It’s exactly like brain damage, Jen. My character completely changed and that was the first thing I actually noticed. October 2016 I would usually jump out of bed and make breakfast but I simply couldn’t be bothered. That laziness persisted and that morning head pressure became more constant. Then in March or May 2017 I had the acute ‘breakdown’ I described before.
Life can be overwhelming and especially now for the perfectionists in a world of Pinterest, Instagram and YouTube.
Wow. Wow. Less negativity please.
I have bounced back completely as my condition has eased.
Less emphasis on ‘damage’ please!
Apart from annoying tinnitus I’m bright as a button these days with zero medication.
I can only conclude that, whatever MAV actually is, it’s mostly (if not completely let’s see) reversible if you can get it under control.
That said I know exactly how you feel, Andy. But don’t let that lead you to the doomsday scenario conclusion. ‘Negative thoughts’ is a mental condition you get into and you need to fight it. I had professional counselling to help me with it. I was there for a long time but climbed out.
To find answers you have to be honest with your situation. Just because you have brain damage doesn’t mean you can’t bounce back to some degree. Everyone breaks down their bodies every minute of the day. I think no one is under the illusion that they function the same as they once did post MAV.
I appreciate positive thinking and people on this forum but there needs to be a fundamental layer of reality. The stats on recovery don’t look too chipper and specialists don’t sound so special but I’m still trying to help myself and in turn people here.
I felt the support right away when I posted. Initially I was thinking, I can’t be on tryo trypt, feel good and not share it with others who might be suffering. So it started as a “I’m great” not needing anything sort of approach but then somehow you guys managed to help me take another baby step in to some of my daily challenges and Wow I felt like finally there are others out there and I might be able to feel more confident in my MAV journey. And be able to work with it using a whole slew of new tools AND not try to describe it to my family when I have an episode. I kept trying to explain how it felt so someone could understand but it’s impossible to describe. Maybe I won’t have that need anymore.
Its so wonderful to be here. I had no idea, no idea the difference it would make. I’m not even suffering from any of it right now and I still feel like I’m able to go back and look around in my past and get support while I take that look. What happened, why, who am I, who have I become, is the new me ok, all of that stuff. I’m getting that chance so thank you from the bottom of my heart!
I really had to ask myself for the first time with my 1st episode - What part of my reactions to others were natural and how much were learned? If there is any ADHD or processing trouble etc are people trying to over compensate pushing through what feels so natural for others. What are the expectations we are giving ourselves and how much have we compared ourselves to others. I grew up in a smoke filled home, I was in 2 different car accidents so could that be it, who knows. My feeling is that I had insecurities about my cognitive abilities my whole life so I was hyper aware of how I was coming across to others, how I was received. I was able to see every little facial expression/body movement of others and I would try to make alterations on my end to create a flow. I think my true self said enough is enough with this nonsense and it shut me down. If it didn’t I might have ended up with life threatening issues. My sister is similar in how much she cares and she ended up an auto immune disease which turned into pulminary lymphoma. Reading your messages, it’s a whirlwind of information with your openness to everything and anything which I like because it seems to come naturally for you and if there is something I can’t explain or understand I think you could help me to figure it out so thank you for all your support. My supervisor and friend said I wasn’t the same and gave me the impression it was brain damage which was so upsetting at the time. It felt like I was permanently screwed up, all washed up, ready for pasture like an old horse! Some people see this. She is not my friend anymore but she was just sharing an emotional response to my inability to work like I once could. I wasn’t able to give quick punny responses anymore. The person she relied on was no longer there and she was upset. People in our lives are feeling loss. Our kids don’t have us all in to build a sand castle. Everything shifts and adjustments are made but we are being missed through it all. The really needy ones will dump us. The busy ones will wait ut we won’t see much if them and the ones who truly know we are silently suffering, will stick by showing their love in little ways that mean so much. Our animals are hands down the best though. I can tell you for sure Andy, is that what looked like my biggest losses in my life before this health challenge and after is that the business I was running was not healthy, the person I was married to at the time was definitely not right for me. There was so much I needed to change and once I did my whole life changed to the better. Nothing is permanent including what feels like brain damage. Our inner spirit will override what ever the brain thinks it can’t creating a challenge at first with a lot of time of self reflection. Trying new meds, recording food and environment variables all helps. With yoga you have to do a counter move to every move. Your brain ability is a beautiful thing so when it analyses things because its used to doing so much more with the screens you had to look at then you have to go opposite with maybe meditation of thinking absolutely nothing. Schedule yourself allowing your brain to work and then make a mental note to shut it down for a certain amount of hours in a day even using a timer if you have to. I also pushed myself to walk. At first it was hard because of atrophy but I pushed through it. Walking helped with the head pressure too.
