Caretaking, anticipatory grief and how to stop living in the future

[Patty Cakes]

Both massive pieces of progress! It happened like that for me also, the upper ends of the pain scale were removed, even though I still had consistent symptoms - I'm excited for you that it's following a similar path for you

Adam, I wanted to ask—since my pain has been following a similar path to yours and the upper ends (like 8 to 10) have really dropped off, are you ever truly pain-free, or do your symptoms still flare up during high-stress times like this?

 

[Margot!!]

Hi Patty! great work!!
I also have the nasty habit of searching for possible sources of stress and that inevitably leads me to trying to predict the future. I also noticed myself wanting to reach out to people who I know will be in turmoil, which would allow me to lose myself in someone's else's pain or maybe to feel helpful/useful. My beautiful brain doesn't know what to do when there is no stress or everything is handled. This behavior was the first thing I noticed when I started the Structured Education program.
FOr me I think my brain searches for those things to see if it's ok to relax, my brain asks "Am I safe" by doing this. When I engage in searching for stress, without fail, my brain finds something to be anxious about and the pain increases. It's difficult to manage sometimes because it starts unconsciously, but as I work with it, I become aware sooner. Then I can employ the techniques that @BloodMoon shared with you.
OH look at that, I am doing that thing again, stop it. (with self compassion) I say I am safe and I don't know what will happen in the future but right now I am grateful for ( then I list 3 things). That helps be get back to the present moment.
You have so much on your plate Patty, I'm glad you have found support here, all of those things you spoke about are really hard. Theres so much strength in you and I applaud you for doing this for yourself <3

 

[Patty Cakes]

Hi Patty! great work!!
I also have the nasty habit of searching for possible sources of stress and that inevitably leads me to trying to predict the future. I also noticed myself wanting to reach out to people who I know will be in turmoil, which would allow me to lose myself in someone's else's pain or maybe to feel helpful/useful. My beautiful brain doesn't know what to do when there is no stress or everything is handled. This behavior was the first thing I noticed when I started the Structured Education program.
FOr me I think my brain searches for those things to see if it's ok to relax, my brain asks "Am I safe" by doing this. When I engage in searching for stress, without fail, my brain finds something to be anxious about and the pain increases. It's difficult to manage sometimes because it starts unconsciously, but as I work with it, I become aware sooner. Then I can employ the techniques that @BloodMoon shared with you.
OH look at that, I am doing that thing again, stop it. (with self compassion) I say I am safe and I don't know what will happen in the future but right now I am grateful for ( then I list 3 things). That helps be get back to the present moment.
You have so much on your plate Patty, I'm glad you have found support here, all of those things you spoke about are really hard. Theres so much strength in you and I applaud you for doing this for yourself <3

Thank you so much for sharing that. I find it so difficult to relax and not worry about things too—I'm someone who needs order, needs to be prepared, and likes to try to predict the future. Our minds are so wired to stress about things that haven't even happened, and I know I do that a lot.

Have you read that Mind book yet? It has helped me realize that what I'm feeling is normal for so many people. My mind worries even when there may be nothing to worry about, and the more I try to force myself to think positively, the more stress I sometimes cause. When I have a conversation, I tend to replay it in my head instead of just letting it go. It's so hard to let go and say 'I'm safe' when my mind is spinning with thoughts.

For example, just today when I went to visit my husband Jeff, he mentioned, 'Geez, I hope I'm going to be able to walk again.' In an instant, my mind completely spiraled: Oh my god, I'd have to buy a $12,000 to $15,000 ramp for the yard. What if it snows and I can't shovel? How would he get to dialysis? How would he get into the bathroom, get into his recliner, or wash up if I can't pick him up? Downward I went into that panic, and right along with it, my pain flared up.

I'm learning to try to keep calm and not panic, even when my unconscious brain is thinking otherwise. When I talk about or face difficult things, my body remembers and the pain can flare right up.

Reading that book has helped me understand a bit more about how our minds process things. The chapters I've read show me there isn't anything wrong with me; it's just the way our brains are wired, and there are ways we can learn to calm that down. Life is so unpredictable, and for me, safety and security are everything—especially since the rug has felt pulled out from under me in those areas over the last couple of years.

Reading about the mind-body connection has really helped put unconscious thoughts into perspective. I'm still struggling and still learning, but understanding how our brain works helps us see what we're doing and find ways around it. My pain still flares, for sure, but the more we figure out our minds work, the better it will be.

 

[Margot!!]

OH PATTY!! That's so good to hear. I have a pretty good handle on the conscious thoughts, I can stop and replace w a positive version. However sometimes, I don't know I'm ruminating until I feel my body react. That's getting better too. Practice makes permanent.
I tend to read a few books at a time lol. I'm reading unlearn your pain and Hope and help for your nerves right now. I find that reading about the mind body connection and success stories really help when Im struggling. I feel like the education piece has been HUGE for me. My mind likes to know why, very curious.
YOU have alot on your plate! Alot for your beautiful brain process and organize. I wonder if part of it is simply having a normal reaction to a set of extraordinary demands. That list of stressors would make anyone worry about their future and ruminate on what could happen. Don't forget about self compassion <3

 

[Adam Coloretti (coach)]

Adam, I wanted to ask—since my pain has been following a similar path to yours and the upper ends (like 8 to 10) have really dropped off, are you ever truly pain-free, or do your symptoms still flare up during high-stress times like this?

So I would say my baseline is essentially a 0 or a 1 - I say a 1 because at my injury site there's still like this sort of pressure feeling, it's not painful, as if you were to lightly pinch your skin. When I get distracted with life I don't notice it or think about it, but I can find it if I do.

