Headway
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Desperate

I have major regret, severe problems that I have written about on here with TBI and behaviour changes , which I don't like at all.Everyome says be patient , but every dy is getting worse and I'm very angry. Even the admin here remove some of my posts as they may be triggering they say. I see loads of doctors and health professionals and they know I am in a desperate situation but they can't see anything else they can do.

I suspect I may have very little time to stay alive despite gret mental strength and a wish not to die. Any suggesstions I may not already know about ( 6 years of problems - financiaal . mental and now the police)

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Oh Goldie, i do so wish i could help but it sounds like you have been seeking help from the professionals.

Brain trauma is really trivialised when the effects can be so life changing.

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Indeed as a doctor I never realised the effects could be so devastatingand the notes on here indicate it goes on for a very long time (if always) Frightening and I really never envisaged living like this. I'm ashamed of my self and what I have become

As a lifetime athlete I thought I would live to 100 but a cycle accident nearly killed me and left me very disabled

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None of us were aware what living with a tbi/stroke/sah was like. It's a patient ongoing emotional/mental/physical battle to stay healthy. You need unbelievably strong patience and self-love. Great to hear you've been a lifetime athlete. Get back to physical health by walking! I walk in the countryside for miles each day (have done from the word go) just to keep fit and awaken my brain. It helps build cognitive reserves so I hear! It also clears my head of negativity and re-focuses the mind elsewhere. I would also recommend meditation to calm down your nervous system, you sound exhausted. Look on youtube as there's a whole library of useful exercises! This whole experience is a 'learning curve' for everyone who's ever had the misfortune of a serious brain injury! You survived...start from there! Basically I think you need to see your gp to receive some help, possibly valium to steady your nerves.

Lean on your friends and family while you're feeling so distraught. xx

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I am a GP and don't like drugs. I've tried the mindfullness- I used to be a hypnotist so aware of that stuff.Low motivation, pain and weakness stops me frommuch exercise now. All excuses and I used to do Iron man trithlons, marathons and 100 mile bike races! Pathetic now I feel ashamed of what I have become - and the police are taking me to court over a ridiculous charge for accesssing a scam website

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Drug adverse myself but in desperation tried and great success. I also drink Matcha Green tea, which is said to be beneficial for depression & anxiety amongst a host of other things. American Journal Of Clinical Nutrition abstract:

academic.oup.com/ajcn/artic...

I'd also consider CBD oil, the current rage, as it reduces anxiety and possibly depression.

medicalnewstoday.com/articl...

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as I research doc I read the green tea paper with interest. What it shows is the mildly higher consumption of green tea in less depressed people, but it doesn't show cause and effect, so is the difference due ton the way less depressed people behave? I know that at the moment I drink very little tea or coffee due to my mood.

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True but pretty difficult to show a positive correlation when looking at population studies. I drink Matcha as 1 cup contains 10 times the active ingredients and it costs me £11 for 1 month. Placebo (?), I'll accept that if it works.

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If its any help, my husband boughr me a treadmill because i couldnt walk any distance at all. At least i could hold on while trying to strngthen the muscles in my legs, and i go swimming because you dont fall over or look drunk!!!!

I did jigsaws with a passion almost obsession to try ro rewire my brain and improve fine motor skills, both have helped.

When i mentioned to my GP that i found reflexology an amazing help, i felt my reflexologist joined all the nerves back up, he, my GP, suggested i might find acupuncture helpful. And i do, i have been having monthly acupuncture sessions for 2 years now and dont envisage stopping.

I also attended Tai Chi lessons for 12 months. The chinese doctor who gave me my acupuncture for the first 18 months and also led the Tai Chi has a youtube video, if you search Dr Yuhong Xie 18 forms you will find him. Unfortunately he is now working in Switzerland.

I have been trying, and still am, to get back to me and im the closest ive been. I need to push a little more, i am hopeful that the pregabalin i am now taking is the answer to my pressure headaches.

In july i shall join Andy AKA the Brain Damaged Baron in his walking marathon. Im training gor tgat now and hopeful😁

Do take care Goldie

My thoughts are with you

Janet x

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Excellent reply Swedishblue 😁

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youve still got a roof over your head, people who love you, warm food going into your belly.

yes our fortunes have changed,we are not the same people,but weve got to adapt stop moaning and get on with our lives.

watch the news, there are people far worse off than us !!!

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yes but I had worked so hard for so many years to achieve so much and have so much but it has now mostly gone millions of ounds loss, fitness loss relationships career. I'm stuck in regret I'm afraid

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As a doctor what would you have said to you as a patient?

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I'd have been detatched and never understood it well

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Goldie, your brain injury is very recent so your brain will be bang in the middle of trying to heal and to adjust after the trauma. 2-3 months is almost nothing in recovery terms so you'll be experiencing fluctuating symptoms and emotions.

A brain injury alone is such a challenging issue and I know you have other issues which are adding to that challenge.

But no amount of health-care can substitute for the passage of time, which is essential for the process of adjustment and re-learning after any type of brain injury.

It took 3 years for me to emerge from the after-effects of a haemorrhage with some level of acceptance and wisdom.

Take it slowly ; there aren't any short cuts to the passage of time............

Best wishes. x

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you are consistently verykind and positive, whereas I am the opposite. Alarmed to hear that 4 months is very little time - when I am getting worse - fell over getting out of bed last night

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4 months is very little time i only emerged from rehab at 3 months and then only because i signed myself out. Im afraid 20 mins of physio 5 days a week was much too slow for me.

