Greg 21.01.15

Just in case anyone is still interested, the session was recorded and can be viewed at anytime on YouTube, see link below: Fatigue - https://youtu.be/LH7J0B_5BQU Hope you are all keeping well Greg.

Thought this might be of interest to those on here in the UK. The ABI strategy, announced by the government in December 2021, has been championed by Chris Bryant MP with support from Headway and other brain injury charities. Importantly, the government is seeking the views of brain injury survivors, carers and family members as well as charities and professionals supporting those living with ABI as part of the consultation. Rather than a formal consultation on specific proposals, the call for evidence constitutes a request for ideas on which the strategy programme board can build, with the board acknowledging that people living with ABI need support from a range of services. Those completing the survey will be asked what the strategy should look to cover to better support people living with an acquired brain injury, including but not limited to health and social care, access to employment opportunities and benefits, and housing. Having over the years having held a number of discussions on this forum about differing patient pathways, differences in benefit application successes, differing ongoing support for those with ABI and their families, this is an opportunity to contribute to the shape of the government review into how things should be improved going forward. I have just completed the survey and it is fairly straight forward. You can either treat it very much as tick box type responses or you can add more bespoke answers. You can do a little bit of it at a time and come back to it if you need to. It isn't often we can so easily make our voices heard, so I would commend this to you if you feel you can spare a little bit of time https://www.gov.uk/government/consultations/acquired-brain-injury-call-for-evidence

National (US) Brain Injury Awareness Week: Just in case anyone is interested, Arden University is putting on a few open lectures this week as part of Brain Injury Awareness Week (in the US not the UK to avoid any confusion!) . I have been invited by one of their lecturers (a friend of mine and one of my former occupational therapists) to participate in one of the sessions to give a personal perspective to Acquired Brain Injury (ABI) and particularly the impact of fatigue post ABI. The sessions are open to anyone to watch/listen to online but you need to register in advance. The session I am speaking in is on at 11a.m. on Wednesday (16th March'22) this week and this is focussing on Fatigue: causes, what it is like to live with and how to deal with it! See link below for more details and registration. Sorry I'm posting this a little late, but there are four session before the end of the week that might be of interest to people: 1. Fatigue and the brain (Wednesday 16th March, 11:00 – 12:00 GMT) 2. Stroke, attention, and emotion regulation (Wednesday 16th March, 13:00 – 14:00 GMT) 3. Working in the acquired brain injury sector (Wednesday 16th March, 14:00 – 15:00 GMT) 4. What's going on in there? The science behind neuroimaging methods (Friday 18th March, 13:00 – 14:00 GMT) These sessions are open to all and not part of Arden's courses, not a commercial, but a social enterprise organised by their students. (so I hope you don't mind me sharing this here!). Hopefully some of this might be of some interest to people. Hope you are all well, it seems a long time since I dropped in to say hello to everyone here. Best wishes Greg, https://arden.ac.uk/knowledge-base/latest-news/arden-activities-for-brain-awareness-week?source=google&medium=cpc&campaign=ArdenBrand-ShortTail-UK-Exact

Well put Win, thank you!

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.

Thanks, Win, all OK this end, onwards and upwards as they say. Hope you are keeping well Greg

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.

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.

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

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

Thanks Daff for sharing that visual, I've just found their FB page, worth a visit, (and I shared that one on) Cheers

Hi Graham, Welcome to BTG. I am only a little ahead of you having my NASAH Jan 2015. What you describe is really quite normal, and bearing in mind that we are different, the fact you are working 20 to 25 hours a week is pretty good going. As Macca said you are early in your recovery, I was advised by my OT not to try my return to work till 12 months after my NASAH, to maximise my chances of success, and the hours I am doing are far less then what you are achieving. So don't be too hard on yourself, your NASAH was a traumatic event for your brain, and neuro recovery takes TIME. Recovery is on a completely different timescale to almost anything else that could have happened to you. So as I have been told (correctly) repeatedly by folks here, patience is the key. The other thing that is so important in working with fatigue, is finding the right balance in how much you attempt. If you do too much you will know about it, knowing to listen to the signs your body gives and stop before you do too much. The analogy that someone told me was that if you represent the energy we have do things both cognitive and physical as a battery, then post SAH, everything we do takes more energy to do and it takes longer to recharge that battery after use. Good luck, give it time, Regards greg.

Glad folks find it useful, Macca. I like the idea of laminating and sticking it up on the fridge...... Have a good weekend Greg.

I had a particularly good session with my Headway Occupational Therapist yesterday. The topic for our session was helping me with strategies for helping others to understand what my strengths and weaknesses now are. One of the things my OT shared with me was the article in the link below, and I though I would share it with you all as I thought was quite good. http://www.brainline.org/content/2011/07/lost-found-what-brain-injury-survivors-want-you-to-know.html Not all will be applicable to us all, but some of it may be, it was for me. I will share some of this with my dearest and dearest to try to explain things a bit better. I've abstracted one of the points below (I didn't quite agree with all of it, but I felt this bit was particularly apt) Hope folks find this helpful Greg. ------------------------------------------ Please don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. -------------------------------------------

Good luck hope it goes well. I found the interview at home daunting enough, so fingers crossed for you greg.

