Adjusting to unrestricted life

Hi all,

I'm interested in your thoughts on transitioning from living in pain, fear and with many restrictions, to suddenly living a 'normal' life where you don't think about pain.

I'm reminded of the film The Shawshank Redemption, when at the end a man is released from jail after being there for 50 years. He's made a life for himself inside the jail and when he is released he is directionless and confused. The world has changed a lot and he can't relate to it, having been away for so long. Eventually he commits suicide.

I feel like, while life without pain (or at least without fear of pain, initially) is fantastic, it will bring with it some confusion, choices and just general shock.

What challenges did you face and how did you overcome them? Especially for those of you who were in pain a very long time, or whose recovery was very fast, how did this sudden change affect you?

Thanks.

 

I have the same sort of fear. I try to imagine a normal happy life and I just feel really lost. I just can't imagine what it would be like. I have no desires and no dreams. I feel like all I know is living a life of constant challenge, and living an easy life seems strange. I don't know what the point to anything would be. I don't know if this is the same as what you're thinking, whirlingdervish, or if your thoughts are a little different. I know that finding hobbies and things I enjoy is supposed to help, but I already do that and I still feel lost.

I think getting some good answers to this thread might help with motivation.

 

Hi Camera,
I'm in the lucky position that before I was in pain I had a number of things I was passionate about doing, and while I've been in pain I've developed another few things I'm passionate about that I could do despite being in pain (it took a long time to find them!) Plus doing all the emotional digging has led to a few more things that I'm passionate about that I'd forgotten about, or had thought I wasn't good enough for, etc.
So for me it's more about having too many passions rather than none.
But I can very much relate to your fear of not having any desires and dreams - that is how I felt when the pain first reached the point that I started shutting things out of my life. It was horrible.

 

This is hard to reply to, how to get passionate about life and have desires and dreams.
Maybe since nothing else has helped, look into being more spiritual. For many people,
the Bible opens up new lives of meaning for them.

 

Camera, I know what you mean about finding hobbies you enjoy not being enough - I did that a lot and took up loads of new activities, which were all vaguely enjoyable but I didn't feel passionate about any of them. For me, what helped spur new passions was thinking back on all the things I had been passionate about throughout my life, which reminded me of aspects of my personality that I had forgotten existed (or supressed), and dreams that I'd never been able to pursue for whatever reason. I also changed job, which helped because I really disliked my old job, and found my new one inspired me to learn new skills. Beyond that it was about breaking out of a low self esteem cycle and being willing to go outside my comfort zone. Now I'm back to the way I used to be, of having too many passions and not enough time. Good luck!
Walt, I appreciate your suggestions to Camera. I'd also be interested in your thoughts on the broader question of transitioning out of a pain-filled life to a 'normal' one. Did you find it involved any challenges (apart from the treatment process itself)?

 

Thanks for your replies, Walt and whirlingdervish. I do think low self esteem plays a part in things. There's things I have in my imagination that I could do with my life but I feel like they're difficult to achieve. Other than that, all my passions from previous parts of my life have died off.

Walt, in case you missed it, take a look at whirlingdervish's question to you in his message before this. I was worried that I may have been distracting everyone from her question, so I wanted to point that out!

 

Whirlingdervish,

I think you ask a very important question, and one I have struggled with. I was in pain and had chronic fatigue for over 20 years, and my life became structured around that reality. Over the course of that time, I developed many coping strategies that became habits and my standard way of life. However, my recovery has not been quick. I've been at it for about 18 months, and while I am mostly pain free, I still have problems with fatigue and a few other TMS equivalents. So my road to recovery is still not complete. So over the 18 months I've had time to gradually change my lifestyle to include more things I used to do. Still I sometimes find myself doing something (or not doing something) out of habit instead of need. So I've tried to act mindfully and question my reasons for behaving a certain way--is this habit or is it a current need? In this way I've taken change one step at a time. It's a process of unlearning old ways of behaving, thinking, and feeling that aren't useful anymore, and building new ways. It is hard work at times, and I can see how it would feel overwhelming if you thought you had to accomplish it all at once. But there is no reason not to take it one step (one change) at a time, whether your recovery is fast or slow.

I like this quote from Eckhart Tolle: "As long as you make an identity for yourself out of pain, you cannot be free of it."

 

Thanks for sharing Ellen! I found your response helpful and encouraging.

