I started on this course 9 weeks ago. I have changed for the better. It has not been an easy process for the majority of the course but I stuck with it and hey presto it has worked.
I began with preset ideas that my cognitive issues found in my neuro-psychology assessment would be tackled and that would be all and I would sail into the sunset a happy man.
So what happened was that there are various techniques, especially body mapping, that challenge you psychologically. It brings out trauma, I relived many of the occasions early after my BI when the sensory processing was scrambled. On top of this was the memory and concentration issues and the physical pressure on the skull etc, you know the score. Anyway the terror of being like and thinking that I was going to be like that for ever emerged. I revealed this to the group and they were horrified, I was embarrassed and felt like a fool, I was the only BI on the course and realised the others even the mindfulness provider had no idea of the effect of having a BI. The person running the course kept phoning me up to see if I was ok. This was a pain in the butt.
I kept practising the techniques and my whole mind and life began unravelling driving me a bit mad. I was dealing with being on the verge of homelessness and bankruptcy at the same time and dealing with the DWP etc. So it was piling in from all angles but I just kept practising the techniques, I felt like giving up also but just kept going.
The last couple of weeks has been a revelation, I have come to accept my BI as what it is, have timed my attention span and concentration limits, recognised triggers for early fatigue and deal with that to prevent days of laying up. My mind is far more organised, rather than chaos there is method, preventing further issues.
I may have annoyed some people on here over the last few months but I thought it was important to rant out all my crazyness as a record, for myself really, but also to show the changes and state of mind for others to see.
I would say that the mindfulness has helped a great deal but in a surprising way to me. I know that I am only just scratching the surface and there are many of the aspects of the course that I did not get round to practising properly. I am going to continue and hope to improve even more.
Hope this helps someone else. I highly recommend it.
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pinkvision
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My goodness, I'm so impressed to hear this form of therapy. has helped. If it helps in the process of 'acceptance' of what we've lost, then its pivotal in supporting our recoveries. Thanks v much for posting your experiences Pinkvision! Btw, you haven't annoyed me (!), and others here, I'm sure, will confirm the same! You're just another brain injured hero struggling with reality!
They believe in this type of therapy in Canada, where a fellow sah friend practised mindfulness in her recovery, and with good results. Keep up the good work!
Hi Swedishblue, oh I think I have annoyed some but I don't care. Anyway mindfulness has help me greatly and as I said I feel it is only the start there is so much more I can get out of it I think.
Mindfulness was designed for depression initially and has been adapted by some to help BI, loveyourbrain foundation has done this. If you can change your cognition in regards to depression then why not for other cognitive issues ie BI.
The course I'm on is designed for depression and I'm the only BI on it, the teacher has no idea what BI is, other members of the group have no idea either. In that regard it can be tough.
It seems to have totally shaken up my unconscious self and drove me a bit mad while the information restructured itself. From there 'viewing your life' you find a good base to work from and life becomes more organised.
I did follow other forms of mindfulness before this course, they were online via the American veterans association where you use visualisation techniques to 'spark up' a neural network that is in need of repair, then carry out activities to practice memory or attention or anything you can imagine, then meditate on the activity afterwards to reinforce the action. Then repeat the process for 8 weeks. The 8 weeks is important because thats how long it takes a neural network to fully integrate. During that time, 8 weeks, there will be many shut downs and reboots (giving the feeling of going mad)but after that time that network should be fixed and you move on to the next stage.
I did this for 3 turns and achieved alot, however I forgot the psychological aspect of BI and this is what emerged during the course I was on.
I'd say go for it but prepare yourself for the deeper aspect that is hard to recognise at the time. Good luck thanks for being interested in the post.
Hi; I know studying for a counselling qualification did the same for me, i.e, uprooting deep set programming. I don't underestimate the toll it took on you, it is a tough process. Having a BI is very difficult to cope with, but you're coming through the other side of acceptance, and 'Acceptance' of the new you is the challenge! I once attended a SAH Conference in London where I listened to a psychotherapist talk on "the losses". It was like having your buttons pressed in quick succession, and I cried buckets. It's very important for us going forward, to realise just how far our journey has been, and mourn the losses. It was about the only part of the seminar that struck home for me.
