Living with Post-Concussion Syndrome: Hello, At... - Headway

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Living with Post-Concussion Syndrome

LeeSchmidt profile image
16 Replies

Hello,

At what point do you just accept this is you life now?

i hit my head at work on June 25 (day before my birthday, happy birthday to me).

it left me with post-concussion syndrome i have good days and bad day, the bad days are ruining my life.

i recently went back to work and i feel like im the company special hire customers look at me like im useless or an idiot when i stutter or repeat myself or my favourite one is when i just mid taking start going blank face and staring into space but thats all okay are being with my company for 6/7 years and my accident happening at work they are now on a war path for me to fire my. i have only been back 6 days and i have already had 1 writing warning for being late i was 6 minutes late and stayed an hour and a half behind to help the store, despite the face im on a slow return.

it breaks my heart when i have to ask my kids (2/5) to stop laughing and having hun because my head starts to hurt or hearing my daughter say to me " its okay mummy, i know your head hurts and you forgot you promised to take us to the park" or her being scared i will be alone for the weekend when she's at her dads.

i just dont know what to do anymore. i want my life back.

sorry im venting. this is all know to me.

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LeeSchmidt profile image
LeeSchmidt
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16 Replies
Wheelchairdave profile image
Wheelchairdave

So sorry. Hope you get improved soon.

Tubbytommy profile image
Tubbytommy

Hey, so I get the same feeling as you.

In relation to work I suffered a work injury almost 10 years ago although it happened at work it wasn’t anything they had not put in place it was just an accident. Now following my accident they got their independent health and safety manager in to give me a full interview almost like what you see on TV one lamp on, being nice then being an a**e and so on. Not defending them but they are probably going to be concerned you will sue them for something. If you aren’t tell them that and just say look I know you might be worried but this is my plan. My accident was a broken wrist and at the time I was a cockey sod at the time and recorded the whole interview as did he and had an answer for everything.

Remember if they ever call you into a meeting you are entitled to someone in there with you. If you don’t have anyone there then you can request and it can be deferred.

Hope you start to get on ok at work and everything goes back to the way it was.

MaryH75 profile image
MaryH75

Hi I'm so sorry you are going this tough time. Unfortunately I understand the situation you are in, as I'm in same boat. The mummy guilt doesn't help. Mt accident happens May 2023 so am still off work and trying to get my head round this new way of life. Am still off work but unsure what will happen. My only advice is to take 1 day at a time

Some days are good and some are bad. Not great with a young family, I totally understand. Sending massive hugs x

Painting-girl profile image
Painting-girl

Hello Lee, welcome to the forum. Sorry to hear about your problems with post concussion and work. What does your GP say? You don't tend to get referred on to a neurologist until after three months of post concussion, and it can clear up in three to six months - or it can linger - but even then it can still go on improving - but this is definitely the time to go back and talk to your GP about how you are at the moment and getting to see a specialist.

Well done for getting back to work in under three months (I was still a total mess at that point). Did you go back on reduced hours or anything?

As your accident happened at work, it may be best to get advice on what to do sooner rather than later- perhaps from the citizens advice bureau - have you tried anything like that?

Apart from on here, where we do totally 'get it' please try to ring the Headway helpline (open during office hours) and talk to them for practical and emotional support - their number is 0808 800 2244. Ask them what you could ask the GP too.

Hope you get some support from your GP and Headway to cope better with work and home. Be kind to yourself, concussion can take a while and it is hard to cope with all the weird effects. Take care x

LeeSchmidt profile image
LeeSchmidt in reply to Painting-girl

My GP has basically said it can take months or years to recover if you recover at all.

i wasn’t ready to go back but felt i had no choice as my contract has a area in it that basically says we can fire you if you take more the 30 days off in a year.

i am on reduced hours but they want me back to full time by October but i know if i do that im going to do more damage to myelf

ACAS are already involved and said we need a lawyer or they will not make any changes to make sure it doesn't happen to anyone else. the company tried to brush it under that carpet and didn't ever report it to ANYONE i had to.

im trying to find the courage to call/see headway

Painting-girl profile image
Painting-girl in reply to LeeSchmidt

Hello Lee, I did wonder if returning to work was forced by circumstances, that's really hard. Good that you have involved ACAS - though I'm afraid I don't know much about the legal side of things, mine was an accident at home. What actually happened to you, did you black out or have amnesia, or a bleed? It was good that your GP was straight with you, but they could now refer you to a neurologist or neuropsychiatrist that specialises in post concussion - they don't rush because concussions can clear up spontaneously ( don't worry about being sent to neuropsychiatrists or neuropsychologists by the way - no-one thinks it's 'in your mind' - but these people are the experts in the effects of brain injuries - it is just the way the different branches of medicine have evolved over time). Yes, mild traumatic brain injury can have lasting effects, but there are exercises to do and strategies to use that do make things better. Some local health authorities occasionally seem to have rehab facilities too. I still get tired, but I'm unrecognisably better than I was at the three month mark. Plus I'm still noticing improvements even now ( bit set back by a bout of Covid in the summer this year though).

