Living in hell

[sabin2015]

Hi my husband had a bi last year and has found it really hard to come to terms with it .All he says all the time that he is fine but I know he is not .just looking for some advise and support thanks x

[paxo05]

Hi Sabin.

Maybe he doesnt know if he is fine or not.

He is probably gratefull to still be here yet angry at the changes in himself.

How can he complain when he is still here?

These may not be the reasons but he is still coming to term with post bi. He may not have accepted any changes in himself yet and unfortunstley until then moving on is difficult....been there done that...its a nightmare.

On the positive side it WILL improve. Get help ...contact Headway for help aroundyour area. Please please dont give up.

Vent your anger on here if it helps and also ask or just ramble on to us.

Hope tjis helps Pax.

[sabin2015 in reply to paxo05]

Thank you .It's just so hard we had only just got married and I was 7 months pregnant when it happened .just so hard to re adjust .He has always worked and always been active .but he just seams lost x

[paxo05 in reply to sabin2015]

Sorry to hear this. Not the best start to married life but it will be a test.

Once again get help from where possible. It is hard to accept the changes but once done you can both move forward.

Accepting that you cant go back is hard but is essentisl.

You may be told bi is a marrage breaker but it doesnt have to be. With help it can strengthen it.

Also it may seem strange but you may also need help adjusting and letting go of how your husband may have changed.

Hope you work through this and keep in touch with forum .

Pax

[Hidden]

Hi, my husband had a sub arachnoid haemorrhage three years ago and spent over half of that saying he was fine. Drive me mad as I could see he was not, he would tell everyone the same and got quite upset if I contradicted him. We have now got to the point where he will admit he has difficulties, and when he has fatigue I can tell in his face, he will now admit this. We have a good relationship which has been put to the test on some days, I have learnt to be more tolerant and patient but have also leant when to tell him gently what I think. I had great support from my local Carers organisation, they helped me understand that what I felt was totally natural, but also that I had rights, like to return to work, time on my own or with friends. Headway helped my husband understand what has happened to him. I bought loads of their leaflets and books and left them lying around, in time he read them which helped him. He also has a fantastic neuropsychologist who I persuaded him to see six months after he came home from rehab. She was really great and made me understand that everything he was doing and saying was exactly what she would have expected. It's not easy to ask for help, but once I did I found life got easier for me as well as my husband. Xx

[sporan]

Hi Sabin,

I have a brain tumour and having been the main bread winner, driver and decision maker I am now feeling very unworthy especiaslly about complaining how I feel.

In the early day's I'd keep saying "Oh I'm Ok" so as not to burden my wife with my fears for my future or the added pressure on her for having to take on what I see as the Husbands role.

Both myself and my wife are now undertaking some concelling which is helping.

Has your husband been seen by a neuropsycologist? After my neuropsycological assesment with one I had several sessions following the assesment where I kept a diary of activity and fatigue levels then given strategies to deal with them and to diarise the results on fatigue. This process helped me to see that I am NOT all right and that YES I DO need help and that unless I admit to it and accept that fact then I can't progress.

Perhaps this may help both you and your husband to come to terms with the massive changes this will have, inevitably, put on your lives.

Not over sure this is very supportive and maybe more of a ramble but thought it may help, if only a little.

Kindest thoughts

Sporan

[cat3]

Hi Sabin. I think it's what we do when we want to protect loved ones from further worry despite knowing we're far from ok. It can also be a defensive state of mind to convince ourselves that we can force things back to normal by sheer willpower.

If you haven't contacted them already, you could phone the Headway helpline for free printed information on the after effects of brain injury, and show it to your husband. It will include advice on coping with symptoms and where to get help. The call is free and the number is 0808 800 2244.

Best wishes. x

[sabin2015]

Thank you will do x

[StrawberryCream]

Hi Sabin

Am so saddened to hear that what should have been a time of delight and of planning of good things to come, having just got married and with a baby on the way, that then your husband sustaining a bi has put difficult challenges into the mix. I am wondering how the bi was caused and what part of the brain it has affected? These things may offer some explanation to his difficulties now so it would be helpful if you felt able to tell us a little bit more.

I can fully empathise with your husbands struggle to come to terms with what has happened because that is a difficult journey and can take a long time although for some it is a point they reach quicker than others. There is no 'time' as to when it can be reached. It is like a grief process that you have to go through (and for those nearest and dearest to you - so you too) which hopefully reaches a point where you accept that the previous you has gone and you get to know your new you, accept that this is the new version of you now and begin to live your life as that somewhat different person and not feel drawn back to hankering after wanting the previous you back! I haven't achieved that yet and do not like this me with my limited abilities and daily struggles!

Also the reason I asked if you know what area/s of the brain has been damaged is because for some people with a frontal lobe brain injury they can lose there insight and awareness of the ways the bi has changed their abilities and behaviours etc and without that recognition can think that they are fine but they way they are acting or what they are saying clearly indicate otherwise!

I note that you say your husbands bi was last year. For brain recovery that is still early days. Are you getting any bi support OT specialist follow up?

Best wishes

[sospan]

I was "fine" as well!

But not really. The problem is for us blokes we normally don't like fuss or to appear weak or a lesser man.

Also when you are ill there is normally a way to recovery, break an arm and its a few weeks in plaster a bit of physio and there is a good chance that you can get back to normal. Head injuries are far more difficult to treat (if at all) and that is the hardest part. The problem as well, is that the parts that help healing (patience, logic, well being etc. are in the head and that is the part that is running out of kilter.

For me I spent the first year listening to doctors whom said just sit down and rest, don't get stressed just relax and recuperate. That didn't work for me.

From a collection of papers and forums I found out what I had to do.

1. Sort out the diet. Its surprising what a good diet will do to recovery, cut out any junk food, high fats, processed foods as these hamper recovery. Plenty of proteins and fruit and nuts etc.

2. Set out a plan for the day. Routine is good when you have a brain injury. if you plan the day out as meal, tasks, rest, meal, tasks, rest etc. across morning, afternoon and early evening. It is really surprising how order and sequence really helps.

I found that eating a better diet and now living on benefits mean that we had to shop differently which was a task in itself also not eating so much processed food meant we had to cook more. At the start I actually took 3 hours to make a Shepard's pie! but you get there.

Take work out of the equation for now and concentrate on the repairs. I won't say recovery as very few of us have actually recovered - its a bit like a rip in clothing you may sow it back but you will always see where it has been repaired.

Your husband may develop a different personality now or later as well as different symptoms over time which is quite common.

Keep coming back for support or to just vent

[SAMBS]

hi Sabin, sorry to read that, men don't always take well to health / medical issues especially talking about them., so it's probably easier for him to say he's fine, so as not to worry you. I do the same on a daily basis whether I am or not.

Have you thought about showing him the Headway website. you can also download in PDF format I think, from here, their booklets that deal with all the different aspects of brain injury. they may help you as well. thinking of you both. come back again if you have other concerns. their helpline is great also, sorry I've forgotten the number but you'll find all their contact info on here.