New Normal?

[Lizum]

At what point, and who decides, that what you can do/manage is now your "new normal"?

I'm now 6 months after my concussion and am still not able to work more than half a day, 3 days a week.

[steve55]

liz why can you only work half a day 3days a week ? is that all you want to work?

[Lizum in reply to steve55]

I want to get back to full time but my fatigue kicks in after a few hours then I'm too tired the next day.

[RogerCMerriman in reply to Lizum]

I had phased return back to 5 days a week, by 8months after a few months I admitted defeat and went back to 4 days with reasonable ajustments. And I'm far happier and productive.

Which aspect of work do you think is the most cognitively draining? Could that be adjusted some how?

[Lizum in reply to RogerCMerriman]

It's kind of hard to tell which aspect of work is worst. I mainly work on a computer in an open plan office, answering emails, checking documents and writing reports. I'm an engineer and I was designing, calculating, analysing, writing reports, drawing and going to lots of meetings. It's not possible to do that in such limited hours, so it's good that I can do less demanding work whilst I recover, but it's still knackering!

[MXman]

Hi Lizum,

You decide.

Its when you are ready not when anyone else is ready for you. Im 15 months down the line from my accident with concussion and brain bleeds and its progress not perfection. It takes time and the old version of me is gone, the new is a work in progress. The urgency for the old version of me to come back is now gone as I so wanted it back but didn't realise it wouldn't come back.

Take your time Liz and listen to your body and learn from it. Nick Xx

[Julesgettingthere in reply to MXman]

Hi Mx Man Nik

Just reading your reply to Liz - you talk a lot of what makes sense to me, with that and some of your previous posts.

My heart went out to you when you spoke of knowing he old version isnt coming back.

I am 6 years in October, you are 15 months, but you now accept it but i cant still. What happened that you stopped looking for yourself ? I only ask because i am still looking.

Regards

Jules

x

[MXman in reply to Julesgettingthere]

Hi Jules,

Well I try and give you the short version.

Im an alcoholic in recovery and got sober on Jan 4th 2014 with the help of Alcoholics Anonymous. Its been an absolute life saver for me and part of the process in recovery is learning about yourself. I used to hate myself and my feelings and didn't really know WHO i was so used to drown my feelings in drink just to face the world. I had my accident on 15th May 2015 and it knocked the recovery out of me, never did I feel like drinking after the accident or had the obsession to do so but my self being, spiritual self and my peace and serenity were damaged. The old recovered peaceful Nick had gone which for this alcoholic was a little scary. In order to get back to some sort of sanity I had to accept the accident like I accepted I was an alcoholic. Honesty with myself was always a hurdle for me so why should the acceptance for my Bi be any different.

I learnt more and more on this forum and sharing my problems with bi with people who have the same problems as me its so similar as in the rooms of AA. Talking to other bi sufferers and sharing our problems so we can understand them is just the same as one alcoholic talking to another alcoholic, there the only people who understand us and whats going on in our minds, we are not alone with this. The main life saver for me was Headway council as I was having major problems with emotion, love relationships and I still do but Headway have been fantastic with these issues and iv had to accept them along with my wife and kids acceptance too.

For me the quicker I accepted the new me the quicker I was going to be able to get on with my life and I'm still a work in progress. There are many other issues that I have encounter with my bi and I'm sure there will be many more like family problems, my mum and dad just don't accept the new me so the relation ship I have with them is very poor.

I truly hope this helps Jules, if you need to please message me so we can have a proper chat. Take care and have a positive Friday. Nick Xx

[Julesgettingthere in reply to MXman]

Thank you Nik, it has given me another piece of the jigsaw.

I told you in a recent chat that i struggled with alcohol also and coupled with the bi I dont feel alone today.

Jules

x

[LukeB]

What Mxman said...listen to yourself (that's your head and your heart. Your heart is usually right but it can take time to find what's right).

If it don't feel right it probably isn't right was a good bit of advice I got.

[Julesgettingthere in reply to LukeB]

Hello LukeB

My gut instinct used to be one of my best assets, its now one of the things i cant get my head around getting wrong so often.

