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Thread: Recovering from AVM Surgery/Brain Bleeds/Silent Stroke. Feel a little lost.

  1. #1
    Eyebrows
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    Recovering from AVM Surgery/Brain Bleeds/Silent Stroke. Feel a little lost.

    I guess this is fairly long.

    I posted a few times here about my ex-girlfriend and was told how I'd had a lucky escape, etc. that I was silly for focusing on her.

    I guess I was deflecting away from my AVM diagnosis, having had a brain bleed and having to look forwards to brain surgery. It was easier to talk about her than it was the rest of it. So I sat at my desk at work in tears at least once a week, would go off the floorplate with my senior manager (a rare case of an incredibly supportive one) and I would cry my eyes out and everybody assumed it was the break-up. And it was. But it was mostly the timing of it coinciding with my AVM diagnosis.

    Now that it's all over...I'm still recovering. It's a slow process. My AVM is gone but not before it bled twice. These weren't major haemorrhages, AVMs can have more minor bleeds which can still affect you in a bad way. I, stupidly, delayed surgery after the first one because of family reasons. Everybody at work has been amazing mostly. I don't think most people understand it and brain conditions can make people funny, but I wrote an article for our works magazine that explained what it was and told my story and I'd posted about it on FB too. I also have a cane and an eye-patch at the moment so it's pretty obvious I've been through something and word of mouth spreads.

    I was rather erratic the last year. I was an emotional basketcase, to be honest. My AVM affected my personality, the anti-seizure meds affected me. I went to Dublin and flew home the next day because I couldn't handle being in the hostel out there, I booked myself into a Travelodge for 2 weeks and told my family I was staying at a friends because I needed space. Now that it's all over, bar the recovery, I'm just exhausted and have no idea how to re-build myself.

    I have posted on here about my ex-gf accusing me of harassment at work. I've also spoken about the intensity of the relationship, the issues she seemed to have, the "You have to propose to me" texts and baby clothes in first couple of weeks and the disaster of a trip with her crying all the time. The reason I found it hard losing that relationship was that I had felt like I was losing the support so soon after my diagnosis. I'd never told her I'd had a bleed. I'd had partial seizures while we were out there and a TIA in the bathroom of our apartment in Prague. Managed to hide it from her, somehow, she was so wrapped up in herself tbh I doubt she'd have noticed.

    Anyway, the letter that I had sent her had basically been explaining about the AVM and it's seriousness, that I was scheduled for brain surgery and that it was incredibly risky due to the location but pretty much had to be done, that if I didn't pull through it or something happened then I want you to know how proud I am of her, things like that. I had bled twice in a year and radiotherapy takes up to 2 years so if I bled again it could be catastrophic, that embolisation wasn't an option for my particular AVM. Regardless, the surgery was difficult and as well as the risk of not making it out of surgery there was also the risk of paralysis, etc. I thought that most people in the world regardless of whether they were exes would be interested in talking before such surgery, especially a work colleague as I'm sure if I'd died there would have been a lot of questions asked of her and I didn't want it to have come as a surprise to her if that had happened.

    I guess those harassment claims still rankle me. Despite, everybody at work saying it didn't amount to harassment, despite her making things up about lurking in corridors, despite all my friends sticking by me, management backing me up, everybody on forum saying she possibly has BPD, every counsellor I've seen talk about how it sounds like she has a lot of issues, I still internalised it. And I know when you are exes with someone you are exes. I don't know...I got in touch with another ex who was more than happy to talk to me given the circumstances. Given my most recent ex planning to spend her life with me at one point, as crazy as it was so soon, as much of a red flag all that proposal talk was, I assumed she'd had enough affection for me to want to talk. Given what I did for her abroad and her finding out I was doing it while I was having a bleed on my brain, I thought she'd have looked back and thought "So that's why he reacted badly when we broke up" (I didn't act that badly, I basically was in touch with her the first week, then did try and get some answers, but I was always respectful, no name-calling, no irrational behaviour, given that I'd JUST been told I'd had a bleed, a silent stroke and had a life-threatening condition I thought I kept it together better than some given the sacrifices I'd made and all that crazy soulmate talk, but in her mind, it was bad) and look back at the guy who she would say "How can one person be so good?" and "I don't deserve you, you're too good to me, anyone else would have told me to get out" and be able to reconcile.

    She basically accused me of lying in those claims. I don't know if she feels pretty stupid now that she knows it was true or has felt any kind of remorse when she's seen me with my cane and eye-patch, I look like a sexy pirate, arrrghhhh. Those aren't permanent fixtures. I mean, I look awful and really shouldn't be back at work but that's a different story. I doubt she does. I'm assuming she probably read the article and assumed I was writing it at her or something. Either way...she's bound to know it's true and since I haven't heard from her, I'm pretty sure she still hates me and is still acting like she's scared of me. She didn't want to empty the suggestion boxes upstairs because I was there, even though I wasn't in the office when they were put up??? and said she wanted the other Communications Forum person to go with her because she couldn't go alone. Other Communications Forum being my a good friend, of course he told me, and this is a person who she used to say "Don't act like he's a real person with real feelings." I didn't tell my friend that of course. So she's buddying up to him now, I guess. He told me she was on the bus complaining about some girl from uni (yet another person she has problems with) and he turned around and said "You don't get on with people do you? You didn't get on with (first bf), you didn't get on with (me)," and that shut her up.

