You say that your SO Will stay up with their friends playing basketball in the cold until very late? You are not being unreasonable. I think your SO have their priorities wrong.

So, is there something I can say to point it out to them that they're not doing themselves any favors by these kinds of habits?

probably not, if it's more of a relationship thing and a control thing than it is you know self care and as 2 left said about priorities.

or maybe she feels so great sometimes that she just has to go out and shoot hoops just to get her ya ya's out. don't know.

sometimes in the waaaaaaaaaaaaaaaaaaaaaay back time I would try to alter my behaviors to more mostly align with the non - chronic illness woman I was dating - now I find I am so far behind that I can't fake it. so I am just myself and offer what I can. that's also a function of age. the older you get. the less you care what others think. also a function of gender sometimes also. (I can hear coaltrain and Ray now :)

he or she should be offering what he she or he can to you and the same in return.

the rheumatologist should weigh in on the tons more migraines thing with orencia... .orencia did not cause fatigue with me unless i was so many days (injection) or weeks (infusion) out from the last dose until it stopped working. maybe if it's been a year or two the rheumatologist will want to try another biologic.

what medicine does she avoid?

was he a shitty sleep habit person before the RA?

not all habits (unfortunately) can be linked to our health challenge

some bad habits may get exacerbated by our health challenge but I know deep in my heart that I am just using that as an excuse when it was a bad habit to begin with. But that's just my crappy 3 cents. :)

depot

As far as #5 in your original post goes, doesn't sound like YOU are the one being unfair here.


From what you are saying in this post, I have a hunch that your SO does not want to be in a relationship at this time. If you are five minutes away, bearing dinner, and you are told to turn around and go back where you came from, THAT'S the unfair & unreasonable behavior. You obviously care about this person. Take that caring and lavish it on someone who will appreciate it and who will reciprocate. Not sure what the problem is here, but it seems to extend well beyond RA.

Sorry if that sounds harsh, or if I am reading more into it than is there, but from what you write in this post, that's my take on it.

As a co-worker once told me, in her thick French accent, "Eet ees better to be alone than to be in bad company."

we are older than moses, you will figure it out - you are age 24 - this gives you time to find your relationship nirvana.

you are also a great woman to be on here posting when perhaps she could be on here looking into her own disease and not acting like a spoiled tween.

I don't usually think like this: but maybe you should go take care
of yourself? I know I know (love love love).

I also don't think everything is related to RA from the beginning of civilization to the end. it could be she is just a jerk you know and you deserve better?

or to quote something I heard recently - you can be annoyed or you can be alone. (it was intended as a joke I am not trying to not hear you, really)

hang in there

depot

I also agree with the others. This SO is trying to dump you, and it has nothing to do with RA. The SO is just using it as another excuse to not see you.

If you have looked into RA, and are already trying to be supportive, there is not much more that can be done. And for me, the fact that he is playing basketball with his friends till 2 am but he can't find time for you? The hand writing is on the wall.

You need to break it off with him. Yes, it is hard to start over, but this time be aware of red flags right from the beginning. This doesn't mean an SO shouldn't be allowed to play basketball with his friends. But it does mean, if he is making excuses not to see you because of his RA, but doing this with his other friends, that it is time to move on.

Sorry to reinforce what these other posters have written. But I have just seen this kind of thing too often.

PS. I do commend you of being supportive of his RA. And as a parting gift, you might push him to take his Orencia regularly. It is an expensive medicine, and it needs to be continuous. It kills the T cells, and if you don't take it for a week or weeks, the T cells will start to come back, and he will be at square one. It is simply not a medicine that you can stop taking on and off. I know, I am on it. And I did that with Kineret for a few months, till I was told to take it all the time. Then it worked perfectly.

Thanks you guys...
We actually talked about it. They didn't remember me being 5 minutes away or that I was even coming over; apparently they had come straight home after work and passed out from the migraine (which has happened before.) When I told them that we had that conversation, they apologized profusely and said they wished they'd been more with it, otherwise they would not have said for me to go home.
I actually told them that it's not fair to blame me for feeling sick and tired all the time when we'd seen each other 4 times in the previous three weeks and they stayed up late with their siblings and friends all the time in those three weeks, which of course started the new vicious cycle of not feeling well. I reminded them that our rut of watching movies and cuddling is because they are often too tired to do much else. I also pointed out how miserable they'd been since starting Orencia. They acknowledged these points as valid and true and stated they are going to talk to their rheumy about the possible side effects of Orencia.
We decided to try to work things out. Something I had not been considering is that I constantly ask to see if they would like to spend time with me in the evenings, last minute, when we're off of work. Of course my SO would, but there are of course other things they want to do and need to do (my SO is a teacher; they have grades, lesson plans, lectures, etc., to do in the evenings). So it does drain them to have to tell me no or say yes and not get much done afterwards. Now we're going to church together on Sundays, and we'll make a point to either set up a scheduled time to be together during the week or otherwise plan for time together on the weekend. This will allow them to get plenty of rest during the week. If they want to make poor choices, they can, but we now have boundaries in place that will narrow down what is truly making them tired.
That being said... They like board games and puzzles... What are some specific things we can do at their house that won't completely wipe them out? Would "Twister" be a good idea for some kind of exercise and to move their joints?

Another question... Is there a topic somewhere that addresses the side effects of Orencia? I think my SO's libido/drive/whatever has decreased significantly since they started it... I wonder if it's a possible side effect or just a sign that Orencia isn't as effective as some other medications?

Twister is too hard on the joints. Board games are good, as long as they don't take too long (Monopoly can take forever) . Look online at a store that sells games to get ideas. If their hands can deal with it, checkers and card games might be good. People used to spend their leisure playing games together before radio and TV, and there are many more games out there than you would think. Watch funny youtube videos. Do an internet search for "things to do when you're sick and bored".

Also, if you want them to want to spend time with you, I think you should worry less about what would help them physically, and concentrate on making your time together fun.

PS: I wish someone would bring me dinner!

Budda - ya think?!

Pink, please take care of yourself and revaluate what you want. Nobody should have to work that hard to keep a relationship going, especially if it is all one sided. You are the only one working to keep this relationship going, and that really is wrong. Your SO will not treat you any better as time goes on - even if they were healthy, it will never get better, and usually gets worse. It is better to be alone, and alone - then in a relationship and still alone. Sounds to me like this relationship is very one sided.

AND, what Alto said :)

Thank you all for the words and support. I should have listened to you and left my SO earlier; I just wanted to do my best. Anyway, my SO dumped me last week because he, "never had feelings for me." Well. I tried.
So I've been away from the page for awhile, but I will be praying for you all, if you don't mind.

Pink, I am sorry for you having to go through this. Not that you probably want to hear this, but you deserved to have someone that treats you with respect, and puts you first - certainly over his friends.i wish you all the best. You sound like you are a great person. And, I will take all the prayers I can get, thank you.

You got them.

Live & learn.
As hard & unfair as it can be.
Shame on those using disease as an excuse.
Just for the record, Orencia has never made me that tired.
Their lose. You were understanding, caring & willing to stand beside.
That can be rare. Especially for your age.
You deserve better.
Who ever you find they will be very lucky to have an empathic person in their life.
There are not enough people in this world with that ability.
I'm glad you did not invest more into an undeserving person.
Honesty is the best policy. Your worth more then that.
Take good care & never loose that empathy.
Sammy