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AVM Survivors Network

"Now that's a tuffy"


#1

There used to be a muffler chain around the midwest (USA for those of you who are elsewhere) called “Tuffy Mufflers.” They ran a series of commercials for years that always ended with “now that’s a tuffy” and showed someone being ridiculously happy because their old run down, broken rusted car looked like new because it had a new muffler on it.

But that’s also a good saying for when things don’t make sense. And that’s what I’ve got going on right now. Yesterday and today were some of the highest pain and highest “off balance” days that I’ve had in probably three weeks. It didn’t stop me, but it sure did slow me down. It didn’t knock me off my feet, but it’s a good thing we have handrails on our stairs or I would have done a couple of face plants. :frowning:

I’ve been asking myself, why? What’s up that’s different? And I haven’t really come up with an answer until I started writing this. Yesterday, on our way to a doctor’s appt with my son (long story not pertinent) we found out he forgot to check and was supposed to be at work - so flew home after the appt, grabbed work clothes and he changed in the car. Consequently I had to pick him up at 10 and didn’t get to sleep until around 12:30 about an hour and a half later than usual.

Last night, I had to go to a school open house at my daughter’s school. I graduated from that school, it’s a very good middle class white private Christian School. We used to fit that mold. Then we went from having all white kids in our family to having 3 white and 2 black (Haitian) kids in our family. So I had to go talk to and chit chat with all of the people who like to pretend that everything is going great and post all of their great vacation pictures on Facebook. High stress.

Tomorrow morning I meet with the people at the local hospital’s balance center to see if they can do anything to help with the balance issues. I’m worried they won’t.

Next Wednesday we go to the University of Michigan for a 2nd opinion from their experts.

I guess now I know why my head has felt like it’s been ready to explode the last two days.

From the bottom of my heart, thank you for being here and helping me figure it out.

Tom

P.S. And I mean that in all seriousness. I would not have written this on Facebook - and then I might not have seen it. So here’s to you!


#2

stress is not our friend. when I get stressed or over-whelmed I get dizzy and off balance until I can get calmed down and un-clutter my brain.
stay strong…day by day…step by step!


#3

Hey Tom,
I have to agree with Mike “Stress is not our friend” and finding that balance has been one of my biggest issues. I know there are tasks that need to be done and for a while I tried to do them all but found that when I did that I would end up bedbound. If I pushed myself I could complete the desired tasks in a day BUT, then I paid for it for the next 3 days in agony or had other symptoms like your balance problem. My pet hate became the word ‘pacing’, I had to learn to pace myself and this was so very foreign.
I used to have 2 speeds, full tilt and stopped. Accepting that I can no longer do things at full speed has been devastating, but I have no choice but to accept. I must admit that now that my responsibilities have been minimised finding time for ‘me’ has not been such an issue.
Tom, having family responsibilities makes the whole process of pacing even more difficult, but a word of warning, if you don’t manage things it will eventually all catch up with you and take it from me, that is not what you want or need. I explain it like this “my body gives me warnings “Laydown or I’ll put you down” and if I don’t listen it puts me down HARD”, sounds to me that you are getting those warnings. So my advise 'Listen to your body, it will tell you, but only if you listen". I had to learn all of those subtle signals and manage them appropriately, usually with rest.

Merl from the Moderator Support Team


#4

Yeah, I’ve never been real good at listening to those warnings. I’m learning to plan space in my day. Mental space, physical space, quiet space. We’re a work in progess, that’s for sure…


#5

I was never a good listener either (especially to my own little voices), it was actually my wife who made it quite clear to me that I had to stop doing what I was doing. She could see that although I was getting things done, the personal cost to me was massive. She could see that I was driving myself further and further into the ground by trying to do too much, too soon. My thinking wasn’t that I needed to get everything done in one day but more that I needed to keep myself occupied doing something, anything. I found that if I sit and think about my predicament I can end up going down a deep dark hole of what I call ‘The poor me’s’ and this just drives me nuts. So to keep myself occupied elsewhere I had lists of stuff to do.
Through the wife’s words and observations I could identify exactly what she was talking about. I couldn’t (or didn’t want to) see it for myself. I can be my own worst enemy at times. I am harder on myself than anybody else could ever be, often berating myself for being a lazy sod. The fact that I no longer could did not equate, my attitude was “I could before, so I can now…” but the reality was far different and she showed me this fact. I hated it, absolutely hated it but it’s a reality I had no choice in. I had to accept it. I do still today push myself a bit more than I probably should, but Ive become a bit more aware of those little signs my body sends me.
We most certainly are “…a work in progress…” without a doubt.

