managing life with chronic pain

For those of you who live with chronic pain, and other conditions which prevent you from being able to leave the house, how do you find meaning in life? (for lack of a better term) For example, I've just had to withdraw from school because my pain situation doesn't allow me to get to class, and I don't know if I'll get back to it, and I had to leave work a number of years ago because of disability and that was devastating and I'm almost completely isolated now as a result of the combination of chronic pain and other chronic physical conditions, chronic mental health issues (including OCD, depression, and agoraphobia), constant debilitating fatigue, and hearing loss which makes it impossible to carry on conversations with people. I probably get out of my house once or twice a month, and that's in a good month. PC helps, and I have a couple of friends that come by a few times a month but I'm finding it difficult facing the fact that I may never really be able to 'do anything' or 'accomplish anything'. I know tons of people in this situation who get by just fine and my perfectionism and my sense of identity as a 'doer' and a 'worker' and someone who takes care of others is a big factor in why I am experiencing so much anxiety right now. I'm wondering how other people make peace with progressive inability to function (both in general and in society), and if you have any suggestions on how to do this. It's weird because when I have a choice I can stay home for weeks on end and be perfectly happy about it but now that it's no longer a 'choice', now that I more or less have to be home all the time, I'm freaking out.

I feel your pain -- on many levels.

I have several disabling conditions. I had started with one. I've become increasingly less effective at getting things done over the years.

It's not an easy adjustment. It comes with time, and in my case, with a lot of disappointment/heartbreak. It's been 30+ years of total medical disability for me and I'm still not used to not being able to be my "perfectionistic self."
I often feel I am letting myself and others down.

I do whatever I can. I try to accept the things I cannot do at any given time.

Good to have you participating in the check-in thread, too.


WC

Wild Coyote: thank you so much for sharing. How you describe it, doing what you can when you can and experiencing a lot of disappointment, feeling like you're letting yourself and others down, that's basically how I see it going. I mean, it's already been going that way for a while. I've lost friends because I can't show up when they want me to. Today was actually a really good day - the kitchen is almost totally clean, for the first time in about a month, and I advertised for someone to come once a week for a couple of hours just to clean the bathroom and stuff like that, stuff which I haven't been able to do without taking a million breaks and taking 2-3 days to do it in a really long time. It's just caused so much stress and anxiety and bad feelings about myself and my abilities. But at the same time I know that blaming myself is not the answer, because this is nothing I asked for, and to be honest I've been running on empty for a really long time before I had to start giving everything up. More than anything I need to take care of myself. So I'm trying to focus on the positives, of having the time to figure out what it is I need to do for myself to keep myself safe, to take care of my health, and to manage my time and energy better.

Thanks again so much for your support.

My heart goes out to you and anyone who may give you a hard time will have "karma" coming after them + it's not a choice things happen in life and that is where compassion comes in.

I was disabled for a number of years and got back at it once I found the right combination of medication and the further out from my initial episode hit. I was doing very well all the way up to my back injury. Now I am having major back issues and see a therapist and chiropractor 3-4 times a week. I was hoping to be back at work this week but I am not sure as today I was in so much pain and regretted leaving the house.

My suggestions are for are to complete your degree one class at a time online. If you can take two classes great but it's not the end if you only do one at a time. This means you are still moving "forward" correct? Yet taking it at your own pace.

I had to do this for my bachelors degree and thought I was never going to be able to graduate let alone be in a masters full time + full time work when I had previously been a ...hmm...whats the word...and a good term for this..no sloth...but just broken down to nothing mentally, physically, and spiritually. Luckily I sought out help because I wanted to get better and I had had some really bad things happen to me.

I face the realities now though that I have a emotional disorder which makes sense why I was always so sensitive as a child, teen, adult etc. Through God I push myself though and realize I have to move forward. I was once in the pits...it took me a few years to get back to me but I'm here now and know you can do it too! It just does feel like it at the time -Ever84

Ever84 - thank you! I kind of feel similar to most of what you say. I try to remember that I have no idea what's going to happen, and that's why it's important to take things at a pace I can handle. I am considering social work as a degree - because I can develop a practice that can be a livelihood helping people on my own terms, and because it will help me take all of my experience and use it for good. And the good thing about it is that I'm nearly done the first 2 years of my degree, and the second 2 years are entirely by distance. So I won't have to worry about showing up physically. So that gives me hope.

