Ive had many ups and downs since my head injury and subsequent PCS diagnosis 2 years ago,just like everybody else.
One thing however, which has been fairly constant throughout is, well to put it simply - I just don't feel "well" for pretty much most of the time, I can't even describe it either - I just don't feel right. Im assuming it's probably to do with the fatigue causing feelings of nausea etc but just wondered if other ppl experience this aswell and if so how are ucoping with ti?
I've been to my gp on numerous occasions and had lots of tests but all have come back normal.
Im starting to think I just need to accept this is now the new normal, however surely it isn't right to be like this all the time?
If anyone has any success stories with tackling this I'd love to hear! 😀
All the Best, Bb
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Bb1878
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Hi Bb, don't give up, you can accept the situation as it is now but don't accept that this is how it will always be. I had PCS, was told after 2 years that I'd never recover, I did not accept that prognosis and tried all sorts of alternative methods, and guess what, I am now more or less fully recovered. You need to remember that last year the ABI Bill was passed in parliament. It said in simple term the medical, care, DWP and justice system had ALL failed in regard to brain injury. This means that the system on the whole is unfit for purpose.
If you don't mind I can share a little advice. Take recovery seriously, make it a goal in life, forget everything else for now and concentrate on getting through it. Don't be afraid to try alternative methods, optometry, vestibular therapy, meditation, mindfulness, yoga, walking barefoot on grass (this really helped me), standing in cold water etc, just try everything you may be surprised. Just because the NHS don't recognise these 'mumbojumbo' therapies does not mean they don't have any effect. Remember the NHS was found to be unfit for purpose regarding brain injury, big failure in diagnosis and rehabilitation.
When I said take it seriously I mean avoid all the triggering events, all of them, such as LED lights which includes screens, get rid of your TV, limit going to shops or office and pub/cafe type environments that are bright and noisy etc etc. Structure your days so that you do a limited amount of activity and rest often. Try not to get stressed about anything. I remember I was guilty of pushing and overdoing it, going into bad triggering environments, then crashing. Then when I took advice seriously everything changed, it's not an overnight thing but slowly you will notice the change occurring especially when you try something new and stick at it for at least 8 weeks. Why 8 weeks? It takes 8 weeks to hardwire a neural process in the brain. Just concentrate on one therapeutic therapy at a time, do it every day in a structured manner and after 8 weeks you will notice a change, it's the basis of neuroplasticity.
It's doable, I've done it, others have done it, just try things out and see what happens, never give up. Motivation is more than 50% of the process. I'll get off the soapbox now.
Thanks a lot for your very detailed reply! It's much appreciated. I've made decent progress over the last 12 months or so I think, but do seem to have hit the buffers somewhat recently. You've made some really interesting suggestions there,i was actually wondering about meditation/yoga & whether they could help it sounds like it's worth a try so will give it a go!
I do try and limit tv and screen time, difficult sometimes as I work in IT and live in a busy family home but reckon I've reduced my tv/phone time by about 70% overall,very rarely watch anymore than about 60 minutes of tv per day now plus my non lcd phone has helped a lot (my hisense a5 e-reader phone is a godsend!). Probably still too much I know, will keep trying to reduce that.
I didnt know about the ABI bill, will read up on that thanks. To be fair my gp has been very helpful but i think its just hit the point were they cant help me anymore (prob as they dont know what's wrong I guess) I dont like calling them anymore, doesnt seem worth the hassle.
I'll keep on trying, admittedly I've had a few wobbles and have allowed the negative thoughts to take over again recently so thanks for reminding me I'm still in the fight.
If theres any chance of more improvement I want to grab it with both hands.
Hi BB, I've got to admit that I thought I had reached the "as good as it gets stage" for a long time. Probably up to 5ish years, then more by luck, I revisited some old assumptions with a new team. They reviewed everything from square 1, and within a couple of weeks the colour started to come back into life. That was having a few tweaks to my meds.
