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  #61  
Old 05-24-18, 10:11 AM
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Re: Here's how this sh- works

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Originally Posted by acdc01 View Post
I agree with this. Her responses on this thread need rephrasing in order to not be offensive. And her overall idea that she would know what we could do better than we know our own selves is offensive. That she, not even a doctor and a complete stranger to us, can know that every single one of us can overcome our struggles - well that's wrong.

But I also agree with psycho and Lunacie. LyrinMeow first brought up the subject that sounded like "try harder" before she even made this thread. She unfortunately touched on a subject that many of us are sensitive to as we'd been told that our entire lives and no matter how hard we tried couldn't improve. Someone did need to tell her how her words impacted others then. But the way it was done. It was just as Lunacie and psycho said. We were the ones who first reacted with anger and in a way that a newcomer might very well think we were ganging on her. And now people are trying to correct that.

LyrinMeow, I hope you feel welcome on this thread. I for one would not hold one topic we disagree on against you.

That said, I really wish you could see how some of the things you have said doesn't help but actually is very hurtful to others.
re the bolding above:

For me, it was a matter of no matter how hard I tried,
it was never enough to please others.

Even when I was sure I was making some headway
and showing improvement
they were never big enough changes to get any recognition of my efforts.
I still wasn't trying "hard enough" to satisfy others.

They couldn't see how hard I really was trying.


I agree with tudorose that we felt insulted and the natural reaction was anger.

No one enjoys being insulted.
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  #62  
Old 05-24-18, 03:42 PM
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Re: Here's how this sh- works

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Originally Posted by Lunacie View Post
Even when I was sure I was making some headway
and showing improvement
they were never big enough changes to get any recognition of my efforts.
This.
This has crushed me time and again in life.
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  #63  
Old 05-24-18, 04:29 PM
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Re: Here's how this sh- works

Quote:
Originally Posted by Lunacie View Post
re the bolding above:

For me, it was a matter of no matter how hard I tried,
it was never enough to please others.

Even when I was sure I was making some headway
and showing improvement
they were never big enough changes to get any recognition of my efforts.
I still wasn't trying "hard enough" to satisfy others.

They couldn't see how hard I really was trying.


I agree with tudorose that we felt insulted and the natural reaction was anger.

No one enjoys being insulted.
Oh I never got handed an award for my efforts.

I've heard all the suck it ups you can think of. In fact I was told that I was worthless WHILE I was improving. I learned that doesn't work. Motion works. Moving works. Changing works. I suck it up when I'm 4.5k into my 5k. Not when I'm battling my own head.

You're not fighting for THEM anyway. You are fighting for YOU. Hell fight just to spite me. I don't care. Whatever reason works for you.
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  #64  
Old 05-24-18, 04:41 PM
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Re: Here's how this sh- works

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Originally Posted by Lunacie View Post
We stayed in a hotel over Christmas with those plush foam topped mattresses.
I could not sleep on it. I could not roll over on it. I could not get up from it.
I was hurting. I unfolded the hideabed sleeper and did okay on that.

At home I have a heavy piece of plywood between the box springs and the
mattress, and a good foam topper on top of that. That's what works for me.

After 40 years of this back pain because no doctor ever ordered an xray, last
week I had a spinal steroid epidural. I can roll over in bed with no pain, but it
still hurts like a mother if I stand or walk for more than 5 minutes. Thinking
about getting a second shot to see if it improves a little more and trying pilates.

I take all my pills and supplements first thing in the morning. I simply cannot
remember to do it twice a day. I don't even remember to do it each morning.

I can't wear a heavy coat, or heavy shoes, or carry a heavy purse. If I have
more than 10 coins in my wallet in my pocket it's too heavy for me. I couldn't
carry my daughter or grandkids, they had go in a stroller. And my grandkids
only weighed 5 pounds for the first 2 months.

Life is a spectrum. It's awesome when we find someone who shares the same
quirks we do, but we are still different in other ways.
I've always had problems with muscle spasms but it was like 4 years ago when my lower back got bad. And then the skydiving thing made it worse.

