I’m feeling lost: I’ve just been told by my husband... - Headway

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I’m feeling lost

Mhelpsme profile image
35 Replies

I’ve just been told by my husband, that although he loves me still, I’m difficult to live with, I can be nasty at times and he’s still here because I need him (I took an overdose earlier this year).

I’m stunned. I’m just sitting here and I literally don’t know what to say or do.

I’m posting here because I cannot speak to anyone I know as I don’t want to cause friction in the family or with friends, but I feel lost.

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Mhelpsme profile image
Mhelpsme
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35 Replies

Sorry to hear that. People around me found I was difficult to deal with and I was thankful that they were honest with me. It was better than them lying. However it made me think a bit differently but we all remained friends and I was thankful for that too because they still helped me.

I remember thinking to myself 'oh well at least I know where I stand.' Then I would think that it must be difficult for other people to understand me but I persisted in living my life the way I thought best at the time.

It's good to know that people would stick by you when they are struggling too.

You may not see it quite like that at the moment but it will help more than you think in the long run.

I hope you get it all sorted.

Mhelpsme profile image
Mhelpsme in reply to

That’s the problem. I know I’m difficult to live with and when the mood swings occur I’m immediately sorry and say so. I’ve even praised his understanding and support to everyone and asked him to speak to his GP about the situation.

This is a bolt out of the blue. I feel betrayed. Especially as I’m only in this situation because of him.

I was so shocked I just needed to see if anyone else had a similar experience. Sorry, I shouldn’t have posted.

in reply toMhelpsme

It's a good post that most people would connect with! I'm sure you will get a lot of different opinions and replies and it would be interesting to see what people say. We are all different with different experiences along the same themes of life. Learning from other experiences is always good. I'm glad you posted so please don't be sorry because it reminded me of awkward situations and the good way they turned out.

Mhelpsme profile image
Mhelpsme in reply to

You may have seen my comments to others below. We’re talking.

Thank you for listening and understanding. It really meant a lot to know I wasn’t alone. For someone who’s never used forums, this is being so important to me now.

Have a good Christmas x

skydivesurvivor profile image
skydivesurvivor in reply toMhelpsme

Hi know what y going through!! It is a long, trying ordeal!!! Like many here, have been through the mill!!! I was low when I found this site, it saved me to know I’m not alone!! A good place to voice my feelings. Unseen/ known people who are very much in the same place as you just now. A safe place to rant?!! Find advice. I learnt to smile to spite my frustrations! Nutty? Try it!! Ok may need a coffee or a cigarette too? Just know y not alone! May never see us but please know the journey y face y not alone?!! Take care type!! Oh & SMILE?!!!

Mhelpsme profile image
Mhelpsme in reply toskydivesurvivor

Thank you. I’m so tired right now, I can’t stop thinking about it and feeling hurt. I told him months ago I was worried about the effect I was having on him. I told my sons as well. Told them to speak to their GPs, to tell them how I was and that they were suffering. One son did, he got help and pulled through it, my other boy talks it out with his brother.

I’ve spoken to him about it this morning, I’ve been awake all night. He says there have been a few times he could just walk away, but he hasn’t. I thought that was what love was. You work through the bad times. I dont know what to say or think. I have snapped at him when he tells me all the time “you know that”. I’ve snapped because I’ve forgotten and I can only tell him so many times that I don’t remember.

I’m ranting, I know. Sorry. I just need to let it out. When I try to talk to my husband he says I’m twisting his words. Not sure how you can twist… “I love you, but I don’t always like you very much and I’ve wanted to leave several times”. Last year was bad, but this year’s been hell. Last year I didn’t know I was going to change into this forgetful, clumsy, person who’s always tired, gets confused when reading forms, gets “lost” where she lives and who can snap or fall into the deepest depression at the snap of the fingers. Last year I hadn’t had a tel call giving me two days in a hospital with my sister as she died unexpectedly.

Thank you for letting me vent. My head hurts and my ears are screaming noises at me but venting here has helped a bit. I’ll try to ☺️ as you suggest, just not really feeling it atm.

skydivesurvivor profile image
skydivesurvivor in reply toMhelpsme

Hi again, hope u bearing it all, it’s a tough journey ahead 4 sure!! This is a great place to let off steam! Unseen people very much in the same position so we can understand y feelings!!! General public have no idea?!! Come scream whenever, if not me, someone else in the same position is all ways available. I have probably gone to try n make coffee!!! Keep safe….the smile will be mastered!!

Kavib profile image
Kavib

I felt lost for a long time, I’m 8 years after my brain Hemorrhage but I really wanted to help myself so I have done 5yrs of neuropsychology with my husband and he has also learnt a lot about how my brain now works. It’s been so helpful and saved our relationship. Mood swings still occur but not as often and he takes a step back to let the time pass. If you can understand the triggers by getting some therapy it will really help you 😊

Mhelpsme profile image
Mhelpsme in reply toKavib

My Neuro-surgeon advised my GP last January to get me seen by a Neuro-psychologist. Still waiting. Now my GP’s emigrating and I’ve got a new GP who doesn’t start for two months. I may be being cynical, but I feel I’m rolling backwards, not forwards.

Really pleased you and your husband made it ❤️.

skydivesurvivor profile image
skydivesurvivor in reply toKavib

Therapy sounds wonderful….have forgotten why I came, hello how are you?!!! tBI had a lot to answer for!! sMILE to spite the stupidity it causes!!

paxo05 profile image
paxo05

Hi , It is hard to hear the effects you can have on others unintentionally.

Me and my wife separated for a short while as I had changed so much. Adding to this my wife felt she was cheating on my old self with the new me.

During the separation we decided to be honest with each other totally. Even if it hurt the other person.

Strangely knowing we weren't having a dig at the other one but stopping things building was a revelation.

I'd like to say we got back together and everything is fine. We'll it's not , but it's a lot better and more importantly we are working together and not against each other.

Keep talking, if you find it hard then write each other a letter. Yep it sounds basic but maybe that's what's needed.

Hope you find a way forward,

Pax

Mhelpsme profile image
Mhelpsme in reply topaxo05

Sorry to hear that Pax, I know how it must have hurt. I really hope you both can turn it round again.

paxo05 profile image
paxo05 in reply toMhelpsme

Sorry I should have added we split about 15 years ago for about a year or so. It took us about another year to get back together.

Things are better but still a work in progress.

Mhelpsme profile image
Mhelpsme in reply topaxo05

I’m glad you got back together. Hopefully we’ll come through this, I’m just stunned atm. I’ll get there.

paxo05 profile image
paxo05 in reply toMhelpsme

If it's what you really want it's worth fighting for. Concentrate on you two. No one else matters.

Mhelpsme profile image
Mhelpsme in reply topaxo05

We’re talking. Thank you for listening, for sharing. It helps knowing others understand and don’t judge.

Have a good Christmas x

paxo05 profile image
paxo05 in reply toMhelpsme

Talking is the first step. But be honest , if not it won't work. Don't hold back as well.

Yes it will hurt , but it's the only way to get what you really want. Oh and don't say something you think they want to hear.

It's time to be honest and Frank and accept the outcome.

I found the last bit scarey and hard but taking that leap was worthwhile.

We knew at least if it hadn't have worked we at least had tried our best.

Hope you have a Merry Christmas

Pax

skydivesurvivor profile image
skydivesurvivor in reply topaxo05

Had grown apart prior to my accident, divorced him for abandonment? Was predominantly his manager, he lost much more than I did with my TBI. Shit happens, life goes on?!!! Merry Xmas, keep safe

Mhelpsme profile image
Mhelpsme in reply toskydivesurvivor

Hi, after three nights to think on it he came to me and ‘talked’. He admitted feeling lost as well and trying to bury his head to everything.

We talked for nearly 45 mins until my head hurt and fatigue set in. It’s a start and we’ll prob have setbacks - but 37 years is worth fighting for.

Thank you for responding. You were there when I really needed someone who understood and I didn’t feel I was alone.

Merry Christmas, stay well x

skydivesurvivor profile image
skydivesurvivor in reply toMhelpsme

Talking is a good start! Thinking of you, good luck!

demondez profile image
demondez

Hi please stay strong

demondez profile image
demondez

Hi please stay strong Dez

Mhelpsme profile image
Mhelpsme in reply todemondez

I’ll try. I’m just tired.

Mhelpsme profile image
Mhelpsme in reply todemondez

Thank you. This thread was important to me when I felt alone.

We’re talking. He’s talking. It’ll not be overnight but it’s a start to work on.