I am a hard worker too, and a fighter, but right now unable to do either, and I'm trying just to make peace with that. I've been putting everything into moving forward, doing all of these things when I didn't have that energy to give in the first place. I recognize this as a necessary step in my healing. Also, I've been wanting a 'break' for years where I can heal, deal with all of my stuff, and take care of myself, because that's always been a weak spot for me.

Like the Coyote, I relate. I have 11 pain diagnoses with ‘chronic pain’ being at the top. After 13 years of being on opiates and 1 year of opioids, I went cold-turkey-withdrawal and I’ve found alternate ways to deal with these pains.

I would advise against seeing a pain management doctor. I would stay away from pain clinics.

Today was one of those days when I'd just had to accept resting for the day.
I'd done a lot (for me) for 2 days in a row. I'm exhausted and in severe pain.

It's been 30+ years of playing this "trade-off" game, where I pay a price for activity, and I am still not used to it. I was an athlete and I still have that mindset.

Love to All!

WC

Wild - I totally relate to that. I used to play all kinds of sports and I've always been active but now I just can't even with any of it and it's been a while since I've really been able to function on any kind of consistent level but I still make plans, goals, and what have you with all the zeal of my sports-playing, low-pain self.

Over the past 10 years I have had to give up a lot due to poor health. I no longer could work as a crisis counselor, a job that I loved and thrived at and soon after I had to drop out of the PhD program I was in. I very rarely leave the house unless I am with my Hubby or have a medical appointment. I rely on Safeway to deliver groceries so that I can have what I need to cook our meals. I pace myself. Some days I have the energy to cook 2 meals a day AND get chores done and other days I simply need to rest. To keep my mind active I am writing a novel, a murder mystery that I will self publish and give to family and friends as gifts. Writing makes me happy as well as makes me feel somewhat productive. It is a daily battle and even sometimes an hourly battle with chronic pain and other complications from lupus. All I can do is my best and thank the lucky stars that I have a very supportive Hubby.

Thanks for sharing that, BlueEyedMama. You've just described a lot of my experience - right down to writing the novel! Writing keeps me sane/grounded. I love it. Good luck with yours!

Mama and Spondi-

I can totally relate. More than I can find the words today.
I used to be very, very independent. I'm trying to find a way to accept some healthy dependence (balanced interdependence); yet, I feel very needy, which affects my self-esteem.

I do think I'd feel better "letting go" of some of the expectations I tend to still hold for myself, ask for more help with chores and relax. When I don't accept my limitations, I always feel overwhelmed with that which I cannot do, which seems counter-productive.

I need to work on self-acceptance for who I am today, giving up holding on to the traits/aspects which no longer serve me well. I need to "adjust," without "giving in," or "giving up."

I hope you are more comfortable today.

What a great suggestion re: taking courses toward a degree. I wish I had done that.


WC

I discuss the use of medicinal cannabis below. Hence, the trigger. You have been warned.

I have improved my pain condition with new medications.

But, when it took me two-three days to clean my kitchen, I, too, took those million breaks and I have learned patience during the past five years.

I share, or have shared, many of your afflictions: Physcial and mental. I conquered agoraphobia by following my therapist’s advice: I started by going outside and talking to friends in ten-minute intervals. I don’t know of any other cure.

I also have a caregiver who comes in one-to-four days weekly. Usually just one day. I think that if you can afford someone to come in and do the deep-cleaning that would be ideal.

Good luck —-

It is important to not look at all of things that you can't do that you could do before. A better approach is taking one thing that you want to do a finding a way to do it. Don't start with something difficult, but pick something you haven't been able to do for a while. If you don't succeed first keep trying learning from the first time. Be mindful of your pain. Don't let it get so bad that you can't move the next day or couple days, but don't let it stop you from achieving your goal. When you accomplish your goal you should feel great. Don't reflect on all the other things you can't do ( you will get to them eventually). Enjoy the moment. Then you can move onto the next task or work to continue to refine the process for the task you achieved. Every time you accomplish something always take the time to look at the different tasks that you can do now and see the positive. It will help to give you the drive to continue to improve.