Yeah, this has been something I have been thinking about. I've realised that so much of my life has been adjusted due to my pain and health issues. For instance, I currently work and study part time. I also work at a job that involves standing up mostly and moving around, because I first started getting TMS while working a desk job and continued having problems while typing/using computers.

I've reduced or eliminated the majority of group social activities, because they are too tiring or difficult to get to. I stopped driving because of my TMS pain, which has led me to catch the bus and completely changed my lifestyle.

I started thinking to myself, how would I change my life if I had no pain or health issues any more? What would I do? The thought was a bit overwhelming, as I've almost forgotten what it's like to be without pain and fatigue. Would I get a new job? Would I study full time? I'm currently doing a correspondence course, so if I wanted to do the course in person I would have to move to another city.

However, I agree with Ellen that the best thing is to make one change at a time. I'm learning to take it slowly, because even positive changes can be stressful.

 

This topic reminds me of a story my Yoga teacher told us to kill time while the class was in downward dog. It was about a crippled girl on crutches taken to a tent revival show by her mother in hopes of a miracle. The faith healer laid on hands, and told the little girl to drop her crutches. Miraculously, she was able to stand on her own, and ran across the stage to her mother crying. Her mother asked why she was crying, the little girl said, "It feels so scary."

 

Miracles can be scary when they come true, but I risk being scared.
Jesus said "Ask and you shall receive," and I don't think he meant to scare us.

 

This is a great discussion and one that I'm in the middle of. I am celebrating an official year of being in TMS recovery and I'm delighted to say that I'm pain free. For 3 years, any kind of social activity - well anything was precluded with "Well am I going to be able to handle the pain while in this situation?" I pulled back from a lot of things, physically and socially. Once I got into the recovery work though, I learned to keep moving through it - do the activities even though it was annoying and distracting to have the pain. These days my confidence is returning that I will be able to enjoy things without pain. I can get in the car without pain, which makes me want to GET in the car more often! I can go to a play and not be distracted with pain. I can exercise and only have the pain of the effort. And I just sent in a check for a 6 week class having fun with voice and singing. I wouldn't even have considered it because the TMS had me beaten down. I think the most important thing for me was to not get too far ahead of myself in terms of what I wanted to do "when" the TMS pain was gone... but to focus on the day and how I could enjoy it in the best possible way. Sometimes it meant being kind and compassionate with myself when I was in pain, sometimes it meant doing something anyway, sometimes it meant spending an hour journalling trying to get to the bottom of my discomfort. One day at a time, I learned how to live and heal TMS. And I did it by staying close to this forum. Reading all the books suggested and doing the work. Learning to be kind and loving to myself really was the ticket to healing. And when I come from that place, passion for all sorts of things start popping up. Change is definitely scary but I'm so grateful to have this change of a pain free body to deal with than the point of just starting this journey. I sure don't know what I would have done without the people on this forum!

 

Great responses. When I was in pain I never used to think 'this is what I'll do when I'm no longer in pain'. I just made me feel depressed, given I didn't know there would even be a time that I'd be better. I was also in denial a bit at how unenjoyable my life was - I wanted to pretend the life could be perfectly fine even with lots of pain. Talking about a future pain free life being better than my current life seemed to be admitting defeat, admitting that pain actually does make life less enjoyable. And therefore letting it 'win'. Or something.

But, it means now I feel completely lost! And it has come about all rather quickly. Most of my pain is subsiding rapidly and even where it remains, the fear of it has gone more or less. So it's hard to 'take it slow'.

Walt, your advice is good, embrace the change and don't feel scared by it I still feel that on some level my pain has been caused by having been overwhelmed with choice and anxiety about what to do with life, so I do think I will need to address this issue at some point, I can't just repress it again...

 

Great thread! I'm in the same place, it's almost like I don't know what to do with all the time I have that I used to spend worrying about my TMS. Then I feel guilty for not making the most of my time. I had let go of all my passions for life and am now left with only knowing how to worry about others and suppress me... It's a weird place to be in and can be a vicious cycle of expectation, disappointment and guilt. It's definitely been and unexpected part of TMS recovery.

 

One of the most helpful quotes I read was to aim "to be content in your circumstances, but not with your circumstances". I may not be content to stay with my TMS symptoms, but I can make the most of each day and try to live in the moment.