Thanks so much for highlighting the American website. Did you get offered this course through the NHS?
Hi, it's odd many people share the feeling of the loss of the self. I notice that I am cognitively slower and many things I used to do I don't anymore and oddly don't even realise why I used to do them.The whole BI has been such a fundamental shift in my understanding of the self and of consciousness that I seem to have moved into a new life that I find satisfying and I am inspired. I am still me inside, the same person and only the methods of how I act in the world have changed. That's neural functional damage, I am still me in essence. I never realised I was so connected to my inner self, my consciousness. I love life and love the world and will make do the best I can with my dickey wiring.
Hello 😊 Before I hit my head I used to feel very connected to my brain (I know that sounds dumb). I was able to wake up in the morning and connect to my thoughts and stay completely focused on gratitude, stay focused on what I expected of myself during the day and able to feel hopeful about my day and my families. I used to close my eyes at night and see colours floating around my "inside head" (that sounds dumb too) and be able to just enjoy the light show. I was "connected" and loved feeling it.
I find it so difficult now to use my brain in that way, the way that I think mindfulness needs. I've tried so many times to just think and completely struggled to feel/be connected to whatever I was able to connect to before. I honestly don't know how I'll ever be able to feel that way again. It was so comforting and peaceful. I don't see colours anymore in my mind either just black... just emptiness.
Hi Feebie, everything you say is totally understood. I used to see black when I closed my eyes now I get lucid dreams that are phenomenal. I love it but it was scary at first.
The connection with the brain I had and still get when I am fatigued, it all just seems to disengage and go into chaos mode. I think maybe you have still got sensory overload and you probably do too much. The sensory overload is the key one to fix I think. Then you will begin to 'feel' you again but with faults, ie cognitive problems, then you can address them. The mindfulness helped me to see and overcome the trauma of having a BI, then work out patterns where I function well and then to notice the triggers that cause a crash. It will all come and you will be happy with yourself again.
I completely agree. I am doing too much. I am hanging on until Christmas to get a break...hopefully. After that? Who knows. I think my new neurophysio exercises are causing me more issues this week so struggling to keep a hold on my tether.
I'm so glad you have had a break through and I hope you continue to improve. Have you found any peace??
There is a kind of peace but the fight goes on. I realised really early on that I just had to stop and rest and get to know myself in that situation and work out a way to recover. I think you may be coming to that point soon.
Yea...I don't think I'm far away to be honest. I keep reminding myself that I have to pay for treatment and to pay for it I've to work so I just keep going.
I've only just made it into "the system" with a visit from my local brain injury unit and this neuro-physiotherapy which is more vestibular exercises and whatever else comes.
My gut is screaming for me to take more time off work but I'm a determined fool, I hope to hold on until the 23rd. I have two weeks off at Christmas then what will be will be. It's never gonna end is it? We just get better than we were..
And you've been through so much...Do you feel like there's some control back in your life? Has the mindfulness brought some?
This mindfulness course has helped me unravel many aspects of the BI and helped me understand the bigger picture, also to find that place, a kind of mental 'I'm home and safe'. I was unable to work at the beginning of my BI, I could'nt work out how to make a brew, I just slept, didnt wash, clean my teeth, was in my same clothes, a friend came around a few times a week to check on me, clean the house a bit, bring shopping etc, got me to wash and do my teeth etc. It was that basic and that lasted for about 5 months then things just slowly started to come together.
Going through all that had a big effect on me and this came out in the mindfulness, traumatised the teacher said. I have developed a total mistrust of the medical establishment, the social security system and the insurance system. (I'm trying to control myself from saying that they are all a bunch of bastards).
You can't deal with any of these issues if you can't express them, then mull them over in a 'mindful' way.
I payed my visual therapy, physio and of course the mindfulness. I just put everything on plastic. I thought I'd deal with it later, well I am, going bankrupt, wiping the slate clean as the CAB said. I've sold everything of value and basically have nothing left. It is really liberating and I'm seeing it as a positive thing.
I've gone of track here, oops, just more head stuff to sort out.
You need to start healing soon Feebie, take that time out, rest and recover.