I don't even consider them flares but it can increase to about a 3 when I'm stressed, but I want to preface that by saying it's when I'm stressed and guilt/shame are involved (something I'm still working on). If I'm stressed without those being involved, it doesn't have any impact. Physical movement and positions have absolutely no impact on symptoms whatsoever. I can run, sit, walk, lift weights - it doesn't do anything anymore.

I've probably had two "flares" in the last 2 years (so one each year) where the pain might have jumped to a 6 (and that only lasted a day or two - this occurred where the guilt/shame were really ramped up - I don't see a 6/10 or higher anymore otherwise) - otherwise I live between a 0 and a 3 99% of the time

I don't want that to limit you though, keep in mind that I work on this field, so if attention is a part of it then I'm thinking about TMS in some capacity almost every hour of the day. I don't think that will necessarily stop my progress, but if you were creating ideal conditions to heal the remaining portion and you had a choice between coaching and not, I'd probably choose the latter (but it's not bad enough for me to be too bothered).

 

[Patty Cakes]

So I would say my baseline is essentially a 0 or a 1 - I say a 1 because at my injury site there's still like this sort of pressure feeling, it's not painful, as if you were to lightly pinch your skin. When I get distracted with life I don't notice it or think about it, but I can find it if I do.

I don't even consider them flares but it can increase to about a 3 when I'm stressed, but I want to preface that by saying it's when I'm stressed and guilt/shame are involved (something I'm still working on). If I'm stressed without those being involved, it doesn't have any impact. Physical movement and positions have absolutely no impact on symptoms whatsoever. I can run, sit, walk, lift weights - it doesn't do anything anymore.

I've probably had two "flares" in the last 2 years (so one each year) where the pain might have jumped to a 6 (and that only lasted a day or two - this occurred where the guilt/shame were really ramped up - I don't see a 6/10 or higher anymore otherwise) - otherwise I live between a 0 and a 3 99% of the time

I don't want that to limit you though, keep in mind that I work on this field, so if attention is a part of it then I'm thinking about TMS in some capacity almost every hour of the day. I don't think that will necessarily stop my progress, but if you were creating ideal conditions to heal the remaining portion and you had a choice between coaching and not, I'd probably choose the latter (but it's not bad enough for me to be too bothered).

Thanks for sharing that.
In regards to the words guilt and shame--is having my words disregarded and feeling invisible, for example, in the rehab center—when the staff looked right past me and praised Jeff while dismissing my reality—the same thing as feeling shame? I guess I associate the word shame with perhaps a child who wet their pants in school, in front of other children and might feel shame in that.

 

[Adam Coloretti (coach)]

In regards to the words guilt and shame--is having my words disregarded and feeling invisible, for example, in the rehab center—when the staff looked right past me and praised Jeff while dismissing my reality—the same thing as feeling shame?

It can be if you blame yourself. If you hold/validate the anger and that doesn't lead to self-judgment/a reflection on you then I don't think it would lead to shame, but if in your head you're saying (after the initial anger) - "that's happened before and has happened consistently throughout my life, there must be something wrong with me", then it can lead to unnecessary guilt and shame.

 

[Patty Cakes]

It can be if you blame yourself. If you hold/validate the anger and that doesn't lead to self-judgment/a reflection on you then I don't think it would lead to shame, but if in your head you're saying (after the initial anger) - "that's happened before and has happened consistently throughout my life, there must be something wrong with me", then it can lead to unnecessary guilt and shame.

I did had a profound realization recently, and I never thought I had shame. However, while working through the book "Rewire your Mind" and looking closely at my daily reactions, I realized something huge. So many of my reactions—whether it's dealing with a frustrating phone call, a store clerk, or feeling dismissed—are wrapped up in intense frustration. But I'm starting to see that perhaps my frustration has been acting like a shield, hiding the deep shame underneath: the old, painful wound of not being heard, of being disrespected, or feeling completely invisible. Seeing this shield for what it is has been a huge eye-opener for me. Is the frustration I often feel, really just shame? I never really saw it as that until I started looking at my daily reactions. Do you think I am still reacting from those deep childhood wounds, even though I'm a grown adult? Because whenever I feel that frustration, my body flares up in pain, especially my right side.

 

[Adam Coloretti (coach)]

Do you think I am still reacting from those deep childhood wounds, even though I'm a grown adult?

Highly likely, it's very common and most of us do so to an extent.

But I'm starting to see that perhaps my frustration has been acting like a shield, hiding the deep shame underneath: the old, painful wound of not being heard, of being disrespected, or feeling completely invisible.

To me it is probably hiding the intense sadness and grief at a core - holding your inner child and allowing her to feel that without self-judgment and shame I think is key. By pushing those feelings away, you probably (subconsciously) blamed yourself and internally just thought "well I deserved that because of who I am" but now that you are appreciating that as a lie - you didn't deserve that and you deserved better - you can allow those feelings with self-compassion and make different decisions in the present day to the best of your ability

 

[Patty Cakes]

Highly likely, it's very common and most of us do so to an extent.



To me it is probably hiding the intense sadness and grief at a core - holding your inner child and allowing her to feel that without self-judgment and shame I think is key. By pushing those feelings away, you probably (subconsciously) blamed yourself and internally just thought "well I deserved that because of who I am" but now that you are appreciating that as a lie - you didn't deserve that and you deserved better - you can allow those feelings with self-compassion and make different decisions in the present day to the best of your ability

Thank you so much for your insight.