Living Alone With A Brain AVM 😬

Guys,

I’m asking this mostly for someone else but I know this is a concern from before I had my AVM embolised…

How do you cope with living alone with a brain AVM? Anyone out there totally crushing it or not really coping with this situation? How do you cope?

It might be you don’t live alone but you do end up working alone through the daytime.

It may be that you don’t cope but you have some strategies that take the edge off it a bit.

What works for you?

Thanks

Richard

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It’s always difficult I guess but I do try and keep people around me or go to places where there are others around when Im on my own… it depends on how I feel also but i guess this can be challenging for some… God bless!

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I ‘try’ to keep myself occupied, doing something, ANYTHING to take my mind off of ‘Me’.
I know, for me, I can go down that ‘Rabbit Hole’ and never come back. Not a place I ever want to venture to again. I tried all sorts of ways to avoid looking at it all, ie drugs/alcohol or I’d bury myself in work which when I look at it all now was pretty silly considering the reality of it all. The reality being I had a man with a sledgehammer residing in my skull trying to smash his way out. The drugs/alcohol just fogged it all for a while. The work made my head bang even more but at least I was doing something productive (well, that’s what I’d convinced myself of).

Ignoring it all can only go on for so long, reality has to set in at some point and I had to face it, Ohhh what an ugly view that was. I got to a point where I had to ask for help. Professional help via a counsellor. For me, I could keep rolling the same ‘shit’ over and over and ov… in my own head, but I was not coming up with any new answers. I needed external input. I used to be the helper, not the one who needed help, so for me to say ‘Help’ was very foreign and to be honest I felt guilty to be asking. I think it’s part of that caveman attitude ‘I man, I strong’, but I wasn’t and accepting that has been a very bitter pill to swallow. My only wish was that I’d asked for help sooner.

My recommendation:
Don’t ignore your physical health
Don’t ignore you mental health
If something is wrong, speak up. The longer you leave things to fester the worse the outcome could be.

Merl from the Modsupport Team

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It’s slippery slope for me almost every day

Depending on where my life was, being alone would possibly be easier in many ways - yet way more difficult in others

I was able to take care of myself physically as soon as I got home - so that’s serious luck

But, my other dilemmas are elsewhere - nothing stopped. Not my bills, not people’s expectations of me, nothing changed - now I just have to drag my head at times - listening to shit, like “it’s all in your head” < yes, it literally is

I had to take a serious step back & stop listening to the chatter around me & just figure me out - when I came back home, it was literally like coming back from the dead - nothing seemed the same & still doesn’t. . . But, this is only me - no one else is on this journey with me - they get to spectate. . . It seems that the younger folk seem to get it the most - while adults are just like “glad you’re ok” < I am not ok(well, sorta - by my “now” standards)

I just got to speak with my wife’s friends daughters who were there when my hemorrhage happened. Their input was so different than what I expected. One is about 7, she just looked at me like I came back from the dead, the other one is about 12 - she said she just can’t process this, the other 16 - she said she knew something was wrong immediately by how I looked & my facial expressions. . . Yet, no adult thought much of it. . .

I suppose the only thing I can really say is that it sure grew me even a thicker skin than before - no one knows what’s going on inside of you more than yourself

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I find it super hard living alone with my AVMs: I often wonder if I should have an ‘alert button’ around my neck in case I have a seizure (I’ve never had one, at least not yet).
Everyone I know in my life has had conversations with me about my condition yet the phone stopped ringing slowly but surely, except from my mum.
I have no work (the odd gig here and there) and so hardly ever see anyone. I used to be very social and my life was full but now, unable to drive due to DVLA rules and having to be much more careful than before (I now have a fashionable personal shopping trolley as my weekly grocery shop is too heavy!), life is very challenging: it’s easy to allow negative thoughts to fill my mind but I have restarted yoga in order to open my joints and release the stress held there, I cook all the time and eat healthier than before, I use all this spare time to read and read and read, enhancing my knowledge and desire to do new things. I have regained contact with friends abroad.
Yes, it’s hard living alone with AVM, it just is - but finding ways of being positive helps - the journey to that place is not easy - I’m still waiting to receive some mental health help after being on a waiting list forever, but I do know that this will help me further because I had an assessment done and I will get psychotherapy soon, and in this assessment the person said ‘the right words’/connected with me, and for the first time 7 months after being diagnosed I was able to cry and let my emotions out (the release was incredible afterwards).

