Hi. New here and not sure if it’s going to help or not? My injury was “only” 4 months ago. I thought I would be “back to normal “ by now.
I have tried going back to work a few times, colleagues are running out of patience and pressure to get it done are probably my own manufacture but as it’s a high cognitive function role with no option for half measures. There is zero guidance despite reaching out so I am aimlessnessly waiting to get “better”!
I am sure I am not alone…
Wanda
Yeah, I guess at four months and before that after being discharged from hospital all I wanted to do was get back to normal. Its a natural reaction so your post is unsurprising and expected.
I am now much more exacting, critical and analytical which is perfect for my detailed job, that relies very much on those factors but I do find some things take longer than before.
So there are plus and minus points obviously. I think I am also happiest when I am doing that part of the job role and I am now a number of years post trauma.
What I will say is try and take the positives where and when they appear. My neuro commented about my determination and positivity without any prompting. He was obviously very observant and knew how the cognitive function works and repairs itself, (sometimes all too slowly it feels) but stick with it, dont expect miracles and sadly us survivors do face an uphill struggle educating the masses of their ignorant presumptions. So its not you. They are lacking the knowledge.
But you are back and making great progress by the sound of it.
Keep it up but work at a pace that suits you. 😀
Hi Wanda,
It's still early days and you have a lot of healing that will still happen.
That you have been able to go back to try work already is really an achievement, and not to be overlooked. You may need some accommodation and limit yourself to certain types of tasks for awhile.
You also need to get advice (try Headway for example) on your rights and responsibilities and possible scenarios. For example, often the insurance where you work must cover you if you can't work at your job as before, but if you quit there and try for a new job later, the insurance won't cover you as it is a pre-existing condition. So, unfortunately there are practical things to consider - and you won't be aware of everything right now - that comes with the brain injury, I'm afraid.
Of course you want to get back to your life as soon as possible, we all have felt that way - perfectly normal.
It's also normal for people around you not to clue in - they see you walking around and expect same old, same old - but, the brain has been injured and it takes time to heal.
I would suggest calling Headway. You can perhaps get an assessment done that will help you know where your strengths and weaknesses are and you can also get some therapy to support your healing.
Some people do have long term impacts, and some do manage to still pick up their life - and find they have to rest more and can't do as much as before. And some have longer term impacts and can't work at the job they used to, or at all. It's hard to know how it will work out in the early days - sorry to have to tell you that - but you do need to know so you can cover your bases.
For now I might suggest you try pacing - there is a technique called pomodoro that is used in business. You work a certain amount of time - say 20 minutes, and rest 10, then work 20 minutes, and rest 10, then work 20 minutes, and rest for 30. This is used by many to increase focus and productivity. Of course, since you have an injury you may find you are best to work 10, rest 10...etc. Or , for some tasks, the work time may be even shorter. You will have to work it out through trial and error.
This idea also helps at home. Generally it is best to rest before you burn out, as the recovery time isn't as long.
Pacing can be hard to adjust to - we are using to going full tilt as if we are a factory with 50 people working in it - but now there are only 10 people working in the factory so of course they can't do as much - and they are unfamiliar with some of the jobs - they can learn them but it takes time.
So, what you are going through is generally what happens, so try to be kind to yourself. After all , if it was a broken leg you wouldn't expect to go run a marathon while it was still in a cast.
Try to take it slow and steady and be curious with yourself, rather than critical - it will help you become more self aware faster, and this in turn helps you develop coping strategies.
Leaf
Hi. My injury was 10 months ago and my doctor said anything less than a year to be fully functional again was good. I’m nearly back full time and I can still feel my cognitive function improving each week. I have great ongoing support from a community based neuro rehabilitation team - might be worth asking your GP if this exists in your area.
Hi WW, so sorry to hear this, but welcome to this forum. Concussion is an odd thing I've found - and I think it adds to the worry when a bit of googling makes you think you'll be fine within three months. In practice, recovery times vary greatly though. It's a very strange time to deal with, because most of us have not previously experienced health issues that last so long before. A good start for help is to ring the Headway helpline in office hours - they are a great source of support - 0808 800 2244. At four months I'd be inclined to ask your GP to refer you to a neurologist that specialises in concussion and post concussion problems (they don't all specialise in the same areas, and this makes a great difference to our outcomes). Neurologists tend to refer you into other specialists, so don't be worried if they refer you to neuropsychology or neuropsychiatry - it's not because they think it's 'all in your mind' ( which was my own worry originally) but because of the historical way these medical disciplines have evolved - in fact the neuropsychologist and the neuropsychiatrist were the first people to tell me that all the weird symptoms I had were totally normal after a concussion ( that was such a relief). You can have neuropsychological tests done, which point out what areas you are having trouble with (planning, working memory and so on) and a good neuropsychologist will then be able to coach you to cope, based on your own test results. I improved quite rapidly with focussed help - once I got in front of the right people. I accessed specialists privately using my firm's medical insurance, so I'm not sure how things go exactly on the NHS, but Headway will be able to guide you on that.
