hearing about other peoples head injury recovery

[Flosmum04]

I find it hard when I speak to someone who’s had a head trauma and they are all recovered and doing well. Is it wrong to feel envious? I am happy for them but I can’t help feeling sad because it’s not been like that for me. It make me feel rubbish about myself. Anyone else felt like this? X

[Kirk5w7]

Hi Flosmum

I feel envious too although we know we shouldn’t.

Everyone’s battle is different, my main problem is motivation , every task I tackle exhausts me so I have to weigh up if I can complete them, there are so many unfinished ones around.

Right now I know I need to do the laundry but it involves going upstairs , brainwave!, I will pop upstairs, have a half hour listen to my book, get the laundry and that should combat the fatigue.

Thank you, if I hadnt replied to you I eouldnt have thought of that.

Dont feel bad for being envious, think of all those challenges you have overcome.

My ch love

Janet 🤗

[Flosmum04 in reply to Kirk5w7]

Thank you, Its nice to know im not alone x

[Hidden]

Hmmmm, just read all your posts and shocked to see that you've lied to everyone about your injury, your family, friends, work colleagues, probably yourself and you can't be bothered to go to your doctor.

How can you be envious about other people recovering when you have done nothing to try and recover yourself.

I've recovered about 90% of my TBI symptoms and have learned to live with the remaining 10%.

It took 7 years of figuring out what the problems were and trying every rehab technique under the sun, some worked and others did not. Recovering/ rehab means facing up to the reality of what's happened and living the recovery experience day after day, week after week, month after month, year after year. Just chipping away bit by bit by bit, never giving up no matter what happens and believing it can be done. Because it can.

You don't just wake up one day and life is full of roses.

Don't mean to be mean but maybe you should face up to the reality of your injury symptoms and figure out a way to get yourself recovered.

People with mild to moderate non acute TBI's like you got have a much better chance of recovering than other brain injuries.

The most common conditions (sounds like you may have these) is cervical/ vestibular/ ocular reflex issues, dystonia or spinal issues (they cause numbness and pins and needles), sensory overload and cognitive issues.

You can get the cervical/ vestibular/ ocular looked at and most probably fixed.

You can get the spinal/ dystonia (one or the other or both) checked out, Xrays, CT and MRI scans can show if there are spinal issues, if there are not then it's dystonia.

You can go to ENT to see if your hearing is ok.

You can go to an ophthalmologist to check your eyes and an optometrist to check your visual processing.

After that get a neuropsychology test to see what cognitive issues are remaining.

Also ask for a hypopituitary and vitamin b12 level test (this will check to see if your body regulation is working properly).

That should be enough to get you going on the road to recovery.

[DeborahLA]

hi I totally understand that feeling. I’ve had neuropsychology and am better but, o don’t feel the same person. It can be really frustrating.

[Skallagrigg]

My son is the one with brain injury and i.m the one that's envious , I envy all of you that post on here, I think how lucky you are that you can post,that you can use the internet that you can write how you feel, his brain injury does not allow him that, not because he physically cannot hold a phone or type, but his mental health would cause chaos online, jeez,we gave him a mobile phone for one day last year, he rang police, numerous times, he ordered pizza, a bicycle,(can't walk nevermind ride) and he had not the money to pay for it, i think ot was over 100 phone calls to the same three people , etc hopefully next year he may be able too lol in the meantime I enjoy the peace and quiet in-between his allotted times to call me on the rehab unit landline lol

[Rosebud66]

yes, definitely because it’s such a lonely journey and each one of us is affected so differently. It’s really hard not to compare… sending you a hug.

[Pairofboots]

Hi Flos, I can understand how you feel when you read people's messages and replies and they seem to have the answers and appear to be thriving. But this forum is like any forum, it gives a snapshot of people's experience, often the best bits, what worked for them, that's great. What works for one doesn't always work for everyone, sometimes what looks like the right thing may not be right, or appropriate for the stage of recovery an individual is at. Many that comment are many years post injury and have probably forgotten how much they struggled in their own recovery journey. Everyone is different, every injury is different, every recovery is different. It is like looking at Facebook profiles, everyone has a permanent wonderful life, no they don't, everyone has bad days, struggles, disappointment, they just post the good bits. Advice here is just that advice, you have to trawl through the good, the bad, and the questionable, and then do your own research. 🍀

[BinaryBiscuit]

Sorry you are feeling this way.

