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AVM Survivors Network

Help - It's Hard to Need Help

#1

I was going to respond to the post, but for some reason it won’t let me. So, this post is a response to Help, I Need Somebody, Not Just Anybody. Help Needed!. Dick, Merl or any of the other moderators, if I didn’t link that right, please correct it and let me know what I should have done so I can learn.

The post I tried to link to was a very thoughtful and well laid out assessment of the whole issue of needing help. I want to make one thing perfectly clear…

I fail at admitting that I need help.

Quite badly.

I will have no problem going to the doctor for a medical issue, but admitting that my brain is overwhelmed and I can’t process the details that I used to know (of things like paying bills, remembering kids schedules, things like that) or physical things like admitting that I shouldn’t be climbing ladders and I can’t take the dogs for a walk because I would probably fall. I suck at admitting that.

I want to be the guy I used to be. The guy who could bring home more than enough money so that we could live comfortably. The guy who could multi-task with the best of them. The guy who won free trips for job performance. The guy who played a key role in raising $250,000 in 90 days so the orphanage my kids came from could build a home rather than seeing their rent double about every other year.

I want to be that guy. That guy didn’t need help. Or not very much help. And that guy’s wife could be a full time mom and a part time nurse. And she would be much happier than she is now.

But I’m not that guy any more. I can’t multi-task like I used to. I used to love to talk on the phone, now I cringe when the phone rings. I used to remember names from 10 years ago very well. Now I can’t remember the names of someone I met last year - or someone who lived with us for 6 months when she moved back from Haiti.

I need help but I don’t want help. I need to accept my weaknesses and accept that they are going to be long term (if not permanent). I need to learn how to deal with them so they are opportunities to get help before they cause bigger problems.

And I need to figure out how to get my family to realize that I’m not missing these things because I’m lazy or I spend too much time watching TV or whatever. I need help because I can’t do everything I used to.

Okay, confession time over, now the questions:

  1. How do you come to terms with the limits you have and the help you need? 6 months into it, I thought I was doing okay with learning to come to terms with it. 14 months in, I think I’m not doing so well.

  2. How do you help those around you realize that even though you look normal, you aren’t? If I showed you pictures of me from the summer of 2017 and now, I would look similar (a little less hair, a little more weight but…). But I am not the same person. I mean, yes, I am the same person, but that person can’t do and think and process the same things the same way.

  3. How do you deal with it when someone close to you gets really upset because you didn’t follow through on things that you normally should (like making sure the kids did their homework while Mom was at work). #askingforafriend #hah

  4. How do you explain that one of the reasons you need help is because it feels like someone is tapping on your head with a rubber mallet? All the time- sometimes it’s a little kid tapping nicely. Some times it’s your obnoxious younger brother from when he was in middle school and sometimes it’s the obnoxious neighbor next door. Varying speed, varying strength, varying pain, but always knocking…

That knocking wears me out and makes it so hard to think - and that’s only one of the symptoms that messes with me.

I need help. And I need help figuring out how to need help - the right help.

Wow, this went in a different way than I planned. Sorry for being so long winded…

TJ

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#2

TJ

You did great with the linking. I saw the link at the bottom of the other post and here I am!

You have a really difficult situation that is beyond my experience but I’m always keen to help people across the road, so here goes.

  1. Coming to terms. I think the first part of this is admitting it. I’ve got people in my family who have gone through the depression mill properly; I’ve only skidded through it, really; and the thing I’ve noticed is they kinda had to hit rock bottom before it properly hit home that denying it and trying to muddle through wasn’t getting them through. Its a complete rotter but it is a big thing and you’ve got to admit the need for help.

  2. I don’t know how you do this bit. The only thing I can think of is to maintain great communication. My wife & I promise each other that when we are finding the other difficult or doing the wrong thing, we shouldn’t let the pain or misunderstanding go on but we should talk to the other person about it. Our theory is that most marriages that fail do so because people stop talking to each other and seeking to understand each other. So, for those who are likely to forgive you a bit, talk to them. For those less close to you, tell them but they may be less forgiving (or more forgiving if they have to cope with you less often!) It’s a difficult one for sure.

  3. See above no 2 plus apologising. Would making a list work? Otherwise, all standard issue husbands mess up on this, so far as I know. I have to remind myself to do more household things when my wife is finding life rather busy. I’m not in the house-husband role but it is clear some days that she has gone too far in the day and despite the fact I may be worn out too, I have to plod on and get chores done without seeking support. Its just about sharing. So you need to remind yourself, somehow. And you’re both probably done for by the end of the day – it’s just normal, I think!

  4. No idea. You’re well in a different zone than me there. I go back to talking about it.

The main thing I think is no 1. Knowing you need some support and that you’re not managing ok without some support is the big step. I know you’ve got the attention of more professionals than you’ve got fingers but it sounds like you need to talk to someone about how to cope.

