I know a lot of you suffer with fatigue and it's really common after TBI. I suppose I'm just looking for support to help get me through right now. I've posted a bit about my story on here before but basically I was a student nurse cycling to my nurses placement and a car hit me from behind. I don't remember it. I've worked my butt off for the past 18 months, spent 4 months in the hospital and eventually went back to training as a nurse which has been so hard. Long hours, trying to learn new information which used to just go into my brain but now I struggle to retain things, writing my dissertation nearly broke me but I passed it with a 1st class honours. I've qualified as a nurse now and after a really hard struggle to get to the finish line I'm having a brain crash. I'm calling in sick every 2 weeks or so and it's because I've worked and worked and what goes up must come down. It's just not sustainable. A nurse I work with told me about 'planning and pacing' and I think with better planning I might be better. I need to figure out a working plan that works for me. Reducing my hours really isn't an option financially. Can anyone offer any advice please?
Eve
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IndigoSunflower
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Thanks for taking the time to reply to me. Ideally outpatients would be better I think as they tend to offer shorter shifts, these jobs are quite hard to come by. I'm working on a coronary care unit and those jobs are quite prestigious and are often used as a spring board to specialist cardiac training which is something I'd like to consider in the future.I only spoke to occupational health when I was a student and they recommended a few things but now I'm qualified I really need to visit them again. Do my work need to refer me for it or does my gp? Last time my university organised it.
I spoke to my fella as he said I should cut my hours down. I think perhaps I'll have to, I'm just mixed with feeling like I've worked so hard to get here and I need to just keep working hard for a couple of years and then I can reduce my hours but in terms of my health that might not be possible might it. Sorry I'm on a tangent now.
I’m not in the medical profession however I can relate to much of what you have said as my partner has recently restarted her career in the medical profession as a physio after sustaining a brain injury several years ago. I also have family & friends who are nurses. I can also relate to the fatigue as bizarrely I have a brain injury as well...2 strokes plus ventriculitis, hydrocephalus & some other organ stuff. In my case fatigue makes my symptoms worse which makes fatigue worse...ugh. Anyway it sounds like you’ve done incredibly well to achieve what you have, you’re obviously driven & dedicated. Remember regardless you have to put yourself first (without being selfish) as I’ve been told...if you aren’t ‘right’ you can’t be for others.
Thank you, I do need to remind myself to put myself first where I can. I'm my own worst enemy because I put pressure on myself to do it all.It sounds like you and your partner have had such a rough time, im glad your partner has managed to take up her career again. How do you cope with fatigue? I'm terrified people just think I'm lazy.
It’s such a difficult balance. My biggest mistake was putting pressure on myself to be/get to a certain point (as I thought) in a certain time. Sadly it doesn’t work like that & things happen in their own time. For me genuinely accepting my new normal was a key process, after several false convincing myself I had got there, again tho it happens when it does & you sort of realise it by looking back. Patience is the key yet it can be so hard. Once in a while look back on what you’ve achieved in spite of what has happened & see how far you’ve come even what might of happened. I’d say don’t do it too often tho as the past has gone there’s nothing good there only right now with a view of where/what you’d like to head. Be proud of what you’ve done & what you’re doing. It’s an amazing story!
Thank you so much. I get what you're saying about setting a time on everything. I have a week off work and hope to gather energy and work out some plans so I don't crash again in the future. I'll try to keep what you've said in mind. I need to be patient with myself. I just feel like after working myself into this hole I can't take my foot off the pedal now. Thanks for responding to me, I wish you the best for your journey
Contact your gp and ask for a referral to see an OT specialist in chronic fatigue. I was referred to the South Coast Fatigue Clinic, Fareham, and saw a specialist OT closer to home near Winchester. We worked together in planning and managing my fatigue - one hourly sessions a week or over the phone. Having this support and a program to work to helped alleviate this crippling condition. Please don't delay! I wonder how your sleep is? 🤔
Thanks for getting back to me, I'll definitely bring this up with my gp. I've been waiting for a rererferral to the neuro team for some time because of covid things are slower.My sleep is actually pretty good. I was on zoppiclone for a long time (I know they only usually prescribe this in short doses but for me it was about 6 months). Then after I came off them I actually adapted fine and I get probs about 9 hours a night and nap most days I don't work. Sleep just doesn't revive me when I'm like this though. I do love a good nap though, who doesn't haha
Perhaps you're not able to reach 'delta levels' (of deep sleep) even though you think 9 hours is plenty? I was prescribed zoppiclone during a particular bad patch but unfortunately, they made me extremely groggy and tired the next day. I take Circadin (melatonin) with good effect, except I cut the 2 mg tablet in half which is strong enough! Do you co-workers know about your fatigue issues, or are you hiding this from them?