We do hit a few up hills, and a few plateaus along the way, but this is standard in life. When we have a chronic condition we can focus on the negative. In the past it would have just been part of life's rich tapestry and we would have just glanced over the details.
I hate the people with the overly positive attitudes, always look on the bright side of life brigade, that just isn't how I operate, but there is something to be said for keeping hope, looking, and grabbing every opportunity, never accepting this is as good as it gets , make the most out of what you have got, and believe. 🍀
Thanks a lot Pairofboots, it's great to hear you made progress after 5 years - that's amazing! I know I have made progress over the last 12 months or so, but I guess the negative mind set that sometimes takes over tries to make me forget that. I've joined a gym recently, been doing some (very gentle) exercise which I think is helping, whilst trying not to do too much to bring on a crash, it's a delicate balancing act as we all know! Think I am going to try some new things, keep pushing as u say, its just the constant "unwell" feeling that's been getting to me recently, and knowing I've hit a brick wall with gp/nhs. Your right though - its time to kick that thinking into touch!
Hi Bb, I appreciate your post, because "Yes! I know exactly how you feel." I am 7.5 years post-resection and I haven't fell well since that first surgery. I decided early on not to allow m unrelenting "not wellness," to define me. However, there are days and "new normal changes," can really get me down. Fortunately, there are more days when I am proud of myself for successfully getting through a day.
Thats a great attitude to have! I do try and keep positive but as you say there are times it really gets you down. This is especially so when you think you are in a good place and are doing well - thats when we are at our most vulnerable ive found, as its only ever a couple of steps behind you waiting for a dip then your back in the mire. Still - as you say dont let it define you - you are completely right! Thanks again
Believe me, I go to the dark place: I am not a positive person everyday. In fact, this last week, (or six months!) has been awful! I find myself trying to justify why the day-to-day struggle is worthwhile. To counteract these negative thoughts, of course I do the things we're supposed to do, and look at what I could do to make my lot better and take action. Things like "Stop isolating!" But occasionally, I need to hide-out in bed and turn off my phone and allow myself to feel vulnerable without guilt.
The "unwellness" is my biggest foe. Early-on I believed I would get "well" eventually. Seven years later I learned that I am well-enough. I don't like it, in fact I hate it. It drags me down. Finally finding a support group like this REALLY helps me. Thank you for sharing your feelings, because it helps us.
Hi MimiSpree, thanks for sharing aswell - it has helped me to know other ppl feel the same way as i do. It does feel a lot of the times like each day is an uphill battle, and you do have to retreat and rest up sometimes. I find it particularly tough when you are on a good 'run' maybe 3 or 4 days feeling "ok" only to have the inevitable breakdown again, its like going backwards and each of these setbacks is very demoralising - but when this happens i try and tell myself - its just a bad day & tomoro will hopefully be better. Plus, on the positive side, after a setback its still a fact that you cant actually have a setback without making progress - so things must be improving, although very slowly! We are all doing our best and i think we forget sometimes to be kind to ourselves more.
Hi Bb, as you know, I had access to a lot of decent external rehab pre the first Covid lockdown, which really jumpstarted a great deal of recovery when I'd stalled. What I found during lockdown was that suddenly I started feeling really well - because I wasn't having to physically get myself to appointments, and we were all doing a lot less socially of course. (My neuropsychiatrist said that all his fatigue patients were thriving in lockdown, but he was warning everyone that coming out of lockdown would be a problem) But lockdown was a bit of a revelation for me, because once I understood I could feel well by doing less, I was more reluctant to lose that feeling of being well by overloading myself, and all the coaching started to make sense and fall into place. Unfortunately, the flip side of this is that I became reluctant to exercise as hard as my physio wanted because of the impact on my fatigue, and I've let my fitness slip too far in favour of doing more interesting things I think.
Plus I've gradually increased what I do in a week- to make quite a rewarding retirement actually - but recently took on something extra a week and have tipped myself into a bit more of a bust, I'm still loads better than I used to be - but I guess what I'm saying, is that we have to do a fair bit of self monitoring (which is tedious) and it's human nature to want to do as much as possible.
