For those with chronic pain, what are reasonable expectations?

[J-rap]

Our dd has suffered from chronic, 24 hour/day pain for 6+ years, and recently has had evolving symptoms which we are hoping will enable us to finally have a better understanding of what's going on.  But, she has always pushed herself hard, and is happiest when she does that.  So although she has put off college until we get a better handle on this, she loves to cook and bake and a multitude of other things.  She figures it hurts when she sits and it hurts when she stands, but at least when she is standing and doing something she enjoys, it's a distraction.  So, she works about 20 hours/week, and also is busy at home -- helping me, cleaning, cooking, knitting, working with my dh on projects, running errands for me.

 

So my question isn't about her, it's about the dd of a friend of ours who is currently living in our home, who also has chronic pain issues.  She needed a place to live in our town for a few months, and we were happy to offer her our home.  Her mother has rheumatoid arthritis, and this young lady living with us seems to be on that path.  It sounds like she is in pain all the time too, and often drained of energy.

 

But she handles it by sitting and doing nothing most of the day.  She does gather up the strength to work at a coffeeshop about 16 hours/week, and is always very exhausted when she returns home.  But she is so unlike my dd.  She doesn't ever help with anything, never offers to help clean the kitchen, or help cook dinner, or anything.  She spends hours/day on her computer, doing not much of anything (mostly on Facebook).  So, I'm in kind of a quandary.  I'm not charging her any rent at all, and am happy to have her here for a few months.  But with any other long-term guests, I'd expect them to help out a little.  But she is in pain all the time.  And I guess I shouldn't compare her to my dd who just happens to deal with her pain differently.  And yet, she has it in her to work 16 hours/week, and to go out a couple evenings/week.  

 

So what's it like?  I don't have a good understanding of this.  If just getting up to empty the dishwasher really is way too painful and draining for her, I'd put up with her just being a guest in our home for a few months.  Yet part of me wonders if she is lazy, and if I should be encouraging her to help a little.  But, easy for me to say, since I never have any pains or energy problems at all.

[Schadenfreude]

If she is suffering from the start of rheumatoid arthritis then she needs to move. Activity is one of the treatments for it. She may be lazy, depressed, or her parents may have never made her learn how to deal with it. Chronic pain is no joke, but a lot of people live with it. The diagnosis of what's causing the pain determines how active a person is capable of being but it is up to the person to live to their potential.

[prairiewindmomma]

I think you should talk with her. It's a balancing act, and everyone has different coping abilities and methods.

 

I can't presume to speak for anyone but myself, but I will say that everything fluctuates for me and that my priorities vary. There are days when I let the house go so that I have energy to see friends and have some measure of enjoyment in life. On other days I am doing well enough to hit the gym at 5 am, school all day, run errands in the evening, and clean until midnight. I hate that I can't be consistently "on", but I am not lazy.

 

For the dynamics of the living arrangement, though, I think you should talk with her and suggest 1-2 specific ways she could help. She may be afraid to step in to normal household dynamics, or, as someone still young--may not have had responsibilities before.

[prairiewindmomma]

And I agree--with RA it's move it or lose it. If she can't move it, it's time to go to the rheumy for a med switch.

[J-rap]

as someone still young--may not have had responsibilities before.

 

Yes, I have a feeling this is part of it, but I'm not sure where the line is of just not having had a lot of responsibilities before to being in too much pain to do anything.

[J-rap]

Activity is one of the treatments for it. 

 

Interesting!

 

She has talked about joining a yoga class in the evenings, but then never has energy to go.  It sounds like this might be a good thing for her to do.

 

Unfortunately, she doesn't have health insurance in our state, though she's working on it.  Hopefully she can meet with a specialist soon who can help guide her.

[J-rap]

And I agree--with RA it's move it or lose it. If she can't move it, it's time to go to the rheumy for a med switch.

 

And actually, she isn't taking any medications at all right now, because she doesn't have a lot of faith in doctors.  I've been trying hard to change that, actually!  We've had lots of conversations about it.  I'm still hoping that once she gets her health insurance figured out in our state, I can persuade her to go.

[Lang Syne Boardie]

We all have some things we must do, such as cleaning up after ourselves and contributing somewhat to the running of the household.

 

I would not host a young person long-term who will not do such basics (or find a way to get them done), and who is also not doing anything to seek treatment or improve her health. The insurance is a sticking point -- that's awful -- but the part about not pursuing the things that SHE thinks would help her, either, is a decision I wouldn't want to enable.

 

As a person with lupus, one thing I've done to help my perspective through difficult times is to actually time myself at certain tasks. Even if you have to do it while in pain, loading a washer or dryer only takes X minutes, making your bed takes X minutes, etc. When you look at it that way, if you can work a part-time job and go out twice per week, you can probably power through at least one ten-minute task per day, right? Not necessarily work for another hour energetically and happily, but do ten minute tasks related to your own life and your own mess?

