I’m still recovering from surgery number four. I’m hoping to be on the tail end of this within another full week. I’m so grateful that this recovery is going so much more smoothly than the last three and won’t be trauma inducing. I’m at a point where I’m able to slowly wean myself off of the pain medication which I’m grateful for as well because I absolutely hate being reliant on medicine, specifically pain medicine. I suffer greatly with depression and having a chronic illness like this doesn’t help that any. The last few months have been tough but going through this surgery and this recovery has definitely triggered a few overwhelming moments mentally. I honestly feel like I don’t have a right to be upset because I have so much to be grateful for in my life. Like one of my nurses was telling me about how in her home country people with this condition don’t even have any resources or options to treat it, they are just left to suffer with no help or hope. I am so grateful that despite having to fight for it I have finally been able to receive treatment at a hospital, in a first world country nonetheless. There are so many others that have it so much worse off than I do. I guess I’m just feeling very lonely because I’ve realized that as long as I am fighting this condition I will always need to rely on someone for help. For example, I can’t take myself to my surgeries and then stay in the hospital for multiple days and take myself back home and recover all by myself, I need someone to help get me through that. And going through this has made me realize how few people I actually have in my personal life, in my circle. I mean my oldest brother literally was planning on going to a hockey game in the same city as my surgery and he wasn’t even going to visit me. He ended up not going at all, but he made it clear that if he did travel the 3 hours to go see the hockey game (that would have made him 8 minutes away from me at the hospital) that he probably wouldn’t have made it to see me. He hasn’t called to check on me and see how I’m doing and he hasn’t even brought my niece or nephews to see me when they live only 20 minutes away. During the entirety of my stay my mother (while I’m grateful that she took me because she’s the only person I had to take me and stay with me) all she did the entire time was b**ch and complain about how uncomfortable she was and about how much she wanted to go home and all around just put out a lot of negative energy which was not helpful when I was already going through so much. I didn’t feel any emotional support from her. And I also realized that one of these days when she’s no longer on this planet, I might not have anyone at all to take me to my surgeries because if I didn’t have her I wouldn’t have got out there in the first place. And we barely even made it out there to begin with because we are struggling so bad financially (mainly due to poor life choices on her part) I just feel like it’s a big burden to carry but I also feel like who am I to complain when I have so much to be grateful for even still. I guess that even after all these years I am still struggling to accept at this is likely going to be a lifelong struggle in some way shape or form, and that I’m always going to need someone to help me through this which is hard when it feels like there aren’t very many people in your life to do that for you. Sorry if my rambling was incoherent. I just have a lot on my heart and on my mind and I’m trying my best to put into words. My only hope and desire in life is to be independent and self-sufficient and to live on my own, on my own terms but part of me wonders if this disease will doom me from ever having that, which completely terrifies me. That is my worst nightmare: being unable to live my own life away from everyone else through my own will. I hate having to rely on others. It would be a completely different situation if I had more emotional support and a better support group in general but that is not the case. Being trapped with the current people in my life and relying on them is my worst nightmare. End rant. Thanks for listening.
I’ve been married for 27 years. It’s an amazing situation to be in. My wife has gone to visit our son several hundred miles away on a remote island because he’s working there for the year and she misses him. I was supposed to go but my mum has dementia and we’ve realised in the last couple of months how poorly my mum is. Someone needs to stay by while we get more permanent support in place for her.
As a consequence, last night was only the second time that I can remember in about 27 years that my wife has been away for what will be a week. I’ve escaped her due to work obligations in different places but she’s hardly ever broken free from me. It’s a fascinating experience because we lean on each other, no less one than the other, but in different ways. To borrow a phrase
It is not good for man to be alone.
nor woman, to be honest.
My wish for you is not to cast your whole life in the shape that it currently is. I think you’ve had a difficult relationship not that many months or years ago but I expect it won’t be the only one or the best one.
It seems tough when you’re in your twenties because other people run ahead of you and find partners and do the family thing and you and I might look upon that and think we are getting left behind. What I believe is that the things people value in each other in their twenties is nothing like what people value in each other in their forties. I think thirties is a bit of a transitional time but by forty people have probably crashed through their first (several) relationships and if they haven’t changed the parameters of what they really appreciate about a partner, they’ll probably continue to crash through more relationships.