I had about 6 of the steroid injections and a nerve block. Didn't do **** for me. I couldn't stand long enough to get groceries a year ago. And all the doctors had given up on me. And I told them, "If you can tell me that fighting through the pain will improve me instead of harm me then I will fight through the pain". They said no. Doctor 3 said yes. And he was right. I still have twinges and sometimes I have that distinctive nerve pain down my leg if I stand for too long but most days are good.

My firm mattress sent me right back to PT. Walmart was kinda mad when I came in to return an entire mattress. It came in a little box all contained and vacuumed. It did not reenter that way.

Omg, you sound like my son. He even hates clothes. Would run around naked if I let him. Everything is too heavy for him. He complains about his back pack too. And he's extremely sensitive to hot water and light. That's why I haven't had him try the blanket because I don't think it's his thing. I should probably give him a go at it though. He might like it. But he better like it if I buy it for him. They are not cheap.

And I love my little 12 lb lap blanket at work. I always have it in my lap. Today I had on my lap blanket, was hugging a cat pillow someone got me for Secret Santa at work, while I was leaning over my desk watching tutorials.
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  #65  
Old 05-24-18, 06:11 PM
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Re: Here's how this sh- works

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Originally Posted by LyrinMeow View Post
You're not fighting for THEM anyway. You are fighting for YOU.
Yup. When I was trying and fighting to be seen as equals to my siblings it was the wrong reason.

Now I fight for me and cut the people out of my life who are not constructive. I've made more progress with this since being off meds.

I've had more success with fighting fibro since doing what's right for me. And learning to accept what I can't change and that I can't control everything.
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  #66  
Old 05-24-18, 06:12 PM
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Re: Here's how this sh- works

Quote:
Originally Posted by LyrinMeow View Post
Oh I never got handed an award for my efforts.

I've heard all the suck it ups you can think of. In fact I was told that I was worthless WHILE I was improving. I learned that doesn't work. Motion works. Moving works. Changing works. I suck it up when I'm 4.5k into my 5k. Not when I'm battling my own head.

You're not fighting for THEM anyway. You are fighting for YOU. Hell fight just to spite me. I don't care. Whatever reason works for you.
I don't think any of us are actually looking to get an award.

We just want others to stop telling us we're not trying

when they can't even see the inner struggle and effort we are making.

When they don't believe us when we say we ARE trying as hard as we can.


It's hard to make that mental decision to do things for ourselves,

to only care about making ourselves proud and happy - and screw others -

when we spent our childhood being told we were lazy and stupid

by our parents, our siblings, our teachers, sometimes our friend's parents.

How do we get over needing that support and encouragement and validation

from those who are important to us?



Quote:
Originally Posted by LyrinMeow View Post
I've always had problems with muscle spasms but it was like 4 years ago when my lower back got bad. And then the skydiving thing made it worse.

I had about 6 of the steroid injections and a nerve block. Didn't do **** for me. I couldn't stand long enough to get groceries a year ago. And all the doctors had given up on me. And I told them, "If you can tell me that fighting through the pain will improve me instead of harm me then I will fight through the pain". They said no. Doctor 3 said yes. And he was right. I still have twinges and sometimes I have that distinctive nerve pain down my leg if I stand for too long but most days are good.

My firm mattress sent me right back to PT. Walmart was kinda mad when I came in to return an entire mattress. It came in a little box all contained and vacuumed. It did not reenter that way.

Omg, you sound like my son. He even hates clothes. Would run around naked if I let him. Everything is too heavy for him. He complains about his back pack too. And he's extremely sensitive to hot water and light. That's why I haven't had him try the blanket because I don't think it's his thing. I should probably give him a go at it though. He might like it. But he better like it if I buy it for him. They are not cheap.

And I love my little 12 lb lap blanket at work. I always have it in my lap. Today I had on my lap blanket, was hugging a cat pillow someone got me for Secret Santa at work, while I was leaning over my desk watching tutorials.
Dunno how old your son is, but by high school my adhd granddaughter

was having to bring home several of her textbooks and notebooks and such

every day in order to do her homework. That bag was very-very heavy.

And she has inherited the back problems from my family.

She was seeing a physical therapist in high school to work on her back.

She fell down in her shower in her apartment a couple of months ago

and simply laid there with back spasms for nearly 2 hours

until her roommate got home.

