Family events

I'm newish here still I guess, introduced myself last week and now seven days into Alan Gordon's Pain Recovery course. Diagnosed with CRPS in left knee. I'm retired from work and live alone.

The last week or so has been like a rollercoaster, more so than I can ever remember, quite drastic ups and downs, in mood mainly but also pain. Before that I was in a fairly bad flareup, and I'm sure it's due to finding out about TMS that I've had such good times in recent days as I have. My mood was really great earlier today but...

I just exchanged some text messages with my sister S who is my only close family now. There's a family event on Saturday, she's hosting a party for her eldest son's 40th birthday (which is hard to believe). I live in a small apartment with no parking so my car is parked about 200 yards away, which is a significant distance during flareups, and I might have to walk 100yds each way at the far end. I texted S that I was dubious about visiting on Saturday because I'd taken the car for a drive a couple of days ago, only getting out briefly to top up the air in a tyre, but regretted it when I felt the effects the next day. I also said I need to consider not just the knee but the effects on my mood. She replied she hoped I could make it, she was sure I'd enjoy it even if I only stayed an hour or so.

I didn't take that very well because I know she thinks I use the knee as an excuse, the real issue being social anxiety, so she ignored what I said about knee and mood. I just sent a thumbs up emoji. The thing is, there is a grain of truth there, I rarely ever looked forward to any party, and it's probably gotten worse since I've been relatively isolated, the past few years, and the way I live gives me very little to talk about. Most of the people who'll be there I rarely see and hardly know and I'll struggle to remember their names, and the house will be crowded. On the other hand, what I told her about that outing the other day was true, and my mood really did plunge due to the after-effects, it was only today that I felt fully recovered from it.

So, I don't know how to end this... what am I looking for? I guess, to be told I shouldn't worry what S or anyone else thinks but do what I feel is right for me. But I'm half-expecting to be told to be positive, man up and do the right thing. Well, maybe that should be quarter-expecting... I'll soon find out I guess...

Edit: I probably should say I know about outcome independence but feel I need a lot more practice (or any) actually doing it...

 

First of all, have confidence that you are doing great!! TMS recovery is often full of ups and downs. It can seem a bit of s wobbly trajectory, but all the challenges are a normal part of getting well. We have to learn to cope with life, and not hide from it to know we can manage. The important thing is to feel the emotions of all these struggles and not to hide from them. That lack of desire to feel, to be open to hurts and joys in life is what causes tms. Hiding from tms never stopped it from happening, did it?
I totally understand the self isolation but that’s a catch 22, and it’s part of the work that needs to be done. You don’t have to be a social butterfly, but you do need to realize that you hide because you are afraid of being emotionally hurt, and that is a great thing to explore by journalling (not really part of Alan Gordon’s program, but could be helpful for you). one of the great things my tms coach taught me was that social outings and connection are worth the future pain, and that you will eventually see a reduction in pain. Firstly, adjust your mindset to “what if I might do pretty well the next day!” -get your mind to stop expecting pain. This takes practice. A LOT of it. Next is to begin to change your perspective of everything being, what I call, your “plastic hassle”. The car is 200 yards away - you walked there and back the other day. You CAN do this. You might not like it -feel that plastic hassle! Get pissed off at it! Gut churning, hands clenched.. hot faced. Now simply accept that stuff bugs you. We often avoid anything that is going to make us emotional. Your job is to let your brain know that anger is ok, it comes and goes and you are just fine.
You mentioned your only close family relation is your sister. This party is important to her! You also wrote about all the stuff that will annoy you while you are there. Feelings of being flustered, embarrassed and shamed about forgetting names. FEEL that emotion! It’s ok to feel it! Shake a hand, smile and say “hello”. Just be true to you. You don’t need to put on a front. Instead of saying “good to see you” say “long time since I’ve seen you” or simply “how are you doing?” If people ask you the same thing, think of an honest, short answer. “Not feeling too great lately, but I’m working on it”. Defer questions by immediately deflecting “full house, isn’t it” or “where’s that cake and tea!” Be annoyed at that crowded place. Be willing and accepting that you are uncomfortable. It’s ok. Plus your sister gave you an out! Go early when it’s not crowded, stay for a short time. Tomorrow take a chill day! What’s a way to reward yourself? Good book? Movie? Chocolate? Hot bath? Do it. Congratulate, yourself for doing something difficult. For practicing what you are learning. For being supportive of your sister and nephew. Show your brain who you really are and that you don’t have to live in fear and anger. You can experience them for the brief moments they come and go as emotions.

