami It sounds like your colleagues are not being very supportive considering all you have been through which is a shame but that is their problem. You just worry about you. I thought this might be useful. https://www.headway.org.uk/media/6580/managing-fatigue-e-booklet.pdf It is a great way to understand fatigue and could help your boss and colleagues to understand. Good luck.
  4. You are not the only one. I have for sure had those thoughts more times than I can remember. I have a friend I made online and in 1 year she said she has genuinely only worried maybe 5 times it was happening again. I said I usually worry that in a day. I think some people just react differently and can't do believing it was a one time thing and move on as well as others. I am def one of them! I do think time has helped me the most and I hope it will continue to. I have also started therapy which is helping. I am better in the days and I try to make sure I rest plenty so I don't feel as bad physically which helps but I do think for me the worry is one of the worst parts of recovery.
  5. Hi Ruth Welcome to the site. I enjoyed your first blog. My experience was almost the same as yours minus the day as a gnome. I look forward to reading your next one.
  6. Thank you all for your kind words. It is a journey to be sure. @ClareM I am working with my neuro to find the right treatment for everything. It depends what day you catch me as to how that is going😆 I know am a big siesta fan. In fact I have one on the floor of my meeting room at work all the time. Lol Wishing you all well.
  7. It seems unbelievable that it has been a year. Lying in my hospital bed and then coming home and being told I will go back in a year. I didn't really believe I could survive a year I felt so bad but here I am. It's been without question the toughest year of my life. I am a different person to who I was, strangely I don't see that as all bad. I know what and who is important now. I found out who my friends really are and thankfully I have lots of them and an amazing family. When I read about people who do it with little support I wonder how they manage I have been left with a brain that does some crazy things, weird sensations and awful head pain at times. The fatigue dictates how I live my life as I have to rest and can't go a full day without a nap. My neurologist thinks I might have nocturnal epilepsy so that is a new problem to overcome but I made it. I worried today I would be an emotional wreck. Well it's not over yet but with lots happening at work, kids to get to school and a generally crazy morning I find myself feeling grateful. Over the last year I have read so many posts saying just be grateful. If I am honest they have made me uncomfortable as after something like this it's very hard to make yourself feel a certain way. I was dealing with my recovery and still am. So I will put not put pressure on myself to feel grateful but to always feel empathy for others and their journey. Thank you for this site. It has helped me enormously when I have needed to scour for information and others who have been through the same thing. I hope to be able to support others in their early stages and I am sure I will continue to have questions. Everyone always says the first year is the worse but one day at a time for me still. Let's hope today is a good one.
  8. Congratulations on your 4 years. And for being able to live with such a positive attitude. This is something I am currently trying to alter my mindset to, as you are right, worrying does not change anything. I was 39 when it happened and turn 40 this coming week. I hope when I turn 44 I can make such a positive post. Take care.
  9. Hi Jimble. I have had an eeg, not had results yet but nothing happened during test so am sure was all fine. It sounds very similar to what you have. I was told to keep a diary of when they happen. I am not surprised you worry after your second. I really hope the MRI is clear and you can get on with your life. I have had a few occasions where I have wondered if I have had tiny bleed but decide to wait and see. Did you know when you had the second?
  10. Hi Dave, I'm glad you are recovering so well. 8 months now for me and am not sure I am where u r but hopefully one day. Hi Bev, I know what you mean. I feel like I go through phases where improvement stops then i see a small change. I felt that a few wks ago. Its like a rollercoaster. I have times when I am feeling better but I do suffer quite badly with head pain and fatigue. It is such a change from how life used to be but my favourite line these days 'it is what it is'. I still think accepting what's happened and coping with anxiety is still one of the hardest parts. We must have had ours quite close together I was in Queens Romford, how about you?
  11. Hi Vicky, I have suffered badly with head pain since my NASAH last May. I rarely have a day without pain. The GPs have not been able to help really I have needed a neurologist to make any real difference. Have you been referred? I feel on my new mix of meds I am going in the right direction but I am constantly being told it takes time. I find a warm flannel on my head and a warmed lavender neck bag (you know the ones that go in the microwave). I completely understand how frightening every headache is. I also do deep breathing when the pain is bad. I know they will not fix it but just a couple of little things that help me.
  12. Hi Bev I hope your presentation went well. I know exactly what you mean with the feeling tired after the head pain. It is strange how the brain can do such crazy things after a bleed and not knowing what is normal and what isn't. Sounds like you are making great progress. Do you mind me asking if yours was an NASAH or an aneurysm? I do have to keep reminding myself to drink more water, it's so easy to forget. All the best Charlotte
  13. Hi Jimble, I have had a number of strange sensations but one that does feel like a rushing or wave from my head to the bottom of my spine. I have been to the doctor about them but don't see my neurologist until Jan and GP just say see him. I thought they were a form of seizure but everything I read said not and will not know until Jan. I am on Gabapentin for the head pain and strange stuff so wonder if that's suppressing things somewhat. What do yours feel like? I read previously that you have had two. I don't know how you stay sane. Sorry to hear you are now dealing with this hopefully diagnosis will make life easier.
  14. Thanks Patc it is nice to hear you are pretty much back to your old self. I can't wait for the sudden weird head stuff to stop. I find that massively impacts my anxiety levels, obviously. Sounds like after 30 years in a class room you have earned the break! Thanks for the advice. I will listen to it all from every one.
  15. Thanks Win I completely know what you mean about seeing people on here and thinking they seem to have a life still. I will do my best to take all your advice and try not to worry. Not sure I am there yet though. I will however be sure to pay attention to the part about listening to my body. To be honest it is good to know I might be 5 months in but I have a way to go, at least I have something to look forward to but I think I know that things will be different. I hope in time different may not mean bad, maybe just slower.
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