I take antihistamines sometimes as they make me sleepy but I don't know much about levels of sleep so I'll read up about it thank you.The ward sister really understood but she's left for another job and I need to have a proper talk with the new sister. Everyone knows about my brain injury and although nurses are traditionally compassionate I'm there to work not to be a patient and so I dont like to put it on them too much. I feel I do a good job at work, I always rally the strength to care for my patients safely and effectively. It's just getting up and forcing myself out the door when I know I've got a 12.5 hour shift ahead of me.
I have a brain injured friend who was recommended antihistamines for sleep by a CFS specialist doctor. Its a shame your confidante ward sister left. I feel you should have a talk with the new sister, hopefully she will be as compassionate.
I'm sorry I wasn't insinuating your abilities to care for your patients, more just concerned others weren't aware, and you were burning yourself out! No doubt you are an excellent nurse! Having the drive to do 12.5 hr shifts must be so difficult. I've nursed in various London hospitals so I'm aware of the total dedication and demands. I just couldn't do it now after my brain haemorrhage, although maybe I could part-time, who knows. I walk dogs for a living, among other things, and live rurally.
Of all the specialists, I rate Neuro-psychologists and the OT fatigue specialists the best form of aftercare following on from my sah.
I would love to live rurally now. I bet its lovely after the business of when you worked in London.I think in some ways the brain injury has made me a better nurse because I know what it's like to be a patient and scared and not knowing what the future looks like. I had a neuropsychologist in hospital and she was great.
I actually never considered help for the fatigue aspect of the tbi. I've mostly just been finding my own path but I'm going to look into now thank you!
For sure, being an inpatient with a brain injury would have made you a much better nurse! Unfortunately, I had an awful experience being a patient. One abiding memory is of a nurse bellowing down at me. Never shout at someone who's brain has been assaulted - I was so fragile and sensitive to noise. I'm not so much now. Lower yourself and speak gently, softly by their head.
HiFatigue has been my biggest issue since my TBI which was 4 years ago now
It took me over 2 years to finally admit to myself that I wasn't going to be the person that I used to be, I then did a fatigue management course at headway and learnt so much about fatigue and myself basically, I was then able to notice when it was time for me to stop what I was doing and rest. My first signs of fatigue setting in are my speech starts to get slurred and my vision goes blurry, if I don't stop and rest in a dark place then I will push myself to far, then it will take 2 or more days to recover from that.
But unfortunately I had to have a large posterior fossa arachnoid cyst removed from my brain 5 months ago and that has really pushed me back in terms of what I had already achieved in the last 4 years. But I am now more experienced with how to deal with things in my recovery. I would also recommend reading head injury by trevor Powell, it's such a useful book to have and I still look at it most days.
Oh that sounds awful Twice. It's like one stoe forward 2 steps back isn't it. Hope you can keep taking steps forward. I used to hate being alone but now I love a dark quiet room haha
My wife was a nurse and hurt her back when she was working in a childrens home, then had a car accident and injured it further.
She was off sick for quite a few months then she received a letter from her hospital - come back to work or find another job in the health board or leave. The RCN and her Union were great in resolving the issues
Hi, I had to retire from nursing ten years ago. However much you fight, you are fighting against yourself. You have a hidden disability, and as such you are entitled to help to do your job.