So would you say the mindfulness helped you process the bits that you weren't really present for? I was absent for months, just existing not living or having a clue about what was going on (I'm still a bit empty). Like a shadow following myself if you get what I mean. Has it helped you process those experiences, the bits that you lost and fought to recover, the relearning of daily operating the just getting out of bed in the morning?
You're absolutely right, how can you deal with those issues if you can't speak it or describe what's happening in your head. They want me to talk to someone (if I ever get an appointment) but I find it difficult to pull thoughts out of my head and verbalise them how the hell am I supposed to talk to a psychologist... I know that being mindful is such a positive and comforting way to live, I really want that back!
I agree with your assessment of the social security system, my mum has had the pleasure of being a "customer" for a few years and I've had to fight on her behalf a couple of times. My lack of treatment from our medical establishment (in Northern Ireland, NHS) left me suicidal, if it wasn't for the private folk kind of stabilising me I'd be dead. I do believe they are both chasing their tails with my brain injury though, it's so unknown over here that experience/treatment is severely lacking or they just don't give a shit! I can go off track too 🤣 apparently it's about the journey not the destination.
I can see the liberation in wiping the slate clean, I've been close a few times this year to just jacking it all in...still might happen! Thanks for reading and helping, I don't get this clarity often.
I'm with you all the way, totally understand everything. That clarity comes with rest and gets longer all the time, I'm now on 2 hours every other day. Thats with at least 12 hours sleep and a few hours meditating. If I push over the 2 hours I get areas of pressure in my head, that's the first trigger that it's going to go to pot if I don't stop and rest. Recovery takes at least 3 days to get back to the 2 hour every other day. LED lights trigger a melt down and panic attack. So basically I more or less know how to stay away from environments that cause problems.
The mindfulness helps to bring it to a good level of understanding. Yes for the traumatic parts it will bring it out and basically you just have to process the information as it unravels. So it's not just the BI that you need to deal with but everything else as well to become a 'good' human being again, devoid of ranting and mistrust in aspects of the 'state' system (bunch of wankers as they are) (hahaha, if it pops into your head just say it I suppose, (being honest is important to recovery))
...yea the pressure, I know what you mean I'm walking around with it all day. I think I might have LED light issues too but not as bad as you.
I guess I've still been ignoring what my body has been telling me even with the vestibular/vision/exercise therapy...I really need to take stock...! Infact yesterday morning I was all prepared to speak to my boss about taking the rest of the year off but he wasn't in...today...I'm just walking around in circles.
Dear God speaking of being honest I told visiting family to F off, they weren't wanted a few months after I hit my head while in the painful overstimulated confusion...and had a few other "honest" moments along the way 😄 but hey ho, the Joy's of brain injury.
I'm gonna keep trying to get my brain tuned into being mindful, sounds like it's a way through the trees.
It only helps to identify issues and brings you to an acceptance. You still have to take the steps to recover. I realise that I will never be able to return to the way I was before, I need to manage exposure to certain situations, basically avoid anything that triggers a bad response. Stay out of offices, shops, hospitals and avoid noisy places etc. I'm learning and testing myself all the time. Feeling good with life is far more important than money. Rest ,learn, accept and adapt. Now get down that polling booth and get the Tories and their NI allies out of government. You may be able to take that time out then and get treatment and get sick pay while doing it.
I guess I'm still struggling with accepting my new reality by ignoring it and waiting for it to go away, while still trying to be who I was. I just can't understand my limitations even though I recognise what some of them are...
I'm sure you know some NI history. No Government for nearly three years though still receiving pay etc. With those clowns claiming to represent us in this country, I stopped voting years ago. There's only two sides in this country and neither of them are appealing. I'm afraid it's up to those who still have some faith in the system. But yea I agree, Tories and DUP need booted out of everywhere!!
You are almost nailing it now Feebie, who you were does not come back, you are you as you are now, you don't just wake up and feel better. You have gone through your life and have had your experiences, family, school, emotions, troubles, relationships etc, everything you have ever done has been wired into your brain and it is what make you You. You are basically your neural networks and a BI damages those networks, so you are not you as before but a new broken you. The old you is gone because the neural networks are damaged. This is the nuts and bolts of it.
