My poor wife.

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Hello all.

After finishing my 6 weeks initial treatment plan and having a 4 week break, I'm getting closer to having my next MRI.

Followed by an appointment with my consultant to discuss results. This is booked in for the 14th/15th March, so not long to wait, and must admit, I'm very nervous of what's to come.

My wife has gone above and beyond from day one, and is dealing with this also, I know I'm the one with the Brain Tumour, but that doesn't mean she's not suffering in her own right.i titled this poor wife, as I feel of late, I'm pushing her away. I'm finding myself more snappy with her, and what always starts as a good day, will result in me upsetting her in one way or the other. I feel awful of late. How/why do we treat loved ones who support us this way.

I've been sleeping in the spare room, which I know she's not happy with, as but I just feel I need my own head as not sleeping great, hence up writing this at 3:40am. Why do we take it out on loved ones.

I just feel more low each day, I hate everything about this , and just want to be back normal, easier said than done, knowing the reality of it, there is never going to be a normal again.

Just wanted to vent tonight, hope okay with everybody. X

  • Same for many of us. I found that I was always up at 3am. The drugs (esp Dex)  mess you up. Dex is a sledgehammer but will save you life. You'll feel better if you can wean off them ASAP. The Keppra/Levirectam  also wipes me out like a tranquiliser. Talk to you Dr about alternatives.

    Talk to your wife as well, just as you did here. Personally I also feel guilty that i promised to stay with her and now I am forced to leave. Everything you have described is very common and I would suggest you talk to your wife and then your Dr.

    I would get back to your bed too. I ound it comforting and \I'm sure you and she will too. Don't let the illness have any control.

    Happy to chat if you'd like.

  • Thanks for your reply. My Dex got dropped to 4mg in morning and 2mg at lunch, but because I've had abitbof increased pain, they've notched it back upto 4mg and 4mg. I'm on 75mg of lamotrigine for seizure activity,  which I've never had, but a precaution I guess, I was on 100mg at 1 point, but was experiencing auditory hallucinations,  which was crazy. Felt like I was losing my head. I'll get back into the big bed definitely as I know it is important.

    when you say your forced to leave?

    The unknown is the worst bit. I did think I had control, but, far from it. But I'm not going to give up the fight.

    Thanks again for the reply and yes would be good to talk again. 

  • Hi Chris

    Vent away...that's what we're here for and talking/sharing helps.

    I can empathise with both sides of this one as I was in your wife's position for over three years.

    Mat is right. Some of this could be attributed to the medication. Dex made G very bad tempered and downright nasty when the does was at its highest. I'm pretty sure your medical team will be keen for you to get the dose down as soon as its medically appropriate so be guided by them here but please tell them about the impact it may be having on your mood. Prescribing anti-seizure medication as a precaution seems to be the norm. G was on Keppra for the entire time and I can't say I noticed it impacting his mood. 

    The key here though is communication. As Mat has already said, talk to your wife the way you did here. If you can't say it out loud , write it down but please don't shut her out. G refused to talk to me about how he felt and that made things even harder for me to help him as I felt I was fumbling about in the dark, scared I'd say the wrong thing.

    Have you tried journaling? I used it as my key coping mechanism throughout our journey and seeing the thoughts written down on paper took a lot of the power/fear out of them. Counselling might be another option to think about. 

    Taking it out on our loved ones is natural and part of human nature but I'm pretty sure your wife just wants to be there for you.

    Go talk to her

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Thanks weemee.can always depend on getting a decent response from yourself xx Kissing heart 

  • Just to but in re Keppra and Lamotrogine for preventing seizures. I've been on them for 10+ years now. With no problems once the doses were sorted.

  • I was on 100mg of lamotrigine and was suffering with auditory hallucinations,  it was so bizarre.  Had to knock them down to 75mg, that stopped them from happening.  What a weird experience that was .

  • I think there is something wrong with me. I am on 250 mg in the morning and same in the evening! That's as well as 1,500 mg of keppra. I should be flying!

    Seriously, I'm going to have a word with my neurology lady. As luck has it, I have an appointment with her on Monday! This is all very eerie.

    Cheers,
    Richard

  • My neurologist said not to worry about the particular dosages - the amounts were well within our ranges. It's really down to what works for each individual.

    We can have a go at changing to reduce the dosage if I want to, but we agreed - if it ain't broke, don't fix it.

  • Hi Chris4286

    I am in the same place as your wife.

    Sometimes I feel alienated by my husband as he does not share his feelings with me, and then I have to be careful it does not cause friction as the last thing I want to do is cause upset; it's a fine balance.

    I truly believe, like marriage, this is a joint journey; both parties need each other.  Your wife will undoubtedly be wanting to give you full support, she will accept and understand your snappiness, she will bear you pushing her away, and she will do it much better if you share just a little of how you are feeling.  I know because right now this is exactly how I feel.

    We treat our loved ones who support us this way because it is safe, they never let us down, don't feel bad, we're all human.

    I would also say please do go back to your joint bed, this is a place where your wife can indeed feel close to you.  Sometimes I just reach out with my big toe and touch my husbands foot, usually his left foot which is often numb, lol!  Nevertheless, it comforts me, and secretly I think it comforts him too; it is our time of togetherness.  If your lack of sleep disturbs her, she will deal with it.  I agree with Mat in Kent, don't let the illness take control.

    Best wishes with your ongoing journey

    AnxiousL x

  • I’m on 500 a day, and not much troubles at all