I'm a few years down the line now since the concussion that caused my problems - probably not helped by the two that happened before and after. Fatigue, and all the weird stuff planning anything, word finding, trouble following conversations and with noisy environments and supermarkets, plus variable insomnia, along with the need for strategic breaks, still all happen. Though with hindsight the good thing is I've seen real improvements in what I can do and cope with, even since parting with the concussion rehab people. Plus I know most people have had a lot tougher ride with their BIs than I have.
Trivially I'm still thrilled to be able to watch a whole episode of Strictly in one sitting now... And I can talk to people, even if it's with the sure knowledge that I've forgotten the stuff they told me last time I saw them. And I only get headaches when I really push myself for too long.
So my question is, having steadily increased my day to day activities on stuff that I can cope with over the last couple of years - is starting something like my couple of hours of voluntary office work or my latest foray into a new chess group - which give me headaches -a good thing, because it gives my brain scope to be plastic and improve some more, or a bad thing because it knocks me out and gives me headaches? In short, how hard should I try? Does it help or hinder?
What is your experience?
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Painting-girl
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I'm not sure there is an answer to this. Life in general puts up obstacles to any ambition. Some achieve the goal, never to repeat, some perpetually strive, never to achieve, others will keep pushing the goals. Sometimes the journey is the purpose, rather than the destination. If you enjoy what you are doing, don't question it.
I would say to try things once and see how you feel. If it doesn't work then you can try again later if you feel you can. I used to go to a lot of car shows before my TBI and I've been out of going again due to the planning and how fatigued I feel but I tried today, had a few breaks and even though it took work, I'm pleased I tried. I think it's all about trial and error
It does, it's a major achievement knowing the challenges that we face. It will still feel good if it wasn't a success because at least you tried and you can work out what to try differently next time.
That's a good way to think about it Pax, thanks. I think my targets tend to be smaller these days, than perhaps they were earlier on when I was still trying to be 'old me' - so perhaps that's why I've still had some steady gains.I've noticed that when I join a new group it is a bit shattering - but once I've got more used to planning the timing and route there, and the people are more familiar, it seems to get a lot easier.
hi Painting girl ,the last two years Iāve hit everything that you have said and didnāt think I would have improved as much as I have .. Iāve just kept pushing to do more .crashed with exhaustion gave it time to recover and started again .. last week I cooked for 13 people and I was exhausted and had to put up with it until it improved . Yesterday went for a meal out with 16 other people and found my speech and finding words lot harder as it was also noisy .. Iāve got another shoulder op on Thursday which Iām all good about as it hopefully will help with pain and again help to get me doing more things that I want to do ..I think I may be not sleeping well because Iām trying to deal with this but actually I donāt know š¤·āāļø..
not sure all of that has helped but it ma what Iāve been doing all the way through the last two years . Pushing , crashing and achieving . Everyone is different but I know I wouldnāt be as good as Iām am know if I hadnāt fought hard to improve .. but I am and havenāt lost the determination to be independent so think that was my driving force . I was so determined to take my granddaughter out i her push chair that I tied myself to the pushchair with a dogs lead as both shoulders were damaged in the fall . I was determined to walk to my sonās normal half an hour walk . It took me an hour and a half in agony by the time Iād walked back the other way as I wouldnāt let them drive me home . I could hardly get home with a torn hamstring ( which I didnāt know I had it just hurt) a collar bone in half being held still with the other injured shoulder ( the one Iām having op on this week ) dizzy , would walk into the wedges aa couldnāt walk straight š all of this and I was over the moon that I has done it .. weeks recovering and didnāt do it again but for me it was all of these things that kept me going .. but I do know itās not what everyone would do .. my advice would be do what is right for you and so this ended up being so long šsue x
Thanks for this Sue, you've had a huge amount of physical challenges to handle, and I found your description of your walk to your son is excruciating just to read. Be kind to yourself, you're handling a lot, I can see that you need to keep your mobility going, but perhaps try not to fatigue crash too often? I hope your op goes well this week, let us know how you get on.
I'm worried that actually I've been better at working on cognitive stuff and have neglected physical exercise since I stopped reporting into the physio - I'm pretty sure I'm deconditioning as a result, have definitely lost muscle strength. I'm still not sure how to handle the trade-off between going for a walk and getting knocked out - which then stops me perhaps going to an art group for pleasure and the company.