(need to get her one of the phones with voice recognition so she can holler
at it to call someone to help her in case it ever happens again)

She takes muscle relaxants so she can deal with going to work. She's only 20.


Haven't you used the electric shopping carts?

After the initial embarrassment, I love being able to shop for what I want

instead of only whatever my adult daughter brings home.

We like a lot of the same things, but there are some she doesn't want to look at.

If you don't need one anymore, that's great. I'm hoping for that day to come.

The first epidural did help noticibly, but I wasn't expecting to go from 8 on the

pain scale to only 2 or 3, not after 40 years of degeneration and no treatment.

It has helped my daughter with her back pain and neck pain.


Huggles to your son. Driving some days is a nightmare for me with the sunlight

reflecting off car windows and trim and it feels like it's stabbing me in the eye.

It's so bright and distracting that I find it difficult to see anything else.
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  #67  
Old 05-24-18, 06:31 PM
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Re: Here's how this sh- works

I actually did get stuck in a shower once. Was washing my back and my shoulder seized up on me. I had to yell for help.

Thankfully only one of my disks seems to be degenerated. And it's not causing that much of an issue at this point.

I could never use one of those carts. Oh, I'd feel horrible. And I look younger than I am. Grocery store here has been doing order online and pickup so I just did that. Only costs 5 bucks. I still do it but now it's because I'm lazy.

Quote:
I've had more success with fighting fibro since doing what's right for me. And learning to accept what I can't change and that I can't control everything.
Honestly the best thing I do for my fibro is hot yoga. I really wouldn't be able to take it. Gabapentin not only doesn't work on me it makes me f-ing stupid. I can't follow a simple conversation. I had to have my team lead explain something to me 4 TIMES. It was horrific. Let alone trying to get my work done. Moving seems like the opposite of progress if you're dealing with fibro but it does actually help if you haven't already started an exercise of your choice. Actually I'd also suggest trying a sauna. Might have the same effect. I did some very basic tai chi for a bit as well. NOT as easy as it looks. My rheumatologist suggested water aerobics because it's low impact.

I just never f-ing listen and go find the most hardcore thing I could do and do that instead.
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  #68  
Old 05-24-18, 06:41 PM
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Re: Here's how this sh- works

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Originally Posted by LyrinMeow View Post
Honestly the best thing I do for my fibro is hot yoga. I really wouldn't be able to take it. Gabapentin not only doesn't work on me it makes me f-ing stupid. I can't follow a simple conversation. I had to have my team lead explain something to me 4 TIMES. It was horrific. Let alone trying to get my work done. Moving seems like the opposite of progress if you're dealing with fibro but it does actually help if you haven't already started an exercise of your choice. Actually I'd also suggest trying a sauna. Might have the same effect. I did some very basic tai chi for a bit as well. NOT as easy as it looks. My rheumatologist suggested water aerobics because it's low impact.

I just never f-ing listen and go find the most hardcore thing I could do and do that instead.
I have found getting the heart rate up to 150 to 160 bpm helps. I was told that you have to treat a fibro body like a cement truck. If you stop it sets. I ride on the bike trainer and race cyclocross. If there is time then kayak fishing. Anything to get that heart rate up. Last race my max HR was 178bpm with average of 171bpm for 30 mins. I didn't feel so great after that though. 160bpm average feels better.

I can't do low impact too boring. I can see how sauna could help. Sweat out toxins.
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  #69  
Old 05-24-18, 06:52 PM
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Re: Here's how this sh- works

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Originally Posted by tudorose View Post
I have found getting the heart rate up to 150 to 160 bpm helps. I was told that you have to treat a fibro body like a cement truck. If you stop it sets. I ride on the bike trainer and race cyclocross. If there is time then kayak fishing. Anything to get that heart rate up. Last race my max HR was 178bpm with average of 171bpm for 30 mins. I didn't feel so great after that though. 160bpm average feels better.

I can't do low impact too boring. I can see how sauna could help. Sweat out toxins.
I need a fitbit that does the heart rate. I did get rejected at the work Red Cross blood drive for having a pulse over 100. Then next day I came back and had to meditate for about 15 minutes and I JUST made it under the 100 mark.