So how do you find out what's broken. First you need to get rest and reduce the stress and anxiety and depression, they cloud the problems. Then there is the sensory overload which also cloud the problems by draining you of energy and causes lack of awareness. Only then can you address the neural damage which can be tested for by a neuro-psychologist. Mine said she would have been unable to cognitively test me at an earlier stage of my BI, (I was tested after almost 2 years) because I would have been too stressed by the visual problems and by the fatigue. The testing took 2 months where she identified anything that caused me any distress in the early stages. Then when the actual cognitive tests were being done it was in an environment that had no external triggers, ie LED lights and patterns, basically it was in a blank room with the lights off and blinds drawn and there were no funny little noises, ie fans, computer sounds, bleeps and talking etc. A friend of mine who is a clinical psychologist said this is what is known as the 'peeling off' period and you should be left with the raw neural system and by prodding it with particular tests they can work out what the damage is cognitively speaking.
Once you know what's wrong you can start addressing them via techniques that encourage neural regeneration, bypassing or bridging or learning to deal with a cognitive deficiency if needs be. There is light at the end of the tunnel. I can see it.
This may all sound a bit raw and mechanical and it is. I made the mistake of neglecting the psychological aspect and the mindfulness brought that out and made me realise that yes it is a mechanical issue but we have emotions too, we are human, and both needs to be addressed.
I knew a few months back that the old me had died but I guess I've still been trying to be that person, living my life as I was without accepting that she is gone. She is dead.
I sat in my car at my break time reading your message and I cried like a baby. I pulled myself together, went back to work and an hour later I was blubbering all over the show again. I can't tell you why. There is something in your message that I am getting but I just can't see it yet. How does that work?! I guess maybe seeing someone else write what I've known deep down but haven't yet dealt with...I said out loud for the first time "I need a break" to the poor work colleague that happened to ask me what's wrong. I need to somehow get this clear in my mind so I can say it to my boss, he has been brilliant with me through this thankfully he believes health is more important than anything.
During my blubbering I missed a call from the lady from the brain injury unit so hopefully I'll get to speak to her tomorrow and I'll beg for the neuropsychologist appointment.
You are awesome!! You have been through so much yet you come on here with buckets of well thought out advice and help guide an insane fool (don't they say insanity is doing the same thing over again expecting a different result? Or something like that) away from that insanity. My brain has kinda turned to mush, I hope that makes sense but in case it doesn't you're awesome again. Thank you! 🙏👊
If you get what I said then you understand it, I totally understand you. A bit of time now to let it sink in and then plan ahead. Get in touch with yourself, your inner self. It may sound weird but your consciousness is not your brain, you may feel that you think the same as you did before but it just gets messed up when you have to express it. It's like your brain is the mechanism that does the expression but it is broken and and everything is messed up. I get this separation feeling all the time. It's like you have a music CD and the the CD is perfect but the player is bust and the sound comes out distorted. The music is fine on the disc, your inner self, but the method of playing it is not working properly, your brain. That's the thing you were saying a few comments back, that you don't seem to connect to your brain anymore. There is a way through this, I know for sure, maybe not completely but a good slightly different person will emerge. I suppose it's how you do it, the recovery, you can make a new you, it depends on the reprogramming. The CD may play a little richer and deeper but a little slower, in a darker but more esoteric room, than before.
Stay with it Feebie, you can get through this. Keep talking it's important.
That is such a great way to describe it, I feel like I understand it but need to hopefully process it before I can use it to learn from.
I am taking the rest of the year off. I know it's not forever but it's a start. I spoke with my boss through the tears and snot, I was brutally honest when I said I can't even tell him why...I can't. All I know is I feel like I am losing the fight. I told him about feeling like I've died and he just listened. Even said he will arrange to keep me getting paid so I don't have to worry about that. That really sent me into ugly crying. He gave me a hug too. I'm trying to keep myself distracted with being cheery for Christmas jumper day with my big sad eyes...
Something has been opened up through our conversation and I don't know what it is but I can see that I need to address it.
Don't be hard on yourself, have a bit of time, stay in touch with myself and all the headway members. Many people have been through this and can give good advice. You are not alone.
Hi Catherine, You sound proper exhausted by work and crying. Try to detach and relax, and rest with meditation. Everything you've said about "the old Catherine has died" rings true for many, including me, except my name's not Catherine..haha.