Wow Suzy, first off well done for getting to a gig within 3 month of your bleed, that is amazing even if it didn't quite go to plan. Its still such early days and give it a bit of time and hopefully the paranoia will subside. I think its quite common (it was for me) that certain situations especially for the first time post bleed cause varying degrees of paranoia. These days 18 months down the line I rarely get paranoid attacks, so hang in there. I am also slightly jealous, like some of the others here I can't really tolerate loud music any more and it's worse if I try to divide my attention and talk to people over a background of music (or any loud his noise). I had to give my ticket away for a gig (New Model Army; anyone heard of them?) just before Christmas last year that i had really been looking forward to and working towards since I had got out of hospital. Kicker was it was apparently a stunning gig and quite a few of my childhood friends landed up being there and had a great time........

Pat, I can really identify with what you say. I am 18+ months out from my SAH, and some days I will wake up and think, yep great cool, all is well, and then set about things and within a short while the effects are all too familiar. For me right now its all about learning to manage my condition, avoid the things that exasperate the fatigue so I can maximise the days where I feel a little more normal. I have a feeling that its going to be an ongoing journey of learning. I have been recommended (as many have) to keep a diary to help try to track what activities can exasperate the fatigue and headaches. I find this the most help when review by my OT, the more objective external view on things is really helpful Good luck with it all, and remember when folks say how well you look that's all most folks can think to say and its meant well. I get that all the time and it can be frustrating especially if I'm having a particularly bad day, but brain injuries are so hard for those that don't have them to comprehend, and people just want to be positive.

Well said Chris. Nicely put,

Hi Jen, As said above it is such early days for your husband. While I was in hospital with the same as your husband a nonaneurismal SAH (I also had a drain), I had long conversations with people and to this day I have no memory of them, whereas other visitors I do remember. And now I tend to recall almost all of the conversions I have, but as Skippy touched on sometimes some of conversations that have less reason to stick in my mind really don't lodge at all, but that's really the exception rather than the norm and I'm 19 months post SAH. The way I looked at that time in hospital and the weeks to month or two post my SAH, my brain was still very much still suffering the acute side of the trauma from the SAH, and when that calms a lot can sort it's self out. All our recoveries are different, but for now as Paul said, patience, one day at a time. Jen, come back here at any time and ask those questions you need to, there is a wealth of experience and some of the most supportive people I have ever met.

My referral was from my neurologist for my NHS neuro psychology tests, but I also have BUPA from work and I was able to self refer for testing through this. Though I am happy to say the NHS testing and feedback was by far the better

Jan, I'm 15 months out from my SAH and still working on my phased return, some good days some bad. Occasional thoughts of what I would do I don't succeed in getting back to work. Favourite right now is getting involved with assistance dogs. For example Hearing Dogs require people to have dogs from the age of two months to 14 months when they go off to work, you have to take them to training session once a week at a regional centre and mainly get them used to all sorts of social situations. Admittedly this only sounds nice if you are a dog person! The other thing I find is very good for filling my time without fatiguing me too much is I have an allotment. We had just started this not long before I had my SAH. It is quiet, peaceful, fresh air a plenty, and if successful provides nice healthy veggies!

Lyn, Its good place to come and share, don't be shy everyone is friendly here!

Jan, To me "there" is somewhere different from where I was heading pre-SAH, and though not where I originally intended to be heading I am hoping this wake up call I've had will mean it will be somewhere better. People's reactions to my SAH really fascinate me and I don't take any of it personally. I know that without a personal frame of reference it is so hard to understand what someone is going through, and even between us all here on BTG our symptoms and prognosis can vary hugely. I find going into work and seeing people for the first time since my SAH and reactions from close colleagues varies hugely, most folks give me a huge hug, some want to know all that happened, and a small number don't want to talk to me. Some folks are just awkward about things like that, it isn't anything personal, it doesn't make me think any less of them, its just some folks can't deal with those kind of things and what it infers. My response to the question how I am doing, or am I getting there, is yep I'm getting there, progress but it all takes it's time

Same here three month follow up, but they did say as I was discharged if I hadn't had an appointment sent through after a couple of months then I should chase it up as there was a fair chance they would "forget" to invite me in. In the end I had to chase it up as they did forget, sometimes the system just needs a little bit of help! greg

Hi Trace, As Macca said if you have medical concerns get back to your specialist, but besides that you may also benefit from occupational therapy (OT) support (there are a number a threads around that touch on this). OT wasn't quite what it thought it was pre my SAH 18 months ago. Its working with a specialist to help you manage the "deficits", issues whatever you want to call them that you have now post SAH. Sometimes nothing much will help and as you say, step back rest have a holiday and keep it stress free is the best thing any of us can do. But life sometimes requires a bit more of us, and for this an OT can help. You've done really well to get back to 15 hours a week, some folks never manage that much post bleed. Driving, don't get me started, this is one of my biggest achilles heels right now, I only drive locally and like you almost never at night. Re the drugs, I agree with all that is said above, there are better things that have less complications that you can use to control the headaches. Your GP should be able to help you with this. Good luck, glad you have posted, it's good to share it, and the folks here are all very supportive as you can see. All the best Greg.