I've actually realised that when I reply to you, I always seem to be in a relatively new slump - it might be when I'm tired I'm more likely to be online on my phone ( spot the deliberate mistake!). But it's making me think that I'm not fully out of the, albeit more gentle, boom and bust cycle these days.
I notice that if I get a bug and huddle down for a few days ( like this week - felt rough and canceled everything except my Covid jab and a bit of housework) the enforced rest actually makes me feel better - despite having a bug, so I know that I am getting a constant level of fatigue from my 'normal' activity levels. I'm now thinking of canceling at least one activity a week now, possibly two, to try and achieve that feeling of complete wellness again - or at least make some space for more exercise.
You've done brilliantly to be working, I suppose I would ask is, what have you cut back on to give you space to do some new gentle exercise? Can you think if there is a way to rest up a little before and after you exercise so that you can build this in successfully?
( Ha! Spot the deliberate mistake today - rested for a few days, felt better today, did 9000 steps, had a lovely day shopping and so on, despite vaccine, and now am evidently in the throes of insomnia - which is one of the first signs that I've overstepped my activity levels / fatigue envelope... Bother! )
that they couldn't find anything is really good news. It means your injury hasn't messed too much with your automagic systems.
Others have given some great advice and insight.
The only things I will add are:
healing keeps happening
pacing yourself is really helpful
get enough sleep, eat well, mild exercise, fresh air
I had nausea for quite a long time, I don't remember exactly but I want to say 5 years anyway. It worked its way out by itself. (I tried vestibular therapy and that did nothing but make things worse. I don't know if it is contraindicated for bi but you could find out from Headway. I was going by guess and by golly at that point.)
The neuro visual avenue may help - see if you need prisms which can help the sensation of things not seeming to move so much around you and some other things. THey will try to get you to do some other therapy, but there is no standard of practice there and whether or not it works is hit and miss - plus you feel like hell when do it.
If you haven't heard of pomodoro's check them out. It's a technique used in businesses for productivity - it's basically work x minutes, rest x minutes, and every 3rd break rest longer. It really does help.
I live in Canada and found the rehab here completely unhelpful. This is because I wasn't able to access it. I couldn't do anything in groups for literally years, and when I could, they said I my injury was too old. (And as I met others who did do it they said they just were overdoing it and couldn't keep up and didn't get much out of it anyway. They do it too intensely and too soon.)
I can tell you healing keeps happening - maybe not as fast as in the beginning. I can't comment as I was pretty messed up.
I can also tell you that sitting back and quietly observing with a curious mind can show you what your brain is processing and working on. It is always trying. Once you have this skill you can see where the window of opportunity is and practice things in that area. You have to do this yourself, a therapist wouldn't know anyway.
Plus, you can also just pick something and keep trying, finding coping things, trying again, look up alternative therapies on line, think what might help your brain figure it out.
As for feeling unwell - I had bad pain for years, headaches, assorted odd feelings and pains etc. Never felt well. In comparison now I feel tons better. In comparison to how it used to be - I'd be calling a doc every day. As time has gone on I know what triggers though and also am finding things by trial and error.
Life can get a lot better. You may find you enjoy different things now and life will change - you know it has already. It's not necessarily bad, it's just different.
So, for me, it's been a combo of healing and also being ok being where I am. That doesn't mean not getting frustrated sometime.
Do research alternative therapies carefully, some things are quite expensive and not all of them work for everyone.
I'm glad the system in the UK has been found not fit for purpose- as you discover things some of it may trickle over here.
I'll continue to pick away on my own and keep my eyes open - one day something might be available, you never know.
Ok, so maybe not a story of cure - one of letting you know those crappy feelings aren't all going to hang around forever - you do keep healing.
Remember to rest and watch the energy budget and try to keep stress down. ha ha.