I hate the term 'recovery' as to me it meant that I would get back to the way I was pre injury. That won't be the case though as I have sight loss which is permanent. I have been given strategies for dealing with the sight loss as well as the fatigue but I feel that these only get me so far and don't get me back to the way I was. I am not the person I was pre injury.

So to me, I haven't 'recovered' or will fully 'recover'. To the medical professionals the 'recovery' is learning how to deal with the effects of the injury and adapting to them.

[skydivesurvivor]

possibly because it’s taken us time? Time to accept the changes, more importantly! Learnt to live with it? Learnt that occasionally The TBI bites?!! Viciously reminds us HI AM STILL HERE HEHEHEE!!! Nasty shit but we have little option. SMILE to spite it & move on!!! Good luck!!

[JPBeeves]

Every one is different, each persons body and brain injury is different. So therefore recovery is different. I have an ABI and fatigue and motivation are big issues for me. I am just getting support after 8 years, which I’ve had to fight for and change gp surgeries to get .people don’t see the brain injury me , they see a normal person

[Fishsoup in reply to JPBeeves]

Hi there…thank you for your post. My daughter has an arbi but and like you people do not see that she cannot do things as looks so “normal”. It is only a year but her carers accept when she says she is fine and do not give her the support she needs. I feel taking her to the gp is so difficult to explain and get support. We battle on but your post gave me some hope thank you.

[lcd8]

Sorry to hear you are feeling like this. But just try to remember that everyone has their issues regardless. A person may look as if they're healed/cured but they rarely are completely. Its true what they say about never really knowing what others are going through or coping with behind closed doors. I really hope things improve for you soon though.

[ImNotJay]

Hi Flosmum,

I know this may be completely unrelated to what you're saying, and just to mention something I've experienced that this reminds me of, here goes:

It is very easy for me to go from being friendly with someone to judging every fibre in someone's being, in an instant. I feel I have massive behavioural, cognitive and physical deficits which almost go unnoticed because no one really spends any prolonged periods time with me, but that's how I ended up partly through choice because I'm explosively reactive and angry.

I know it is an ideal some people have not to judge anyone at all, but I was reminded that humans make judgments for a reason and we need them. "That fire looks hot", "those berries look poisonous", but then my reaction to it feels almost out of my control.

When people who claim to be peaceful and friendly and loving etc. turn to me and tell me I'm making a choice to be in pain and not to do certain normal things like cleaning up properly; or can't find an item i dropped on the floor; or can't balance very well; or get really frightened all of a sudden and don't know why, I suddenly go "who the f**k are you talking to" as an impulse.

Just as one might say "that fire looks hot", one might go "I might not talk to him again" but for me it's "he's talking s**t and i'm gonna have an argument with him" and it happens so fast I have little control over doing it, my decision making is also really bad when it comes to friends and money etc.

Deep down, I wish everyone the best, but I can turn judgmental and rude very fast if people try and tell me about my life and what I should be doing, if they haven't been there themselves or understand what it's like. I need to learn what to do, as inevitably that's what people will do, but I don't know how to stop it..

All the best anyhow,

Jamie

[Ideogram]

Yep.

Likewise friends and family who have injuries or illnesses which stop them doing stuff but actually impact them far less than this and they recover much quicker. I try to be sympathetic (knowing that they're still a big deal for them) but I struggle with empathy tbh, especially as most people around me make massive assumptions that I'm much better than I am, and worse, don't actually ask.

I even get really annoyed at the NHS referring to PCS as a head injury - badged as 'not a brain injury because your brain's intact and you will get better'. To me that suggests a cut that can be solved with stitches, not the multifaceted physical, cognitive, sensory etc disability I now have. It makes me feel a fraud when I call it a BI but that's the only thing that really explains it to people.

You're not being unreasonable. It's just hard.