I'm in total awe that you cooked for 13 people - I have no idea how you did that. You should be so proud of achieving that. Sometimes it's worth getting fatigued to do a one off thing that is very rewarding. One of the things I've miss most, is cooking for people, because I find it so hard now - perhaps you've given me a new target - but perhaps I'll just start with cooking for one or two of the family. It is a while since I've tried cooking for someone else. You've given me food for thought! Thank you. J x
yes go for cooking for one or two itās so rewarding to achieve something even if itās small . Iāve done and still doing the cognitive things but going to gym and joining classes was my best step forward .. as soon as I got my driving back I went .30mins was exhausting and I couldnāt even pedal the bike with one leg .. but I just kept going them joined in classes or my version of classes š holding on to walls Infact I still do but not very much now ( body balance).. weight lifting classes ( body pump) with no weights and used the weight pole as I support .. going to do that agin when arm is in sling š just try anything small and work slowly forward ( not to crash) and keep going even when you really donāt want to .. and there has been so many times where Iāve not wanted to go ā¦ Iām looking forward to hearing how your first meal plan goes .. make it simple and enjoy the achievement š sue x
By the way Sue, what did you cook for your 13, and did you adjust how you might have you planned it before, to cope, or did you just go with something you've done before? X
I did a raise but prep day before with all veggies part cooked left to cool and finished on the day .. I spread it out over two days which made it easier .. luckily son is a chef so learnt a lot about prep work and I do find it an easy meal as cooked it a 1000 times xx so you have a meal planned yet ?? Xx
A roast and pre-prep is a really good idea. No, I don't have a plan yet, but I will. I meal prep and freeze for myself in individual portions a lot these days, so that I've got something to fall back on - so one of those meals would be ideal ... Thanks! x
Iām back to no cooking for a bit .. had operation on shoulder this morning so arm in sling for a while .. all went well fingers crossed and Iām off home soon . Good luck with your meal Iām looking forward to hearing all about it xx
good on u!! Have suffered all of the above! Found only time will improve, a whole new learning curve ahead, many things u find frustrating be warned!! Just sit & smile to spite it!!! U will find new friends. Groups that will challenge, all part of redefining the NEW you?! This site helped me greatly, unseen people who are all learning to face their challenges! A safe sounding board, would love to monitor your progress. Any advice we can offer you is threw our own experiences!! Dark times may be ahead, SMILE to spite it works for me. Good luck & visit us often, thinking of you!! X
Smile to spite it, is the best advice! ššWe talk a lot on here sometimes about the problems of having conversations, particularly with new people in social situations, and of course there's often background noise and so on to cope with. But kind of by accident, I found that if I smile at people and ask how they are, they will chat to me, and tell me, and I don't have to say much, and it's then a good social interaction to have. This site is brilliant isn't it? Thank you! x
Post my ABI in 2015 the occupational therapists I worked with suggested that "pushing" the activities too much to try to make progress akin to fitness training was not a good idea. I have struggled a bit with this, trying to find the balance between wanting to achieve and do more in the years post ABI versus not wanting the headaches and fatigue that come from over doing it. For me putting compensations in place e.g. advance planing for a trip out versus trying to do things on the fly has helped more. My smart phone is an amazing support, reminders, maps pre-programmed all reduces the cognitive load and mean I can do more. One interesting thing I noticed in the first covid lockdown, I was doing so little with my time my fatigue / headaches so reduced I managed to get back into cycling which I had struggled to do at all for 5 years post my ABI. Though nowhere near the level I had been capable of, I have managed to keep this up even now when life has become busier again. I have to be mindful of when I go out on the bike as I can still massively over do it. So maybe to answer your original question, that if you can create enough "space" with your limited energy to make improvements in one area while knocking back others it may be possible to then gradually bring others back up and make some improvements. That all said I think some of the easiest ways to make progress is to learn to understand your limitations and how you can work with them e.g. use of compensations, be flexible in your thinking about how you do something, maybe not impose pre-ABI expectations on what you can now do. Hope that helps, good luck.
