I gave advice today to Gemma who was struggling with her partners brain injury, his moods etc. In my situation i tokd her i had after 7yrs started to get my head round my partners mood swings I have had to for the sake of my health. But the thing I really struggle with and tonight feel like I want to pull my hair out and scream. Is the exhausting weight I have to carry, I have to struggle round the house on my walking frame and I have to switch plugs off, put things away, clean things. I have been the provider, the problem solver, the mender. This kind of weight on shoulders, when you have a bi yourself as well as managing two neuro conditions that have made me disabled. I am tired of being the strong one, the one that has to think for two.

I have just written my partner a letter and left it for him to read in the morning. If I speak to him I can see his short attention spam and I can see him switch off. At least I have to hope that some of it will go in by reading a letter. He is due to have another assessment with a new consultant and then has to wait to go to the brain injury unit. It can't come quick enough I wish it was tomorrow. My gp is visiting me on thursday and I think I have to have a chat with her and tell her how I feel.

This last seven years has been absolutely horrendous it has been one thing after the other. It has been monotonous and totally exhausting and has been very detrimental to my health attributing to my deterioration.

Don't you just wish you had a magic wand, or better still all the hassles and health problems and everything it brings were given to some of the bad people in the world that just seem to sale along.

Sorry I had to get some of my frustrations out.

10 Replies

  • Very well put angelfish, and I so understand and sympathise with you. We are 4 and a half years down the line, and I am able bodied, but life is a struggle every day, coping with all that comes with living with a husband with a brain injury. We all deserve medals!! x

  • Hi Molly your right it is a daily struggle and very exhausting. Its like having both a naughty and forgetful child in the house that leaves things turned on leaves mess everywhere. No body warns you what the aftermath will be like when someone has a brain injury. I wish there was a better set up in the nhs in our area. We seem to have to be on a waiting list to speak to someone, to then go in a waiting list to see someone and so on.

    Your right about the medals, although I think I'm too exhausted to go and collect mine lol :-)

  • Hello Angel, Jules here - just 'dropped in' quickly - supposed to be doing something else.

    Just had to write to say i am so sorry you are carrying so much - some days with you sound better than others but are far apart.

    Hoping something nice is happening around you right now to help ride you through the rough times.

    Life can be hard cant it. I am just about ready for the good stuff to begin now.

    Kindest regards



  • Hey Jules its lovely to hear from you, I totally agree life is hard, it is harder for some more than others. I know I have felt like I've had enough of the constant barrage of problems I've had to sort out. My gp came to check on me today, she is the nicest person (keeps calling me sweetie and holding my hand) . My partner is out for the day so its just been me and my dog Coco. So being on my own I could chat more with my gp, I told her what I'm coping with. So she's going to see if she can push his appointment with the rehab unit, and the brain injury unit so it takes some of the pressure off me. So I am now in my favourite pjs relaxing watching a dvd in bed so not to bad today :-)

    I hope your day is going well hun :-)

  • I'm sorry everything feels so rotten Angie. Carers have a rotten deal, especially when caring for someone with no awareness of how their needs affect others, especially partners. And I hope that the letter might act as a reminder to your man that his care comes at a price to your own mental and physical health.

    It's a hard fact that caring for another 24/7 requires sacrifice and damned hard work and it's a modern-day tragedy that most carers are under-appreciated yet expected to fulfil the role of on-call cooks/nurses/therapists/general dogsbodies.

    No one wants to guilt-trip a person unfortunate enough to need full time care, and we like to think that they're cared for out of love & concern. But there needs to be some rules in place to protect the carers from what often resembles abuse.

    Keep up the reminders Angie. I hope things can improve to ease your frustration and fatigue. Cat xx

  • Hi Cat your right it is so difficult for carers these days, and they are left to cope with so much. Because of the huge cuts in a lot of areas there is very little support. My partner is my official carer because of my neuro condition and disability. But I am unofficially his carer and I would say there is more stress involved for me. I am his support and that can be so exhausting. Last night I was in so much pain, and struggling to walk and just going for a simple bowl of cereal which I saw as a treat ended up me cleaning and sorting things out.

    Today I've had a day on my own, still in pain but had Coco following me about so I am now relaxing xx

    I hope you are well, and that your mastering your crutches xx

  • I'm ok thanks Angie.

    Glad to hear you've had a relaxing day with Coco ; hope there are many more ! xxx

  • ☹️ this breaks my heart because from day one when I came here looking for help u were there!u always offer me help or advice or a kind word to pick me up and I'm afraid I can't give u any back(well except the kind words)

    U have amazing strength and determination to b dealing with not only ur own BI but ur partners also!i really hope the letter works!thinking of u xxx

  • Oh Gemma thank you, it helps me if I can support someone else. I had to reach out to you when I read your posts to make sure you knew you weren't alone. I am a stubborn devil which I think helps, i refuse to give in. I am a great believer in dealing with illness, injuries added with other problems I get annoyed or frustrated at times, usually worst when I'm in pain and my patience is usually low. He did read the letter and the first thing he said to me this morning was that he needed to try harder. I know he wants to, and I think because I understand the moods and how trapped he feels it helps him.

    Please keep posting and I will always be here to support you xx

  • Jules here

    What lovely posts of support have been posted today - uplifting to read - thank you

    Kindest regards



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