Venting topic - hooray

Sorry. This is boring I know. I have been struggling so much and the struggles keep getting worse and worse so I figured I should blog about it to people who can maaaybe relate.

Small AVM in my right occipital lobe - probably acquired when 2 yo me fell down stairs. Not sure how much I was assisted back then. No MRI probably. Or Maybe Not. My maternal grandma had a stroke at 30 something so maybe it’s just fucked up genectics wk.

Grew up Weird. Diagnosed OCD at 6 but fluoxetin made me MORE aggressive - my aggressivity has always been a struggle ; my fuse is SUPER short. My father … never got along with him well. His high bp makes him very intolerant of my “temper tantrums” too. Struggles, bullying and getting slapped summed up my childhood. And internet which I kinda have to thank for everything good :slight_smile: anyway I was afraid of many things, pooping and fire and dirt and thunder and mechanical noises among others. A child who often cried and heard "why aren’t you like ___ " . I was NOT loved except by my mom who shared some weirdness with me as a kid (tiptoeing, germ OCD etc. ) … still I believed when they said I was loved and ungrateful / spoiled …

Depressed very early. At 17 I went into a psych bachelor course in my town ; at 18 my overnurturing mom passed away and I was lost in this big world. I thought I was fine just my depression had worsened so I didn’t eat so I could fake euphoria … at 19 I had a strange episode. My neuro says “epilepsy” . I am pretty sure I had a stroke. I remember one of the folks who bullied me in uni explained epilepsy as if it was for me … and I remember laughing and thinking thanks but no. I forgot how to do basic things. I could see but not read words … I felt like a baby … it was hellish. Took years to recover and never fully - lasting symptoms persist … The psychological injuries from being mistreated thankfully persist along with faith in God for I had no one else … psychiatrists prescribed horrible useless meds and I am glad I trusted my gut instead. I have been fighting alone for so long …

Last year my grandma passed away so I KNEW instinctively I would suffer from another episode of “what is this” . Went after doctors. One, two, three … ten. Spending money I barely have. One asked for an MRI - gliosis and AVM it says … my MRI is so weird but I have no one to ask about it. The doctors don’t look at me twice and tell me to be calm like a brain cathether is no big deal lol. Didn’t tell my father because I have no one else and I don’t want to worry him anymore since we are in horrible terms due to how much we fought over me wanting treatment … crazy. No one gives it more than 5 minutes of thought. I need help. God damn … needing help sucks. Maybe I should go into a neuro masters and investigate alone who knows maybe its good fate in a twisted way …

Anyway my work is super stressful for many reasons and I am tired and my performance has dropped so low because I have been very forgetful of words and having breathing shortages - since the pandemic made me so worried about losing more people as I did my lifelong anxiety worsened along with my migraines but … my father says I can’t leave … even though I am finishing another uni course at the same time and plan on making a career in it … I am forced to push my brain to its limit while there is a time bomb in it (this is how I used to describe my headaches and turns out I was kinda right in a way) … good thing my bp is often low but the other day it peaked … 140 / 120 … some days I wake up with my vision blurred or partially black ; I am fighting alone because I have no family to share my pain and the warriors I am trying to recruit (doctors) want nothing to do with it lol. I kinda fear waking up functionally blind as I live alone and never met any neighbors …

I am tired of being treated like finantial aid. Tired of being hated so much by everyone who stays alive in this world. Tired of trying to do the right thing on my own despite everyone’s unwavering lack of faith in doing the right thing. I just really wanted to vent to people that understand what it is like to have a physical brain condition messing up your brain and feeling incapable … unloved … unassisted … we are in this together. Thanks for reading

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So, if we’re going to help you vent / express yourself, it’s probably worth you telling us a bit more about “normal” stuff, like what you’re doing at university, some more things about work, things you like doing as well as the things that are more difficult.

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I’d also say just tell us about one area and let’s talk through that and then move on. Otherwise, it might be a bit shapeless and more difficult to work through.

Maybe tell a bit more about your university course to start with. I’ll be slow responding today because it’s just after midnight here, so I’m off to bed!

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Venting usually does us good, and most of us certainly do it! Having something like an AVM often resents challenges many do not understand. The effects, and fear influence in many ways. Fir me dealing with the fear f having another bleed was really difficult. It took me a log time to accept the fact that I had an AVM, and although I had gamma knife, the chance of a re-bleed existed.

