There is so much going around about how to IMPROVE your marriage or relationships or self. There's little or maybe no enough about how to appreciate what you have now. I find myself in the position where I am forced to look back on life in what was Then because what is Now is so painful & often bitter sweet. Most days more bitter than sweet. I'm not sentimental. I grew up watching a lot of pain, poverty and deprivation. We were always encouraged to look to the future and what could be better. I think I focussed my relationship on this: make it better, I could be better, we could be better, HE could be better. And now HE is someone different and can't be "better" because he's different and better or same is unreachable. I'm determined that I will teach my (our) kids to live in what is happening now and what they have. Not what will happen if we are better, or do better or act better or love a certain way. Not to wish for more, but appreciate what is there, now. Because it's easily lost, can be hard to remember and is impossible to get back.
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ored13
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Good thinking ored. We only have the present after all. So sorry for what you've lost.
We're all the same though, it can be so hard to stop and enjoy what's good about the present, rather than looking at what could be better in the future.
And thank you, you've just held a mirror up for me.
I tried a couple of new volunteering things with church this week and triggered off bad headaches and the dreaded 'back on the sofa' fatigue (and, let's face it - feeling really sorry for myself because I used to be able to do that sort of stuff without keeling over - and then carrying on to fret about the future -all in one go of course...) Entirely forgetting how good it is that I tried what would have been nigh on impossible a couple of years ago,...
It's so much more helpful for me to live in the present and focus on what's good about life now, and on the small wins, like my watercolour painting, rather than focus on how I used to be able to do more.
And that said, I'm off to a U3A ( for the retired - gulp!) beginner yoga group later this morning ( for the princely sum of £1) which is also a new thing, where I will get to talk to other people, tie myself in knots, get quite dizzy at times, and definitely fall asleep this afternoon... ( I just have to remember that making 'you've got to be joking' snorts and faces, is not appropriate in a serious class ..) 😂
Yes this looking at things in a different light or positively can be exceptionally hard. I'm struggling with the positives at the moment so I've stopped looking for now. I'm in SOS mode.
How was yoga? They didn't kick you out for pulling faces no?🤣
Hi ored, yes I think hunting for the positives when something cataclysmic and life changing has happened isn't realistic is it? Hang onto the SOS.
I'm three plus years down the line, so am looking for the small wins now. Although I do seem to have had some small cognitive gains lately, which is interesting. I'm wondering if focusing on the art which doesn't knock me out, is cognitively beneficial in some way other than just being therapeutic to get stuck into something pleasurable.
Yoga didn't feel so bad today, so behaved a little better .. wonder if the teacher is lightening up on us a bit?? Finding places I didn't know existed though! 😂
I think I need to take a leaf out of your book and occupy my husband. He just sits and watched Netflix or terrible streams of nonsense Facebook videos. I'd said to him this evening that this will just have to stop. We have to look at trying to do something different. It's part my fault because when he was discharged I spent LOTS of time sorting excercises and generally neglecting the house, dog and myself. I need to find some things to do. We do have some sort of art type classes in the area for people who need additional support. But it's often for those with dementia etc. I know he would just not feel comfortable in that sort of situation.
It's really hard for you Ored, I've had to try and look after my Mum more a couple of times this year, and just end up neglecting myself (which I've realised isn't sustainable). Have you tried reading the Jodie Mardula and Caroline Vaughan book 'Mindfulness and Stroke living with brain injury' really very good descriptions by the neuropsychologist Vaughan of the way different brain injuries affect function. Useful stuff. I know my executive function is weird, but she points to it producing an inability to instigate action, and interestingly to stop doing things once started. However any underlying depression could also stop him from wanting to do anything.
I can see that he wouldn't be happy in an environment with people with dementia, that would be quite traumatic I think. What sort of things did he like or want to do at sometime before his BI - is that something you could tap into?
However, if it's any consolation, all I could do early on was just watch recorded junk tv box sets, and then I belatedly graduated to Downton Abbey and all the Marples - anything without too much movement on the screen works - and adverts are a nightmare. (Deeply miss all the sci fi and action stuff I used to like!) I even watched everything twice over, because I wasn't remembering them anyway. Then once I started the London rehab appointments about 9 months after the concussion, I was totally flaked out the rest of the week- if I hadn't been a diehard commuter in my previous life (and born and bred on the London tube) I don't think I could have managed it all, but my long term memory is largely intact, and that, and habit, got me through ( I was perfectly happy to get on the train and go to sleep - commuters have to travel in energy conservation mode to survive!)
