Hi all, I hope everyone is doing OK. It's been a little while since my last post so just I'd check-in.
Its almost 18 months now since my head injury and subsequent struggles with multiple PCS problems,the good news is things (I think!) are starting to gradually get a little better. No massive improvements as such just little, gradual steps, fatigue, vision issues etc all still present but I'm managing things better now. I think it's definitely true (and I was told on here by many friendly ppl! ) that u really do need to just take things one day at a time, and try and manage the fatigue as best u can - and try avoid getting into the boom and bust cycle (which I did all the time) and ending up back at sq 1. It's finally working I think. Little 'brain breaks' during the day have also made such a difference also, just 10-15 mins 3 or 4 times during the day help resets things so much and allows me to keep going rather than hitting the wall and collapsing in a fatigue heap. Gentle exercise has made a massive difference also, I can't run 5k 3 times a week anymore but just a 20 min walk each day has done wonders, even tho it's really hard to do sometimes - as ppl will know!
Treatment wise, I'm currently undergoing neuro psychology assessments following my (clear) mri results a while back, Im also booked in with a private neuro opthalmologist for an assessment and hopefully they can help with the vision issues (standard opthalmology was all clear aswell). Anyway I've babbled on enough. thanks all & take care! Bb
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Yah well done - I too struggled with the boom bust cycle for quite some time! And then finally sorted myself and boom had another knock to head! I’m 3 years from original and 2 years from second and still enjoy a good brain break twice a day. Defo help! Celebrate the small things I have learnt 😀 take care 😀😀
Thanks Beachlovingkiwi - glad to hear you are doing so well. Your definitely right about celebrating the small things - I think we can be (unintentionally) too hard on ourselves during recovery, "why am I like this" and "I should be able to do these things" were things i used to say to myself all the time, and i think that contributes towards holding back your recovery as u become stuck in a negative mindset. If I have a bad day now (which I still have plenty of) - it's just a bad day, we go again the next day. What has happened to us is not our fault and we are doing our best to get better. I hope this helps ppl who maybe early on the road to recovery from tbi - it does get better - but it takes time - I only have to look at previous posts I've put on this forum from 6-12 months ago to see that. Take care everyone, Bb
Totally! I still have to stop myself from thinking and saying but I used to be able to do this and that - and simply just accept that I can’t right now 😀 acceptance is such a huge part of the journey 😀 things defo get better - patience is also the key to that. Take care
Hi Bb, it's really good to know you're seeing progress taking a one day at a time approach, and managing your energy levels. Hope the opthalmology and neuropsychology are helpful too. It feels a little weird getting a clear MRI - but as we know, that's a normal finding after MTBI.
Thanks Jen - and thanks again for all your help and encouragement - it really has made made a massive to me! Managing fatigue as u say is key. Also, for me things started to change when I started doing gentle exercise - I noticed I have a bit more "in the tank" in the mornings so decided to go for a walk one morning in the local park before work - that was 2 months ago, I do it every day now, including weekends and I've felt hugely better (on the whole) since, still got to be very careful not to do too much (the old me trying to get out is still there!) but it's been so helpful in my recovery. I hope u are doing well? thanks so much again, take care Bb
Hi Jen, hope u are good? I was just wondering if u have had any advice regarding dietry supplements to help with fatigue etc? I had my first neuro optometry appt at the weekend, and it was a bit of an eye opener tbh (no pun intended!). My optometrist was really good, has worked with soldiers dealing with combat injuries for years and seems to really knows his stuff. He has recommended (amongst other things) some dietary changes including taking a supplement called resveratrol? This apparently has had some really good reports on its use in improving fatigue symptoms, just wondered if u had heard about it? I'm going to give it a try anyway, along with few other things. I was also told my eyes are absolutely fine (backing up the NHS actually) so what is happening is in the communications between the eyes and the brain, which (in a way) is reassuring in that I know now for sure that my vision problems are down to the Mtbi. Anyway, just thought I'd ask the question, thanks a lot and best wishes, Bb
Hi Bb, sounds like you found a good eye chap though. Sorry that you're eyesight is a brain thing - but perhaps it is good to know.
I don't know anything about resveravatrol I'm afraid. Sounds interesting. I think there's ongoing research on ritalin for fatigue in one of the Scandinavian universities.
It's important to keep your vitamin D levels in the normal range as low D can give you fatigue. And Omega 3 is supposed to be useful - but given the various health issues emerging with supplementation it is probably better to get nutrients from your diet - Tim Spector's books are interesting in that front.
So oculonotor and vestibular exercises might help?
Thanks Jen, yes it is good to know, even if its not good.. If u know what I mean! At least I can hopefully channel my efforts in the right direction now, I've got some more appts planned over the coming months to go over just that actually, we did a few exercises at the weekend, I nearly fell over trying to track a ball on the end of a stick! I'll have a look at that Tim spectre stuff, thanks. I didn't realise just how important diet is for this, I'm going to really try and make some improvements in this area. I remember u saying a while back how much you try and keep the 'good runs' going as long as u can, Im starting to understand that now, esp since my last couple of recent crashes, which have prob been my worst yet, I just got carried away with the -'old me' kicking in and causing me to do too much and crash. It's all about discipline isn't it. Thanks again, best wishes Bb.
Sorry you've had some bad crashes Bb. Not always avoidable, so try not to beat yourself up. I agree it's a shock when you do something 'normal' and it knocks to you out though.
Allow yourself to do some things you want to do, even if you know you'll need to make allowances for yourself afterwards. This week for me is a case in point, I've got overbooked and want to go to a flower arranging demo tonight and two art groups tomorrow - so I assume that Thursday and Friday are going to be a total bust - easier to be cheerier about it in advance - will probably be kicking myself really hard on Thursday!
Watch your mindset doesn't 'keep' you in a crash - it's easy to let our thoughts follow a downward spiral when we're knocked out, which makes it feel even worse Try and keep a list of anything you can do when you're very fatigued that won't add to it. I paint, wash my hair, meditate, do yoga on YouTube, or my fingernails!
Diet - with that and exercise, I suppose it's about keeping ourselves as well as we can really, to give ourselves a chance of handling the fatigue.
It's weird how the balance thing goes, isn't it. I had one set of eye exercises where I had to do then sitting, then standing feet sightly apart, then together, and then with one foot in front of the other - and it was amazing how much harder it is good each time!
Thanks Jen, it's always after a busy weekend when I usually hit the floor, your right about not beating yourself up, been trying not to do that, it's tough tho when ur in a crash as u know,as it effects you mentally as much as physically, and can put u in a real bad place if we're not careful. I hope u manage to do everything u want to do this week - even if u are shattered afterwards, as u say you kind of know its coming so can plan ahead, will have to remember that for my next one.! I'm off to the lakes at the weekend with my wife, I'm looking forward to it and dreading it in equal measure I think! Furthest I've been in 18 months, be a good guage of where I am I suppose, trying to go easy on myself in the build up this week...! Best wishes and thanks again, Bb
Have a good break and enjoy the time, it's important to have that mental refresh, even if you are a bit wiped out the week after. I went off with my sister due a few days and it was really good to get away.
Thanks Jen, I'm determined to make it a good weekend, even if I know what's coming next! Luckily my wife enjoys more leisurely activities (than I did previously) , so I'm guessing there'll be a few pub lunches over the weekend and prob not too much walking 😀. I hope you enjoyed your flower arranging and aren't too wiped out today. Have a great rest of the week, best wishes Stephen.
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