Really good insight Nasah, thank you, all really good points. Good strategy - interesting how that worked with your cycling. For me, lockdown was the first time I was fatigue and headache free, and I was warned that the hard thing would be when the lockdown ended. The lightbulb moment for me was realising that it was actually possible to be headache and fatigue free - I think as things have gone back to normal, I've lost sight of that point a bit - so a timely reminder. I played chess against the computer last night and finally won a game, but have a bad right sided headache this morning - exactly where it was constantly after my accident, interestingly enough. A sign to ease up I think....
You've using loads of good strategies - I put everything in my phone - reminders, timers, alarms, the diary, maps, the lot! I was embarrassed at first about asking people to hang on while I jotted something down in the calendar or notes, but realised that they don't mind a bit, and just wait patiently while I do it - it's invaluable.
I did wonder if the u3a chess group might be a step too far, wasn't sure if I could even hack it, given the deficiency in my short term memory - but evidently quite a lot of it must be in long term memory, which is obviously fine. It did feel lovely to sit across a board to a real person again, and to win a game! I'd rather thought that bird had flown. I'll try resting up before and after and see if that helps. What I was wondering was whether using my brain so blatantly in chess, would actually encourage it to indulge in a little neuroplasticity - or if it would all be too counterproductive in terms of fatigue?
Of course the good thing about chess - like the art groups - is that it's all very quiet, so I don't have to handle background noise!
this feels like it could be an essay title on a course for occupational therapists, it just needs the word discuss after it. Itās really interesting reading everyoneās replies. For me, I am just discovering that I can do lots of the things I want to do but the dreaded fatigue will kick in way sooner than Iād like. So rather than not do the things I will try and plan everything else around it.
Like if you have your chess club, maybe you want to prioritise that and the rest of that day is pretty chill, or the day after for example.
Also I might just do the thing I like but come to terms with doing it for less time and/or less often.
Also anything that can save energy, either cognitive, emotional or physical to make sure as much as possible is available for the thing I really want to do. Getting to and from a place now can use up so much energy that I am already too tired to do the thing I went to do.
I have managed to get out on my bicycle again (not on roads yet-still too traumatised) but it is so tiring now. Well, Iāve just ordered an electric bike to assist me so I can still get out and enjoy cycling in the local countryside.
And some stuff is just worth the fatigue and the brain injury fallout (donāt tell my OT š).
What a life; glad you guys are all there so we can share this stuff.
Loved your opening line Jonty! Also love all the thoughtful responses - great insights here - and thank you for yours Glad you mentioned the sheer act of getting somewhere - a number of times I've started out relatively full of beans, to arrive somewhere already pretty drained, and practically ready to go home.
Good advice to rest up after an activity. Also doing it before can help. It was really puzzling at the time, but I was told that I should do those odd nice things, even though they would cause a ( albeit planned for) crash, but I see now that the good effect on my mental health of those 'treats' is as necessary as the right amount of pacing.
I love that I can even sustain a game of chess now - it feels really good. It's
really good to hear you have your electric bike and can enjoy getting out on it šš
I was frustrated by my stupidity at how much I had lost the ability to do!! My .5 of a working neuron reminds me all the timeā¦.SMILE!! People around me treat me like a normal being?!! They cannot appreciate how frustrating a TBI can profoundly alter/ limit someoneās ability to do the simplest thing! After ten years of marriage I wasnāt able to sort washing as to what needed ironing, even to pair socks!! Come a long way!! Donāt iron!! Wear odd socks is now in fashion?!! SmILE!!! š
Jonny you raise a really good point there, the getting somewhere can completely mess up the enjoyment of what you were travelling to do. I think that can be one of the hardest things for people around us to appreciate at times, not helped because sometimes the travel will beOK and other not so..... I tried an electric bike last autumn and it definitely helped in terms of the distance and time I could do on the bike. Hope it works well for you.
Painting Girl, yes quiet hobbies and locations a must these days. Also I'm just looking at investing a new pair of nose cancelling headphones, they really help when on the trains.
Jonny, that balance between not making ourselves so fatigued it lays you low for days versus not getting out and doing things. I know that some activities are going to do for me, but if they are really worth it, I just plan a few quiet days either side. You have got to live a bit!
Hi Painting girl,Keeping a log and pacing can help figure it out.