Last November I could barely grab my calves. Now I can put my palms on the floor in a forward bend.

The heat is great for relaxing muscles. Granted I also drip sweat during class and by the end I'm exhausted. I push really hard though. There is something about pushing it just that much further. Probably just the endorphins talking.
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Old 05-24-18, 07:07 PM
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Re: Here's how this sh- works

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I need a fitbit that does the heart rate. I did get rejected at the work Red Cross blood drive for having a pulse over 100. Then next day I came back and had to meditate for about 15 minutes and I JUST made it under the 100 mark.

Last November I could barely grab my calves. Now I can put my palms on the floor in a forward bend.

The heat is great for relaxing muscles. Granted I also drip sweat during class and by the end I'm exhausted. I push really hard though. There is something about pushing it just that much further. Probably just the endorphins talking.
I need to do more stretching.

Would recommend garmin watch that tracks your activity for when you do trails and kayaking.

Link it to Strava. Then you can see how you're getting stronger. And if you have active friends it's a positive social network. You can join challenges and it adds a bit more fun.

I don't have a garmin watch but i have the bike computer as I do more on that than anything.

I got my resting HR down from 100bpm to between 75 and 85 by getting my HR up more in exercise - the irony.
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Old 05-24-18, 07:36 PM
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Re: Here's how this sh- works

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I need to do more stretching.

Would recommend garmin watch that tracks your activity for when you do trails and kayaking.

Link it to Strava. Then you can see how you're getting stronger. And if you have active friends it's a positive social network. You can join challenges and it adds a bit more fun.

I don't have a garmin watch but i have the bike computer as I do more on that than anything.

I got my resting HR down from 100bpm to between 75 and 85 by getting my HR up more in exercise - the irony.
I have the Fitbit Flex 2 because it was cheap and waterproof in case I get dunked in Lake Erie out on a paddle. (First trip I went on my friend ate sh- 5 minutes in. I laughed so hard. I'm such an a**hole) Has not happened to me yet *fingers crossed*. Sadly it does not recognize rowing or kayaking.

We partner with a "health" company at work. My Fitbit tracks my steps and I get points for that sh-. Just got myself a new yoga towel and a new pair of yoga pants with gift cards I got through points. But they have events and such. Right now I'm on a team for 100 days of steps. They have 4 levels and you can get up to like 30 or 35 dollars a pay (biweekly) off your health insurance. I can submit my yoga classes as a "gym exercise" but they consider kayaking a "light workout". Clearly these people don't kayak.

Yoga stretches things you didn't even know you had. Highly recommend even basic yoga to people. Yoga has something else involved that I can't really explain. It brings a kind of... peace? It exhausts me mentally and physically. I think post yoga and pretty intense meditation are the only times my brain shuts up. Whatever it is, you have to do it to get it.
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Old 05-24-18, 07:50 PM
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Re: Here's how this sh- works

Kayaking light workout! Hahahaha

Sounds like you have a good system with fitbit and work.

My pdoc suggested moving meditation. I guess that's what yoga is.
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Old 05-24-18, 08:14 PM
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Re: Here's how this sh- works

People will also do moving meditation as taking a walk, usually in a natural
wooded area trail/hiking kinda deal. I haven't tried it yet but I've heard good things.

But yes yoga is like a mindfulness meditation. You are focused entirely on what you are doing. Especially in hot yoga that takes a lot of focus and determination. Like when your teacher decides to make you do 5 rounds of boat pose. F- boat pose. Sh- hurts.



It may take a little more focus to get into a gentle yoga class but I recall it having the same/similar effect on my brain.
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Old 05-24-18, 08:21 PM
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Re: Here's how this sh- works

There's a class at the gym that me and DH are gonna try next week.
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Old 05-24-18, 08:39 PM
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Re: Here's how this sh- works

Let me know how that goes.

I'm looking to start an adult ballet class in late June. I already did the hip hop class. Now I can body roll both forwards and backwards. For all those times in life you just need to body roll. Like, while being introduced to your son's first date.

The ballet class requires pink leather ballet shoes. Do I look like I wear pink shoes? I guess I do now. Supposed to be excellent for the core. I'll let you know how that goes.
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