 

Thanks a lot @Cactusflower, I see the wisdom in what you say there. I was feeling more positive about this event but what my sister said today, coming on top of a flareup, triggered an emotional reaction due to family history. I realise this will be an important occasion for her, but she will have the full support of her husband, both sons and both their families, so I don't think my presence or absence will mean that much to her. I've decided not to make the decision now but leave it open and live with that uncertainty while trying to face up to all aspects of the situation.

 

I've just been thinking about CRPS flareups and inflammation, and how that sort of thing doesn't seem to be addressed in any TMS material I've read/viewed so far. So I searched for inflammation in the forums. Everything I've found so far seems to be about whether TMS causes inflammation, but that's not my issue. My question is, what do I do when my knee is inflamed? I've heard that walking on an inflamed knee, over time, can cause arthritis, and that fits perfectly with my story. So I think I'm going to use that to make the decision about the event on Saturday.

 

@RobOptimist,

Stress causes inflammation. I've been saying this a LOT lately, because my knowledge about the inflammatory response is increasing as more and more is written about it in recent years. The connection between stress and inflammation is now known and recognized by the medical community - but I just read somewhere that the connection wasn't really recognized before 2000-something (and not until after Dr. Sarno had written his first three books). It's probably still not as widely known as it needs to be amongst all practicing medical professionals, along with full acceptance of the mindbody connection in general.

Inflammation is part of the immune response, and it is also part of the fight-or-flight response. When it becomes chronic, it leads to chronic disease, and to what we call TMS equivalents (and as I hope you know, TMS is just an acronym, and an outdated one at that - Dr. Sarno was apparently heard to say near the end of his career that it really ought to stand for "The Mindbody Syndrome" because the TMS brain mechanism affects so much more than muscle tissue).

I didn't know much about inflammation until I read a professional publication from Harvard Medical, lent to me by a nurse friend after I was diagnosed with RA in 2020. It explained the physiological process of inflammation (incredibly complex and technical!), the role of inflammation in many chronic diseases (the big four being heart disease, cancer, diabetes, and autoimmune), and the current treatments. The publication then addressed lifestyle changes. Stress reduction was either at the top or very near the top of the list (exercise and not smoking might have topped the list).

In other words, stress reduction is advised by the medical community for the management of diagnosable, measurable, and treatable (sort of) physiological conditions.

Now, if you've got a stress-based, TMS-equivalent, chronic inflammatory response like CRPS, which can't be detected by lab tests and is thus not qualified to be treated medically, you really only have one choice. You must reduce stress.

And of course, duh: exercise, eat whole foods, don't smoke, and cut out the sugar and the crap foods. Everyone knows those, and you certainly can't recover from a mindbody condition if you know you're disrespecting your own body.

"Stress" has a lot of definitions. Someone who is suffering is going to have added a whole layer of stress due to their symptoms, but that's an obvious, shallow source. Stress can certainly include "everyday" stress (eg maintaining long-term relationships). It can also be current/temporary stress (bad job or residence, lack of time or resources) and it almost always includes existential stress (fear of mortality, despair over world dysfunction) although this is often discounted (and it should not be).

Most people with chronic mindbody conditions have a combination of some or all of these sources of stress. HOWEVER: the first source of stress that needs to be addressed is the hidden stress of long-term emotional repression, often going back decades.

I'm pretty sure my sudden-onset RA was the result of an onslaught of current and existential stress due to a number of circumstances combined with the shutdowns in 2020, along with goodism and an inability to say NO, and above all due to not being mindful. The medical community (including the TMS MD that I consulted after my Dx) is apparently not yet ready to admit that stress can CAUSE autoimmune disorders, but I have no doubt. Dr Gabor Mate MD is one of the few willing to explain how stress and emotional repression can absolutely cause autoimmune disorders (When the Body Says No). Three years later, in spite of continuing existential stress (world dysfunction and aging) my rheumatologist is happy with my labs and I'm maintaining well on a low dose of the most standard medication for RA - I attribute this to my TMS knowledge and techniques, having done the emotional work in 2011 (and continuing to revisit it when needed). Saying NO and quitting two overwhelming volunteer activities helped. I'll be 72 next month.