Don’t give up on who you are, what you stand for, what you appreciate about life and people because I think it’s a long game but you’ll win out. I’m about sixty these days, so you’ll see I didn’t rush off the starting blocks like many people but I found some crazy woman who looked past the geek many years ago and stuck with him. May you also do the same some time. It’s a good way through.
Lots of love
Richard
I hear you. I have a brain AVM, have had a hemorrhage, and get microbleeds as well having venous hypertension. In the past 2 years, I reduced my circle of people who were supportive as after the death of my gran, it seems my AVM and microbleeds are burden to them as it prevents me at times from being present at gatherings, etc.
This kind of vexation increased the magnitude of my pain as I feel the microbleeds generally have occurred after some form of emotional or mental trauma. So for my sake and that of my kids, I developed what these people would call a bad attitude, but I no longer feel guilty for living with the AVM and what it brings, as I’ve seen their selfishness if they don’t get what they want from me, which is usually to bring my kids to them. From this you can glean its family I’m referring to, but I now adopted the attitude of not giving a crap. I don’t explain my absence, why I don’t reply to messages or take phone calls and have outright told them that they have no rights anymore to know what is happening with me health wise. I’m the better for it physically and it’s been better for my husband and my kids.
It’s a lonely journey. I too feel alone in this and probably the best support I received was from my Neuro and thankfully my husband and kids are understanding. My kids are very young but I’ve explained my condition to them and always remind them not to be afraid. They’re such a source of comfort and I’m blessed to have them, but regarding anyone else like my parents, sibling and some other family members, I just don’t provide explanations anymore. I do what makes me feel good so that I can be well for myself and my husband and kids and I’ve noticed everyone’s change in attitude towards me, but I’m ok with it. I’d rather be lonely in this than have toxicity around me that exacerbates the chronic pain. Also, talking to my psychologist is helpful. It is a lonely road and it’s sad people behave this way. These medical conditions I wouldn’t wish on anyone but I do get a laugh now and again when the same people complain of a terrible headache which paracetamol can help them with. All in all, it’s lonely, but I think sometimes that loneliness and a good psychologist is enough than having toxic people around you who don’t understand, won’t understand, and who have selfish expectations from us.
All the best and happy to chat whenever you feel you’d like to, and although I’m not online often, I will respond as soon as I can. I pray in the mean time that you feel less lonely and that your own strength is what pulls you through.
Thank you. And yes on a side note, I get so sick and tired of trying to explain AVMs to people who look at you like you’re talking about rocket science. And not only to regular people, some doctors are just as clueless. It gets exhausting.
I appreciate your words, they bring me much comfort as always. I was in a relationship for 8 years from 15-23. Unfortunately it was a very violent and abusive situation and I’m glad I got out when I did. Leaving when you struggle with chronic illness doesn’t make it any easier, especially when I’m now back in a living situation that I was trying to get away from to start with. All that aside, I haven’t let my unfortunate experience shape how I view people or connections for that matter. Its certainly not a priority for me at the moment, I’m far too caught up in the struggle of trying to keep my head above water. Finances aren’t great with my family and I’m still unemployed and car-less and I’m still battling this hellish AVM of course. It honestly seems like my AVM has gotten worse with this surgery, but I’ll hope it gets better when some of the swelling subsides. Since my diagnosis five years ago, I’ve had to struggle to accept that my body will never be completely normal again, it will never be the way it was before I knew what an AVM was. My AVM has done a well and good job and wrecking much of my tissue. I’m just grateful I can still walk, even though it’s currently accompanied by pain. But I’ve never fully accepted this. And today is one of those days where the fact that I won’t ever have my old life back weighs heavily on my mind. Perhaps my AVM will start to surrender more to surgery number 5 in six months. It’s hard to be 23 and know that I’m borderline disabled by this, and the things I used to love, dancing, running track, being athletic, I can no longer do physically but everyone else around me can. Some days I accept these circumstances better than others. But yeah, I’m still young and hopefully with much more life ahead of me, better days at that. I hope to find more people to support me, because I can’t rely on my mom forever, as she is not immortal and right now she’s all I have for well: everything, especially my illness. I just want to get my life figured out and find a way to get on my own two feet in this world. That’s my main priority right now. I just want a life of my own and I hope my AVM doesn’t keep a shackle around my ankle for my entire life.