I've had a very exhausting day today and have come to bed (with electric blanket on and a hot water bottle). I'm so emotionally exhausted I could cry buckets...this is a strong indicator I've really overdone it!
Your Boss sounds v sympathetic and supportive. Don't feel guilty about taking the rest of the year off. Just Rest okay x
Is that the key? I'm trying my best to take note of the feelings that overcome me, see them as warnings/triggers instead of not realising or just ignoring them. I know I'm not good at it yet, hopefully this time off work will make it obvious!!
I woke up yesterday morning fogged and exhausted, woke up this morning in the same mindset of trying to fill my day with everything that popped into my head. I'm self correcting, catching myself and telling myself that I just need to be! No more flitting from one thing to another to keep myself distracted. Just be. My only goals are my eye exercises, meditation and maybe try some yoga. No pressure! Fill the rest of the time with rest. Thank you.
Morning Feebie, now's the time to take a backward step - no planning/organising - just unplug. By that I mean limit time on anything that uses the brain; laptop, radio/music, tv, reading, etc. It's a new discipline I learnt. Opt for gentle walks in nature and listen to birdsong, and limit time with humans - some are exhausting! Which area of your brain did you thwak?
Taking it slow and easy today. Yesterday was completely written off!
I was at a coaching course in Manchester. I drove the front of my head (just above between my eyes) into the pull up rack in the gym, managed to give myself whiplash too. What a journey!!!!!
Feebes, who'd believe things could be so catastrophic after a freak occurrence in the gym. Brains are fragile and have the consistency of blancmange, so not really. But never imagined I'd end up with brain damage from a bleed. Thought I "had it licked" and make a full recovery. The harder I worked, the worse it got. So I walk dogs now to keep physically and mentally well and work to my maximum energy levels. I'm also looking at nutritional supplements and diet again. It's certainly a learning curve. So many neurotoxins to watch out for....aspartane (in gum) is dangerous, I've learnt today. Who'd have thunk hey!
I actually had that thought this morning as I was just lying in bed in the peace of just waking up. I realised yesterday that I keep setting my alarm but I've been gradually ignoring it and staying in bed later. So I took a stretch and set my alarm for 7am this morning a good 10 hrs and 20mins after I tried to switch myself off. The alarm woke me! I'm thinking I'm needing more sleep and the more I do the more down time I need!!!
How long did it take you to realise the work to rest ratio?
Yea who would have?! I'm still not fully accepting or have begun to process the battles of the last year but I am completely aware of the lack of awareness around any type of brain injury and just how much the "experts" have been chasing their tails in helping me move forward.
Hi Feebes, you asked "how long did it take you to realise the work to rest ratio?" - I'm still on the road to recovery, even though I don't think that's achievable. I try to keep to a 'positive mental attitude', and a sensible diet. My sleep though is shot to smithereens so I'm permanently riding the "rollercoaster of unpredictable fatigue". I will need to keep a journal and identify what are the triggers. Will be seeing a naturopath nutritionist in the NY for a tailored approach to diet, etc.
O'h how I wish we had real "experts" on brain injury. The only good expert I've seen was a Neuro-psychologist in Winchester, who analysed my mri scans, and gave insights on damage, followed by recommendations on how best to cope. I must dig that info out and remind myself.
A friend sent me this link a long time ago; there may be one relating to pcs, not sure.
Also, since my brain haem I have had multi endocrine problems (hormones) that have compounded chronic fatigue, so have your bloods checked! Pituitary, thyroid, parathyroids, pancreas, oestrogen, etc.
Its a fact, that we need more rest/sleep after a brain assault. In the NY I'm returing to the beginning AGAIN, to overhaul my diet, exercise, life, and embarking on mindful meditation too. I believe now, my brain injury will last a life time. Not to lose hope but I never imagined I'd be the one (ex nurse/fitness freak) living with ill health. Lots of patience and self love is the order of every day. O'h and a big one - Avoid stressful situations!
Fascinating post Pinkvision. I've always been a firm believer in any form of talking therapy and, though I've never tried mindfulness sessions, 12 months of cognitive therapy was life changing for me some years ago after serious illness and the death of my mother.
Wise words in your final sentence of reply to Swedishblue !