Have a good Christmas x

saville75 profile image
saville75

Sorry that you feel this way. I had a TBI 15 years ago. At the beginning, I was definitely different and I can see that now, looking back. I know I made life difficult for my husband in terms of sensitivity to noise and routine and planning what I was going to do. That has slowly eased over the years and I can say that I'm much less sensitive in the way that I used to be. Your husband may find the same thing occurs with you - over time...I just wanted to say that as it would have helped me back then if I'd known X

Mhelpsme profile image
Mhelpsme in reply tosaville75

Thank you. I’m trying to stay strong.

Mhelpsme profile image
Mhelpsme in reply tosaville75

We’re talking and I believe we’ll get through. 37 years doesn’t happen if nothing there.

Thank you for responding. I felt so lost and alone and having someone understand meant so much, helped so much.

Have a good Christmas and stay well. x

sashaming1 profile image
sashaming1

Try going to a marriage councelor to help.

Mhelpsme profile image
Mhelpsme in reply tosashaming1

Thank you for listening.

Charlie90 profile image
Charlie90

I am so sorry to hear this

I can relate massively

So I am hoping that I can give some sort of support

Firstly if you are happy to do so can you explain a little more about the issues you face physical/cognitive and relationship/support system/living arrangements

I experienced a brain injury around 4 years ago

resulting in severe physical and cognitive changes/disabilities severe epilepsy

Afterwards I have faced a long period 4 years

of relationship issues with my partner of 10 years engaged no children

I have told no friends or family the full extent as to not cause conflict

Only my psychologist knows everything

You are not alone

So many of us are experiencing the same

Post on here as often as you need to

I have posted about this many times on here after being told I’m not the same and he no longer sees a future

I removed my ring and we started the very long of a relationship break down whilst cohabiting

I went in to flight or fight mode

Wrote down all the things he supports me with

Then worked so hard on becoming independent with those things

So many health care professionals have told me relationships breaking down after brain injury is common

Unhelpful but true helps not to feel so alone

I also struggle with anger

I’ve made my mum cry twice this week

I do feel that i have become less tolerant of people and I will say what needs saying now

But before I would of said nothing

I feel this for me is a positive obviously not being nasty in my delivery

Things that may help

1. Neuropsychology this has been life changing for me

Having a long discussion with him what he needs from you as his wife

What I would add is that it takes 2 he may need to make changes as well as you

Don’t lose yourself.

Your marriage is of course important

But you are the centre of your own universe

Your health and happiness is paramount

(Things I have only learnt after my brain injury

Is he willing to go to couples counselling?

If so

The national organisation RELATE

Has been recommended by many people

speaking to your neurologist about side effects of any medication you may take?

My epilepsy medication can cause rage

You may need a mood stabiliser?

Lots of things to look into so try not to lose hope

You aren’t alone and hold on

Anger issues or not

You have been through so much if you have experienced a brain injury

No matter what the outcome

You CAN get through it and out the other side

Take care x

Mhelpsme profile image
Mhelpsme in reply toCharlie90

Wow, I’m overwhelmed. My character is very different. I do feel lost, angry, frustrated - at the world, at me.

I know I’ve been selfish and I try to think how it’s effecting others, but it’s not easy when my world has been tipped up and destroyed. I was 59 when I had the accident and 59 years being who I was is a lot to try and overcome. That’s a battle I’m having with the medical team as they seem to think I’ll “get over it”. I’ve got to come to terms with the new me - I don’t want to but I don’t have a choice.

I’ve put a note into Christmas cards to immediate family and close friends, telling them my changes. I’ve kept isolated until now and not said anything about the effects. I live remote so it’s been easy to hide.

All the above has not helped my husband. Him and our sons have supported me alone. Fighting to be heard, to be believed. Still fighting.

My husband and me sat and talked this morning. Not long. I can’t do long conversations but we’ll talk more and hope get there. We’ve been together 37 years - a lifetime - we’re worth fighting for.

Now I’ve “come out” about the new me I’m hoping it’ll help me accept it. It’s not easy. I feel stupid, thick, clumsy, lazy, depressed. I get angry at silly comments and also at myself when I’ve broken something, lost something or got lost, burnt the dinner or me, cut or scalded myself, cannot understand or follow conversations or instructions.

Stay safe, stay strong, stay positive. This forum has been a life changer for me.

