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Greg 21.01.15

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Everything posted by Greg 21.01.15

  1. Just in case there was any further interest in this there is a third session being run next week, again online. Here’s a link to the invite and further information: https://www.brainmic.nihr.ac.uk/an-introduction-to-patient-involvement-in-brain-injury-research-virtual-drop-in-session-3
  2. Thanks Louise, I appreciate probably not for everyone which is a shame. We should be aiming for high levels of inclusion in these kind of things. Hope you are keeping well. All the best Greg.
  3. I thought I would share this with you all, as it hopefully might be of interest to some folks. Sorry this is slightly, short notice...... The NIHR Brain Injury MedTech Co-operative is one of the eleven MedTech and In Vitro Diagnostic Co-operatives (MICs) funded by the National Institute for Health Research (NIHR) across the UK. https://www.brainmic.nihr.ac.uk The invite is to an online briefing session from the NIHR Brain Injury MedTech Cooperative. The session will focus on the opportunities that this group has for acquired brain injury survivors to get involved in res
  4. Daff, Thanks for your words and thoughts. Interesting to hear what you said about the swimming. Fitness was a big thing for me pre SAH, though I never was a good enough swimmer to train hard, but I thought it might be good for me now. Boy I was wrong, I did a short 20 minute session, felt lousy for a couple of days afterwards. Not really sure what triggered the fatigue so badly, as in terms of cardio load I had taken it easy compared to other exercise I was doing. Ticked as tried and moved on. I have found the same, walking is the one thing I can do to a reasonable leve
  5. Gemma, lovely to hear from you, nice to know I'm not the only intermittent visitor here! Fatigue, and whether it is improving is something I do wonder about quite a bit. I try to reflect to the anniversary points and think have things changed? I think the progress is so gradual that it is hard to judge within oneself if things are getting better. My brother in law had an Ischemic stroke, about 12 years ago now, and the last time we spoke about this he felt that his fatigue had albeit gradually still improved over all those years. I know its slightly different but I do
  6. Clare, life pre-bleed does seem a long way away, I too can't really remember what it felt like to be able to do what I could then, I know I could do more, but I guess slowly the acceptance of the new life post bleed, becomes the norm. The highs and lows of life are framed within the new context of life post bleed (well most of the time, I still do throw my toys out of the pram at times if I'm honest when things get a bit too frustrating!) You are right, life is short and there are so many things to do, places to go and amazing people to meet, even post bleed there is a whole world
  7. Thanks, as you are probably finding out this is a great place to come, and share with people that understand where you are coming from. No judgement just kind support. It has been invaluable for the last five year!
  8. Hi Daff, Lovely to hear from you. Describing things year by years is a good way of looking at it. Year one for me was definitely, wow what happened there! I really felt I had dodged a bullet, and even to quite late on in year one thought I'd get back to work in some shape or form. It really felt like quite a positive time once the initial shock was out of the way. Year two was attempt at return to work year, which quickly became apparent wasn't going too well at all. I also spent some time that year on a Headway Rehab course, and that time spent with a small number of f
  9. Thanks Macca, good to hear from you. More wise words indeed. Yep throw the joys of getting older in there too! 😁 Cheers Greg.
  10. Thanks Casey. How many times have I done that, ploughing ahead regardless and then paying the price later, one day I'll learn!
  11. Thanks your advice is much appreciated. All very wise words indeed! Have managed to get my head around the idea of doing things in small more bite size pieces for something. For many of the jobs around the house, its a tactic I use a lot. For others likely driving, travelling etc. I can't seem to work a compromise so easily. The volunteering is slightly frustrating one for me. I have been successful ish with doing an hour a week at an after school science club. But that's been rather too intermittent in frequency, and not quite as I hoped. However, I have managed that
  12. Dear All, I haven't visited BTG for a while now, not sure why, I always get such great support and understanding. I think perhaps having found things getting harder over the past year or two, I have wanted to give less "air time" to SAH related problems as they were already taking up more of life than I would wish. This time five years ago, I was just getting started in the gym, a normal session, just a tad late out of work and getting going on the session. Then as we are all familiar with, that thundering pain at the top of my neck. Really thought I'd just messed up a
  13. Cheers Subs, same old same here thanks (in other words not too bad could be worse!)
  14. Good morning All. Just seen this survey request from Headway on Fatigue and thought I would share it. For those that haven't come across Headway they support anyone with a brain injury (they have regional UK branches in all counties I think) and also campaign hard to raise awareness. If you suffer from fatigue post brain injury and have a few minutes to spare, please have a look at the survey, link below: https://www.headway.org.uk/get-involved/campaigns/brain-drain-wake-up-to-fatigue/ All the best Greg.