Never mind, worse things at sea.

Jules

x

[LukeB in reply to Julesgettingthere]

I Know it's tough but take your time. I know that is difficult as well but time does help😊

[sospan]

fatigue is a complex issue in itself, some times the causes are physical, mental or psychological or combinations of each of them.

You are the only one whom will be able to change things or decide when you can increase your hours. I would try and work out what the trigger is for the fatigue, is the physical effort of getting to work and then doing the work, is it dealing with people, the noise the lights etc.

Once you have some sort of theory as to the cause of your fatigue you can start to either remedy it or find a coping mechanism.

[Nutkin33]

It took me two and a half years!

[Julesgettingthere in reply to Nutkin33]

Hello Nutkin (love the name) Jules here

Havent chatted to you for ages.

You seem so happy and successful now, especially looking at the picture on your posts.

Was there a turning point for you ?

Jules

x

[lisa85]

I am 11&1/2 year into my recovery and am still an able to work, it's different for everyone. I'm an able to work but I have a kinda normal life otherwise, I live alone when my partner is at work, I am able to go out by myself (whether shopping or socialising) and every other "normal" thing but because of my fatigue I wouldn't be able to hold a job down. I'm ok with that now as I run my own headway branch with the help and support of amazing friends.

Lisa85 xxx

[Julesgettingthere in reply to lisa85]

Oh wow Lisa, I am in awe.

You didnt say if you actually admit and accept the changes . Maybe you dont feel ready to talk. sorry.

Kindest regards

Jules

x

[lisa85 in reply to Julesgettingthere]

Sorry I was on a roll, yes I have accepted who I am now and that I am not who I once was, I don't know when I accepted and do still have days where I wish I could remember who I was and get back there, but I am so much a better person now all my family and friends say.

Lisa85 xxx

[Lizum in reply to lisa85]

The problem for me is going from breadwinner to nothing. I've always been independent but now I'm forcing my husband to find paid work instead of being a stay-at-home dad and relying on him to bring in the money. I'm hoping my income protection will cover my pay when sick leave runs out but there's no guarantee. If it doesn't, we're looking at a big drop in income.

[lisa85 in reply to Lizum]

I completely understand I was 'lucky' to have my accident while I was only 19 so had just left school and was starting up with collage and my new job. I've seen a massive decrees in my income and now having a house of my own and paying all the bills it's even harder, but I compramise with how I spend my cash, I always make sure my house bills are paid and what ever I have left over I put to things that I can treat myself with.

Lisa85 xxx

[Gaia_rising]

Lizum,

We're all different, and there isn't a timeline that 'fits all', there is, unfortunately, a common theme of lack of information/support, which is where this forum is invaluable.

I had my SAH as a result of a ruptured aneurysm, and the associated drain/coil procedures, in February 2015, I returned to work, five mornings a week, in April. (Against everybody's advice, everyone wanted me to 'rest' or 'take it easy', but I'm very bad at that, and sitting at home looking for something else to clean was driving me insane.) I was then even more of a ratbag, and returned to work full-time in June. They haven't sacked me yet.

Like Nick, I accepted very early on that the 'old' me wouldn't come back, and worked on the new one, instead of constantly beating myself up for being fatigued/exhausted, you wouldn't expect someone to run a marathon the day after having a cast on a broken leg removed, would you? My brain is different, it has bits of metal poked in it, from the original emergency surgery, and the more recent coiling of another aneurysm they found while they were in the first time. Different-brain behaves differently to before-brain. I'm mostly-functional, but have potentially devastating verbal slips, and fairly constant vertigo, along with the headaches that are common to many of us.

Nick's experience of AA strengthened him, my work strengthened me, before being sidelined across to what I do now, I was a Mentor for troubled and challenging adolescents, so a lot of my 'work with what you have, to achieve what you want' grounding/focusing strategies that I used to teach the kids really helped me.

No timelines, if you took two people with seemingly-identical injuries, each would adapt at a different rate, because, although 'before' doesn't really come back, what you did, and how you were, and how you coped 'before' do have an influence.