This group helped me so much, and understood the feelings I was having. It was really difficult to stay focused, my mind would often be heading off in all directions. The fact is that we need someone to lean on, and while I had support at home I found it here often. We are happy to pass on our experiences, and I do agree with Richard about starting out with some of the more day to day stuff. You do have a lot going on, and great you were able to tell us, and hope we can help. Know we are here for you. Take Care, John

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Sorry, it’s hard to summarize so many years of struggling honestly lol. It’s hard to talk about “normal” stuff because they are all conditioned by my pains etc. My psychiatrist asked me how I felt about people in college I said - I feel nothing, except that I hate when they open their mouths because I have migraines due to it. It is what it is. At this point my mind is just a mess os psychological / psychiatric and neurological symptoms probably. You know when one strains an arm but has to keep working for a living so try to overcompensate with the other until both are strained? This is how I often explain how I live on a mental health level :confused: anyway, my point here was just - don’t worry about helping I guess! I think just a “good luck finding a good doctor” would suffice, I really want this actually. :slight_smile: And just connecting - I read other posts around and I felt really SEEN, people who struggled similarly with feeling their brains deteriorating but being unable to explain why on a medical level (“having an AVM” doesn’t really explain it… I don’t know in which ways it is acting up!) or avoid it and this is what comforted me so I shared my perspective. My health has been bad (thanks, stress …) and it’s not the first time I feel like this so I am worried as I feel my brain deteriorating the worse I feel emotionally - if you are asking me to speak from the heart, there isn’t really anything else I want to talk about, which is also why I scoff at people telling me to go to therapy as if I hadn’t been to it multiple times already, as if it would solve my issue. I kept telling doctors for years about my “weird episodes” (like the one when I puked 15 times in a row in 2-ish hours and my boss had to drop me from the car and I just puked on the street for hours like I was wasted on a Monday afternoon? yeah. It’s disabling and I hate feeling dependant.) and doctors had no clue/didn’t care either so. It RUINS my job performance. And for people who have money and/or are privileged enough it’s so easy to say “oh but what does it matter?” . “What does it matter if your living conditions keep getting worse because of your health and then you can’t afford health care and so your health gets worse and your living condition gets worse and [ … ] ?” Yeah. It isn’t something easy or nice to deal with. There is no nice way to put it - any nice way is just sugarcoating - so, the nice way is keeping quiet and talking about my symptoms to someone who can help instead. I am nice enough to keep quiet often. Most people feel like a bother more than helpful even if they’re well-intentioned. Because they’re well-intentioned I keep to myself but it makes me feel worse emotionally. Yesterday I took an Uber home (been spending an ungodly amount of money on these - I work far from home but I can’t take a bus anymore …) and the driver wanted to talk even though I had earphones on. I wasn’t feeling emotionally great so I went with unfiltered uneducated honesty :slight_smile: “you live there? It’s a good place!” “yeah, wish I didn’t though! I moved away so my grandma wouldn’t pass away thanks to my high-COVID-risk job but then she did anyway.” “oh I see, lived there with your parents?” “only dad - mom passed away long ago.” at that point I guess he Got It and gave up talking and I could listen to music at peace. So I don’t vent IRL - I try to keep the venting online … lol. Anyway I just wanted to vent here really. I guess some people can read this and relate - to how grief makes us feel worse (pretty sure my brain condition worsens whenever I am grieving … ) , to how working is difficult or whatever. It’s great to feel less lonely - some people had AVM-related strokes and are struggling with their walking rehab and I can’t relate to this for instance, I can’t say I know that pain or the pain of people fighting bigger AVMs - so I think it’s good that we all can share what we struggle with so we can meet others who can relate and go “ohh, I am not alone in this fight after all!” . This is why I like to vent …

As a poor girl in a poor country I am often overworked so I like relaxing. When I CAN relax (like lately I have been able to since I am on a break from uni and my job is chill in December …) I really like The nerdy stuff. Difficult - dealing with my health in general. I don’t look sickly but my internal organs are all messed up (sometimes in rare deadly ways …) . Not just the AVM and gliosis either - there’s other things. A colleague I talked to on a daily basis thought he had it bad but at some point I had to tell him “yep, natural selection didn’t want me alive but here I am” LOL. This was way before the AVM diagnosis too so yeah - and my mental fortitude always got me through stuff so risking my brain feels like bad punishment for… something.

Lol, also, I go on bad tangents - sorry. I don’t really know how to get to the point I want succintly. I used to think I have Geschwind Syndrome as unscientific as it is. Which led me to think I had TLE and go for imaging exams. Weird how things are. Talking to me can be a wonderful rollercoaster ride of complex useless information. Sigh.

Thanks so much!!! Yes, exactly this. It’s hard to not get obsessive with an idea when you are so afraid of it, isn’t it? My thoughts are normally A Mess since my weird brain damage episode but it gets worse sometimes. I don’t even know what is wrong exactly so I can’t tell others beforehand. I feel like a pandora box of shit lol. Sorry my posts are messy. Thanks a lot!!

Well, I always think it is good to talk, so part of what we are here for is exactly that.

I’d say plenty of brain AVM patients go through vomiting episodes as an indication of a haemorrhage. So that could have been your AVM busy leaking.