Okay, I hope you're still with me @RobOptimist! For you, the bottom line is that you need to address your repressed emotions, which are the root cause of your social anxiety, health anxiety, catastrophizing, assuming the worst, making excuses for yourself by blaming others, and taking things personally which are probably not about you. If you have a family history which includes childhood trauma, you may need psychotherapy. Unfortunately, we often find that self-help resources like this forum only go so far for people with childhood trauma.

But I'm not sure you've taken any steps to try out our resources. A week ago @Cactusflower responded to your first post with links to our in-depth programs for "doing the work" as we call it here - there's no reason to put off starting one of these (probably the SEP, which is easier to get into for beginners). They are both free and don't require any kind of sign-up.

Your TMS brain will try to keep you from doing what you need to do, so you have to fight back, you even have to fight hard to do the exercises with real self-honesty. It's not easy to fight your resistant brain.

If you did in fact suffer from childhood adversity, I recommend that you answer the ten Yes/No questions in what is called the "ACEs test" and of course read the accompanying information - you can do that here: Take The ACE Quiz — And Learn What It Does And Doesn't Mean : Shots - Health News : NPR

Finally, please read Cactusflower's post (above) again - more than once! You could even copy it and break it up into paragraphs in order to absorb the different things she's saying, then print it out to read offline. She has provided you with a substantial amount of compassionate and relevant information and advice about where you appear to be right now.

Good luck,

~Jan

 

“I realise this will be an important occasion for her, but she will have the full support of her husband, both sons and both their families, so I don't think my presence or absence will mean that much to her.”

You my friend are short sheeting yourself. Of course you, her dearest brother will make a difference! You are close. She invited you because she wants you there!
The above quote is fear. It’s just your fear talking. You are not your fear!
A few months ago I had a job, supporting my friends. I thought I could back out if need be, they don’t know what I am going through, but they do know I have had challenges. I figured my being there didn’t matter much, someone else could fill in.
Was I wrong! Every member of their group hugged me and told me they were glad I could make it. It was hard! They sang songs that make me emotional, which I hate to be in front of others. It wasn’t easy but it meant a lot to them and ended up meaning a lot to me. I was in a lot of pain after that, not great for a few days but it was totally worth it!
This book is directly about CRPS and TMS it’s very cheap but only available on Amazon. Here’s a uk link: https://www.amazon.co.uk/gp/aw/d/1653507837/ref=tmm_pap_swatch_0?ie=UTF8&qid=1678321735&sr=8-1 (Amazon.co.uk)

Dr. Hanscom has a free podcast about the science of stress and inflammation:
https://www.berkindcomp.com/blog/treating-chronic-pain-dr-david-hanscom-season-4-episode-47

 

First I have to say, I can hardly believe the generosity of @Cactusflower and @JanAtheCPA in taking the time and trouble to write such long and thoughtful replies. I've been active in all sorts of internet forums since before there was a world wide web and I don't believe I've ever seen anything like this. You guys are saints! And here I am testing you again with more (much more) of my stuff... I feel a bit bad about it, but I also feel I have to take full advantage of this opportunity.

Regarding stress due to repression. I have a degree in psychology and later did an introductory course on psychotherapy for prospective therapists, as a result of which I spent three years in weekly psychodynamic therapy (I gave up on becoming a therapist myself). I've been a fairly obsessive self-analyst for most of my life, and I believe I now have a fairly clear and comprehensive understanding of my family background and how that affected me. I've meditated daily for over 40 years. Recently I ran across the concept of "fundamental wellbeing" and realised it was something I'd experienced several times. Just in the past few weeks, by meditating more, I've been able to spend time in it, with obvious (to me at least) benefits. In particular, my capacity for compassion has improved. I'm suddenly feeling empathy for strangers on the street (and tv) but also for my father, who previously took the blame for ruining my life. He had clear narcissistic tendencies but was also a very insecure and at times vulnerable man. That's an intellectual understanding, but what I felt for him the other day was deep and from the heart.