The Headway helpline people are really wonderful, it was a total relief when I rang them the first time, well worth being brave for.

LouBL0u profile image
LouBL0u

Hi Lee

After a bang to my head, I got diagnosed with post concussion syndrome. After seeing a neurologist ( privately for speed) I was diagnosed with Functional Neurological Disorder. I’m unsure what your on-going symptoms are but could this be something to research? There are lots of videos on UTube about it. There’s also a website fndhope.org

I’m pleased ACAS are supporting you and totally get the mum guilt.

Good luck

Meneage profile image
Meneage

Hi. I got post concussion syndrome after a crash Sep 2022. After 7 months off work I started a very gentle phased return to work. I’m now just about full time. I think my brain is still rewiring itself and improving month on month.

skydivesurvivor profile image
skydivesurvivor

Accepting the changes to u life are very hard to do!! Even worse for others, they see, expect the old you. The only good thing I can offer is in time as u redefine you. U take the better qualities, ditch the bad and make a new you?!! Me y be happier with, taken me 23 years!! Find the caring side to us & volunteer to help others who, be been through the mill. Met a lady who was a head mistress prior to her stroke. A very timid withdrawn character. As our friendship continued o took great pleasure in helping her to re-define her character with the help of others. Whilst doing this she helped me to do the same! A whole new , different life is ahead of yoy, please report progress here to inspire us?

Teazymaid profile image
Teazymaid

so sorry to hear this .. I would try contacting Your GP and headways for some further advice .. sue x

WonderingWanda profile image
WonderingWanda

You poor thing. It’s such a shock to try and go back to what was previously easy for you to manage only to find that it’s all such a struggle.

I am in a similar situation as my Head injury was April. I am still struggling with the fatigue and concentration esp when tired etc. Good days and bad days like you say.

It’s so soon to know how long this will be this way. I have been told to wait at least a year before I think that it’s permanent and in the meantime just to try and manage the fatigue as best I can.

It’s so hard when the demands of Norma life feel overwhelming at times. Be gentle with yourself.

Keep a daily diary of what you manage to do as well as what you struggle with. You can work out what you need to avoid and how to pace yourself as well as keep a diary of any unreasonable demands that work make on you. You may need that later to protect yourself.

For now just wait. It’s so hard I know.

Nemo24 profile image
Nemo24

Hi is your slow return arranged through a HR department & if it is are there regular meetings set up to discuss how its going including issues. Do your colleagues know about effects of your injury? I found I had to teach them too that I am different person who looks the same. Use the Headway chat as they may be able to give some help on work side. I also wear a green lanyard with sunflowers on it to show I have a hidden disability. Not all time, just in situations I think it will support me.

Good luck I know it's really hard returning to work.

Letsrock profile image
Letsrock

Hi Lee,

Welcome, I had the same in 2021 and only this year did a physio do things with my head and cleared the brain fog. She used tge dispels at tge side and the back of my head where I got hit and also pulled my hair.

It basically is the software inside trying to correct itself. I used balance retraining, food for the brain and very slowly retrain tge brain on everything.

Now and again it comes back but like a computer a gentle knock to move air or blood and it disappears.

I lost my eyesight, brain fog and dplitting sire head at back. I will never be the same again but got better.

With regards to work, concussion is a disability. You can phone ACAS and they will advise. Get the employers handbook for concussion from headway as they have to make adjustments just like any other disability.

Try retraining, food and physio. Get out even if you are dizzy as it helps the brain but it scary. Take one day at a time.

Good luck...

Jacacc profile image
Jacacc

Hi Lee, do you know that you can claim Industrial Injuries Benefit from the DWP, as your accident happened at work. The amount can vary on how much you get depending on your injuries, but it certainly could help you out at this difficult time, especially if your job is under threat. Don't be bullied back into work if you feel you are not ready, also you should get some legal advice from a specialist solicitor & headway can advise which solicitors are in your area. You have to think about yourself & your family as it could take months or years before you are ready to go back full-time. Also consider going to some Headway meeting as you will get a lot help & support and won't feel alone with your injuries. Lot's of good people here will give you some really good advice from their own experiences. I am a carer for my husband who suffered a brain& physical injuries that changed both out lives over 28 years ago now. Hope everything works out for you and that you make the best recovery possible, remember your not alone in this.

chaz3 profile image
chaz3

Hi there I feel the same and its been2years.try to find a quiet spot and try to recharge extra stress does make symptoms worse. Hang in there the hood will come.nice to see your children are understanding.my daughter learnt this is how I am now.

LeeSchmidt profile image
LeeSchmidt in reply to chaz3

Did the mum\dad guilt ever go away?

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