Crohn's Disease & TMS - Inflammation vs. Oxygen Deprivation

I feel like you are being WAY too hard on yourself. Very hard indeed. I know what dealing with debilitating pain is like (forget the causes right now) and it is horrific and endless and rubs away at everything: joy, hope, enjoyment, plans, ambitions, and simple day to day things that others take for granted. Whatever reasons (and the reasons you say sound right, that the system gets triggered - but I have no idea) the first thing to say is dealing with the actual pain and symptoms is unbelievably hard and waring and grinding down. If not desperate at times, as we know (and as I certainly felt in moments: truly desperate). So first I want to correct you: you are an incredibly strong, brave person who every day is waking up and dealing with this - and wanting it to be different. And trying so many different things. What courage and perseverance. I understand the self criticism and disappointment that somehow you are part of where you are now, and how awful that feels. But that is just another stick to beat yourself with. You are also the person who is trying and wanting things to be different, who is examining your life and habits and physical patterns and being willing to look again, and be open. Not everyone is. I have huge admiration for you. The other thing that strikes me reading what you have put (and this is from my meditation approach which as I say has - over many years - helped a lot) is that: yes, you are right, you will 'never truly silence the inner voice of the ambitious achiever etc ' because trying to silence anything will never work. What you resist, persists! And the approach I am talking about is one where instead of hearing that voice and fighting it, hating it, trying to change it, being 'good' maybe for a day and then it coming back... we instead see the truth which is that our true selves are a much, much bigger 'room' that this, and that from there, we can listen to that other voice in one corner perhaps (rather than identifying 100% with it), and observe, and accept it is there and see what it says and does. And also be interested in what else is there? Because if you are listening to and watching that voice... then who are you? You are not it. That room is big, and if we go beyond the 'self' that is that voice, there is so much more in there. There is a place where you don't need to try, where you feel enough as you are, and where you trust that everything and anything can be different and change. Because it can. I truly believe that it doesn't matter how long things have felt one way (how many years or decades) there is always, always the chance for change, new, hope. I am not saying meditation leads to all this! But I am saying that maybe change begins with not identifying with all you say from that voice here, and exploring a different way. Less trying to 'get' well and more being right in the moment we are in, and starting from now, right now, to listen to the overachiever and also the self criticiser and realise that none of those is truly you. There are many books that have helped me, but I don't want to put them all down unless of interest. Also, the more I have gone on, the more it has become a kind of spiritual approach in that I know incredible change can happen if we can get out of our heads more and into our hearts. I know this may sound flakey for some. But I believe it, and I think the change is in world terms not just health. But I've gone on enough! I send you all the very best and just know that (a) you are amazing for what you have lived through and coped with and tried and (b) change is absolutely possible, not because you can change those thoughts (we all have them - even buddhist monks!) but because you are not those thoughts, and there is so much more beyond them - and that is the start of something else.. It is something exciting and full of possibiility about who we are. Mindfulness/Meditation is a long journey, and again the point is not to silence the thoughts! You never will. It is to start to listen to them / observe, as to someone else going on (your more insecure, stressed little brother maybe?) and to get interested in this bigger different self that is not that. Because healing lies here or many different kinds. I hope this is in any way helpful and send very supportive thoughts.

 

Yeah, being too hard on myself is kind of my thing. It's the root of it all, actually. Unfortunately, just being aware of that isn't enough to eliminate the chain reaction. I can remind myself of all I have to be grateful for every hour of every day, and all I've accomplished in spite of long odds. Sometimes I can be in the moment & try to be positive about the future, but the reality of where I'm at overshadows it all. The weight of trying to fix it all - professional, financial, social, etc. I'm again trying to work full time so that I can retain my independence, but that independence has also come at a price. It's impossible to accept that I can't do it all... live alone, work at the computer (the only work I can do, but is also destroying me) manage a household, look after a pet, and just keep clean clothes on my back & food in my belly... get to doctor's appointments & battle the insurance company... Those things consume 110% of my energy, and most of the time it feels like there's just nothing left to dedicate to the goals that matter... and now it just feels like it's too late, which is an awful way to feel, regardless of how rational it may be. A lot of the time I feel like all I need is just a little good luck, but then the Universe kicks me in the teeth again. It's hard to feel optimistic after spending the last 48 hours in bed with a bowel obstruction. My #1 goal right now should be solid food. Thanks for the encouraging words all the same

 

It sounds like it is a big thing of it all. But you can't 'stop' it with mind, or with effort, or trying - I do know this (have experienced this). Because that works and then all those thoughts come crowding back. And then to have to deal with such hard physical things on top. What if you could maybe take a different path, of just allowing what is, and accepting as you are... moment by moment, and see where that leads. If everything else has led to here and has not helped enough, maybe you can try a more letting go approach.. The book that got me into that is a biggy - Jon Kabat Zim Full Catastrophe Living. A friend sent it to me when I was flat on my back in pain for month after month. It's all about pain, and mindfulness. And from there, I started to go to a drop in meditation class.. and from there read and practice other things, all of which lead to a more trusting, letting go way, where that voice of your mind is quietened (that voice which is very hard! Imagine if a friend talked to you like that - would you want them around?). And maybe that openess and trusting and just accepting might lead to a little luck coming in... Maybe it can't get in with that noise of your mind. I know none of this may be helpful but I want to send anyway, in case (I am only sharing because of what has helped and I would hate to sound like I am 'telling' anything as who can do that for another human being? We can only share and then leave it to be helpful or not). And also - if none of that is relevant - I so want to say this: it is not and never is too late, for anything at all in life. (OK if you want to be a brain surgeon etc but I mean: for life to start feeling different). It's not too late! For some reason this statement makes me think of my sister who has all her life felt overweight and not attractive. When she was in her teens she felt this and it had a big impact. And then, when she was in her 20s she looked back at old photos and felt 'wow I actually looked pretty good!' but I look terrible now. And then this happened again and again each decade (I have witnessed it). When is the moment when she says: maybe I will enjoy how I look right now in my 50s because soon I will be in my 60s, looking back at pictures now and thinking: you were pretty OK in your 50s!. A silly example maybe, but what I mean is, you don't have to repeat cycles. Now can be the time that you let go - even in a tiny way - of that very hard voice you have that is so hard on yourself and hard on what you have experienced, and allow that maybe things can be different. It may mean letting go of all sorts of things you think you are, think you should achieve, your goals and so on.. And maybe that doesn't matter? Maybe being here enough and accepting where you are, in the present, in this wonderful/painful, beautiful/heart breaking world is enough for now. And a start to something different. I do hope something in this is helpful, even if it's just annoying to have someone write! And that makes clear what you yourself thin. I mean it from the best place. All the very best.

 

This may not chime for you as she writes about lonely and not the things we are talking about, but still I love this poem and it might help someone on here sometime. Mary Oliver's poem Wild Geese (and she suffered a lot):

You do not have to be good.
You do not have to walk on your knees
for a hundred miles through the desert repenting.
You only have to let the soft animal of your body
love what it loves.
Tell me about despair, yours, and I will tell you mine.
Meanwhile the world goes on.
Meanwhile the sun and the clear pebbles of the rain
are moving across the landscapes,
over the prairies and the deep trees,
the mountains and the rivers.
Meanwhile the wild geese, high in the clean blue air,
are heading home again.
Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting -
over and over announcing your place
in the family of things.