I hope so too.
@moonglow500 I am so sorry to hear about your lack emotional support. Of course there is always going to be people worse off- I even felt that way when I had my first CVST stroke and was paralyzed and couldnt talk at 43. I was lucky and recovered but have constant head and body pain.
I am not sure if there are others here that live near you. But I myself have gone to be support for others on here for surgery who did not have anyone and others with different medical conditions to advocate for them. It does make a big difference with the care you get.
We are here for you and people don’t get it especially when they cant see something - I am sure you get the oh you look fine etc.
The body is amazing and as my uncle loves to say they are practicing medicine. The younger things happen to us the better chances we have of recovery so don’t give up hope. There should be a social worker at the hospital and every county in the USA has an Aging and Adult Services - I know you are young but there might be free services that you qualify for and can get some support - like rides and social services. Isolation is not good for anyone- This is a big topic in my community.
Have you tried contacting a disability lawyer to see if you qualify for SSDI?
Hugs
Angela
Yes, I tried for 5 years with a disability lawyer, I had over 1,000 pages of medical records and two letters from my doctor, I kept getting denied, I went to court in front of a judge who’s final decision was to deny me, and the reasoning essentially came down to “because I’m young and can do basic things like brush my hair”. I’ve been trying to get a social worker through my hospital but so far they haven’t been able to find me one.
Unfortunately, I can certainly relate
I am very thankful to still be able to be fully self sufficient & productive
Because, all of this “health stuff” really did show me that I have no one around at all
My parents have & have had serious mental issues my whole life - I’m still married, but unfortunately our relationships didn’t get stronger from my health issues
I just wish us all the best
I’m sorry to hear about your struggle. But I’m grateful you are still independent. My only hope in life is to become independent and self sufficient, my words fear is never achieving those things. I hope my AVM doesn’t strip me of the chance to have those things. I’ll keep fighting.
I remember this sentiment coming out of my son’s mouth when he got numbness in his tongue as a consequence of his AVM to the point that he had to stop eating. He asked me in frustration what girl will take him when he’s so broken that he can’t even eat normally. Just broke my heart. As a parent is so frustrating not being able to help him. I feel your pain which is worse by you not having emotional support you deserve. We are here for you to vent because we all understand you. Blessings.
Blessings to you and your family as well. 
OMG!! I am laughing! that is so true! My spouse has had one for over 35 years and been married for 26 and I can still find no way to explain what still exists in her cervical region to this day, when I talk about it to people outside family they just give me blank stares, and I just find myself just giving up on the explanation, I almost wish I had a explanation board to hold up! LOL
Yeah at this point I just give the most basic simplified explanation that I can because even when I try to explain it in detail it doesn’t make a difference and after so many years it gets exhausting trying to explain it to so many people. Out of curiosity, was your wife able to get hers completely treated? I haven’t heard of very many people with avms that are located in or on the body that have been able to get them completely treated and not need further treatment and I am always searching for some glimmer of hope that maybe I won’t be dealing with these surgeries and symptoms forever lol.
Hi Moonglow, it’s been treated many times in past, maybe last embolism 15 years ago , it has grown bigger but to dangerous to do anything with , she just recently had surgery in Dec to install rods and screws to strengthen up the neck , her neck had been getting weaker and she was having trouble holding her head up straight with nerve shooting pain down arm, we a a rough couple of months but , incredibly she is almost back to normal being independent , I went back to work a month ago and she takes care of herself now , only thing we have to figure out now is driving, she got a new wheelchair before surgery and we will need to get the van/ chair lock installed so she can drive herself again. That costs like 6000$ I think, Just living the moment and enjoying life and we try to forget about that thing still in her neck the best we can , best wishes to ya.
I’m sending you both all my love and best wishes and hoping that she continues to recover 