  15. Evening Vicky, You have my sympathy I live out of the city and relying on busses was not fun, infrequent and unreliable. One thing though if the DVLA have suspended your driving licence then you are eligible for a bus pass. Small conciliation I know, but might as well save a few £'s . There are a few message threads on here re the DVLA and getting licenses back. Yes internet shopping my saviour! I don't like busy shopping places, they drain my energy and bring on headaches, so I venture there only when I really need to, or choose my times carefully! Couldn't live witho
  16. Evening Vicky and all, I'm almost four years out now and I still get real kickers of headaches, normally if I do too much, am run down or am in noisy environments etc. I went to my GP about 18 months ago as I was concerned that I was taking a reasonable amount of paracetamol and ibuprofen in my mind probably too regularly. Long story short, I was prescribed a low dose of amitriptyline and this has helped reduce my consumption of the other analgesics. I feel that the amitriptyline prevents me needing paracetamol to kill the normal daily headaches I was suffering, and as
  17. Good luck using the badge Daff, a nice gentle prompt to folks to be thoughtful. I've not seen anyone using them though I don't get into London as often as I would like. Look forward to hearing how you get on.
  18. HI All A while since I have posted, hope you are all keeping well. Just catching up on some online reading and found some new Headway FactSheets on managing relationships post brain injury, and thought they might be helpful to folks so, here's the web link: https://www.headway.org.uk/news/national-news/headway-launches-new-relationships-after-brain-injury-pack/?utm_source=Email+newsletter+subscribers&utm_campaign=2d7cea2efe-Headway_News_Bitesize_September_2017&utm_medium=email&utm_term=0_53a38ea6e0-2d7cea2efe-433990181 All the best Gr
  19. I have one of the cards, thoroughly recommend, not had to show it yet, but can make a good talking point with friends and colleagues an easy in to talking about our often hidden issues.
  20. My Headway OT lent me a book that I thought it was worth sharing with folks. The aptly titled: " Head injury: a practical guide" written by Trevor Powell (Speechmark Editions/Headway) I'm only about half way through it, and though not specifically about SAH or stroke (but traumatic BI) it is an interesting read about brain injuries especially for those new to this all. Easy to read, and definitely for the non specialist. Would be helpful for both those caring for those with a brain injury or the person themselves. And in there, there was the following that
  21. Thanks, Win, all OK this end, onwards and upwards as they say. Hope you are keeping well Greg
  22. Thought I would share this with the BTG community (sorry should have done this sooner but only just found the weblink....). Headway Cambridgeshire are running a "Breaking down barriers" 13 week course, to help those with brain injuries return to work or to get involved in volunteering. The next course in my region (East of England), is being run in Peterborough, places are limited but I don't think it is full yet. The course is a mixture of OT rehab type activities, CV advice, interview strategies pertaining specifically to brain injury issues, and ideas and resources for voluntee
  23. Same as Broncothor, I had an NASAH, and I was told if I wished to I could run, cycle etc just listening to my body and not going mad. The only suggestion made was that I leave lifting heavy weights alone (I used to weight train quite a bit pre my NASAH). Exercise is something that really seems to vary between folks post SAH, some people can run a half marathon no sweat, others me included really suffer from fatigue if I do to much. Unfortunately what is too much now is far less than I used to, and the first time I went out for a cycle ride post SAH, I flattened myself for 2 to 3
  24. Hi Sam, I am two years out post my NASAH, and headaches are a daily part of life, some days you hardly notice them others days, they can be debilitating. As graham mentioned above, doing too much, is a common trigger, so the best advice is to find where your limits are for now. They for many of us this will improve, and as the months progress you will be able to do more, without triggering headaches, but it can be a bit of a battle of wanting to do more and then suffering the consequences. Some things are instant triggers, noise, large groups, over work, too much exercise but it varies for eve
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