Don't beat yourself up, learn your triggers, and see if there's any work-around. I initially worked mornings-only because I ALWAYS sleep for at least eight hours, so I'm more alert/productive in the morning. If I hadn't been sleeping properly, I might have tried afternoons, instead of mornings. We're all different, and, even though I was much more settled/accepting than others might have expected in the early stages, I was also a nightmare for pushing myself to try a little harder, a little more- that's just my nature.

[Julesgettingthere]

Dear 'Gaia'

That post was very helpful, thank you.

Jules

x

[Gaia_rising in reply to Julesgettingthere]

Thank you Jules.

I can only tell the story from my side, and we're all different, I'm glad my version was of some help.

[paxo05]

Hi Liz.

Your "new normal" will be constantly evolving over time. You may or may not return to a sort of old self or change further away from it.

Basically as you improve and adapt so to will the new you.

Medically they say improvement plateaus after two years. This may be so but you then costantly adapt and so improve well after this.

So to answer your question yes you are now the new you........but you may another new you next month.

Happy evolving.

Pax

[iforget]

I strenuously resisted the whole idea of acceptance for a long time as I battled against the whole idea that this was a permanent thing. I had this fantasy idea that "given enough time" things would miraculously sort themselves out. I questioned results (in particular my neuropsych testing which simply had to be mistaken as I could not possible have that many deficits) and begged docs to try anything...I would have rolled in elephant poop every day for a year and eaten all meals through a sweaty sock if it would have helped, I was just so desperate to get the old me back...

and then the docs started to look at me with pitying expressions after I asked about treatment options and when they all suggested I needed to try to accept and move on with leading a simple happy life I was incandescent with rage...

An attempt at a return to work was the start of acceptance for me. My employers at the time agreed to a phased return which was a disaster. Another break followed and some major adjustments were made but it started to become clear to me that I could not cope and that by trying to be at work I was actually putting others at risk... I told HR and sadly that saw the end of that job...

About a year after that I had another try... I should have realised this wasn't going to work when I got a call telling me "they would like to offer me the job" (the job that I had no recollection of ever applying for). I was ecstatic. Of course once again it was a total disaster. The thing was that I was articulate at interview because I knew things I knew before my BI and could talk about processes and policies etc with relative ease and any little glitches were most likely put down to interview nerves. It seems I was so articulate I even managed to negotiate a better package than the one originally on offer... I would have been so impressed if I only knew. That job lasted a very short time indeed.

I guess it took me about three years to accept that the old me was gone and in her place was this strange and dysfunctional person ... a person I didn't know and to be honest didn't want to get to know.

I am now 10 years into life part two and generally things are okay in my little bubble. My deficits never did right themselves and the days, weeks and months just blend one into another. I am comfortable in my own skin. I have gotten to know the new me and for the most part I quite like her.

[Gaia_rising in reply to iforget]

That strikes a chord with me, because I'm exceptionally resistant to being 'told what to do', I was before, but add a bit of post-BI ANGER AT EVERYTHING into the mix, and i'm certain I was an absolute nightmare. (I still am, I just cage it better now.)

I'm physically weaker, I'm about 2st lighter, and I tire much more easily than 'before'. My vision fades in and out, and I still have panic attacks, and mood-swings, but I can usually remove myself from situations where I realise I'm not firing on all cylinders.

It's not easy at all, and sometimes other people have skewed perceptions of 'recovery' from a Brain Injury, either that you're 'all better', or worried that you might try to eat their shoes. I'm fortunate in that the new-me, despite the deficits, is actually an improvement on the old-me, who fluctuated between being a whirling dervish, and a doormat. We adapt, because our surroundings often don't know how.

[Steve49]

Hi.

I know that you have possibly heard it 100+ times but it is "early days"

You will be the one who decides if your the "new normal"

Your best to stagger your reintroduction to work.

Unfortunately I tried to do this but with work came "getting there & getting home"

In the end it was far to much.

Steve.