What sort of symptoms are you experiencing at the moment?
One of the things that helps enormously is to take regular 'brain breaks' - when you preferably lay down for at least ten minutes in a dark quiet space - sometimes we need to do this hourly. So no tv, radio, book or phone use in that time, as these can all 'drain your battery'.
Hope you get the support you need WW, and keep posting on here, it's a huge source of support.
Thanks for this Painting Girl. You ask what symptoms? I have a permanent headache, tinnitus and a hyper-awareness of my surroundings when they are busy or noisy, that makes focusing difficult. Fatigue and unable to think complex thoughts. The idea of an instructional document just makes me want to switch off!
As a medic myself work is pretty much all or nothing. Phased return is not designed for leaders!
I will call headway. My local hospital has no neurologist who specialises.
Hello WW, oh I sympathise, I remember that wretched 24/7 headache. All that sounds perfectly familiar. So are you just under your GP at the moment? The general assumption seems to be that everyone just recovers in three months without help, but not everyone does unfortunately - the timelines do vary. With the benefit of hindsight, I think there's a tie-in with headaches and fatigue, so try laying down in the quiet every hour for ten- fifteen minutes, and experiment with that. Sometimes a half hour nap in the morning and afternoon works as well - and in very trying times, do both!
What helped my headache the most at the time, was duloxetine, it gets prescribed for fibromyalgia. I also haven't realised how anxious I was - though I'm sure a great part of that anxiety was wondering what on earth has happened - so being in front of knowledgeable medics helped a lot. I was originally tried on various migraine drugs (by the non MTBI specialist neurologist - who was really trying to help to be fair, and luckily referred me on to a friend who did specialise - though he did say the best neurologist for this only took NHS patients) but the migraine drugs were all a bit of a nightmare for me. At the same time as the duloxetine I was also having physio on my neck from a sports physio who specialises in treating concussion who worked alongside neurologist #2. The physio also coached me on handling the fatigue and gave me exercises to do for the other weird concussion side effects ( I couldn't cope with supermarkets or large shops at all for example) as he said I had oculomotor problems - the good news is that the exercises do work, it all works actually, having stalled on my recovery I improved massively with targeted help.
(My own work was pressured likewise. I couldn't even pull together a coherent online supermarket order, let alone handle work). My neuropsychiatrist was very clear that any phased return had to be medically supervised rather than on a schedule artificially decided by HR. I'm not a great example I'm afraid, because I didn't get back, (but this is where the very variable nature of post MTBI kicks in, my downside factors are being older, female, and having had a previous concussion)
Hope you have a good talk with Headway - there is good help out there that actually works, it's just working out how to access it. Happy to answer any questions - as is everyone here. Hang on in there.
At 4 months I had been signed off work for a couple of months with another month off to follow. That was after struggling to manage for a couple of months at work and not realising things weren't right.Have you looked at any of the information on Headways website? Good place to start. If you are having symptoms then a chat with your doctor would be good too.
Hi, I tried to go back to work as a DHS doctor said I was fit to!! Spent 6 months awaiting appeal, lived off mum n dad. Won & was declared long term illness. Divorced, now trying A to come to terms with the new ME, build a better person?!! B find new friends as they’ve shut all the day centres down! Hope u progress is better than mine! Welcome £ please visit often, will find support from likewise damaged minds. Vent u frustrations, as we all do HERE, rather than real people who am sure are finding it equally difficult to acknowledge/ accept the new you?!! We all take solace in hearing other experiences from detached associated?! Whenever u down/ frustrated or simply need to speak to other survivors, at any time! Please voice u challenges here, if like me, we all have weird sleep patterns. Someone will be here for u ok? Take care, oh & learn to smile to spite u njury!! Others may think u mad!! It’s amazing what relief a broad grin brings!!…. See?
Hi Wanda, The best advice you have received on here to date is to learn to walk before running. Lower your expectations of both yourself and the NHS (which won't help you as much as it should) and you will feel less conflicted and be able to make modest gains in your life. Do not harbour expectations of others, even if they are family or close friends. You may expect the latter to melt away as they fail you. Family may be dismissive of your injury and its effects - those you would expect to be supportive won't be. Do not be afraid to ask awkward questions of people like GPs and ignore their ridiculous advice if it is obviously so. Those around you must recognise the new you and educate themselves to help you. Take it gently at work and do NOT resign! Accept all and any support offered. Good luck.
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