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My family doesn’t understand why I can’t just push through on bad days, and it makes me feel guilty for needing rest.
It’s hard for people to understand what they haven’t experienced.
Many people find this video helpful.
Hey Dan
Resting feels like wasting time, but pushing through makes everything worse. Damned if I do and damned if I don’t!!!
Karen
Thanks for sharing. Yes, it’s a tough balancing act.
The key is to find that groove where you can build some recovery progress and build up form there.
I’ve lost all motivation for recovering, I just don’t have the energy for it.
Sometimes we just need a break from it all!
Focus on doing whatever brings you a little joy.
When you are in a better headspace, listen to some of the recovery stories!
When I have a flare-up, I completely lose it! I am so over this ****[[edited]] – I try to stay calm but after so many years it just gets to me.
It’s not easy to accept the unacceptable!
Somewhere along the line we have to find acceptance that these things happen, and see if you can relax into the sensations rather then fighting them.
Not easy, but when you make a little success with this, it gets a lot easier to cope.
It looks like my wife and I are going to split – no relationship can sustain this. She doesn’t want to talk about anything.
It’s a sobering reality – not all relationships survive.
A good step forward can be to not discuss our illness with our partner as it becomes too much for them over time – instead find someone else to have the conversation with.
I feel so guilty about not doing things with my kids because I never feel well enough.
Thanks for sharing – yes many people feel like that.
There is nothing to feel guilty about, it’s not a choice to be sick! Be compassionate with yourself.
I’m starting to go a bit, very gently. I’m bumping into people I haven’t seen for 6 years. What do I say when they ask how I am? or where I have been? ‘Haven’t seen you for ages’ they say, maybe I don’t need to say anything?
I would suggest that indeed don’t get into that conversation, it doesn’t serve you.
Instead say you’ve been busy and focus the conversation onto something positive.
My biggest challenge is that I’ve found structural things going on with me (csf leak, IJVS) in addition to my dysautonomia. I still think doing the program can help in some ways, but not with the leak and a smushed internal jugular vein! Right now, I feel a bit defeated. But, I trust I’ll get back up.
It’s frustrating when we have things happening that feel out of our control.
Getting second opinions before any major steps and doing what you can to support yourself and reduce stress is key.
Trust you are doing better soon.
I did ANS Rewire in 2021. The course encouraged me to look into Lyme and mold. After being misdiagnosed with fibro/cfs for about a decade, I finally got some answers. Turned out that I was indeed dealing with Lyme and mold. It took a couple of years to tackle these issues, but I am now in remission from Lyme. I am pain-free, I wake up rested and refreshed, and I have energy to make it through the day. My challenge is building a social network after I have been so isolated due to illness. It’s like I forgot how to… Read more »
Great to hear you are doing better.
Yes it becomes a challenge to rebuild after we have been ill. My experience suggests focussing on engaging in activities rather then looking for ‘social network’ – the network comes out of joined passion for activities!
My biggest challenge right now is learning to walk again after a bad fall broke my right knee and left shoulder 4 months ago. I deal with daily pain, and much of my time is focused on physical therapy and various exercises. However, even with this challenge I feel more motivated and focused than ever on ans-rewire. I see how the program can only help with my physical healing from the fall as well as healing from the psychological trauma caused by the fall. (And I look forward to listening to the episode about working with pain.) It may take… Read more »
Sorry to hear that.
Yes, we have to address our whole life and all our health challenges – little steps, we don’t need to do things perfectly or completely, just enough to progress.
Hi Dan, nice to hear from you. You sure have come I long way since I met you in the early 2000’s in my early days of FMS/CFS. Congratulations on the success of your blog, well done. I was diagnosed with a new problem about three years ago Kryptopyroluria aka Pyrolle’s Disorder which I am still learning how to live with. Diet is my main problem, it is a genetic disorder of the liver wherein the liver doesn’t recognize zinc and spits it out, causing excess copper in the body – controlled by diet and zinc supplement. Still trying to… Read more »
Many people experience Pyrolle disorder – in my experience diet and supplementation can be very helpful when done with testing under the supervision of an experienced doctor. The key is supplementing appropriate levels for therapeutic changes and monitoring things to ensure you are not overdoing it.
IBS is not a separate illness – it’s ANS dysfunction – think of it as fibromyalgia of the digestive track.