I’m 5 years post op and still suffer from debilitating chronic fatigue which is worsened by noise, visual stimulation thinking and physical activity - pretty much everything.
I’m just being medically tired from my job because I can’t manage my fatigue. In my head I can do everything but in reality, especially when I’m tired, I have poor productivity and struggle cognitively.
Struggling to accept who I am. I have to pace myself just to get through the day. Now my sons decided he’s doing his last year of Uni from home. Normally, I rarely have the TV or radio on, becauseI need quiet, but my son sees it that he can use it - because I’m not!
I’ve tried to explain I’m getting more poorly but he laughs when I say I have a brain injury and need quiet around me. He has a tv in his room but doesn’t want to stay in his bedroom. He says I’m a scrounger because I’m applying for pip. I explained how upset he’d made me but he says he was only joking.
I love my son but I’m not who I was and I can’t deal with this. Invisible disability eh!
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TheiaR
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TheiaR you have my sympathy. Hardly anyone understands BI outside of the clinicians who specialise in this field of medicine.
So its not your son’s fault being so full of life at 22. Probably the best time in his life so far.
Having said all of that I can appreciate how we survivors suffer fatigue, somedays I find more than others. I think stress and anxiety can make it worse in my case, but outwardly to the world they think it to be laziness which it is not.
So my advice would be to pace yourself. Make plans of action and tick these off as you achieve them through the day. At least you can congratulate yourself on those successfully completed and move the rest to another day.
As far as TV is concerned, can you isolate yourself from it? Visual and audible stimulation can prove excessive and a quiet calm environment is ideally what you need.
Hope you can resolve it by reconfiguring things and that eventually your son gets to realise that the disability is real even if it is hidden.
He’s literally moved into my quiet space. He wasn’t supposed to move back from Uni for a year and I was hoping he might do another year after that, so it was a bit of a shock when he said he wasn’t moving out. I think part of the problem is that I let him do as he wanted, because it was only supposed to be until the start of the new Uni year, when he would have gone back to his own accommodation.
Wow! Honestly Theia, your son needs educating, not just in subjects of his choice but with the after-effects of brain injury. If he persists in his insulting 'scrounger' remarks he should be sent packing back to uni ; this behaviour is unacceptable and cruel.
It appears there are all the facilities he needs in his own room and he needs to respect your living space ; brain injury or not.
If you haven't already, please ask Headway for a printout of the lasting symptoms of a SAH and demand he study it.
I understand the pull on heartstrings of sons, and how we automatically stand by them in difficult times, but this is truly antagonistic behaviour and needs correcting asap. Is his father around, and does he 'get' the issues ?
Sorry if this is too direct but I feel so bad for you.
You can have printouts send to you by emailing the Headway helpline, or phoning on freephone 0808 800 2244 during office hours.
We saw this trait in my own grandson after my daughter divorced. Even as an adolescent he decided he was the man of the house after his dad left. My daughter tried the 'tactful reasoning' approach for good while, but working full time, moving home and being a single mum soon wore her down and she had a meltdown.
They're now a great team ...just as she, her brother and I have always been. I hope it doesn't take a meltdown for you to instill some fairness and consideration from your son Theia.
Please do reach out to Headway. They also have family support groups and maybe he should go to them, like it or not. They may also have counseling.
It took a long time for my family member to A get an understanding of it, and B quit trying to 'be helpful' by trying to make me 'more efficent' - aka do things their way.
This obviously can't go on as it is.
You may have to put your foot down, not that you need that on your plate. Please don't wait til you collapse.
Is locking away the tv and the radio an option? I am just wondering if something dramatic would make the point. If you had a counsellor to consult it might help a lot.
Good luck with it. He does need to grow up a little. You are not his uni roomie.
To his credit, he is good at wearing headphones and having subtitles on.
The headphones do cause me issues sometimes… I thought I was being weird! Thinking about it, the feeling of having them on, at least for me, causes another sensory overload.
All of us are having to learn every day what adjustments we need to make to cope with the world. It's exhausting, so having a safe space to unwind and relax is so important. Unfortunately, that safe space might not be your home if you live with other people, especially noisy young adults. I've got two teens with ADHD, so peace and quiet are hard to find at home. If your home was your safe space, but now that's changed, it must feel even more challenging.It sounds like your son is being, well, a bit of a (rude word). I often feel like my kids have no understanding of what I'm going through and how much help I need. I reckon kids of any age struggle to accept that their immortal superhero parent isn't fully able to protect them and take care of them any more.
Are there any good spots for a peaceful walk in nature in your area? Those definitely help me. At home, earplugs should help. Loop (loopearplugs.com) was recommend by my neuropsychology person, and they do a great range. At home, I often wear a big set of headphones as a signal to my family that I'm not able to cope with noise or conversation.
Again I find myself less than qualified to respond, I'm a 58 year old bloke who (so far) has escaped the joys of parenthood. But having been got rid of by my wife 25 years ago and my birth family 4 years ago I do understand the cruelty and total lack of understanding that can come from loved ones. With a head injury we appear normal and our day-to-day difficulties are mostly hidden, none of us wants to be disabled do we?
I'm afraid I don't go a bundle on the professionals, I'm yet to meet one who has actually done their head and I my experience much as they have all sorts of clever strategies they don't fully understand. That said, I rather hope you have a Brain Injury Service local to you and a local Headway group who can maybe help devise a strategy to help your son understand. It sounds as though your son has been very lucky you kept his late teens to current pretty normal through University, etc. perhaps the University has some involvement with head injury? I have just done some interviews with University of Lancaster with a view to improving the way this site works and I am hoping to get deeper involvement with Bangor University who I understand have a long-term relationship with both local Brain Injury Service and Headway group.
Theia, it sounds like you have given quite a lot of your life to the stability and normality of son, it is time for him to return the favour.
It would be worth getting your son to read the information available through Headway. It would help him to understand your challenges.
I am 2.5 years post TBI and still deal withextreme fatigue most days. I can sleep for Scotland but never really feel refreshed.
I have nought myself Loop earplugs help deal with background noise, as I am very noise sensitive. I don’t want to curtail our social life, motorbike rallies with rock bands!so need to find ways to deal.
So much good / positive advice on here. Thank you🤗. It’s encouraging to see you are able to follow your passions❤️. I will try to follow in your footsteps.
Keep on moving forward and enjoying.
Maybe I am being too blunt but you have had a brain injury like me. I had a craniotomy. It seems to me Iyour son is being abusive. I went through this with my brother mother father. Complete unrealistic expectations critical etc. No comprehension of my recovery process. My craniotomy was done 91/ 2 years ago. I still need quiet too like you. Loud noises and bright lights still bother me from time to time. My mother passed away and live 1900 miles from my brother and father. My brother is responsible for my father. He is 86. I had a seizure risk from my cranioromy. I have remained seizure free. Since I am a retired nurse - was rn I tried to educate my family about my recovery process. Completely useless. My concern for you is your safety.
You're totally valid. It's insane the amount of life changing things concussion folks have to go through that others can't understand. TRUST me I KNOW.
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