So I actually only did my first couple of art classes just before the first lockdown - so about 18 months ago (I hit my three year anniversary since my accident at the end of July this year) but at that point a class was still pretty exhausting, I'd go home afterwards and just totally flake out again. And planning how and when to get to classes and appointments on public transport used to take me forever, and be quite a headache literally. The only thing throughout though, is that because I live on my own, I've had to do basic stuff to look after myself, however badly, all the way through. Though that's been tough, and is still quite a big challenge, it crossed my mind early on that it wasn't an entirely bad thing in terms of almost retraining myself to function. I was doing all the online Luminosity brain training stuff early on, and logging my results in Excel (geek!) interestingly my maths scores dropped like a stone (hurtfully, because my degree was mathematics) but my problem solving measures shot upwards in an almost exact reverse mirror image at the same time. My hypothesis (based on a sample of one, and a bit of experience with schooling children with special needs) was that my brain pinched my maths circuitry in order to problem solve my new life.
It wasn't until we were fully in lockdown that I really learned that I could actually have fatigue-free and headache- free days - and so got so much better at avoiding triggering fatigue and headache - so I had in effect still been doing too much beforehand. I think that when I was feeling lousy with fatigue and headaches all the time, it didn't matter to me that I was still doing things to make it worse ( possibly like watching tv, actually) if that makes sense? ,(All that time it never occurred to me once that laying down flat, rather than slumped on the sofa would be helpful.? Incidentally does he take hourly brain breaks from the TV?
On the painting, I just started with a learn to paint library book and a load of donated paint and stuff dug out from the family's collective lofts. Though I do really enjoy the quiet company of the face to face art lessons. Perfect environment - no sound or conversation to deal with!
This year have found some of the online lessons on YouTube and the like rather good as well.
The neuropsychologist was very hot on me finding things to do that didn't give me problems - so not dealing with fatigue as it arises as such, but working out what activities don't really trigger fatigue in the first place. It's an interesting angle, and well worth exploring I think.
My fatigue is bidirectional, so physical activity impacts mental activity and vice versa, but if I can steer clear of TV and screens during the day, I can actually do more physical stuff in a day than mental stuff. Half hour on a screen trying to sort out something financial - totally wiped out. All day in the garden, albeit with good regular breaks, I can do tons, likewise walking.
For me I suspect art works, because the neuropsychologist tests showed that my visual memory was still above average for my peer group (nothing else was anymore!) and painting is also based in the non verbal skills in my brain, which have been historically strong. Plus - probably most importantly - it's something I really wanted to do
For example, on top of a week when I've overpushed myself, writing on here, which I find quite difficult, but I value so much, has produced a headache, but after painting for a couple of hours, I usually feel better both then and on the next day.
More sleuthing on your part to solve his inactivity I think Ored . A virtual hug from me anyway x
She loves music. She's such an odd hound. She will quite happily dance with you...mainly in circles, to any music or random made up song. She doesn't enjoy the bagpipes quite as much. Maybe when our son gets better at playing them. Poor hound 🤣. She's actually my husband's dog. Her behaviour when I opened the door on the night of his collapse was what set my alarm bells ringing and sent me straight to hunting for him rather than to carrying on with unpacking the shopping. She's a good beastie is Pip.❤️😊
She's lovely, and yes, can imagine learner bagpipes could be a little bit of a challenge... They are very sensitive to their owners, aren't they- must have been so traumatic for you though.
I'm puppy sitting tomorrow for this tiny one, she's my niece's ..
Yes spot on. I also feel its sorrow fighting with joy happening. With this epilepsy investigation it worked in a mysterious way of allowing acceptance and deal with the Now, instead of going over and over repeatedly of what has happened, in near 18.5months
Take care, I really mean take care of yourself, we the Wives/Mothers need to be top priority keeping everything together x
Thank you. It is really quite hard to accept that things could change. Go up o down or sideways. I've always expected them to go up.
But yes you are right about taking care of ourselves. It's just so flipping hard. There are not enough hours in the day for it.
Unfortunately I've noticed that my friends have started not asking me to things. I doubt I'm much fun at the moment, but quite possibly more because they know I can't go. Seems a very selfish thought too. The ever present guilt and often frustration of a care giver.
Well we had home visit yesterday and they jotted down dates and symptoms presented and prepped us about tests which is available can be carried out at home , but also mentioned Anti-Epilepsy medication. We also went down the route of Day Centre but small group to support with the transitioning to get to Day Centre . Was a lot to take in yesterday. Neurologist on 18th Oct 4pm.
