I'm getting to that point. That point where you know it won't ever really be like it used to be. I'm not saying it's worse, I'm just saying it's different.

The pills I'm on make me feel odd, and I also hate relying on them. Epilepsy medication is a miracle mind, it's strange how we get used to brilliant services like that and then get upset with it. I can go into a chemist with my HC1 form and get kilos of meds that make what could be an absolute nightmare into just a bit of a drain.

I don't like losing things without my consent; if I'd been an idiot and drank too much or something then I think I'd be a bit more ok with it. Saying that though, I'm sure there are many people who would beg to differ.

Another problem is trying to figure it out, because there's nothing to figure out here; bad veins in brain=brain haemorrhage, brain haemorrhage=epilepsy, I mean it's pretty simple stuff. I'm lucky to be alive, but I just to want to of had to be lucky, just alive would have done.

Anyway, my pills are settling down, but what was going back to uni in September has turned into mid November, which is a bridge too far for me.

Other than that, I'm feeling healthier, which is good.

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14 Replies

  • Morning Ben, So glad to hear you sound more positive. Fully understand how you feel about the seizures. We are the same, every time we think the meds have worked, bang another one hits us. We have recently moved to a new area, and boy are we hoping a new doctor / consultant will have some miracle cure for it all. We can live in hope cant we......after all we have to!! Keep positive, you have your youth on your side!!

    All the very best, Molly

  • Hi Ben, glad to hear you're feeling more positive, I'm a fine one coz I don't take the advice I dole out to others. Just remember the way you feel when you're feeling ok about things. Like you I'd be more accepting if I thought I'd done this to myself but there's no answer to the why me, we just have to get on and make the best of things, so, onward and upward. Love Janetxxxx

  • Thanks, sometimes I do think I should be doing more though. Should just get on with it really :)

  • Ben, does 'a bridge too far' mean you're not going back to uni ?

  • Nono, I'm going back to uni, but instead of going back in September, I've had to wait until now. Which is annoying.

  • What do you think it is that has caused you to accept that "it won't ever be like it used to be"?. I want to know as this is something my wife hasn't really accepted 2.5 years on.

  • I just know that I won't ever feel like I used to, I don't mean that it's worse, I just mean that it's different.

    Everyone knows that everybody dies, but compared to now, it just seemed like a foreign entity. When it's shoved in your face like this, you don't really have a choice, it changes you.

    I couldn't really tell you what it is exactly that's changed, but I know that the best thing is to just let it be.

  • Hi Ulysses, the acceptance is the worst, I had a major melt down this weekend, frustration mainly on all our parts, doesn't change anything, I still keep on trying, I've not reached 2 years yet but I seem to have gone backwards recently so the rehab specialist is sending me for another scan to put, mind at rest, hopefully all is ok, although I don't want the status quo to be how I feel now!!!! So you see, I think we all alternate being fine with things then rail against it, not what you want to hear, but I think it gets easier with time, but I doubt it ever goes away. Janet

  • Hi Janet. I hope your scan goes okay. My wife often thinks that little illnesses might be her big illness coming back, so I understand your desire for peace of mind. I sometimes wonder if there's a little bit of PTSD in this.

    I'm sympathetic that you don't want your current state to be the status quo, but at least you're acknowledging the gap between now and where you want to be. My wife doesn't want to hear it. We've never discussed the ways in which she's different now. She hates the idea that she's different. And if I try to talk to her she bursts into tears or becomes hysterical, saying I'm getting at her. It's an awful state that means if I express myself I know she'll get upset. The result is that it constrains the dialogue between us, precludes honesty and alienates me. If only she could have been more open about it all.

    The problem I see with not accepting yourself the way you are is that there will always be a gap between who are and who you want to be (your previous self). This drives unhappiness: you're never measuring up. It's self evident to me: how could anyone be happy with this tension at the heart of her being.

    She's been violent and aggressive again tonight because of a conversation I wanted to have about her overspending. I just have no idea how to talk to her without her becoming instantly defensive. Any ideas?

  • Hi again, I do know how she feels, I had 2 months, only 1 of which I was a little aware of, of lying in a hospital bed being fed and washed etc, and that does a lot to help the acceptance when you can eventually start to do things for yourself but I remember crying and saying to my son when I was in the rehab unit, I don't want to be disabled, like I had a choice!!!! Well, luckily I've managed to fight someway back, and can walk and talk, cook , care for myself, most of my cognitive functions aren't diminished so I have a good quality of life, it could be so much worse. It is important for her to talk about it but when she's ready and I'm sure PTSD does come into it, I've even wondered if I should have some counselling to iron out the last bumps.

    What I can only imagine is how it must affect her having a younger family, I know how demanding that is and when you are recovering from something like this you need to devote a lot of time to yourself, multitasking for me is a no no now, it makes me so irritable, I have to squirrel myself away and be alone, not easy in your house I bet.

    Even, now I'm learning how I can deal with things. When she's ready this site may help although you need it too, you would have to work someway to be able to keep somethings private, I'm not suggesting secrets, perhaps writing to one another privately on here would help, writing can take the emotion out of the words. I sometimes, not so often now, get up in the wee small hours to write my thoughts and feelings in a diary, it gets some of the clutter out of my head and makes for calmer days. Just some thoughts, maybe they'll help.

    Do take care, Love Janetxxx

  • I think I'm now (nearing two years on) realising that any promises I made to myself and others to reach full recovery are well and truly broken. I've, so far, viewed my limitations as temporary and surmountable and, as with Ben, I don't know when or how it came about but it's finally dawned on me that the obstacles in my life are here to stay.

    It's like any other learning process.......but with added potency

    and an element of grieving (not to be confused with self-pity).

    Love & best wishes to all xxx

  • Since I have been injured there are a lot of limitations to my "old self" things I could do that I can't do so well now or not all. I can accept this and although it is difficult ask for help or let someone do it for me.

    One of the things I have been struggling with since my injury is that I "lost something". I don't know what it is - it like the feeling when you should have done something but don't know what or did you leave the gas on. I am not a spiritual person but it seems something has left my soul on impact and waiting to return.

    It seems to be you guys have a similar feeling

  • Hi sospan. Why is it difficult to ask for help? I think the answer is probably obvious, but I'd really appreciate it if you could explain anyway. My wife has massive problems asking for help (and saying sorry, which is another expression of vulnerability) and it would be good to understand your view on this.

  • By necessity I have always been independent and self sufficient from a very young age. At 15 as well as school I had two jobs to support the family. When things broke I had to fix them when letters arrived I had to respond. I have always been the "go to" person" and have been the only bread winner for the last 40+ years

    Now to say I can't do something, is another indication that I have lost another piece of independence but saying I can't do it means is a huge step, asking for help another stride. It took me 3 hours once to make a cottage pie - the family was starving but I had to do it.

    As you say one of the big things is to say "sorry" when you have an argument or get things wrong. One of the things since my injury is that the arguments get very intense and hurtful. Anger is one of the emotions that seem to be enhanced with a head injury but compassion and that inter person warmth seem diminished. When I know that I have done something wrong, I don't know how to express it sincerely to say sorry. At the moment conversation is still "frosty" between my wife and myself after an argument a week ago. It will be back to normal by mid week, but that seems to be the pattern at the moment.

    Its very difficult for partners to live with someone whom is looks the person they new before but acts like a stranger.

    hope this helps

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