You will have to speak to Oc Health, and HR, you are entitled to reasonable adjustments to support you to do your job. There is no reason why you can't am to specialise, remember, even cardiology have outpatient clinics.
I had to give up my dream, I was a nurse specialist, not in cardiology, I was MH registered, it's all in the head, isn't it? But seriously I have nothing but admiration for what you have achieved to date, and although the health service can be hard on its own, there is no reason not to follow your dreams.
Make sure you travel the route you want to, and remember, there are many paths, none are wrong, they are just different, they all lead to success.
(Just read above about contacting the RCN or a union. One of my bug bears. The RCN is a union, nothing more nothing less!)
That's something I was taught very early in the journey, im different now but it doesn't mean its a bad. And I get what you're saying about paths and routes, there's different ways to the same goal. I suppose right now I'm sort of testing the ground to see if it's solid if that makes sense. Sorry to hear that you had to give up nursing, the profession has lost a kind and compassionate nurse.
I am currently in a similar position to you. I was in my second year training to be a Clinical Psychologist and was involved in a road traffic accident in July 2019 and suffered a TBI. It was initially suggested to me that I take 2 years off to recover and then return to my studies but I refused to do that and actually there is a lot of research that returning to some kind of structure and doing something purposeful which creates positive mood is helpful in brain injury recovery. However it sounds like both of us have probably applied significant more demands on our brain that we ideally should have and its worth just acknowledging your resilience. So huge congratulations for qualifying!! My advice now would be to be really kind to yourself. Take breaks regularly and often when working (if possible), download headspace and do a 5/10 minute breathing exercise to give your brain time to 'power down'. Reduce activities in the evening after work, plan ahead with cooking and chores (get extra help for this). Also I would go to your GP like has been advised because you are entitled to 'reasonable adjustments' which means your place of work have to allow breaks/additional support to help you as you technically have a disability and this doesn't effect your pay. Take all the help you can get honestly because it really will help you recover and reduce stress levels which are all inter linked! I hope this is helpful and power to us!!! xxx
Thank you for replying to me, it sounds like we are on very similar journeys! All of your advice seems very sensible. I do meditate at night so maybe I should give heads pace a try. When I was in hospital after a while I thought theres no way I'm giving up all the hard work I've already done and my focus was on just getting to the finish line and I don't think I kept any reserves for what came after if that makes sense? I've already started to split my activities over the past couple of days. I had various errands and last week I would've tried them all in one day but instead I've done it in bite sized chunks. It feels like I'm taking a step backwards in my recovery but actually, it's so that my recovery becomes sustainable. How's your studies coming along now?
I wonder if the fatigue and brain crash (and congratulations on your magnificent effort BTW) could be caused by pituitary damage? See the Headway website headway.org.uk/media/2803/h... The good news is that if it is, then hormone replacement can really make a difference. If you think this is a possible diagnosis, and if your GP won't give you the right tests, do have a look at our newly set-up website christopherlanetrust.org.uk and get in touch, and we might be able to help you.
Good luck! It would be good to go armed with research in case he is unaware of the condition or thinks it's vanishingly rare (sadly GPs aren't trained to spot PTHP). He might be convinced by Tan C L et al, The Screening and Management of Pituitary Dysfunction following Traumatic Brain Injury in Adults: British Neurotrauma Group guidance, J Neuro Neurol Psych jnnp.bmj.com/content/88/11/971
Hello thereFirst of all well done for continuing with your nursing course and qualifying incredible achievement, I also suffered an ABI mid nurse training and managed to qualify, so first of all can you speak to your manager? And request a referral to occupational health I had in place a plan where I couldn’t work night shifts the change over from day to nights was a killer!! Then eventually I reduced my hours to 30 from full time which made a massive difference to my work life balance I understand that this is not always possible financially
But yes planning and pacing is so important I have recently finished a fatigue management course with my occupational therapist which was very helpful, speak to your therapy team to see if anything like this is available?! Hope this helps, take care
The old ward sister told me they wouldn't put me on nights until I was ready and that's a god send because my last student placement I did a few nights and I was ok until I switched back to days and that was horrific. It took me weeks to reset my body clock. I will definitely think about reducing my hours to maybe just doing 2 days or even to 34.5 then every 4th week I won't have to do the 4 long days. Thanks so much for replying!