    This isn't so much about the relationship itself and I'm digressing. It's more about coming to terms with finding some meaning in life and the cruelty that she's shown has stunned me. Of course, it's easy for me to sit here and tell my side of the story and say I'm a good guy whereas she might tell her side of the story and people would say she had a right to claim harassment, I'm sure that's what she's done to some of her friends. I just...the way she has treat me, despite all the good from other friends, has me questioning everything.

    I feel like I don't have much to offer anymore. With some permanent issues from the bleeds, not major, but still significant enough that it's an issue, I just feel like I'm a totally different person now. The confidence I had is gone, the humour I have is gone, the positivity I had is gone. I mean, a stroke, a silent stroke, and I'm 28 years old. I thought I'd have had some epiphany about life and about everything but I'm still just as clueless as ever. I always thought that, maybe there's no meaning, and you should just treat everybody well and be kind and good to people and that's what it's all about really, that we create our own meaning and it's about friendship and love. The one person who I had genuinely loved, romantically, was willing to let me go into surgery and die without talking to me about it. Maybe she thought I was going to bombard her with questions about why she said this or why she said that. We were friends before we were lovers.

    Under normal circumstances, I totally agree, I spent way too much time focusing on this short-term relationship with someone who appears to have a few screws loose and I shouldn't have been in touch. In the context of the illness and surgery I hadn't thought it was that out of line, again, given that we worked together. I imagined if I had died that she would have felt some regret of some sort. Either way, the story about the AVM and having had the bleed abroad with her would have come out if I'd passed away due to instructions left about raising awareness, the story was still going to be posted at work. I thought about how she would have felt if she'd read that after I'd gone and thought "He was going through all that when we were out there", "He got the diagnosis just before we broke up", "That's why he was so different after the trip" and I thought she might have had some kind of guilt or remorse. I'd wanted to see her to tell her about it before anyone else to alleviate that guilt. To say, "It's not your fault." To say "I don't blame you for anything". My idealism and romanticism has completely been shattered. And it isn't the break-up. I wasn't happy with a lot of things. It's just someone you were close to doing that to someone and having that hanging over my head as I went into surgery.

    I'm getting my confidence back a little bit. My new team at work is friendly. I sit next to a Jehovah's witness, she's the nicest lady I've ever met, and we've hit it off really well (platonically). I considered asking to be moved onto days because of the ex situation but I also have a lot of friends on evening shift. So I don't know what to do. I'm 28. I know it's young still. But I'm 30 next year! This AVM and everything that has been associated with it has made me think, what have I really done or achieved. I have no real savings, I'm currently at home, I had planned on moving out before all this happened. My job is permanent, barring redundancies, so I have that but it's 9 months of the year, it's 5.5 hours a day so it's not enough that I could survive on my own. Eventually, I'm going to have to think about doing something else and I don't know if I can have a "career" now or if I'm just going to be in the civil service doing what I'm doing forever. My degree is fairly useless (Sociology and Criminology), I can't get into research unless I do a masters and probably a phD and even then I can't stand the theory and the statistics side of that. So I don't know...not sure what else I can do with it. I don't have the confidence or faith in myself right now that I could do any other kind of job, I'm a rather shy and introverted person. Well, I don't know. I'm in therapy to deal with the AVM things and we talk about the social anxiety that I have and how I don't believe I can talk to people, and about how I discount every shred of evidence that works against that belief like having just spent 4 and a half hours talking to a former colleague and a friend with no awkward silences or anything like that. Since the bleeds though I've had some issues with my verbal fluency, word recall, etc which messes with my confidence as well.

    Just feeling a tad lost tonight.

  2. #2
    sara-pezzini
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    Hi me again,
    So sorry to read all this, it's easy to say to just leave her behind and you deserve better but obviously you can't at the moment.
    Think it's also something that you feel like you have to hold on to since the rest is all so scary and uncertain.
    Brain bleeds and strokes at the age of 28 is not nothing, that's really awful!

    I'm glad they found it and were able to fix it but you never hear about the aftermath, brain surgery or anything in your brain, it's so hard to recover from
    Though the brain itself is ingenious and can heal itself with time as well, so i would like to hope for that for you and me.
    No more mister pirate! (Though a little Jack Sparrow is hot lol )

    I'm glad to hear about how your work is so supportive! Mine is too so i guess we're lucky cause you hear lots of other stories.

    Well you know if your letter and all you went through had no affect on her that is very telling of her personality, you need someone better in your life, sweeter, cause you sound very sweet yourself, so you don't deserve the crap she put you through.

    But sometimes it's hard to see that when the feelings are raw, you'll get there, just focus on your recovery now!

    Btw you had anti seizure meds as well!! Me too for the trigeminal neuralgia, those meds are awful!

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