I don't find there is 'an' answer to that question.
Constantly being really fatigued constantly isnt good because you get into a boom bust cycle, which will end up in a stuck in fatigue place if you keep it up, at least for me.
Different activities have different price tags.
And sometimes what ever it is is worth it to us, or we have to do it for some reason.
There is a school of thought that says challenging oneself in small exposures will help strengthen resilience.
There is also a school of thought that says healing happens best with rest. In the olden days before modern medicine people healed from all sorts by being sent to the mountains for 6 months- they breathed the good air and ate bland food and rested a lot. Even going for a walk wasn't recommended til you'd been there a month or two.
You kind of have to develop an in intuition for it.
I have found myself that the small exposures, or doing something a little several times a day, has helped me make progress.
There are also things I have found that have stopped shifting. For example if I had to walk in a narrow ish cement hallway I would fall in the early days, that went to not a fall but crazy tremor - I figured out if I shut my eyes and got someone to pull the walker along I could walk (tremor still triggered but down enough to walk). That reaction seems to have plateau'd and various 'try this or that' haven't budged it. So, I am going to get one of those take apart electric wheel chairs that fits in the back of the car. I don't always know where I will run into what triggers it and I do not have someone with me usually that can pull me out of it (so far is happening when I am at various appointments).
I would say maybe take it slow... like do the volunteer thing for awhile and see if it settles, and then add the chess group - or vice versa. Both at once may be a bridge too far. Or cut down the hours at each activity if you can.
I find I have a bandwidth - some things I can do, but it is a this or that situation... not a this and that situation. And certainly not this and that and the other one. Doing dishes is a particularly expensive activity for me, for example, so they often don't get done,
So, I say experiment and log, then see if you can see or feel patterns.
Hi Leaf, good advice, thank you. Falling on very receptive ears because I overdid the weekend - but wanted to see my granddaughter. The hallway sounds tricky. But those folding scooters are good and useful, sounds like it makes sense - but the weight of them is very variable, so check that. If you can budget for a mechanical hoist to get it in and out of the car, it helps.
So glad that I am not on this journey on my own, PG. Good for you that you're trying. My latest was to see if I could read a book, and remember it. I read a novel - slowly, and going over the same pages a few times - called Violetta by Isabel Allende - a chilean story of someone who was born during the previous pandemic, (spanish flu) and died during this one. Rattling story, which helped.
So, was feeling good, if exhausted. Could not make myself attend the book club via zoom, for which i was reading this - and was fortunately saved by the wifi not working very well.
But it is something.
Not up to many people at once, I realise by going to a in-person, 2 day conference on an academic topic, and having to be around some 85 people. Absolutely drained by this. No time in the near future will I be trying that.... maybe in a year.
Yes, try, test and retire - assess. That is what I am doing, and with support from home, getting on with small improvements.
That's about all I can write. But go forth, and improve. It does happen, and indeed smile to spite it. I learn each time I come to this forum, and it is so encouraging.
Hi Writer, yes, early days for you I think? Glad you're getting helpful stuff on here. A conference would be draining - noise, light, people, organising - tricky. Great that you've worked through a book, I went from being a voracious reader, to being unable to read for more than ten minutes at a time - and yes, I was busy forgetting the plot lines as I went. One suggestion I was given by the neuropsychologist was to reread novels I'd read before, which I was a bit dubious about, but actually it was a good idea. I also found that 'comfort reading' where I read books by the same author, is easier than taking on a new author. I also need to use bookmarks now. I'm up to roughly one book a week now without much effort, trying new authors, and remembering the plots. Perhaps try working out how long you can read for, and read for fractionally less than that, then take a mini break. Frustrating I know, but hang on in there.
That's really helpful - thanks P-G. Starting to think that I can read for half an hour, but always find myself really tired after that time. Must try twenty minutes on a timer.
So heartened by news of your progress in reading. Will try your neuro- psychologist's suggestion to read something I have read before. Yes, me too, using bookmarks. Actually kindle books do this for you - opening the page where you were before.
Thank you W. Oh, I nearly forgot, read in a quiet environment too, if you can. I still don't read with background noise like music or the TV. But now I can finish a quick read in a couple of days.
It's very hard getting to the year mark, things do carry on improving though.