I can't really add anything to all that's been sad, but I couldn't let this go without adding my huge admiration and congratulations for what you have achieved. I think it's absolutely amazing, and I'm sure you will manage to sort this out. I agree with the person who said you should be entitled to more breaks. 12.5 hours is a long time for anyone, never mind for someone who had suffered an injury like yours! But it sounds like you have so much to give, so please don't give up.xx
Thank you so much for saying that and taking the time to respond. I will keep going, as always this is just another problem that needs solving lol. After my tbi I think of problems as hurdles and right now I feel like im doing an Olympic long distance hurdle race haha.
Hi Eve, I will keep this short for now (As I am on my break at work,) although I am sure that everyone here will be able to add to whatever I write as it is such a common problem for people with head injuries. But speaking for myself, from my experiences:
My TBI occurred when I was half way through my Chemical Engineering degree. I went back after a 1.5 year break after my walking and talking was sufficiently improved to allow me to study. It was a constant struggle in the early days, but what I have learned over he past (nearly,) 9 years or so, is that I was going about recovery the completely wrong way. Even when I finished my degree and was working various engineering jobs, I was convinced that the way to succeed was just by being 'gnarly' and pushing myself to do everything. I can see now that that was a mistake and my recovery could have been better. That was just my headstrong personality though, I think.
I have developed a way of thinking that simplifies everything in life. I have posted it on here before and it works for me, it may work for you, or indeed other people. My thinking goes like this "What are we?" and the answer is that "We are 'advanced' apes that have evolved opposable thumbs, bipedal mechanics and an enlarged prefrontal cortex." These give us the abilities of improved dexterity, walking on two legs and the abilities to rationalise, reason and experience complex emotions. Now, you are probably asking what on earth this has to do with fatigue!? But, take a look at nature; we are natural creatures that have evolved to do natural things. Every other animal that I can think of will spend a lot more time resting than humans do because other animals 'know' that they need it to feel good. -Chimps, dogs and any other animal you can think of spend a lot of time resting in order to be at their 'best' for short periods.
And now you are probably thinking "Ok great, but that doesn't really help me to do what I want to do," but I would simply point out that is 'what you want to do' really that helpful to you in the longer-term. Think about it, you will be spending a lot of your time (waking hours,) to earn money (which is imaginary,) in order to be able to exchange it for material goods. At the end of life there is now award for who has the most 'stuff'. If you love nursing and helping people; great. -I love engineering and more generally, science. But is it really worth pushing yourself too far to do it? As an engineer, a simple cost-benefit analysis is probably the best way to describe it.
Woah. I got a bit carried away, but hopefully you found some of the words that I typed useful!
-Leo (Engineer turned social anthropologist and philosophiser!)
You've got to take the mini victories sometimes don't you and controlling your mood through fatigue is something to be happy about!Its nice to hear that you have found a pathway to still doing your job. I've been wondering about working less hours but don't feel I can afford it but actually you can't take it with you can you and I'm thinking why make myself miserable to get more money when I dknt even have the energy to go out and spend it because I'm so tired from work. My only worry is, starting next year we are saving for a house and I want to be able to contribute to that.
i am sure that most if all of the community are saying the same thing. You really need to get some financial advice but most importantly you need to realize that you need to accept and if necessary get advice on managing your needs with the relevant people. i fell down the stairs and 2 weeks later was refusing to go home from work even when i couldnt speak properly. "planning and pacing"is based on you mitigating the "up and down" of energy/fatigue extermes and trying to manage your time to minimize the "wave" between the 2. definitely has helped me rationalize things and most importantly say "no" to requests i cant do and ask for help - not something i have ever done
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