Complete Exhaustion

[RainbowBrie]

I returned to work 3 weeks ago. After 6 months off following encephalitis in December.

First 2 weeks were fine. Getting back to the basics and working from home meant a familiar environment and no noise.

Week 3 though and I feel like I have been hit by a bus. Yesterday I was tearful all day. I get 'stuck' on how to remember processes, like accessing shared drives and using online systems. I get frustrated and then upset that it is taking so much out of me to do the basics. Being at home means I don't really have the support around me. I'm left on my own to work it out. I have started making contact with clients and that is exhausting over the phone and then recording the contact takes me ages.

After work yesterday I cried and then slept. Went to bed at 8pm. Today I feel so heavy tired. I've had one long nap already and could quite honestly sleep again. It will be another early night for work tomorrow.

Oh and I'm also trying to homeschool a 7 year old. C-19 has a lot to answer for.

I have emailed my GP today to update him. And I have let my boss know I am struggling.

Question for those who have returned to work - does it take a while to settle and for the exhaustion to go? Or will it be forever like this? Or have I gone back too soon?

Brie

[pinkvision]

Hi sounds like you are getting overloaded, too much sensory and data information, it's affecting your cognition and memory etc. I tried to work and it was pointless. After a brain injury your 'system' cannot cope with the same amount of information as it did before. You have to try and reduce as much in-flow of information as you can to the brain. Overloading information will eventually crash the brain and deep fatigue will set in. I have been reading all this over the last couple of days in a commentary on a brain injury patient by a neuropsychologist. Try to find your working limit that does not make you begin to get tired. Beyond this point it is the red zone, do not enter. Must be hard working and being a parent with a BI.

[cat3]

The fatigue, stress and crying are your brain's only way of telling you that it's overwhelmed by the current demands upon it. Careers/jobs are common casualties after a brain injury and, although it's a massive step, further absence might be your only option in protecting yourself from serious setback.

If your boss can reduce your hours, you might find a better balance in work/homeschooling/daily routine etc., and top up with a benefit if necessary. If not, you should seriously consider leaving.

Getting back to normal is instinctive, but often misguided where brain injury's concerned. I was adamant that I'd be back to 'normal' in weeks, so it was a shock to find myself still struggling at the two year point.

But our levels of progress and the timeframes involved are unique to each one of us, so watching, waiting, trying, failing and trying again are how most of us proceed until we reach our own personal plateau where our new limitations and capabilities are easier to identify.

Take more care of yourself Brie...… you sound truly exhausted.

Cat..... x

[RainbowBrie in reply to cat3]

Thanks Cat. Yesterday was a forced rest day but clearly I need to be better at planning regular rest periods.

Slept all night and have woken feeling a bit brighter but still tired. Hopefully my GP makes contact today and I can discuss the best way forwards.

[cat3 in reply to RainbowBrie]

OK m'dear…….so long as your health is your no.1 priority and your boss is kept in the loop, life should be more manageable. I hope so. x

[oliver1234]

I have been back at work for three years. I feel the fatigue issues continue and it’s not particularly predicative when. I hope you can find a way to accept it and be acceptable to it if/as it may happen .

Of course it’s different for everyone, but it could be a new normality

[RainbowBrie in reply to oliver1234]

Thanks Oliver.

I'm tentative about it because I'm currently working from home. But my job normally is quite busy and hands on. I'm not sure how I will cope to be honest.

[spicekin]

I had herpes simplex encephalitis in 2009 and am working now as a Teaching Assistant at a Primary School and at Chi Uni helping students and have done some lecturing there. All I can say is be kind to yourself - it does take a long time to adjust but things do gradually improve - in the early days I did some voluntary work and invigilating and then built things up. I have a family to look after and am a carer for my wife and we have two sons who are 14 and 16 years old. Take one day at a time would be my advice. Things will get better - Jonathan

[Moiford]

I had an SAH in Oct 19 and feel that some days I'm on a different planet to everyone else! I have been finding lately that i'm constantly tired, no enthusiasm for doing anything except watching telly. I try to do simple things like Wordsearch and crossword puzzels just to try to keep my brain a bit active which get quite labourious after a while so started playing Scrabble with my hubby. I find that halway thru a game, I seem to have 'brain freeze' where I really struggle to make up a word and then have difficulty adding up simple scores. I know this may sound trivial to some people but this is really starting to bother me, making me feel quite anxious and stressed. I also notice that i have trouble in having a 'normal' conversation with people and find myself 'babbleing' or 'tongue tied'. I thought that things might improve as time went on but things seem to be getting slightly worse so was just wondering if anyone else has noticed this kind of little problem?