My Kindles are both playing up unfortunately, but the library is just a short walk away, and I just request anything I want, if they don't have it in stock there - fantastic system! š
Hey Jen. I'm a poor example of correctness where brain injury is concerned . I know the rules and would recommend them to others, but it's 11 years for me now and I still can't keep myself in check. Even as I wait for knee surgery (v. painful) I've spent a week dragging myself around my garden ; revamping, pruning, mowing, edging, planting etc., and today (& for the next few days) I'm paying for it.
For me, the rewards are immense and well worth the crash. I've always been a boom & bust sort of girl and don't see change coming anytime soon. But I'm sure you'll find your own way Jen, and maybe engaging more with the physical world will enrich your days and compliment your other talents.
In answer to your 'Help or Hinder' .......I think if we have the strength to attempt something new, then we're strong enough to bounce back if we've taken on too much. You've already proved your abilities so, maybe with further time for adjustment (& confidence) in other areas, your headaches and fatigue might ease ? I hope so m'love.... x
'I think if we have the strength to attempt something new, then we're strong enough to bounce back if we've taken on too much.' I think so too. Just recovering - slowly. Quietly. Your garden sounds lovely by the way - keep going. I have a feeling that I might be a boom and crash kind of person too. š
Ha ha.. Enjoy the booms and don't beat yourself up for the crashes ! I'm quite enjoying my 1st 'down' day with good food, rest and Netflix ! (I've even broken into someone's Easter chocolates - so need to replace them before the weekend š¤«). x
Hi Cat, I sort of get that, when I step out of my 'energy envelope' and try new things, even with a crash, the resulting mental boost is great. Sounds like good gardening - satisfying šš Sorry to hear about your knee op - hope it helps you. Knees are a pain, literally ! I've been doing that volunteer office job for a while now, and it killed me for days after at first - horrible headaches , but gradually the ill effects reduced, and were more getting washed out that afternoon and the following day to some extent - and I was enjoying the feeling of competence in being in an office environment, and being useful - and after a few months, suddenly I realised I was typing at close to my old speed again, instead of painfully slowly - so it was like the practice and pain, in the end, led to an improvement in my functioning - some new synapse sprung into being š¤£ Interestingly, it was very quiet, as I was on my own - that seems to be a key thing for me I realise reading back on here.
It was great playing chess again - I did wonder how it would go. Have given myself a couple of humongous headaches practising with apps at home though. Just wondering if the mental workout will reap any brain benefits? Who knows?
It's so easy to get into a downward spiral though, I trigger off fatigue, even trying something rewarding, which makes my sleep go awol, and then I feel like hell in the daytime, and don't do things I would like to. I do worry about triggering long periods of inactivity, as overall I'm thinking that's not good, and I'm obviously losing muscle now. I obvs need more gardening in my life!
I used to play chess regularly (none competitively) and you've reminded me I still have a handsome set in a bedroom cupboard. I'm going to root it out and see if I still have some moves. š„“
I get why you're apprehensive Jen ; these decisions can easily backfire for those of us with precarious brains. But we're damned if we do and damned if we don't grasp opportunities which could be life enhancing. I hope you'll make what feel like comfortable choices ........and that the rewards far outweigh the 'penalties'. Cat x
You're right about the damned if we don't/do thing, Cat - and it was the thing that puzzled me most when I had all that input from the physio and the neuro people on fatigue, that I wasn't supposed to overdo things - unless I wanted to! I suppose the difference now, is that I'm more selective in what I choose to do overall - it's more like you choosing to do the garden, or me doing flower arranging, or trying something new, like chess - we know there's going to be a hit, but the achievement/ buzz is worth it. (Trying to convince myself here - still washed out from last week... But the mental uplift of doing something different is still huge ). Thanks Cat, voice of reason as always šššx
Hi bonfire - I have in the distant past when my nieces and nephews were small - you can do a roast if you put enough large bits of meat in the oven.....