Hope some of this helps. And you’re always on my mind, just like a bunch of others round here :slight_smile:

Richard

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#3

I deal with same feelings…not sure there are any easy answers…

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#4

I have re-read your comment several times…your feelings are so similar to mine it brings tears to my eyes… I would never wish this situation on anyone but there is comfort knowing I’m not the only person dealing with these feelings.

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#5

Thanks for your thoughtful and thought-provoking response, TJ127. The piece that you responded to went out to every Ben’s Friends member on forty-some communities showing TJ1 (not TJ127!) as the poster. While that’s technically who launched it into cyberspace, the actual piece was written by one of our ModSupport team, Merl: it’s straight, and straight from the heart, isn’t it? Just like Merl himself, as a matter of fact!

Our big error was not attributing it to him. Sorry, Merl. These mass “news” emails are something new that we are trying, hoping to generate interest and community activity. As with anything new, mistakes and oversights happen and this is one. Apologies to our friend Merl, who really put his heart and soul into that, and it sure does show!

We’re thinking about asking some of our members from various communities to contribute too. You can guess where my thoughts are going!

All the best to you, TJ127, and everyone here on AVMSurvivors

Seenie

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#6

TJ, I’m going to give you one guys, and you are in a different situation than me and I won’t pretend to understand. The first step in getting help is realizing that help is needed and it is by no means a sign of weakness to seek help. I view it as a sign of strength. I sought help post AVM bleed as Id come to realize this. It actually had nothing to do with my AVM but a long career of being involved in some things that one can’t unsee. Before my AVM bleed I probably thought I was too tough for that, or that it was a sign of weakness, that was incredibly naive on my behalf.

I have commented a number of times on the invisible injury. The first few months after my bleed I felt like wrapping my head in a bandage so people knew I was injured, and not able to do what I used to do. There is no easy answer and I have a large space in my heart for those suffering with mental health challenges and the majority thinking they’re fine, because they look fine. I view the challenge as trying to get those that matter to at east partially understand and well the rest can think whatever they wish.

You are an honest up front guy, that is clear in your posts, and that is a quality that may help others to realize some of the challenges. No one will ever completely understand except for you. Telling those closest helped me very much and my kids saw their dad cry for the first time in explaining some of this, some of my challenges.

I have become king of the list! I loose my list from time to time which is a setback and probably should be making a spare and keeping that in my pocket. I don’t think I would accomplish anything without a list.

Not sure if this is helpful, but I know you’ve had a tough go. I sure appreciate you as a friend to all of us here! Take Care, John.

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#7

Richard,

I’ll answer more in a separate comment - but just to reassure you, I have a psychiatrist and a counselor in my corner. I do a lot of “talking” with my counselor by e-mail and this post is based on discussions he and I have had.

We have talked at length about how this component of the grief is not a one and done type of thing. It’s an up and down thing. An on and off thing. And it’s not something that everyone goes through at the same time, speed and interval.

So we keep talking and working and sometimes crying and occasionally smiling.

And we do as Dory says, “Just keep swimming.”

TJ

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#8

Hey TJ,
‘Wow, this went in a different way than I planned. Sorry for being so long winded…’
Don’t you dare be apologising, DON’T YOU DARE!!!
Acknowledging it all is damn confronting for anybody, me included, and at times I still ignore it and try to push on through, which is silly really when I know I can’t. “I use to be able too, so why can’t I now”. It took me a long time to get some sort of ‘acceptance’. I use to berate myself for that loss of ability, as if I have control of my new limitations. None of us are ‘here’ by choice, so why do we think we are in control of it all??? And if you ever find the answer to that, tell me how.

This route is not a straight line from A to B. That ‘acceptance’ thing I talk about fluctuates. Some days it’s easy, some days it’s impossible and that’s where my anger comes from. I’m not angry with others, I’m angry with myself. “WHY CAN"T I?”. For me pain can be my biggest contributing factor But that pain can fluctuate massively from location to intensity to cause to remedy and they can all impact and vary my inner loathing. If I over did it yesterday I know why I feel awful today and I can accept it a bit better. I often look and go ‘Ohh well, self inflicted’ but I got the task done, so that’s a plus. What REALLY gets to me is when I look back but can’t see why. ie “I didn’t do anything yesterday, I slept well last night, so why do I feel like shit today” and that’s frustrating, which ends up being a vicious circle. I take medication to deal with the pain, sometimes it works and works well, sometimes it doesn’t. WHY? More frustration and it all adds up until my cup overfloweth.

