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I can survive chronic pain, but how do I live with it forever?

Posted by hannahmccoy19 @hannahmccoy19, Sep 9 9:44am

I’m 19 and I’ve lived with chronic pain for about 6 years. I have fibromyalgia and CRPS, and lately I’ve been struggling with the idea that there may not really be an “end” to this.

I can still be happy. There are so many things I love, people I care about, places I want to see, and little things that genuinely make life feel worth living. I’m actually happiest when I’m able to take life one day at a time, slow mornings, rest when I need it, doing things at my own pace.

But the problem is that the rest of life doesn’t always allow that. I’m in university. Eventually I need to work and support myself. There are appointments, responsibilities, relationships, finances, and all the normal demands of being a person. Whenever I try to keep up with a “normal” life, my body seems to make me pay for it.

One of the strangest parts of being chronically ill this young is that sometimes I feel like I’m already living the life of an elderly person. I literally take some of the same medications my grandparents were taking in their 90s, and I find myself relating more and more to a lifestyle built around pain, medication, doctors, appointments, conserving energy and recovering from ordinary activities.

Meanwhile, I’m 19. I’ve just started university. This is supposed to be the part of life where the world feels completely open, where you’re figuring out who you are, going out, travelling, studying, building a career and feeling like you have endless possibilities ahead of you. Instead, sometimes I feel like I have more in common with someone at the end of their life than other people my own age. There’s a strange grief in feeling like I’ve skipped over a stage of life I was supposed to get to experience.

I’ve been doing this for years, so I know that technically I can keep going. I just don’t know how people come to terms with doing it indefinitely.

Sometimes I even catch myself wishing my illness were something with an endpoint, not because I want to die, but because the thought of having to fight my body for another 10, 20, 40 or 60 years feels impossible to comprehend. I want a life, not just an endless cycle of pushing myself, crashing, recovering, and pushing again.

For those of you who have lived with chronic pain or disability for decades: how did you build a life that actually feels sustainable and worth living? Did you eventually stop measuring your life against what healthy people can do? Did you change careers, expectations, routines, or the way you think about your future?

I don’t really need to hear “stay strong.” I think I’ve been strong for a long time. I genuinely want to understand how people make peace with this and create a life they don’t have to constantly survive.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

Profile picture for rockon79
rockon79 | @rockon79 | Sep 12 2:10pm
In reply to @jpj1952 "Give up hope. I know it feels totally crazy and wrong, and most people will utterly..." + (show)
Profile picture for jpj1952 @jpj1952

Give up hope. I know it feels totally crazy and wrong, and most people will utterly reject this, but for me the answer was to give up hope that my pain will go away or that I will ever go back to normal.
That set me free. It was actually a relief! Although it was just the beginning, because once you do that, then you go on to the challenge of full acceptance and stepping out of the victim role--which is rough because it's valid in its way. And acceptance isn't one and done; there's always another thing to accept around the corner.
But it allowed me to go ahead and live my life from here forward, to have the pleasures and fulfillment possible without constantly comparing my life to what I expected or is normal.
The Buddhists say "Neither hope nor fear" and to the extent you can do that it really does deliver you into present reality. And that's the only place life can be truly rewarding.
Which is not to say there aren't moments when I curse and grieve the fact that I'll never go on my favorite hike again. We're only human, right? But my family tells me that I'm a different person since I began to practice this.

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@jpj1952 I understand basing your life on a certain kind of hope-a hope that has absolutely no possibility of coming true, a hope that is totally illogical, a hope that denies the facts, a hope based on lies, and on and on has little or no benefit. But, denying a reasonable hope needed to deal with a challenging human condition is depriving the sufferer of the basic necessity needed for the healing a positive outlook can give. It is similar with "acceptance". Many believe that we must accept the things we can not change, but that is not true-for there are a multitude of things (like what many are enduring here) that are simply NOT ACCEPTABLE ! It eventually dawned on me that I had to accept that this is my life right now and the sooner I deal with it the better. I just don't accept that is that, there is no hope and roll over. What I am getting at is that how I perceive my condition can make me part of the problem or part of the solution (repeating myself once again). I can write from experience for many times I am still part of the problem and these affirmations hardly dent my comfort and ease with negativity. I'll keep trying though-what else can be done?-because giving up is not an option.