Have a good Christmas x

Charlie90 profile image
Charlie90 in reply toMhelpsme

I am so sorry you feel so overwhelmed you

I completely understand

It is such a complex issue

I went to sleep opened my eyes and my entire world was different

4 years in I still grieve every single day over the things/person I have lost

I feel angry and frustrated and feel robbed

This last year I have done little things that are helping to build ‘the new me’

Starting life again as a new person isn’t easy

This has all helped to improve my relationship slightly

Returned to employment

Slowly learning to walk again

Learning to live more independently

I really hope you don’t have to wait long for a neuro psychologist

Couples counselling will be great

I wish you all the best and happiness as an individual and as a couple

Happy Christmas

Katie55 profile image
Katie55

Sometimes I think my husband’s head injury was a blessing…he had a hard physical job and worked long hours every day … I felt that he was on the verge of a heart attack when he slipped on some ice and banged his head was in a coma for two weeks and was not expected to survive…

But he did survive..he was “ different “ but a kinder more mellow version of my Husband emerged his only complaint was fatigue…he liked that word …he would announce that he had fatigue and take himself off to bed

Some of his problems involved his memory especially his non existent short term memory

He was happy with things he had done before his TBI …like visiting familiar places restaurants pubs etc etc

But very unhappy with anything new or strange …we went to visit some good friends who had moved to Dorset and he was miserable, very worried about getting lost and not knowing where he was …even refusing to get out of the car in Bournemouth !

But unusually for him he started talking to strangers previously he avoided talking to anyone who he didn’t know but started talking to just about anyone…we developed a special hand squeeze if he was being overfamiliar…or blunt ! he also had a card supplied by our Headway that explained that he had a head injury…this card gave him confidence that if he did get lost he could show someone the card with my phone number on

I could go on and on …he went to bed with his clothes on because it made getting up in the morning much easier ..he got hysterical when we decided to have a sandwich and I said You butter the bread and I will find something to put in it …I have no idea why ? He seemed to think that I was expecting Him to make the butties …he was quite a good cook before his HI but never cooked anything after it

He accepted that washing up was his job mainly because he knew that no more meals would appear till the last one was cleared away …I felt a bit mean but he was prone to avoid doing anything boring !

Acquaintances didn’t notice that he was different but people who came to stay certainly noticed that he was definitely different..his concentration was damaged he hated TV because he couldn’t follow the plot or remember the previous episode

He would go to the bathroom and just get into bed sometimes mid meal or conversation or he would go to get something and forget what he was looking for but I do that nowadays but not as often !

Basically I got a new different husband that needed a bit of extra care “ in sickness and in Health for better or worse were vows to be cherished

There were good bits and bad bits good days and horrible days we had thirty happy ish years

Seven years after his accident he got cancer and five years of operations radiotherapy and chemotherapy we reached the end of our journey together…he died very peacefully at home two years ago this week

My life is now empty I miss him terribly

He calls out to me in the night …

I would give anything to have him back

None of this actually helps you Mhelpsme but I do believe that being honest and writing things down helps us to recognise where we’re are in our journeys and what matters …

Mhelpsme profile image
Mhelpsme in reply toKatie55

I know what you’re saying, more than half my life has been with my husband. The shock has made try harder to think of how I’m effecting others, but sometimes the words are out before I even know I’m going to say them. I’ve explained this to him so hopefully this will help. Only time will tell.

We’re going out and spending the day together away from home tomorrow. We really need to spend time that’s not going to the hospital or around the house with all the reminders.

I’m not as affected as it sounds your husband was. My problem is I’m strong willed, stubborn, independent and (was) quite knowledgeable. Now I depend on family, get confused, forgetful and quite timid ( scared of saying silly things or talking strange, in front of others). I know I’m being clingy or staying isolated from the world, I tell myself off enough, but the next day I’m the same. I’ve chased up the counselling I’m meant to have - but been told the wait,ing list is still about nine months. In the meantime, it’s all just going round and round in my head. I had to complete a tinnitus questionnaire yesterday and I got confused at the questions. Makes me feel inadequate and useless and cross with myself.

I will get there , but I’ve just got to remember to think of others as well as feeling angry or upset that I don’t recognise my world anymore. In a way it would have been easier for me not to know how different I am and what I’ve lost.

I love my husband dearly, i just hope he still loves this version of the woman he married.

Remember the good times, remember how happy you were in his company, forget what happened after the injury.

I hope I’ve understood your message, but if not, i am sorry. X

catrabb1t profile image
catrabb1t

Hi, I have just logged on to write something similar and I have seen your post first.

I don't have the same issue with my husband but it it is a similar type of issue. I'm going to write a post. I hope things are easier for you? I read you have been communicating which is the best starting point.

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