OK, I’m going to say it and some people will hate me for doing so but here goes…
We, males are dumb. We have a self expectation that can be unreasonable. It’s not ALL our own fault. There is a societal expectation placed on males to be strong, to be resilient, to over cover adversity but then when we can’t we berate ourselves for it. Do we choose to be here, to have a disability? Of course not. Do we choose to have our abilities limited? No way. So why do we think, we are in control, it’s pretty damn obvious we’re not. So then comes that damn awful word “Acceptance” and this was/is one of my biggest stumbling blocks. HOW do I accept ‘THIS’? and this is a daily battle.
Initially, I had an internal rage with myself for not achieving my self imposed goals. I didn’t want to accept I couldn’t. To me that was acceptance of failure or defeat. NEVER. This was where I needed help. I had tried to do it all myself but I couldn’t see past that point. It was shown to me that I needed to accept my own limits. My limits had changed, it wasn’t that I couldn’t do things, I just couldn’t do things at the same level as before and for me I found this a bit easier to accept. Started putting things in place to make the processes a bit easier, ie lists to remember things, alarms as reminders and timers on activities so I didn’t over do it and pay for that in pain. Tasks got done, but over time rather than the whole task in one session. I had to learn pacing, to pace my activity, to manage better.
Hey, I’m not saying I’m 100% successful. But I can ‘accept’ a little better than I did. I’m not as harsh on myself as I was. “There’s always tomorrow” has become a bit of a motto and my lists keep me on track to get the tasks completed. I can now congratulate myself for what I have achieved today, rather than being annoyed for what I failed to complete.

TJ you talk about long winded, Jeez, I just read back through that above.
Now, THAT’S LONGWINDED LOL LOL LOL LOL.

Merl from the Moderator Support Team

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#9

Merl,

I so badly want to _______ for that but after you got after me for doing that. I thought I better not. But thank you for making me smile tonight. I appreciate it.

I sit here tonight, everyone else is in bed - but I know if I went to bed before my meds kick in and without some “no noise” time (I don’t count the noise of my keyboard as noise), if I went to bed without that, I’d lay in bed with my head pounding and feeling sorry for myself. So, me and my writing and the dogs (one of which has camped out on my recliner with me.

Stay strong everyone, even when staying strong means saying, “I can’t and I need help.”

Cheers,

TJ

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#10

John, I think the second part of your first statement is actually first.

First, we need to be able to and willing to admit that you have to be stronger to realize you can’t do it all than you do to continue bluffing and acting like you know everything.

Someone who knows themselves and understands what they are capable of and what they are not capable of is a LOT stronger than someone who lives life trying to keep up with something they can’t be.

And if only we could all believe and remember that - and teach those we love and who love us that as well.

And now it’s time to call it a day and once again say how grateful I am for this place and all of you.

TJ

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#11

Seenie, One of the things I’m finding is that while I can’t talk as well as I used to (apparently if your vocal cord is paralyzed, that makes it hard), and there’s a number of other things that are challenges, I’m finding that if I have a device with the right size screen for my eyes, I’ve been blessed to still have the ability and the passion to write.

So, if you have some thoughts about “things” - let’s talk sometime.

TJ

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#12

Sorry, You’re going through a difficult time, it something most of us had to deal with regardless if we wanted to. I find the hardest thing is convincing family members that you are not the same as you used to be. Family members ignore me constantly because they feel I’m not living up to who I’m suppose to be. Some times you just have to deal with it just as best as you can. I’m sending best of wishes to you & your family.

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#13

Hi TJ:
First of all, I’m pulling for you pal. But I must confess, I think multi-tasking is overrated. And I think there is evidence that it’s not all that effective/efficient. Plus, I just stink at it.
You hit on one of the quirks about having AVM residuals (mostly grand mal seizures for me.) We don’t meet the “quacks like a duck” test. I look normal, act (relatively) normal most of the time, admit my shortcomings as best I can, but…I’m not “normal.”
I can be sailing along, making progress in lots of areas, initiating healthy habits and then have a seizure that takes all of the wind out of my emotional sails. What just a day ago looked fine, now seems to portend gloom. A relationship I thought was blossoming has somehow evaporated. I am even having trouble convincing myself that I’m lovable.
Ok, enough of that tack. I know post-dictal states can last for days. There’s no predicting in my case. I wish you didn’t have to deal w/ that knocking sound in your head TJ. That’s a rough one. I’ve taken a couple of long row-boat rides and being around water seems to have a salutary/therapeutic effect. Also, I can sometimes get insights and clarity just travelling to a body of water.
As far as asking for help pal… You stink at it. I stink at it. But we know at our age that things take practice.
The problem is that darn “quack test.” The scenario: “Hi sir/madam, I know I don’t look or act like I need help, but I really do. If you are sensing some hanging back or misgivings, it is because I don’t like feeling this darn helpless. Also, under even the best circumstances, it is hard to talk about this stuff.” (That’s a hypothetical dialogue with someone that I know cares a bit about me.)
If you can improve on that TJ and use it in your own mind or on others, go for it.
Hang in there, Greg

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