That's a very interesting post. I have done mindfulness as part of Compassionate Mind Therapy. I am currently seeing a psychologist for EMDR for PTSD (in fact I had a session today,) and I can draw quite a few parallels with that. Good to hear that it is helping you.
Hi congratulations on sticking with it. Its so inspirational to read this and i really hear the struggle you have been thru and applaud for your courage and determination to keep going. As I mum of a BI I have sought help and been offered CBT to help me. I have started an online program and finding it equally difficult and taking a break til new year as so much going on. I now feel inspired to go back and complete it in January so thanks so much for sharing as it may also help me son when/if he needs this too. Best wishes Ley
Hi Leila, there were plenty of other people on the course. The ones who saw it through to the end all said that they were glad that they did. It was because the understanding and the change and identification of personal issues and how to deal with it comes at the later part, basically the last 2 weeks. There's not need to put it off, just do a few 3-5 minute breathing sessions a day. That little space in life can make a very big difference.
A heartfelt thanks to pinkvision and everyone else that sharing - really interesting.
Having had a BI three years ago and still coming to terms with it. It's good to know (although unfortunate) it's not just me that's struggling with the NHS (brilliant but struggling), DWP, employers, techniques for managing\improving, etc...
Good luck with the mindfulness. I'm feeling inspired to give it another go.
Hi yes the mindfulness helps you to organise your self mentally, it does not cure the BI but helps you to cope. Acceptance of who you are, coming to terms with the trauma of BI and importantly the trauma caused by a very lack lustre and uncaring state system of poor health care and persecution by the DWP. It also helps you to recognise your triggers and gives a system of calming down and reorganising your mind.
There are other types of mindfulness that are focused/visualising based but deal with repetitive actions to stimulate and rebuild your neural networks. I have had great results from this with balance, spacial awareness, organisation of the written word etc. I came across a science documentary from Australia where a mindfulness skeptic followed a mindfulness course and it physically altered the shape of his brain and the activities he was focusing on improved by 8%. It clearly showed that by just visualising the activities before and after the actions it gave a 30% boost to neural reorganisation. The scientist who went through it is an advocate for it now.
Hi, this is a bit of a late reply, but I was just wondering if you could tell me where you went for this therapy? I tried googling it, but it just seemed to be audio books and such like. did you have face to face therapy? Thanks, and well done to you for doing something so positive. x
Hi yes search 'gwynedd mindfulness'. The courses are not designed for BI though, but you can get a lot out of it and mix and match techniques with your needs. I came round to mindfulness after watching an Australian documentary where a skeptic scientist went though a mindfulness process, his brain was constantly scanned for structure etc and brainwaves were measured and he had to complete tasks along the way. The result was that the structure of his brain changed, pathways became consolidated and his abilities both cognitive and practical improved by 8% in 8 weeks. The study also showed that by visualising the 'activity' before and after the activity mindfulness improves the neural networking by 30%. Before doing the course I went on, I learned similar techniques via youtube, it's all there for free. The American veterans association has plenty of information, I came across repetitive actions, basically repeating a process day after day until it became an automatic function and concentration was no longer required. This is a great idea because most of the things 'normal' people do are automatic, they don't think about them. This is a lifetimes gathering of actions and learned patterns. After a BI these become damaged and the effort it takes to complete a formerly automatic action causes fatigue. so by coupling the mindfulness and actions that you need to relearn is a good idea in my mind. You can basically make your own practices. I did this first and improved my 3D vision and spacial awareness and concentration/attention, over an 8 week period. This was through balancing exercises (tightrope walking along an old railway line) and dot and line doodle drawing which developed into 3D pictures after a few weeks. You have to do this daily and keep to a tight schedule for 8 weeks, the time it takes to permanently fix in the neural networks.
I'm thinking of a new program to go through to enhance and build on what I have already done. It really works.
Dear Pinkvision, I'm sorry I have only just seen your reply. Thank you so much for going into such detail, I will investigate further. I think you have to want to do it, though, don't you? My husband really lacks motivation, I really have to push him to so things. But this looks really worthwhile. Thanks again, and I wish you a very happy New Year. xx
If there is no motivation it would be a waste of time, why not look into motivational activities, try some of the American brain coaching sites on youtube.
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