Patience

I was the sort of person that had a lot of patience until I fell ill. For my brain to be able to relax I have to have things straight, in order and tidy. When I see things disorganised my brain can't cope, and I can't relax. If I was on my own yes life would so simple, but when your not it takes a lot of control. My brain today is having one of those days where its very sensitive to noise. I had managed some tasks today, but I went to rest and I had the tv on. When my partner came in wanting to tell me something. He had that determined look that he gets, and basically bursting to say his bit. I listened but with his voice and two voices on tv, my brain can struggle and it feels like its in a washing machine. I hate it when I get that feeling, and I had to say can you slow down my brains not coping. I hate having to say it because he can struggle to communicate. It is a juggling act for me managing my condition and helping and coping with his condition too. My therapist asked me to write out a time line from when I became ill and disabled to present day. I have had the battles with the nhs a lot of you have. But I also had to take on the dwp, inland rev, council, anti social neighbours. Basically the worst six years of my life. But I just kept thinking I can't stop, I won't give in even though I was in and out of hospital like a yoyo. My therapist called me inspiring and said I had a real strength of character, I said to him I've just learnt to fight and survive.

I hope you are all having a lovely weekend, thank you for being such a friendly support x

13 Replies

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  • Been there, done most of those things.

    Struggled at a meeting yesterday( about the co housing group I'm interested in) trying to discuss important issues with kids running around....

    Rest....without telly on ?? I like my music ☺

  • I am the same there's lots of tracks and different types of music that just calm everything down for me. I know lots of techniques to relax myself, which is a good job as I suffer from some horrendous muscle spasms. But calming my brain down and letting the washing machine and pressure subside takes a bit longer :-)

  • Oh angelfish,xx

    I haven't been on here for a few days and peeking in to see some really helpful threads that you have done.

    I can't talk much or type at the moment.. but yes you and others here are inspiring and it is great that folks here can give each other a bit of support .

    Survivors all xxx

  • Thank you, being on this forum does two things for me, reassures me that I am not on my own coping with things that have not been explained by any doctor. But voicing these issues on this forum I received reassurance and explanations. But most importantly if I can reassure, comfort or offer advice to someone and make them feel less alone, confused or pep them up, then that means the world to me.

    Angie xx

  • Thank you for your kind words xx

  • There are certain areas of my life where I can tolerate a little chaos but noise completely does me in...I am battling at the moment with the supersensitive hearing gifted by my TBI doing constant battle with fairly recently acquired tinnitus - which also drives me crazy...add in a TV crazy husband (bless him he is a sweetheart but he likes to watch a movie with the sound almost at cinema level) and the noises of daily living in an inner city and it is at EEK level pretty much all the time...

    People have laughed or looked sideways at me when I tell them something is too loud and so I can't hear it...that makes no sense to them but noise overloads my brain and I just can't hear a thing other than noise that I need to escape from and it renders me completely incoherent after a short while. Thankfully my husband understands and will turn down the volume if I ask him..but he lives here too and its no good if he can't hear it. When we watch tv together the volume is mid level and I wear earplugs...it works.

    On the rare occasions I am watching TV and my husband comes in to talk to me I use the mute or pause button so I can concentrate on just one thing. I tried to mute/pause on my husband but it does not work...the tv is much more amenable to being controlled LOL

    I am afraid I did smile at the thought of the two of you attempting to do battle with the spider...who probably wondered what was going on and scarpered off for a bit of peace of quiet ;)

  • Hi its awful when your brain can't cope, it is sound that really gets to me, as well as smells. I have always liked a clean smell or the smell of flowers or a perfume. But since the damage my sense of smell has heightened which can really disrupt me.

    The brains an amazing thing, but when its suffered some damage it sets such challenges.

    I'm glad spider gate made you laugh, I think when your in the moment thats the last thing you want to do, its later on when you sit and think about it lol. I know what afternoon we were trying to put a cupboard together. Putting flat packs together is something my partner is good at and one of the few things he doesn't loose his temper with. So we're sat there, and he's got everything but the doors on. But could we get them to fit, two hours of getting frustrated, I just thought I've got to find this funny and burst out laughing. He then started and we ended crying with laughing, there the times I like :-)

    Your husband sounds like a good one, its lovely that he understands that its hard for you and accommodates your condition :-)

  • I have the heightened sense of smell thing too...and when usually pleasant smells become overwhelming, it just goes go to show that you really can have too much of a good thing ;)

    I know that my husband is a superhero in disguise...he has put up with so much and every day I am thankful I chose to marry such a wonderful man.... he is funny and sweet and human...just the right side of being saintly...because saintly would just be too much to bear. ;)

    We find ways to laugh through some of the more trying times and humour has saved us many times. Delighted to know that you and yours can laugh together too.

  • For us we're both coping with problems, his are more severe. Anyone else would have left him, but I know he's been through some horrendous things. He was run over by a car and nearly died. Then about a year later he was violently attacked in his own home. He says it was three fellas, one was trying to strangle him from behind and he was fighting him, then one of the others hit hi in the face with a metal tool box. I don't know how he managed it but he walked to a relatives house to get help (a couple of miles). So I know there's a fighter in him. All of this happened before I met him, and I think he'd just learned to accept his behaviour his moods and memory problems. Its been a battle to get him to accept the issues. I just want him to have a better quality of life. Where ever I can I try to have a laugh or connect with him with things he enjoys or knows alot about.

    Lifes hard but made so much more challenging when you have these problems. :-)

  • That all sounds horrendous... he is lucky to have you on/by his side :)

  • When I became ill everyone said how lucky I was to have him, and that not many men would have stayed. I didn't tell them that I was having to handle his moods and temper, because I didn't want them to think badly of him. What in fact was happening was he was making my health worse. We have been through hell, we've had to go back to basics and start a fresh. I'm a fighter I've helped him with his confidence, he just needs help finding a way with all the other things he struggles with. But he's in the system now so I'll make sure he gets help :-)

    Its lovely to speak to someone going through similar things to me. That's the great thing about this forum x

  • I just want to say thank you for writing this down. It's my husband with the BI and as I expect you can guess he finds it hard to describe what is going on for him. To be able to read the experience of others is enormously helpful for me in understanding what my husband is feeling. He listens to story books to rest and that seems to work for him.

  • Hi I think thats whats great about his forum you get to hear about other peoples stories and their struggles whether they're the ones with the injuries or the carers. I think its comforting because you suddenly don't feel alone. Just knowing there are others is a reassurance. I am glad that my post did that for you, it can be so difficult, if someone suffers from communication problems then you can feel as if you are in a one sided relationship. No matter how bad its been for me, I have always tried to think how is my partner feeling, he must be so frustrated and feel so trapped inside himself. With me struggling with my own brain injury that are different to his I do understand his frustrations. Please keep in touch x

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