[Hetty56 in reply to Moiford]

It really hasn’t been very long for recovery. Give yourself time and rest when you can. Sam had these exact problems. His TBI was 2 1/2 years ago and these things are gradually becoming less of an issue. It’s learning to be patient I’m afraid but you will see results

[dark-angel-79]

make yourself a cheat sheet for accessing drives etc. ak the IT people to put a shortcut on your desktop to these shares / software you use most and set organised bookmarks . home pages etc

a flow chart (or similar - aka choose own adventure story type) should be available from your organisation for processes. especially if you need a suitable framework to operate from or guidelines in which to work. if not, ask for one. or create one.

work smarter, not harder.

(note, i employed these techniques (amongst others) as a IT Support tech after BI) for the usual day to day stuff. so could be adapted for a lot of places,

add to it.. or if the issue out of your area or remit, pass it up to higher level.

with regards fatigue. yes this is normal for brain injury. we are trying to run at same pace as before, but with shorter legs.. more effort, more tired etc.. if that makes sense.

perhaps switch to email if possible when contacting your clients especially if like others may also be working from home, gives both you the break and them the time to deal with other issues at home, like child care, home schooling etc.

Though confirm with superiors first on this as there may be reasons why this cannot be done.

emailing will also help as then possibly a copy and paste into the system, both your email to them and reply and it also provides the info you need.

as others said, its normal even in normal times to be fatigued etc. dont stress it as will make matters worse.

perhaps break day into easier more manageable slices. 30 min calls / email x min write-up, x min to recover - how long you need... and time to do the important stuff. above all. look after yourself. know your body and listen to it.

edit..

did they do a phased return to work for you? if thrown right back in at the deep end, not cool. esp in this very different way of working.

Kind regards

DA

[RainbowBrie in reply to dark-angel-79]

Thanks DA.

I am on a phased return. I've just done week 3 which was 3 days of 4 hours. I'm working alternate days as requested by GP to allow a rest day in between.

I have done exactly as you said and made some cheat sheets for accessing and also some prompt sheets and phone contact recording sheets so I am prompted on the phone and also can write down so I'm not relying on my memory to type up.

Unfortunately email isn't an option. I'm a health visitor. We are offering support and completing as many normal development reviews as we can via phone. I do miss the face to face but have been told to remain at home for now by occupational health. In a way they've asked me to' shield'.

Before all this I was definitely a work smart not hard person. So I know I have it in me and can do it. Just finding the balance between being back to work and not sacrificing all the recovery I have done over the past 6 months. That's what it felt like on Thursday. Like I was back to square 1. So tired I thought I was going to vomit.

Thanks for the tips. Much appreciated.

Brie

[dark-angel-79 in reply to RainbowBrie]

Hi Brie.

Sorry I cant give you any further tips but its not all doom and gloom. You will find these are still very early days yet and as such, its in my experience, very much how i felt 6 months post BI, few good days followed by a few stinkers where i could barley drag my sorry self to college. ( i felt i needed to do 'something' as sitting home wasn't for me an option and definitely not productive)

Glad to hear it is phased return and getting the support from you employer. Know what you are capable of is first step.

At the moment, you seem to have your baseline fatigue level. work from this with the hours / days / employer etc. plan for yourself where doing under worst case scenario and plan as such for time / shifts etc. always allow more time to recover than what you may think you need. if your not being able to take care of yourself, how can you look after others. i mean that in a nice way. dont burn yourself out. your child(ren) need you more than a job ever will. sorry to say. and dont be pressured to 'do more' either.

So, take Thursday as a learning lesson for you. take time if possible to re-charge. in yourself, learn what your bods telling you as you would probably tell your clients, ask for help if needed.

Kind regards

DA

[371960]

Sorry to read your post, it sounds very familiar to my own story, I can't add much, to the excellent advice that has already been given to you, take on board what the reply posts are saying to you.. there is no time limit on how our brains will heal, each case is different to the next.. don't push yourself to much, it will hinder the healing process..and also as time goes on, don't be afraid to admit to yourself that you can no longer work..take care of yourself and your family