Ok Teazymaid, now Bonfire has asked the question, what did you feed your 13 people? It sounds like a lot of organisation, had you always cooked a lot before? (Must admit, I'm in awe thinking about it Sue - have enough trouble feeding myself alone these days...Jen x) Teazymaid
Hi Jen, really good post - and difficult to answer really! I dont think there is a right or wrong/do or dont do on this one. I like you had my head injury over 2 years ago now, and looking back the improvements i have made have been immense really compared to where i was even 12 months ago. I think youve said it to me (probably on many occasions!) about not trying to overdo things, and knowing and listening to our bodies and understanding the "energy envelope" we all have to work within. Really great advice, and something i do every day. I have shifted a little on this though more recently (or have i just recovered a little more?). What I would add to that great advice now is - if your feeling good and having a "good day" then go for it - try and do all of the things you want to do, and yes - push yourself a little if you feel upto it (not too much to cause a crash) but I think this pushing of the boundaries (if you like) does over time make a difference - im no expert obviously but Ive found using this approach, rather than trying to "save up" the energy so it lasts a bit longer actually works better for me. Ive found it builds up your "resilience" (for want of a better word) of doing these things and over time they become a little easier and more "normal". I wonder if the brain/body starts to learn or re-learn that it used to be able to do these things and can so do again over time (plasticity is it?) I mentioned on here a little while back how i had a really good day and just did everything i wanted to do pretty much - and in the process I went way over and above anything id ever done since my accident (& I almost doubled my step count!) - Ive had a few more similar days like this since then. Is my brain/body learning that I can do these things? Or is it natural recovery? I dont know, but I think you just have to go with how you feel. If you joined a new group Im guessing it would be quite physically and mentally challenging at first, but over time it should hopefully get a little easier for you? (but obviously that takes time and the crash/recovery cycle needs to be taken into account).
Ive probably gone on far too long as usual.. but I hope you get what im trying to say!
I think you're right Bb , I think we can build up a tolerance to increased activity, so even as I get used to the new route there, and learn enough about the others so by that I'm holding less in my short term memory it should be easier. And yes, sometimes it is worth the crash to have a really good day - we just have to be picky about what's worth having a crash over!
I do still bear in mind the advice I had to plan for timeout before and after - I did the flower arranging competitions but made sure I had frozen some homemade food in advance, and thought harder about taking breaks to make it easier to manage during crash phase (though why even now, are the crashes worse than I think they'll be in advance - talk about the triumph of hope over experience?!) It's so hard to manage my own expectations - I was thrilled to just play a really enjoyable face to face chess game after more than ten years, but much less thrilled to find I could give myself a stonking queasy migraine by deciding to obsessively practice on a chess app to improve my very rusty skills.. I think the latter activity is rooted in 'old me' and I need to find a compromise with myself.
I wonder if I'm in a new phase, now that I've increased my weekly activities, in that I'm starting to consider what the best way is to live going forward, how to keep myself physically active, eat sensibly, and to keep a reasonable environment for myself, and have enough social and mental activity on a day to day basis, without taking timeout for crashes, just to keep myself healthy as I age.. and not feel permanently just under the weather. But I guess there will always been trade offs! And even neuro normal people struggle to keep a healthy balance. I must be grateful for the progress I have had.
Am just working out how I'm going to get to a major family celebration four hours away at the end of April and to cope afterwards..
Yes, you are going through changes, just like I am. Its a good thing isn't it - it shows we are progressing but yes it's a lot of trial and error, and trying to adjust and push ourselves a little is a fine balancing act! I've found one of the benefits I've had in being more physically active is I have managed to lose almost a stone in weight in the last 6-8 weeks or so. That in itself has I think made me feel a lot better overall I think. I'm still around 20lbs heavier than pre accident but hopefully finally moving in the right direction! I am sure you will get your planning right with your end of April family celebration, (even if it does cause the inevitable after effects!). I think the fact you are planning for it shows great progress - could you have done that 12 months ago do u think? I could never have done a trip like that in my first year. I hope all goes well š. In other news, I finally had my at-home sleep test last night,had all kinds of things strapped to me recording heart rate, breathing rate, oxygen levels, movement etc. It was a bit odd (and I didn't sleep very well unsurprisingly!) but hopefully it will help in finally getting to the bottom of my sleep issues. Let's know how you get on anyway, thanks and best wishes, Bb.
The sleep test sounds interesting Bb. Hope it is helpful. The evil combo of getting over fatigued and the hour forward seems to have thrown my sleep out of kilter entirely....Best wishes,
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