The point I'm trying to make is that I really believed I was close to conquering stress once and for all, then that exchange with my sister threw me! Suddenly I was back in all the old family/pain "they don't understand it, they don't care" turmoil. I had been contemplating this event much more positively, even wondering whether I might be able to rise entirely above anxiety while there. But I think it was the amount of pain I was having in the last few days that caused the first doubt as to whether I should go, then the thing with my sister yesterday really tipped the fat into the fire.

I have been disappointed that the recent improvements in my mental state have not resulted in less pain, in fact it's been getting very gradually worse for a while now, that's why I ended up here.

I'll take the ACE quiz, but at the moment I only remember one clearly traumatic childhood event (there were others in adulthood), and I believe my problems stem largely from a consistent ongoing lack of emotional support from either parent. I know now they did love my sister and myself, but actual signs of that at the time were few and far between, and physical demonstrations of affection were entirely absent, as far as I remember. I'd call my father emotionally unavailable, and my mother very insecure and preoccupied with her own issues (her mother died when she was four). He never hit me but often caused fear, which neither of them ever assuaged in any way. (I just thought, maybe that counts as ACE?)

I've been going through the Pain Recovery course for a week and I'm about half way through Tamara Gurin's book. I'll checkout Dr Hanscom's podcast. Unfortunately I don't have a lot of stamina these days and can only manage so much serious reading/listening (and writing!) each day.

I tend to think my main problem now is not stress but habitual fear. A book title that has stuck in my mind for years is "Feel the fear and do it anyway". I think maybe I can apply that now by refusing to let the approaching event disrupt my meditation practice any more than it already has.

By the way, I realised why I found @Cactusflower's first reply a bit odd. It was all about the event itself, whereas my concerns regarding pain and depression were all about the aftermath, the next few days, because my pain is always delayed, and sometimes the effect on my mood is quite devastating, because I tend to take it as a serious setback. That was my fault for not explaining properly, and I think the same thing was probably behind my sister's reaction. She rang this morning, mainly about something else, but was very considerate re Saturday, and I said I'd let her know.

Everyone who reads this far, thank you so much for your time!

 

Pain may be delayed, but that’s not actually that uncommon with TMS, because whether we’re aware of it or not we may be expecting the pain.. at some point. You mention fear and stress as if they are separate things or unrelated? The fear fight/flight response naturally creates stress, that’s its purpose, to energize us and make us aware of “danger”. You are merely stuck there.
As to feeling psychological awareness, I bet you are very well aware of your consciousness related to your family dynamics but there is often so much subconscious guck, simply because the subconscious can’t define old from new stress.. the great thing with TMS is it often doesn’t matter. Reducing overall stress can get your nervous system into a better spot. Fear is an excellent place to start. I think you are off to a great start doing the work, and doing it slowly is often best, along with the understanding that it has to be done with your heart, not just your intellect. That’s simply part of being willing to confront the fear of softening and opening enough to deal with not just the fear of pain but the fear of doing even more emotional work. You may have done a LOT of that already but I find that work can or needs to go “deeper” at times in our lives. It’s also not uncommon to move forward mentally/emotionally but feel more physical symptoms or vice versa. Patience and kindness to yourself on all levels, new levels as you go through all this is so valuable.
You are courageous to do all of this, make you you recognize your progress.

 

“He never hit me but often caused fear, which neither of them ever assuaged in any way. (I just thought, maybe that counts as ACE?”

I believe that counts. TMS is often perpetuated by fear, maybe even always.

My father caused a ton of fear and, like you, I had no one to soothe me. My brother and I were not close as kids, but we were very young when we stopped tattling on each other. We didn’t like to see the other in trouble with him. As adults we can see how our dad used manipulation to divide us.We have been close friends as adults.

I don’t know if you will relate to this, but here goes. My brother and I are in our 50’s. He lives near the beach in Southern California, I live in the “gloomy “ northwest. Over the years when I visit him and his wife I always have fun, with lots of laughs, and we treat each other well. I feel so emotionally well when I am there. I’ve thought it was because of the sunshine, visiting with people who love me etc. The vacationy feel of being there.

I recently realized I feel like that because of the wholeness of the relationship with a member of my immediate family. I don’t have that with my parents. In fact, we are both estranged from them. My brother is connected to the little girl who had so much fear and insecurity in a way that isn’t fearful or insecure. Maybe this is true for you and your sister, and I am not saying it is, I’m just suggesting that you think about it.

