It’s been a while since I’ve posted a long rant. I’ve tried my usual techniques to ignore the negativity around me as well as the vexation caused by those supposedly are my “support system”. I’ve tried talking to them. It doesn’t help because they really don’t want to hear it, not because they stop me from talking, but rather they don’t want to HEAR the problem nor do they want to acknowledge I live with an AVM that has ruptured once anymore. So I finally came to the one place I get support (they don’t know of the site really, but I have made it known to the family that I get support from people I haven’t even met).
Guys, I really don’t know how much more I can take. The boundaries I put in place to protect myself so that I can try and help myself not to be in debilitating pain or developing micro bleeds again or aggravating the venous hypertension doesn’t seem to be working anymore. And I have no idea what more I can do since I can’t walk away as they’re my husband and mother, and my only sibling (once off from her side).
Despite the AVM, the Almighty has blessed me with 2 beautiful kids, and they are my everything. And I have never denied any of them (mother and sibling) access to my kids. In fact, my kids use to go on overnight stays weekly from the time they were about a month old (not so much anymore as they’re young kids and want to do their own thing). In 2019 I had a second cerebral angio. No change to the AVM size thankfully but a few more feeding vessels have developed as well as venous hypertension (high pressure in the vessels feeding into the AVM). They’re all aware of it. But I have not been able to do things as I use to and my being able to meet for a meal or go out on short notice, hasn’t been possible anymore. The same happened when we planned something in advance and I wake up with debilitating pain. Long story short, they all had a problem if I couldn’t make it or cancelled on the day. They still had access to the kids but apparently if I said no to them even for the kids if I couldn’t get them ready to go out alone, it was an issue. Sibling openly told the rest of the family she voluntarily doesn’t speak to me. There’s no reason for her to complain, but I gave oxygen to the crap she complained about to help our relationship until it wasn’t getting me anywhere and then I chose to speak up, call out on the nonsense and killed the oxygen. Apparently she doesn’t know anything about an AVM or how bad it is (she was there when I was diagnosed).
Mother - yeah, she’s been spewing forth outright lies about me to my family. It all came to light, and they now choose not to engage with her about me (this is my extended family… uncles, aunts & cousins who know me and finally caught up with her).
Last week was awful. I actually could feel the pressure in my head and the blood flow. A coin could dance on my temple. First time I ever felt the pressure and to such an extent, I didn’t feel the pain. My mom popped in one of the days last week, and apparently she knows nothing about the venous hypertension. I was annoyed and said I can’t understand any of this or why they keep saying these things when she and my sister were there when I was diagnosed, when I had a hemorrhage. And no, I can’t come out for “just half an hour”.
The husband - years ago accused me of making it up about an AVM (I can’t even begin to make sense of that nor will I bother trying). Being in bed with the debilitating pain is me “relaxing” and not pulling my weight (only thing he does besides work, is drop off and pick up the kids from school). Pain or not, micro bleed or not, I still do what I need to. Except the school rounds because I won’t put my kids at risk driving with pain so bad, your reaction time is compromised. I also won’t put myself nor other motorists in jeopardy when I know better.
I’m tired of the judgements, the “I don’t know you had this”, the “she’s not a doctor so how does she know she has a micro bleed” etc. It’s an inconvenience to them because the selfish people (I’m using other colourful words in my head 
) can’t get what they want out of me. We had a family wedding. I couldn’t make it. I really tried. Stayed in bed, etc. so that I could take my kids because they really wanted to go, but said they wouldn’t without me (they’re very understanding and I’ve been very vocal now that I will only push myself with pain for them, but I also have to use my judgement).
I lost my gran a couple years ago. I still struggle with it. She lived with my mom and we all lived together and I moved out when I got married. I can’t speak about her or listen to my mother speak about her because I also saw how my mother treated her. I try not to do the same to my mom no matter what, but the selfishness makes me lose my temper once a year. Either way you can’t talk to my mother diplomatically. The woman honestly cannot hear what you say. Everything is taken personally and then I get the emotional blackmail. Since my gran passed away, suddenly the spotlight is on me. I’m still the same person, but I know my sister filled her head with BS because she won’t let my mother live with her. Yet it’s just her and her husband. But I’ve offered my mom to move in with us. But I’m the one spoken about, I’m the one lies are told about and my kids and I are the ones she looks for when she’s bored and lonely. Hey, knock yourself out using me, but I won’t tolerate it being done to my children. Or any child for that matter.
I’ve made it clear to my husband and my mother that the AVM is an off limits topic to them. They can’t speak about it nor will I share info anymore or any developments. Informed my husband he’s been stripped of any medical proxies related to me God forbid that’s required and I’ve given my directive to my surgeons.
I feel disillusioned that this is how they’ve also started behaving. I keep my distance now. As for my husband, I’m figuring it out, but it’s on pause for now for me because I’m dealing with pressure and pain.
The highlight was October. Aneurysm and AVM awareness month and had it on my profile. Spoke about it when my mom was here, only to be gaslit and told it’s mental health awareness month. Her point of saying that isn’t because she knows someone suffering from mental health issue, it’s because my sister is a psychologist. To which I replied “oh no, who’s having a mental health crisis (answer received was nobody, just a fyi) and I reply “really, you couldn’t just keep quiet if you don’t want to acknowledge what people are trying to do to bring awareness to this”. And then I asked, how many times will you pretend this doesn’t exist? Yet she was bawling her eyes out when I was diagnosed.
There’s more I can say, but it’s just different versions of the same thing. I’ve now chosen to distance myself further for my own sake. For me, I’ve noticed emotional stress and trauma make my pain worse and lead to micro bleeds.
Thank you if you made it to the end of this. Please know this: I value each and every person here. You have been an immense support system and I’ve recently showed my kids this forum and what it means to me.
I hope everyone is doing as well as they possibly can and no not a day goes by without my thinking of all you brave people out their living with this.
xoxo
Suraya