[Jean in Newcastle]

Having RA and being unmedicated is not good.  Has she actually been diagnosed with RA?  I know that there can be a genetic component but I would want an actual diagnosis.  With some pain conditions there is a thin line between movement that helps and movement that crosses the line into making things worse.  That is the case with my fibromyalgia.  I have no idea if it is the same for RA.  In my case with fibro, the fatigue makes moving harder than the actual pain at times. 

[SparklyUnicorn]

I'm no doctor for sure, but it almost sounds like chronic fatigue syndrome.  I just watched a documentary about it.  It is pretty awful.  Some people went from being highly active athletes to being like your guest.  And because they otherwise look normal people think they are just faking it.

 

So I dunno.  I think it's hard to say.  If she is up to helping more than she does, I think it could also be she feels a little shy about it?  Like she doesn't want to get in the way?  Just throwing an idea out there. 

 

 

Edited December 9, 2016 by SparklyUnicorn

[prairiewindmomma]

I think it's important for her to know if she has RA. With rheumatic disease, joint damage is irreversible. There are other complications that come with rheumatic disease because it affects the entire body.  The goal is to treat aggressively to go into remission for as long as possible, and when she flares, to switch treatment and try for remission again.  If she's watched her mother not have her RA under control, there may be a degree of hopelessness and depression that she's experiencing as well.  Her disease course may not be the same as her mother's, but she won't know unless she tries.  

[J-rap]

 

 

I would not host a young person long-term who will not do such basics (or find a way to get them done), and who is also not doing anything to seek treatment or improve her health. 

 

Yes, this is kind of the point that I'm at actually.  But, I do know it's only for a few months.

[J-rap]

Having RA and being unmedicated is not good.  Has she actually been diagnosed with RA?  I know that there can be a genetic component but I would want an actual diagnosis.  With some pain conditions there is a thin line between movement that helps and movement that crosses the line into making things worse.  That is the case with my fibromyalgia.  I have no idea if it is the same for RA.  In my case with fibro, the fatigue makes moving harder than the actual pain at times. 

 

Well according to her, when she was last tested a few years ago (?I think?), this is the path the doctors felt she was heading, but for some reason they couldn't make the diagnosis official then.  However, she feels that in the past year her symptoms have become much worse, very much like her mother's, who does have RA.

[J-rap]

I'm no doctor for sure, but it almost sounds like chronic fatigue syndrome.  I just washed a documentary about it.  It is pretty awful.  Some people went from being highly active athletes to being like your guest.  And because they otherwise look normal people think they are just faking it.

 

So I dunno.  I think it's hard to say.  If she is up to helping more than she does, I think it could also be she feels a little shy about it?  Like she doesn't want to get in the way?  Just throwing an idea out there. 

 

Exactly, which is why I don't want to assume that should be able to do more just because she looks good.

[Guest]

Is whatever situation that is causing her to need to live with you perhaps causing her some depression on top of it all? I would think being homeless (although it's awesome you're housing her it's still not *her* own place) could play a large part of it. 

[J-rap]

Is whatever situation that is causing her to need to live with you perhaps causing her some depression on top of it all? I would think being homeless (although it's awesome you're housing her it's still not *her* own place) could play a large part of it. 

 

I've thought of that, but she actually appears pretty upbeat.  I'm not sensing depression.  (But of course you never know...)

[JumpyTheFrog]

I would suspect either fatigue issues or depression.

 

Back when I was sick enough to have Chronic Fatigue Syndrome I was always exhausted. Every single day for years. One day that stands out in my mind was a day that I was worn out before church. What wore me out? I carried a crock pot out to the car then carried one more armload of stuff. That's all it took. Before I got sick I was athletic and worked out.

 

Thankfully, after ten years, I have recovered from that and have minor symptoms in comparison. I'm still working on the sleep problems.

[SparklyUnicorn]

I've thought of that, but she actually appears pretty upbeat.  I'm not sensing depression.  (But of course you never know...)

 

I guess in these situations what can you do but give them the benefit of any doubt?  I deal with this with certain family members.  They have disabilities that you can't see.  So sometimes I have wondered if they are taking advantage of the situation because I really can't tell.  After all, they are human so it could happen. But since I can't tell...well then what can I do?

 

I wonder if you ask her to do a particular task if she can manage it if she would do her best to get it done.  You would then lay out what you are looking for..  She may be more likely to really try to get it done.  But if she doesn't maybe she'd mention she tried and can't.  I dunno..just an idea. 

 

It's super nice of you to do that.  That's for sure.  I guess you earn karma points anyway. 

[J-rap]

I would suspect either fatigue issues or depression.

 

Back when I was sick enough to have Chronic Fatigue Syndrome I was always exhausted. Every single day for years. One day that stands out in my mind was a day that I was worn out before church. What wore me out? I carried a crock pot out to the car then carried one more armload of stuff. That's all it took. Before I got sick I was athletic and worked out.

 

Thankfully, after ten years, I have recovered from that and have minor symptoms in comparison. I'm still working on the sleep problems.

 

Wow, that's great that you have mostly recovered.  Can I ask you (just in general) what was involved in your recovery?  Was it mostly meds?  (Only if you're comfortable telling me though!)

 

Yes, it could be something like this.