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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 research initiatives, at all stages of these research projects. I “attended” the first of these online briefing sessions a couple of weeks ago. I found it quite interesting and have signed up for further involvement. This group is based in Cambridge, it is a UK wide initiative. As far as I am aware it is purely for UK residents. Hope this is of interest to some of you out there. If this is too short notice I am told that there will be subsequent sessions scheduled. Just keep an eye on the Brain MIC website - https://www.brainmic.nihr.ac.uk All the best Greg.
  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 level, and try to walk a few miles at least if not more each day. Its a good replacement for driving short distances, which now have a big impact on my head, so I walk, save the planet and stay a bit more healthy! Well done with the paddle boarding it always looks good fun, and relatively peaceful! I can't imagine what it must have been like to go through all that you did and have two under 10's looking up to you and wondering what was going on. I hope they are doing well now, and are rightfully proud of what their Mum has achieved. Finding one's niche now is something I still am struggling with. I know that I can't amble along as I have been, I need more focus. I have something up my sleeve, in the planning which I'll share if it comes good. It would draw on my experience as brain injury survivor, so fingers crossed! Yes, keep dreaming, never stop, wise wise words. Within reason all things are possible, may be not the way we might have done them pre-SAH, but with a bit of flexible thinking and a touch of compromise, much is possible! Onwards and upwards! Take care all, as always my spirits are lifted talking to you all. Thank you Greg.
  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 take some hope from that. Also I think its not just about things improving in terms of physically getting better, I think (hope!) that I learn to live with it better, so that I avoid some of the worst of the ups and downs. Or as we discussed above, if I do over do it, I make sure that its worth the fatigue! To me at times I'd rather have one good day where I make the most of whatever, and I flank that event with a number of quiet days either side. I appreciate its not good to yoyo like that all the time, but just sometimes, its nice to "let rip" just a little! Take care, lovely to hear from you.
  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 out there waiting.
  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 folks in a similar place to me was hugely positive. I could start to imagine a different life if work didn't pan out as was looking likely. So despite work issues I felt really quite positive. Years three and four were marked by deaths in my close family, and at my new pace, that took a lot of my time up to deal with sorting things out. However, I was starting see patterns within the year that I didn't like. Winter's days such as today, cold, wet and short, which keep me confined really make this time of year drag. And here we are to year five, and you are right, its familiar, not as I had thought life would be but more importantly for me lacking focus. I was always striving for something, studying, working, trying to reach the next goal, level whatever. I find it harder to satisfy that side of me now, as I see my limits too much. And that is something I know I have to work on. It does come down to something you said, acceptance. When I can do that then I can re-start setting myself targets that are appropriate to where I am now in life. Macca was also right, I'm not getting any younger, and as much as I have always fought the notion of ageing just because numerically I am told I am, it has to have a bearing. I was looking at target heart rates for training yesterday, and for my age, its lower than I thought! I'm glad you made it to the gig, nice one! Yes that is huge encouragement. In my daydreams I still consider getting a ticket for one of my old favourites. Just disappearing up to town by myself and just nipping in for 30 mins of the headline act. Just for old times sake! You are right in that we must make the fatigue trades count. Try to focus on doing less at times so that I can really do some of the things we want. I know somethings I will pay for it in fatigue but at least I spent that time with a big smile on my face earning that fatigue! Thank you all (Daff, Macca, Skippy, and Casey) for helpful, sage, kind and encouraging words. Greg.
  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 quite well, the numbers of pupils is quite small and they are all interested good students. I tried volunteering 2.5 hours a week at a National Trust farm near me, but combined with the drive to get there it was too much. I suffer slightly in that though not rural we aren't in a big town, bus service is poor and my ability to drive more than a rather local ish distance once or twice a week is something I manage quite carefully for obvious reasons. So though I've got a few other ideas up my sleeve, for now I'm leaving them be, but I will revisit. Probably need to reenergise some of my ideas in this area. Water yep, drink pints of it! With you 100% Yes you're right, small steps, maybe a longer journey but still getting to the same place, just have to work on my patience.......... Many thanks again, all the best Greg.
  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 disc or nerve badly, and my main thought was, dam this is going to mess up my ski trip. Little did I know..... For me the anniversary reflections are somewhat cathartic, a chance to vent & reflect. This is the one place I feel I can do this and know that many will share similar experiences and feelings. I have deliberately kept to a minimum that kind of discussion with friends, no one needs an illness bore, and we are in this for the long haul. I reflect that five years ago I had a job that I loved (well 90% of it!), life was good, and we were starting to feel financially a little happier. Now I have had to step back from work completely. That is a life that is behind me, and I do mourn that. I have tried some different volunteering, but even short sessions once a week are too fatiguing. I think the worst thing for me now is the boredom. I was a doer, forever busy, work, exercise, music, travel. Now as many of us have to I have to pace myself, I have my afternoon nap, life is at a different pace. Work provided a purpose for me, a focus to life that I like Targets, things to strive for an achieve. Now it is gone, I miss that "reason to get up". I know this is the one thing I really need to work on, for the sake of my mental health. (any suggestion for non-fatiguing inducing activities grateful received!). I can't listen to music, gigs are a complete no, and I think I frustrate the most by the things I can't avoid. The support one needs to give to family you can't not give. Those times when others need your support, that really highlights for me all my limitations. This is when I do myself the most harm in terms of fatigue, one day I will learn! I know I am lucky, it could have been so so much worse that day five years ago. I have never felt why me, it has always been why well not me? Just dumb luck, nature, the way I was born, genetics, I don't really care. Now get on with what you have got! And for what I have I am grateful, but the initial optimism of the first few years post SAH has given way to the new routine and some realism. Initially we had no idea what the impact was going to be on my life. The medics gave me no more advice than don't go for a run for the first couple of months, after that do as you please. Running is something I don't do now. We all have such different roads of recovery and I know compared to some I am a lucky lucky man in so many ways. I think I do accept where I am, I just need to learn to be happier in that place. Thank you to anyone who has read this far and indulged me in these reflections. As I said this is a cathartic process for me, and in the writing down and sharing of this all, it helps, so thank you. I hope you are all well, and happy. All the best for the new decade, onwards and upwards! Greg.