He’s not being negative. He’s accepting his situation. You’ve been incredibly fortunate, James and we’re very happy for you. Some of us heal completely, many don’t and can’t under the current state of medical knowledge. I’ve had MAV since I can remember and always will. It’s baked in. It functions exactly like brain damage. That’s not negative, it’s real. It’s emotionally healthy to accept our situation for what it is. It helps rebuild our foundation so we can be stronger and better.
Actually looking from the position of advanced recovery allows me to see patterns of thought that I recognise I had at the time of intense suffering.
Turns out my thoughts of permanent damage were over-blown. It turns out recovery is possible and damage is not a forgone conclusion. In fact I don’t thing the doctors even speak of ‘damage’.
It’s not healthy or helpful for new sufferers to think of it as ‘damage’ imho
I disagree. Even if you manage to be in the lucky few who recover from an incident, it’s still like recovering from a closed head trauma.
For the rest of us this is a lifelong slog dictated by genetics. Honesty about that keeps you from chasing rainbows and snake oil and instead puts you on the path to maximizing your quality of life.
Where there is no hope there is usually more misery.
I am here to say that there is hope.
If you talk to psychotherapy professionals they will tell you to stop thinking negative thoughts. Easier said than done, of course, but that is part of the goal of such therapy.
One should also recognise that the negative thoughts are part of the condition and not just a reaction to it. So they should also be treated.
I totally get where you’re coming from especially New comers who are searching for answers. It could feel hopeless reading about brain damage or that it will never go away but I didn’t feel that when I read it. I am a newbie and when I came here I was searching for answers. I was the one who said someone looked at me and thought it was brain damage. I was able to share that. I love that you care so much and your name turnitaround tells me what angle you will approach things which is refreshing. I also know how I felt when I was heavily weighed down with this debilitating disability and if it didn’t go away for years I would be singing a different tune. It would be more direct pulling no punches. If it’s how a person feels then it’s true for them and I so appreciate that as a newbie as well. I can see that they can share that freely. I admire their ability to stay connected… so to the lifetime sufferers please feel free to share anything on my posts. I’m trying to be careful in the sense I don’t go on too much which I’ve already failed at!lol I’m going to try to shorten things up more.
Feel free to flow as it were. Helps to ensure you are on topic but as far as I am aware there’s no word limit. A few paragraphs could be useful though. You’ve obviously not suffered with screen sensitivity and Visual vertigo as part of your MAV package. Anyone that does finds huge hunks of solid text impossible to read and I would hate people to miss out.
Yes please. Long unbroken text is very uncomfortable even to the healthy.
This forum supports markdown, so you can even do things like:
More: Markdown Cheatsheet · adam-p/markdown-here Wiki · GitHub
I agree. I couldn’t finish reading the post. I tried, but my vision wouldn’t do it.
Acceptance doesn’t mean misery, it means freedom. Acceptance isn’t the opposite of hope. It is the strength from which you take your power. It is the opposite of misery. It is the positive response.
I don’t think we are arguing the same point.
Sorry about that. Thanks for your honesty!
We aren’t. I’m making a different point.