Im at 6 years now but still seeing improvements. Im trying to beat the effects of an aging body too now, not good, but im hopeful xx

Janet

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I can't count the number of times I've fallen.......in the shower, the garden, the street............(it goes on) and all down to poor balance.

I'm learning to stop & think before certain activities ; for example, I never get directly out of bed now but sit on the edge then rise slowly, keeping my hand on my bedside cabinet.

It's a big learrning curve Goldie and I can see you're in mourning for the former version of yourself. It's a hell of a journey, but somehow we arrive at a fair compromise ; it's the only course of action..............and life's still worth living.

All best wishes, Cat x

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From being an athlete to this is terrible. getting older and weaker as I do so little

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Another suggestion - read James Cracknell's account of his survival and struggles with recovery from a very traumatic brain injury. He took a devastating impact to the back of his head from a side-mirror on a roadtrain. Was left for dead in a ditch! It's called 'Touching Distance' It might help you understand how he has moved forward with his life. Also a letter he wrote in the Telegraph;

telegraph.co.uk/men/active/...

It is obvious from reading your posts you have little idea on brain injuries. This might inform you about a "relevant" brain injury sustained whilst cycling.

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i read a lot and am frightened by the high incidence ofsuicide after TBI ) up to 30%. James Cracknell has made money form evrything including his TBI

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Still an inspiration to thousands!! His brave attitude shines through as he has fought so hard to regain his fitness. He deserves another Gold Medal!

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In fact, let that be, he has won his greatest achievement.

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Hi I wish I could give you some advise but I cannot think of anything possitive other than you are alive.

I had my tbi in 1998 with many physical and mental problems. My husband has been around most of the time but now because of how I respond to him on a daily basis he is divorcing me, so I feel very desperate but I understand I was lucky to survive. So I keep telling myself just keep on going and improve and live. Even it is now by myself I have to be as positive as possible.

Sorry I cannot help any further at this stage.

Keep me informed of your feelings please. Maybe we can assist each other.

Best

Mufc

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sounds like the reality of it. yes it does affect relationships profoundly. I suspect after a TBI, it will be difficult to have a partner!

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hola Goldie :)

I don't know of your struggles whether emotionally or physically, but I feel after reading your post that I can relate in so many ways.

Please don't believe for a second that I have it all figured out or that I'm on the precipice of an answer to all my/your madness. What I will say is that I too 'changed' quite dramatically into another person, but at my core I stayed the same.

Time awareness, creating urgency, anger fueled outburts are just the first things that come to head, but when the mental ability/strength came back after like 4 years; I manage these things ^ by facing them head on one by one.

Time awareness:

I get worked up a tad and react to people/events like it's already been like forever so what now! My brain still does that more frequently than I'd like to admit, but I manage it pretty well by acknowledging it's an issue.

Creating urgency:

This links into the 'time awareness' thing in that it has to be NOW NOW NOW because of like the above ^ it feels like whatever it is, is just taking too long. My 'creating urgency' sometimes happens now, but someone might be there to prompt me by saying 'Markus it's not life or death so just calm down'

I then stop, take a step back mentally and more often than not - come to the realisation that yeah you're right - there is no panic/rush.

Anger fueled outbursts:

I'm not your atypical 'airhead' in that I think about everything whether it be about choices to make or feelings to have. I'm personally very inquisitive about everything under the sun so after my accident (95% of others don't survive so my TBI is the worst of the worst) and post-accident I lost for a long time my ability to cross my t's and dot my i's so when a situation arose that I couldn't 'control' or 'affect', I'd for lack of a better description: LOSE IT

At first, I convinced myself that whatever is wrong I'll just fix myself. Turns out that just isn't biologically possible so I gave in to the abrupt madness in the end and my doctor prescribed 'Sertraline' which now I'm taking 200mg of and it's genuinely Goldie - been a life saver.

It helps significantly balance the off-balance chemicals in my brain and this type of medication might help you too? Side effects I don't notice or think even happen in my case.

No one on planet Earth has an 'answer' Goldie11 and you can either let what happened fu*k your life up or you can face the music with courage and discover a way to help yourself that works for you.

:)

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I feel for you and anyone who mourns and pines for their 'former' life. I do feel that recovery is as much about attitude as anything else. I'm almost 3 years post bi, fatigue and noise intolerance still plagues me in varying degrees daily. It's all about adjustment and making the best of what we have. I know despite my limitations I could've been much worse. The way I view life is I know I'll never be 100% but I am trying to be the best version of what I am now and still striving and never giving up hope of more recovery. I really hope you find as time passes that you find a level of acceptance. As Cat said no amount of medical intervention compensates for the passage of time. Sending a hug and wishing you all the best x

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you dont say why you are in trouble with the police, but you need the headway card to prove you have a brain injury and your actions arent your fault, you dont know youre doing them until theyre done.

i have an abi, agression, mood swings, noise intolerance, hate strangers and large crowds, inappropriate behaviour, but i was aware of any of this until my wife told me.

im on carbamazapine for the mood swings, it works, but like eveything, i still let fly every now and again.

ive also been diagnosed with epilepsy and and adult adhd and i think i may have some form of autism.

steve

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Yes I think I too have autistic features. The police don't want to hear any defence from me they are too busy prosecuting me

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