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@JoJo69

Thanks for sharing that. As I am at the moment, I feel pretty safe but prior to having my embolization my world was shaken and I felt very unsafe. I can imagine the last year has been especially difficult with zero work going on and very limited opportunities to get out of the house and be with friends or work colleagues. So well done to you for getting through the last 12 months as well as you have. Not easy at all.

I was having a private conversation with another member here who I knew would never ask this question out loud, so that’s why I’ve asked but I know it’s a question any of us might need to consider, so I’m hoping it will be a useful thread for people. Thank you for sharing: I think it’s really helpful.

Lots of love

Richard

Hi JoJo:

Your post opened my eyes to something I purposely chose to ignore. To live alone with an AVM is scary thought. I have an AVM but I also have a husband that is fantastic, but he is getting on in age. I try to do as much as I can with out his assistance, and at times, that is dam hard. I’m scared every time I have to go up or down stairs; when I’m out alone; when I drop something and bend down to pick it up, it brings on Vertigo and I fear falling on my face. I pray and I pray a lot. I pray to get stronger. I pray before driving the car. And, yes I pray that this AVM will get out of my Brain. I so empathize with you because fear is real. Whether you realize it or not, you are stronger than you think. You got through 12 difficult months alone! Not an easy task, but you did it. I pray that each day you will get stronger. Wishing you the Best.

Sharon D…

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If it’s 100% embolized / obliterated then I would just do an annual angiogram for 3 years in a row

I suppose this also varies on a case by case basis

After my last visit to the ER & when I had my last angiogram follow up - my neuro team just said “come back to see us when you need to”

I have no set time on follow up angiograms at all. But, after doing a lot of reading on here - it appears that everyone’s case is quite different. Some are set on a six month interval, some are yearly - and, some are every other year. . . Yet, some(like mine) really are left without a follow up schedule. . . I asked them this when I was in ER last, specifically. . . My nurse said that I don’t have any scheduled at all. . . I was somewhat surprised - I’m not sure what their true reasoning behind it is

I guess my question is really for those who have an AVM that is not operated on, so the risk of a bleed increases incrementally over time, or an AVM that can’t be further operated on for the same reason.

For myself, I’ve had my AVM embolised and for as long as it gives me no trouble, my plan is to ignore it completely and just rejoin normal life. But I’m conscious that the situation may be quite different where the AVM hasn’t been “resolved” in some way or it gives signs of its presence.

Having regular scans helps to settle the mind?

What else?

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Completely agreed,

Total obliteration, or full recovery from whatever type of surgery/procedure for the AVM is quite different than living with one that’s still live -

But, it still amazes me on how many of “us” live with these without any knowledge of them being present.

Living alone with symptoms - well, that’s where things have to get fairly scary & fast - I suppose in reality, we’re the lucky ones

Yeah mine was scary the draining vein was literally twice as thick
Oh my gosh I decided to do embolization immediately

Three embolizations later the doctor was able to obliterate 100%

I have my first angiogram in May after the three surgeries

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Thanks for your response but it is inoperable, grade 6 bilateral AVMs…

Thank you Sharon. Strangely enough I am now friends with two gentlemen who both have long term conditions and so I can experience true empathy and can talk about my problems without feeling guilty, and we share and talk.
I hope to meet a life partner/soul mate one day and in the meantime I am staying very calm, relaxed and am living life at a slower pace, not knowing what may be ahead!
Jo
x

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