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jpj1952 | @jpj1952 | Sep 12 11:50pm
In reply to @rockon79 "@jpj1952 I understand basing your life on a certain kind of hope-a hope that has absolutely..." + (show)
Profile picture for rockon79 @rockon79

@jpj1952 I understand basing your life on a certain kind of hope-a hope that has absolutely no possibility of coming true, a hope that is totally illogical, a hope that denies the facts, a hope based on lies, and on and on has little or no benefit. But, denying a reasonable hope needed to deal with a challenging human condition is depriving the sufferer of the basic necessity needed for the healing a positive outlook can give. It is similar with "acceptance". Many believe that we must accept the things we can not change, but that is not true-for there are a multitude of things (like what many are enduring here) that are simply NOT ACCEPTABLE ! It eventually dawned on me that I had to accept that this is my life right now and the sooner I deal with it the better. I just don't accept that is that, there is no hope and roll over. What I am getting at is that how I perceive my condition can make me part of the problem or part of the solution (repeating myself once again). I can write from experience for many times I am still part of the problem and these affirmations hardly dent my comfort and ease with negativity. I'll keep trying though-what else can be done?-because giving up is not an option.

Jump to this post

@rockon79 For me giving up hope of my pain going away was the key to moving on and living my life. I had been spending all my energy searching for a solution to end my pain. All I could think about or talk about was my pain and doctors and meds and treatments, and my distress and upset.
Once I saw that clearly, I realized I didn't want to spend my life that way, or become a totally bitter person. The Acceptance and Commitment Therapy group I was in led me to think about what I cared about, what reasonable goals I could set, and to break it down into steps as tiny or large as I could manage. To my amazement 9 months later, with a lot of help, I had organized a show of my photography in town. That was pretty cool!
But there were plenty of days when my pain was all-consuming, and I know that could happen again. I try new treatments suggested by my pain team, and some have lightened my pain burden. The disability that goes with it continues, and that's become harder to accept than the pain.
Acceptance is an ongoing challenge. I still have pangs and grieve that I will never again walk my favorite beach or boogie-board. I also feel lucky for the times I did.

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mberko | @mberko | Sep 13 6:11am

Did you get the CPRS after an incident or after a bad stress event? Have you been to a neurologist at the Mayo Clinic? Have you asked about the Lin Health app/Service. I find it very helpful. Also reading about neuroplasticity. Ron Gordon’s book No Way Out is fantastic.

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harrie123 | @harrie123 | Sep 13 11:36am
In reply to @jpj1952 "Give up hope. I know it feels totally crazy and wrong, and most people will utterly..." + (show)
Profile picture for jpj1952 @jpj1952

Give up hope. I know it feels totally crazy and wrong, and most people will utterly reject this, but for me the answer was to give up hope that my pain will go away or that I will ever go back to normal.
That set me free. It was actually a relief! Although it was just the beginning, because once you do that, then you go on to the challenge of full acceptance and stepping out of the victim role--which is rough because it's valid in its way. And acceptance isn't one and done; there's always another thing to accept around the corner.
But it allowed me to go ahead and live my life from here forward, to have the pleasures and fulfillment possible without constantly comparing my life to what I expected or is normal.
The Buddhists say "Neither hope nor fear" and to the extent you can do that it really does deliver you into present reality. And that's the only place life can be truly rewarding.
Which is not to say there aren't moments when I curse and grieve the fact that I'll never go on my favorite hike again. We're only human, right? But my family tells me that I'm a different person since I began to practice this.

Jump to this post

@jpj1952 So perfectly said and so on target! Mindset is no small part of living on - perhaps living a New Normal is the key to lifting out of the victim thinking.
I find a greater ability to live my life, other than sitting in my recliner or lying in bed, if I use a mind set of Doing whatever, and not thinking I am unable to do it. Pain? Yes! But the feeling of accomplishment makes my MINDSET an overcomer…..at least for awhile.

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tyyne21wigwam | @tyyne21wigwam | Sep 13 10:32pm

M meditation and mindfulness are worth looking into. Many authors,Zinn is good. When I looked d up on u tube I found 7 books I read. Not a cure for me,but better than nothing. 30 years of pain, hardest part is that no one really gets it. That's why this mayo clinic helps. I feel like people do understand and have more difficulty t han I do

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dcat174a | @dcat174a | Sep 13 11:45pm
In reply to @tyyne21wigwam "M meditation and mindfulness are worth looking into. Many authors,Zinn is good. When I looked d..." + (show)
Profile picture for tyyne21wigwam @tyyne21wigwam

M meditation and mindfulness are worth looking into. Many authors,Zinn is good. When I looked d up on u tube I found 7 books I read. Not a cure for me,but better than nothing. 30 years of pain, hardest part is that no one really gets it. That's why this mayo clinic helps. I feel like people do understand and have more difficulty t han I do

Jump to this post

@tyyne21wigwam

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dcat174a | @dcat174a | Sep 13 11:57pm
In reply to @dcat174a "@tyyne21wigwam" + (show)

That is true living with chronic pain is not only difficult physically but emotionally.When you get up out of bed to start your day off.Chronic pain is there in your mind and body just hard to escape.I really like your recommendations and give it a go.

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