Guys,
Iām asking this mostly for someone else but I know this is a concern from before I had my AVM embolisedā¦
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 donāt live alone but you do end up working alone through the daytime.
It may be that you donāt cope but you have some strategies that take the edge off it a bit.
What works for you?
Thanks
Richard
Itās 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 ownā¦ it depends on how I feel also but i guess this can be challenging for someā¦ God bless!
I ātryā to keep myself occupied, doing something, ANYTHING to take my mind off of āMeā.
I know, for me, I can go down that āRabbit Holeā 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 Iād 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, thatās what Iād 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 āshitā over and over and ovā¦ 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 āHelpā was very foreign and to be honest I felt guilty to be asking. I think itās part of that caveman attitude āI man, I strongā, but I wasnāt and accepting that has been a very bitter pill to swallow. My only wish was that Iād asked for help sooner.
My recommendation:
Donāt ignore your physical health
Donāt 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
Itās 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 thatās serious luck
But, my other dilemmas are elsewhere - nothing stopped. Not my bills, not peopleās expectations of me, nothing changed - now I just have to drag my head at times - listening to shit, like āitās all in your headā < 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 doesnāt. . . 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 āglad youāre okā < I am not ok(well, sorta - by my ānowā standards)
I just got to speak with my wifeās 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 canāt 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 whatās going on inside of you more than yourself
I find it super hard living alone with my AVMs: I often wonder if I should have an āalert buttonā around my neck in case I have a seizure (Iāve 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: itās 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, itās hard living alone with AVM, it just is - but finding ways of being positive helps - the journey to that place is not easy - Iām 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 āthe right wordsā/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).
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 thatās why Iāve asked but I know itās a question any of us might need to consider, so Iām hoping it will be a useful thread for people. Thank you for sharing: I think itās 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. Iām scared every time I have to go up or down stairs; when Iām 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 Dā¦
If itās 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 ācome back to see us when you need toā
I have no set time on follow up angiograms at all. But, after doing a lot of reading on here - it appears that everyoneās 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 donāt have any scheduled at all. . . I was somewhat surprised - Iām 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 canāt be further operated on for the same reason.
For myself, Iāve 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 Iām conscious that the situation may be quite different where the AVM hasnāt been āresolvedā in some way or it gives signs of its presence.
Having regular scans helps to settle the mind?
What else?
Completely agreed,
Total obliteration, or full recovery from whatever type of surgery/procedure for the AVM is quite different than living with one thatās still live -
But, it still amazes me on how many of āusā live with these without any knowledge of them being present.
Living alone with symptoms - well, thatās where things have to get fairly scary & fast - I suppose in reality, weāre 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
Thanks for your response but it is inoperable, grade 6 bilateral AVMsā¦
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
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