Gosh in a way your lucky you have friends that ask, they just don't know how to respond, it's just there own coping mechanism, it's not you.
Time: I know what you mean I'm happy with my 45mins/60mins free time it's most I've had so i appreciate this time. Toddler up since 5:30am it's now 7:20pm just settled her, I have 20mins to wash face do facial lol and scheduled hour to watch TV to actually sit down and try to switch off.
Only accepting TBI mind but adapted, I've had 20+ years with a wired picture of how our life would be, hopes, our kids future what we wanted to do: spent many months and continuing to untangle i have to work with the now, our hopes are going to different, our children lives will be different. It is what it is, it's horrible, tearful, angry sometimes but shielding my love, strength and proudness of where we are now; I've accepted this is far as his progress goes, in fact we both have; the hard pill to swallow currently lodged in throat, but going down.
It's not just a slow pill, it can be a hard and jagged with as bitter edges. We have to try and develop some ways to cope and look after ourselves, that hour you get to yourself is so important. I take that time as well usually quite late at night. But it works. I think more and more that the carer's job description should be "To do what works at the time". I understand that picture that you're speaking of. I had one of my own as well. It's a bit like someone has come overnight and made adjustments to it, and now I have to adapt. That's how I think of it at least. If I could get my hands on the person who did it....😒. But pointless thinking that way. Have to get on with it. Future is future I guess. However some days, you just have to have a day. So many changes. What we thought would be having to change completely. It's a sore one. But I think that you are doing beautifully.
This made me really sad. My husband is coming up to his 3 year anniversary in January, and I'm still trying and fighting for him, having tests done, clutching at straws, to make him " better". Perhaps I'm being unfair, and should accept that this is who he is now. He filled in an AGHDA form recently, and I was shocked to see him answer yes to every single one. But I should have known this, shouldn't I? Has your husband done one of these? It's so frustrating as he can do so many things really, not as much as some on here, but more than many. Have a mollycoddled him too much? Did everything for him when he first came home, and just carried on. If he lived alone he'd have to do things, so perhaps I haven't done him any favours. 😩
Oh dear sorry to be the catalyst for these thoughts. 😞
I'm not sure what the form is. What does it stand for. We unfortunately are finding that there have been little things missed out. So all assessments as far as OT and speech therapy are being started again. I've also found that his neuropsychologist is a chocolate tea pot.
Mollycoddling? It hard to know. When my husband came home it was absolutely impossible not to do things for him. Our new OT had asked whether he did anything for himself in the kitchen. When I answered "no" she seemed surprised. Until she started assessing him. I said there was no way he could be left to do anything like that. I did everything, I still do everything aside from dress and undress, toilet and shower (though once a week I do the general heavy scrub and shave).
I don't know whether it would be called mollycoddling. I could watch him struggling to put his underwear one for 10 minutes on a tired day and then put it on back to front and end up exhausted. Or I could help. I don't know. I think it's an unfair word really.
I also feel like this may be a long term project. Maybe we are approaching it incorrectly. I also just wanted to throw everything at him. Try this, try that, scrap the next thing. Maybe it should be a slower approach. Ha s he shown any improvement?
I don't accept. I just can't. But there must be a balance. I squandering my time and his by constantly battling. Maybe there should be periods of acceptance and periods of work?
Maybe there is no "better" but small wins and minor losses.
I hope some of this makes sense.
I'd be interested to know what has changed or not for you. Where is he now as far as getting "better"?
I understand that this seems a very very contradictory reply🤦🏽♀️
Thanks, and don't apologise! All good, need to hear about other people. The form is Adult Growth Hormone Deficiency Assessment. He had it done at an endocrinology clinic. A lady on here suggested we should try this path, Joanna Lane if the Christopher Lane Trust. She has been so helpful and supportive. Perhaps something for you to look into? It sounds as if Ian can do a bit more than your husband, so I shouldn't complain. But I won't rest until I've exhausted all possibilities, to try and get him to be the best that he can be. I wish you both all the very best. Xx
Ahh husband going down this path, but think this epilepsy might pause things, just reminded me to email the secretary on what I do as bloods due again this month, and we know how consultants love to communicate to each other in different departments 🙄
I called to see what I should do waiting to hear, but this afternoon neurologist cancelled for this mondays appointment, moved to 2nd November due to staff shortage
Sigh. Oh well at least there will be an appointment. We have one too for the end of the week. Feeling a bit lost and floaty at the moment to be honest. Many changes and things to think about.
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