Merl from the Moderator Support Team


#6

as you mentioned; as hard as it can be, we must listen to our brains and not let life and our egos get in the way. when I ignore my brain it will put me down hard…for a week or two…


#7

Ouch - a week or two - mine hasn’t done that long yet. Typically when it slows me down it’s increased pain, blurry vision, more off balance and absolutely no energy or ability to focus. I’d love to know what others see when their brain is telling them to slow down?

Related to that - our minister - tall, “39” year old black man who loves to play basketball blew out his knee last year and then 3 weeks after surgery fell and blew it out again and was essentially bed ridden for 6 months. He said as part of his sermon once that he is convince that God said to him, “So, you think it’s all about you huh? So you think you can keep going this fast and not take time to just be with me? We’ll see about that” Morale of the story, “If you don’t slow down and listen to God, God will slow you down and he just might use a basketball to do it!”


#8

I have similar issues when my brain knocks me down.
blurry vision the inability to focus, dizziness, balance issues and if I really push it tremors in my limbs and brain auras.
As my wife told me the last time I pushed it; you know your limits…, you’d be well advised to stay within them because if you push it any further you don’t know what’s going to happen.


#9

Well said. I wear a wrist guard and compression sleeve on my left arm except when I’m showering or sleeping because I would have too much in terms of tremors in that arm already. But yeah, it does get worse otherwise. I’m hiding out in the local library in the corner - me, my computer and classical piano music playing softly on my headphones. I can still hear my head but it definitely helps. I’m not ready to move away from all people though…


#10

I’m enjoying all of the advice & encouragement in this thread but I want to say something and ask something.

  1. Not related to my AVM but perhaps as my outlook has matured over time, I have become a most egalitarian fellow. I treat everyone the same, or at least my outlook is that I do, I will and I hope I actually do. The idea of mixing with types who do not have such a view and where there is some competition to be somehow perfect when compared to other people is surely only a stress if you believe for some reason in the importance of that out-doing of one’s neighbour. I’d have hoped you might just laugh at people who are stuck in that rut of believing that they have to be at least as good, if not better, than the next person.

I have to be honest, such people do exist, as do people who lord it over you because they have some higher status (let’s say a politician, which is where I’ve seen this play out) or higher pay or otherwise believe they should be treated better than someone else. I try to show people their stupidity in lording it over me, even at work. That’s how much I rail against the stress of pretending to be something you’re not.

Don’t accept / allow / admit the stress. (By admit, I mean let in).

  1. What’s a muffler when it relates to a car? I’m assuming it might be the “silencer” / back box of the exhaust but I’m not sure! Two nations, divided in their common language! :wink:

Tom,

Hope you do better soon. I completely agree with the others.

Lots of love,

Richard


#11

Richard - yes, a muffler is the part that silences the exhaust. LOL

Oh and you are absolutely right - I have no desire to be like them, the way I look at it is this way. At least around here, when it rains in the summer it will bring out swarms and swarms of mosquitoes. Annoying itchy little buggers that bite and cause all kinds of problems. I don’t want to be like them. And I don’t want to be by them.

Make sense?

:slight_smile:


#12

I had an English professor in college who, if you had used the term egalitarian would have broken out into a broad smile and paused the conversation to enjoy the word and said, “Now that’s a $64 word on a $4 day, let us stop and enjoy it.” He’d pause.

And then we’d continue discussing Milton or Shakespeare or Frost or whoever.

He was my favorite teacher ever.


#13

Thank Goodness! You had me worried for a moment.

Some days I should show more support / priority to those at work who get paid more than me :slight_smile: