Feeling like a guinea pig! (newbie post please be... - Headway

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Feeling like a guinea pig! (newbie post please be kind!)


Canada. Concussion, more than a year.

WCB ( work injury) I am over 60 , back to work almost full time. 36 hours a week as opposed to 40 pre-injury.

Every practitioner seems to have a different idea of what will help me. So each new assessment sort of terrifies me!

The one thing that no one is willing to concede is that perhaps I need time ! That is what all my instincts are telling me, but no one listens.

I think I need an advocate to make them hear me. But I dont think there is such a thing. Or is there?

29 Replies

Hi, you are doing amazingly well. Im afraid it does take longer the older you are.

You dont say just what your problems are and isnt a 36 hour week fine?


Miss_B_Haven in reply to Kirk5w7

Hi Kirk5w7.

I think 36 hours is more than enough! Most weeks i would be happy to drop it back by an extra hour, But employer would have to make some sort of permanent accommodation and that might involve a financial payout so they keep pushing me to be that guinea pig.

I really dont care about the financial aspect, just let me have some peace and see if my body could heal.

My main concerning symptoms are headache, fatigue and feeling as though a lot of mental things are much more difficult than before, there are other things like tinnitus and blurred vision but those are pretty minor.

The older I am the older I get!

And a year at this stage of life is a bigger percentage of the time I have left than it would be if I were 20 something.

If it want a work related injury i feel as though I would have more say in what happens.

Can I say that this is starting to p*** me off ?

Kirk5w7 in reply to Miss_B_Haven

I agree with Cat, unfortunately some employers don’t seem to understand those underlying issues that you get with brain injury.

I had to give up work totally after mine, although they were willing to hold my job for me but at 12 months I could see I wouldn’t improve enough and I was just 2 years from retirement then so cut my losses.

It’s 6 and a half years now and I still battle with my balance, and those issues with mental fatigue. I lost some peripheral vision and that won’t change either, my night vision is appalling.

Like you I look into the future knowing that the older I am the older I get, as you say, scary thoughts.

Take care and hang on in there.

Janet x

Miss_B_Haven in reply to Kirk5w7

Thank you.

I'm sorry for your struggles, wish I had a magic wand! Did you see much improvement after the 1 year mark? Or any?

Kirk5w7 in reply to Miss_B_Haven

Yes i did, although there are issues that come and go.

This summers warm weather has helped amazingly, and ive just been on a cruise when for the first time ive felt more like the old me. I put it down to the warmer weather and no stress.

The balance issues are still tgere but they improved while i was attending Tai Chi lessons and im working on my vestibular system still with my vision therapist, who i have to pay for privately as its practically nonexistent on the NHS.

Unfortunately im back to the cold damp now and when i have sinus problems, which is just about all winter, that affects my balance too.

I sound like a dreadful old whinger do’nt I?hopefully I’m not but when you deal with these issues daily it’s difficult to ignore them.

I managed to improve my executive functions by doing interminable jigsaw and other puzzles, i still do them daily and paint by numbers were amazing too, i still have some problem with number but i can manipulate 16x16 sudoku quite well now.

I just keep up the practice and walk as much as i can, weather permitting, swimming is good too, at least once a week. But id love to drive again, or go back to work, i miss the independence and the company, although ive learnt the joys of public transport!!

Back to it! Although im not sure what “it” is

Janet x

Miss_B_Haven in reply to Kirk5w7

I know exactly what you mean when you are sufferring sinus issues. I am the same. It is almost a regression isnt it? And scarey as hell cause I know none of us wants to go backwards!

What about accessing the Post Concussion Syndrome section on the Headway website ; you could print it out and show it to your employer as back-up for having your issues taken seriously and to allow yourself a little more slack when needed.

I keep reading about PCS being, in some cases, more persistent than once believed.

Good luck Miss B. x

Miss_B_Haven in reply to cat3

I am just starting to discover some of the resources here and I think that I cna see some support that I dint know existed.

Like a part in the clouds!

Thank you! I will search for that and see if I can use it to help a bit.

Apart from our wonderful Headway you could try braininjurycanada.ca or brainstreams.ca for more local information to you.

Will try to write more later.

Thank you! I did not know about either of those sites! A brief glance has given me some tools I know I can use.

I have bookmarked them and hopefully will find the time and energy to go through them more thoroughly soon,

I had to use an online tool to come up with these figures but I find them interesting and can explain why I am starting to resent the myriad of treatments. That do nothing to improve my symptoms.

14 months in the life/work life of someone my age is 7.9 % of the remaining life and 29 % of the remaining work life if one retires at age 65.

Compared to someone aged 30 , the same 14 months would be only 2.4 % of the remaining life and 3.3% of the remaining work life.

I wonder how many of my remaining days are going to be used testing somones theories.

fatigue yes, something that all of us with a brain injury understands.................different to physical fatigue.

although you dont say how long its been since your industrial injury, it would seem to me that 36 hrs maybe to much and maybe you should have started back part time..........giving yourself a chance to build up gradually.

steve x

Miss_B_Haven in reply to steve55

Thanx Steve. It is good to know that at least to some people I dont have to try to reach understanding! That is an exhausting process isnt it?

I did start out slowly, I allowed myself to be pushed faster than I feltcomfortable with because I thought..."It's temporary, I can deal short term" now 14 months later it isnt so much temporary and I can no longer put all of my energy into work and leave nothing for my family and myself. However, it is a struggle to reach understanding tiwh WCB and employer. If this had happened at home I think I would be in a better position to be honest.

( sorry one thing I do now is dyslexic typing and I just cant find the energy to go back and fix it all. hope you understand. :(

steve55 in reply to Miss_B_Haven

yes im the same, but i miss words out, thats why i go back and check hahaha.

i cant understand why youre having a problem with work, if it was an industrial accident i wouldve thought they wouldve been bending over backwards to help you, you are taking them to court?


Miss_B_Haven in reply to steve55

here the law says you cant sue the employer, you have to deal with WCB, which is basically an insurance company and we all know how insurance companies are!

I dont think I want to sue anyhow, I just want them to leave me in peace so I can adjust menatally, physically and emotionally to my new reality! Peace .

I'm prety good at what I do and the job hasnt suffered one bit, but my family and my home sure have.

steve55 in reply to Miss_B_Haven

mood swings, noise intolerance, dislike of strangers?

Miss_B_Haven in reply to steve55

For me fatigue is the biggest issue, because I am tired everything is harder,or maybe it is the other way round, no one knows for sure.

I do have less patience for sure as I really dont have the time or energy to watse and yet people keep watsing it! lol

The headache is non stop, and someone seems to have a pause button that they can press at will, when I am trying to talk. That was scary as heck at first but I am mostly used to it , as are the people who know me.

Anything intense is trying, intense sound light, emotion, anything.

Does any of that sound familiar?

steve55 in reply to Miss_B_Haven

yes, i had an appointment with my psychiatrist last week, he said the combination of my brain injury and organic personality disorder, no matter what medication i was given, would make me unpredictable. as a result of this and being epileptic, i prefer not to go out, if i do its with my wife, she knows how to distract me and keep me away from possible trigger situations, so pubs and restaurants are tricky.


Miss_B_Haven in reply to steve55

It is simple things that we miss out on isnt it? Like a mall during this season of joy. Not happening for me and I imagine for you either. But I would like to.I used to love people watching, especially at this time of year..

I certainly do, its always such a surprise if i dont check to see what i actually typed😬

Miss_B_Haven in reply to Kirk5w7

lol, not a pleasant surprise , but can be amusing sometimes!

god love you more than likely suufer brain fatigue everyone on our

special site love we can reasure you only us no what its like when no one is listening or understand s us we all have to constantly hit walls meaning

there always problems we suffer in silence if your body telling you that

dont be scared love we are all here for you .hers one my doctor of 15 years said yes you fractured your sckull when you had the severe brain damage 6 years ago now i love my doctor she's always been so nice and helped my kids when they were sick my family doctor wednesday last week i go to see her and say doctor my sckull is still moving and bones turn different shape craters appear montans valleys the sckull bone

no eddie its healed by now its ok its not fractured and my heart was broken again im scared of ever going back to see her its still fractured i no i feel difference in bone structure anyway went to see a high ranking politician he didnt no i never told him but i said sir you no i have severe brain damage but im a good person i said sir can you fell my sckull please

he said oh my god thats a bad fracture are you ok eddie yes fine sir just do my best wanting to say but never and i had to go pharmacist and i asked him and told him and he said yes definitely so i just my brain sort of says how many times has this happened to you eddie im not nuts hope this helps love it happens everywhere but no this were all here to advise hug x

Thanx! I sure wish I had known you people sooner! There were some pretty dark days where I really needed to hear that someone understood. Thank you.

Canadians have protection against discrimination at work under the Canadian Employment Equity Act.


However my knowledge ends there.

Thanx. I know a bit about that, but I believe WCB is sort of exempt from all of that sort of thing.And as yet they aren't discriminating or refusing accommodation they are just pushing me to do more than I am capable of . it is all dollars to them , and it is hard to be forceful and clear when one is so weary and foggy. It does feel as though my condition is being taken advantage of a bit, which is why I feel that there is need for an advocate of some sort, Someone who isnt weary and foggy to deal with them.

Here in the UK a disabled person has a lot of right in your situation, due to the legal duty of the employer.

What rights you may have, in Canada are unknown to me, however it does appear that Canadian right may be similar:


You really need advice from a agency in Canada, who have experience in this area of work.

I was expecting the organisation already mentioned to give support however they appear not to have helplines but perhaps that's why you're here.

It varies greatly but being able to identify your particular symptoms and what triggers them in the workplace is the starting point. Then it's can those triggers be avoided or minamised whilst still allowing you to do your 'job'?

Here, if the country wasn't falling apart, a TBI OT would try and facilitate or a union rep if no OT support is available.

Having said that I've seen many TBIs after everything's gone to hell and they've eventually resigned.

I think you already known but you've joined a pretty cr*p club.

Thanx for making me chuckle . I do know, and really I can deal, I have been and will continue, It's just cr*p as you say!

One of the things that really upset me is having to explain and educate everyone, including my immediate superior on my condition. That absolutely should not be the injured parties responsibility. My neurologist said if I had a bandage on my head it would be different and he is so right! I am going to lobby ( as much as I am able) for WCB to initiate the education needed in future TBI cases. I really think it is their job.

Sealiphone is a brilliant member of this forum, he is a fountain of really sensible advice.


sealiphone in reply to Kirk5w7

Thanks but I suspect your TBI has distorted my posts.

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