Definitely “good luck” with all the medical things you’ve got going on! I quite like the idea of being rather unusual, unique myself. However, I’m convinced it is way better not to be on the medically unique end of the scale! It brings a lot of challenges to everyone, doesn’t matter where you live, though I expect it to be even more difficult in a poorer country.

Very best wishes,

Richard

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It is, and it is great to connect. :slight_smile: I read recently that the left hemisphere of the brain tends to work with models of reality more than reality making people with RHBD (right hemisphere brain damage) feel “disconnected” . I find it interesting - I have always been regarded as “too rational” and feel disconnected and it keeps getting “worse” , I get better by working on myself ( love stuff like art therapy even though I am very artistically “untalented” !! ) and then I seem to “regress” BADLY sometimes, and at the same time my damages are on the right side ; I wonder if they are all related to blood leaks and such ( since my AVM is small and superficial-ish maybe it bled before and went unnoticed on the outside? ) . It feels very disabling … though my journey with AVM is very recent my stuggles with MH have been going on for 20-something years so to find out what is organic and what isn’t now is going to be another journey …

Being a woman in this situation brings a whole other set of challenges too, since I fail social expectations badly and have to keep swimming against the tide so I can try to be the best version of myself and make this ride worthwhile … :slight_smile: I can relate to autistic women a lot, never managed to get assessed, but it seems like RHBD and autism are symptomatically related so there is that too. Being weird I feel shitty often but some stories I read here made me feel a lot better already! Sometimes swimming gets tiring though … but us swimmers shall prevail!

Same to you in your medical or otherwise challenges!!! I used to think being unique isn’t a bad thing either, but unfortunately this world doesn’t seem very welcoming of uniqueness. When it comes to health IMO being healthy is better than being unique lol. I know I could have it a lot worse (and grew up hearing this a lot) but knowing this rationally doesn’t make it FEEL any better on those days when things get tough … yesterday was definitely one of those days.

I think even if you never get a diagnosis of autism, if you’ve got similarities to such people, find out about coping strategies etc. You’re probably doing a bunch of strategies already over the last 20 years.

We had a BBC TV programme about a UK celebrity called Paddy McGuinness and his family recently. He’s got two or three autistic kids and it turns out his wife is well up on the autism spectrum – I understand there is a genetic link in autism that is certainly relevant in their case. Since this is a BBC documentary, unless it is licenced to another broadcaster elsewhere, you won’t be able to access it outside the UK, which is a shame.

Paddy and Christine McGuinness: Our Family and Autism:
BBC iPlayer - Paddy and Christine McGuinness: Our Family and Autism

I’ve got a work colleague who worked out that he was autistic a few years ago. He eventually decided that life was getting really quite difficult. He had adopted two very young children and they – not surprisingly perhaps – had a number of difficulties from their earlier upbringing and he was finding everything really rather challenging. In fact, I think it was one of the kids being diagnosed with autism that led him on to think “You know what? I think I might be autistic, too” as the number of features cited by the doctors matched his own characteristics.

My friend is quite unusual. He’d say as much himself. A few years ago (at about the same time as my friend was going through his revelation) another UK celebrity, Chris Packham investigated whether he was autistic – Asperger’s specifically – and I think my friend is very much like Chris.

You can see the film about Chris on YouTube:

The way I look upon Chris and Paddy’s wife Christine is that once they recognise that they’re different and have developed coping strategies for things that most of us take completely for granted, I feel they feel less angst about being different. There’s a reason why they have to go about life a certain way and it isn’t them going crazy.

I hope you might watch the film about Chris. He’s quite a remarkable character, just like my work mate and I hope you see positives in the way his mind works, not just negatives. I know that both Chris and my friend bring different abilities to work.

Best wishes,

Richard

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Hey, thank you for that movie!! I will check it out :slight_smile:

Yeah, one coping strategy for me has been talking to women with high-functioning autism and learning how they manage. I think I would fit diagnosis criteria for it anyway even if the cause is organic. :slight_smile: My parents were / are quite unconventional too so I was raised in such a way (really open to learning things, little social pressure to conform. My dad is a mechanics / programming nerd and mom had an artsy sprit. Being me was just fine!) and I still have a bit of a hard time going “ohhhh… so not everyone is like this!” sometimes. Also, connecting to people - since I can’t always find environments as open and accepting of ‘uniqueness’ as home was and I really dislike some things that most people seem to do / be :frowning: In other words even the fact that high-functioning autism isn’t the ‘norm’ doesn’t sit well with me lol. I am like “why are you guys so weird?” and then I am like “ohhh… so I am the atypical one?” lol. (Unsurprisingly many people with autism have separation anxiety too, which I can relate to!) When I feel fine and happy it’s all good but some days … you know how you just want to be around people and things you can relate to / enjoy ? Those days I want to run away from my job place like a mad woman :frowning: sucks!

Thanks again for the link and I’ll check it! :slight_smile:

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