Forgot to say last night, but Leaf's rather good post reminded me . My neuropsychologist's fatigue coaching was based on logging how I felt out of 10, three times a day, and logging what I did inbetween. Once a week she then got me to review it with her and just focus on a couple of points in the week when I felt worse and unpick what the trigger was to not feeling well, and then to think up a strategy for going about the task differently to avoid feeling rough another time. OK it's easier to do with someone else asking you difficult questions - and tbh sometimes just laughing at the point where you crammed in way too much and should have known better... But perhaps you could apply that technique for a few weeks and work out what does make you feel worse - or even just less than ok? Try to analyse it, and then experiment with different ways to circumvent it.
The physio's suggestion on walks that left me flaked out the next day, was to stop halfway, sit for twenty minutes, and have a snack like a cereal bar - I carried nuts and raisins with me for ages. Also to rest up before and after anything that was likely to stretch me too far. The neuropsychologist picked up that I usually overdid things at the weekend - things were less in my control, and to aim for a quieter Friday and Monday. Small changes can make a big difference. My latest crash is because I started doing an Alpha course on Monday evenings, so the week is actually now too tough. Some new things, like volunteering to do very basic admin work (on my own in a little quiet office) were impossibly hard at first -blinding headaches for two days after, but by carrying on have become less hard as I've adapted to the cognitive load. The benefit to my self esteem is incalculable though. I've gradually built up my activities to four regular meetings in the week, including church on Sunday, plus one fortnightly, two monthly, and then three other flower arranging competitions a year, which each take perhaps four days to set up, but I do cancel other stuff on those weeks. That said, on reflection, I've been too tired to cook and clean on a regular basis, and I haven't put aside any time to exercise - so I think some adjustments need to be made. The good thing is that now I have a good circle of friends locally, and I don't mention brain injury in every conversation (like I did at first....) and that cognitively I have made improvements - not that this post hasn't still taken ages ( apologies to anyone trying to wade through it).
Bb I think only you can make the decision on what is essential to you and how you can make it easier to cope with it. But it is possible to get to the point where things are easier - though harder to do this in a work context.
It's very dispiriting to always feel under the weather and I think it can creep up on all of us at different times. But gentle exercise is good for your mood and health and can help you cope better generally. Do monitor your heart rate though - that does seem to have a bearing on PCS symptoms. Work within your comfort zone, and only increase gradually.
Thanks for your replies. Sorry to hear about the insomina - it does seem that we find ourselves lurking on these forums more during our downturns! I hope you get the balance right soon and get back to feeling well again
I think i have probably taken my eye off the ball in terms of activity/rest - doing more when i feel ok seems natural, but as we know you pay for it in the end. I decided recently, that i needed to step things up a little bit - ive made real progress over the last 12 months or so but do feel like i stalled over the last few months, so ive gone back to basics and tried to be honest with myself about the things ive been doing which could be impacting me negatively. One of the things was stressing out too much - i ranted on here recently about it, i realise now i was in a real crash when i was posting that and probably wasnt at my best! So, ive tried to relax more, that has helped. Ive also stopped drinking alcohol - didnt drink that much anyway but think even a few beers at the weekend i ended up paying for later in the week, so knocked that on the head. As ive got more energy of a morning i decided to try and do some exercise so ive joined a local gym, and for the first week or two i was doing really well - thought id cracked it but no, it was just waiting in the wings for me to have a dip and then its took hold again - damn! Im not giving up on the gym tho, i just need to tone it down, still part of me thinks i can do what i used to do (i used to do loads on the tradmill) but i cant, no point now. Slow and steady has to be the way forward, just need to monitor myself closely and not do too much when im feeling good, as it sure as hell will make you pay for it at some point down the line. Looking forward to feeling well again, its there somewhere i just need to keep trying to the right things to get back there.
Thanks again, and good luck with everything, sounds like you are doing great
Hi Bb, sounds like you are doing great too - you certainly seem to have a handle on how to cope with this. So frustrating isn't it trying to keep get/ that balance? I wonder how much stress it actually puts on us when we're working just above the threshold we need to?
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