If this could be the case for your sister, then you being at her special occasions could be huge for her. My husband, kids and grands are my life, but my brother is a light from my broken past.

The other side is how does it feel to you when you are with your sister? Is there fear of being abandoned by her when she says something that you feel is dismissing your knee? Again, I don’t know if this is anything like your experience, your words triggered my feelings, but my words may not be relevant to you.

I’m glad you found the wiki, it is a wonderful place and I wish you well!
Lizzy

 

It's lovely to see you again @Lizzy, with your warm and wise advice!

~Jan

 

“I don't think my presence or absence will mean that much to her.”
To me, it’s a sign of low self esteem. You don’t think you are important enough to your sister. Now the questions are: is she important to you? Do you feel good in her company?
If so, let your negative self talk go! Feelings only last 90 seconds unless you have deep childhood trauma like abuse. It’s easier to face a fearful situation than living with the pain of regret. It might be the only occasion you will have to celebrate a meaningful event with your close ones. If I were you, I will feel grateful for being invited. You can also help her prepare for the party if you can. At least it would give you a purpose. If not, just planning to be there would give you something to look forward to even if you’re nervous. Taking it as a healthy challenge for your mind, body and soul may help. Going out of your comfort zone can only open new perspectives.
People are species wired in routine and that’s why when we feel something is wrong in our life, it’s a sign that we need a CHANGE. Your body is begging you to make that change!

 

Hi guys, sorry for not responding before now to your, as always, kind and thoughtful comments. Unfortunately I tend to obsess over internet discussions -- actually, over any kind of writing -- and this affects one me deeply, so it was causing real turmoil at a difficult time. It actually prevented me meditating for a couple of days. So with the event coming up on Saturday I didn't look in again after my last post on Thursday. I could have checked in on Sunday or Monday but I really didn't feel like it, don't know why.

I went to the event, half an hour early because I had something to discuss with my brother in law, and stayed a couple of hours. The knee was only slightly affected on Sat eve and Sun and by Mon was actually better than before the weekend. I decided to stop all pain meds, I think for the first time since the knee replacement six years ago this month.

@Cactusflower, yes I know fear and stress are closely related, when I said stress is not a problem now I meant stress due to repression, I should have made that clear. But on the old/new stress confusion, that seems like a very valuable insight, thank you for that and for the general encouragement too.

@Lizzy, I wish my sibling relationship was like yours! She is eight years younger, we have no other siblings, and having had my parents to myself for so long I was jealous of her in the first few years. Then I was a very difficult teenager (drugs etc) and I believe our parents encouraged her to be different from me in every way they could, anyway we ended up as adults having very little in common and for years didn't see much of each other. Over time things improved very slowly, until our parents began to decline, when we were forced to work together to support them and found we got on reasonably well. We still don't have much in common though. I feel ok when I'm with her but no more than that and I don't think there's any fear of abandonment. I just realised, all these years ago it was our parents, now it's her own family, but I'm still jealous of my sister! Thanks for your good wishes.

@Heavenly, see the previous para on my sister, however I have always had very low self esteem. As I say, I did go, and you're absolutely right on all these points.

@JanAtheCPA, I just did the ACE quiz and my score is just two, though I believe my mother could have been diagnosed with anxiety and/or depression, which would make it three.

Thanks again, all you lovely people!

 

Never overlook the fact that Ace’s can be subtle. I’m a 3-4 and by all means my childhood looked normal. It’s how those things affect you that is important. Equally, it is important to acknowledge and accept that you repress. We all do! It is normal. It is how much and how we react to this that causes internal stress.
The fact you mention you worry and ruminate -that’s a distraction from your emotions. If you tend to self-isolate, you avoid instances where you experience emotions others. Eventually this will come to you, and you will realize they are simply coping mechanisms you developed. It really does ease the mind to simply recognize and be open to our pre conceived notions of how we truly operate internally as opposed to how we think we do. I think that is beginning to happen for you, great job in dealing with the party!

 

@Cactusflower, you are right, it is starting to happen for me! I've been feeling so good the past couple of days I even thought of writing a success story! But I'll hold off a while yet, I've seen false dawns before, and 2-3 days is nothing after 6-7 years.