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Greg 21.01.15

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Greg 21.01.15 last won the day on February 3 2016

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About Greg 21.01.15

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    Cambridge, UK

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  1. Cheers Subs, same old same here thanks (in other words not too bad could be worse!)
  2. 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.
  3. 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!
  4. 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!)
  5. 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.
  6. 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 Greg.
  7. 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.
  8. 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.
  9. Thanks, Win, all OK this end, onwards and upwards as they say. Hope you are keeping well Greg
  10. 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.
  11. 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.
  12. 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.
  13. 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
  14. Welcome to BTG, as many others will say it say great place to get answers and not feel alone in what you are going through. Four weeks out is no time at all, I was only home 1 week at the point, and I don't think I ventured out of the house or far up off of the sofa at that point. The tiredness and fatigue was ridiculous at that point. I can remember having to split the smallest of jobs down into really bite size pieces so I could feel like I was achieving something with the small amount of energy I had. You have been laid up in hospital, that in itself without your SAH will weaken you. It does get better, in the early days, weeks and months of recovery typically folks can make good gains quite quickly. The brain is a remarkable thing and recovery carries on for many years. So be gentle on yourself, give it time and things should improve. Good luck with the post bleed MRI, and if you re concerned about symptoms speak to your consultant or your GP. Greg.
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