  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 without Amazon now (other online providers are available ) 16 weeks is so early, I cringe to remember how I felt then and the things that I worried about back then. I can remember going out for the first walk by myself and thinking right I need to stay on streets where if I collapse there will be someone to find me. Now I get to as a quiet a place as I can, far better for the head. As Wyn said it is long journey some bits more so than other. Somethings though you will be surprised how quickly you progress. Everyone's path is quite different. But you have found a great place here in BTG as there is a wealth of support and information to help you on that journey. I come and go a bit, but folks are still as welcoming, and just to know that other folks have been through and are feeling just the same is wonderful. Enjoying hitting your targets with the pedometer. I walk loads now as the more strenuous exercise just doesn't sit well. Today I managed 6.5 miles, shattered now but nice to know I had earnt my supper! Will sleep well!
  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 a plus helps with the sleep (which has been disturbed since my NASAH). The amitriptyline doesn't cover me for the really strong headaches or those that come from doing too much etc, but definitely helped moderate things. Down side is that I find the drowsiness builds up over the week, so under approval of my GP I have a 4-5 day on, 2 to 3 day off regimen, which seems to work for me. By the end of the days off though I can feel the general headaches building back up and I tend to use more paracetamol. Hope this might help, I know its slightly different for you Vicky, good luck with it! (& we have all done daft things in retrospect post SAH, I have a long long list of things I should have know better not to do!)
  17. 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 I thought I would share. The last point I particularly found relevant to me: ENCOURAGING THOUGHTS 1. A person who is severely impaired never knows their inner source of strength until they are treated like a real person 2. Nothing equals the power of love. It's the only source of magic there is. 3. People who had have a brain injury do not want hand-outs, but hand ups. 4.Think positively about the gains made since your stroke, rather than comparing with how things used to be before it 5. What do you dream about? You can do anything, but you may have to do it differently. Sorry some of that is a little a soppy but some of the points I find for me are helpful at times to keep in mind, Cheers for now greg.
  18. Thanks, Win, all OK this end, onwards and upwards as they say. Hope you are keeping well Greg
  19. 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 volunteering (within the context of having a brain injury). I am not sure if other county Headway organisation are running this or not, but I can thoroughly recommend it, having attended the first one in my region in St. Neots. Here's a web link: https://www.headway-cambs.org.uk/whats-on/news/community-connections-breaking-down-barriers-1 It was a great opportunity not only to go over some of those important rehab / cognitive exercise / fatigue management strategies, but to do it in a small group where experiences could be shared. All of us on the course found this particularly invaluable. If you are local to Peterborough and think you would be interesting, its coming up very soon, contact the organisers and they are good at moving quickly to get the right folks enrolled. I haven't posted or visited for a while, I hope all here in BTG land are keeping well and happy. All the best Greg.
  20. 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 days afterwards with fatigue from doing what I thought was a light ride. Ho hum! You just have to learn where the new normal is. I train once a week with a PT who is experienced in cardiac rehab, and she uses the same exercises regimes to keep my blood pressure/heart rate low enough not to give me fatigue but I can still get a reasonable work out for half an hour, and still be standing the next day. There was a thread on here a coupe of years ago, and I recall that there was a lady who was a gym instructor (States side I think) who could still run some pretty long distances on a regular basis post SAH, but the thing that really triggered her fatigue was instructing big group classes. We all fatigue in different ways! Good luck with it Josie, Greg.
  21. 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 everyone what triggers the headaches and fatigue. Good luck, you are still really at early days with it all, plenty of time for things to improve and plenty of time to learn how to balance things to accommodate! All the best Greg.
  22. Jan, Sorry a late reply to this thread, but thought I would share a conversation I had recently. I had been feeling similar to yourself, that I had plateaued somewhat in my recovery, and I am 23 months post NASAH. Even over periods of months I don't feel there are great differences both in what I can do and the level of fatigue. If anything fatigue is worse as I am trying to do a bit more at times I was somewhat heartened recently after talking with my sister in law and her husband. He had a rather large stroke 9 years ago, and took some fairly big cognitive hits, and suffers from fatigue. From the outside in the early days we could see stepwise improvements in his recovery but as time went on it was less apparent. However they were both adamant that in the last 5 to 6 years, so up to 9 years out he still is making some significant (and useful) gains. He is now more able to sustain work like activities for longer, and not suffer with fatigue quite so badly. He'll never (as neither will I) get back to where he was but he is doing more of what makes life good for him. My thoughts for the future are that improvement will come from two sources. One naturally our minds heal (albeit slowly) and secondly we learn how to better live with our conditions such that we can learn to maximise the energy we have, avoid what does our heads in, and allows us to do more of what we want. Anyway that's my plan! Good luck with it all, ride those ups and downs, its all character building (so I'm told!) Greg
  23. Wow that is some journey, welcome to BTG, there's a great bunch of very supportive people here who have helped get me through the last (almost) two years since my NASAH. Great re the fundraising for Headway, they are an amazing organisation who I can't praise enough. Cheers Greg
  24. Thanks Daff for sharing that visual, I've just found their FB page, worth a visit, (and I shared that one on) Cheers
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