Sorry you are having a tough time right now. I know RA really can suck sometimes and mabe most of the time. With pain and fatigue can also come depression. Do u think you are depressed? Our activity level has been taken away from us. I used to b so active running playing sports and so active but that has changed. Just a thought about depression. I wish u the very best.

I understand, was diagnosed three years ago. I have enough energy to work, almost nothing else.
Maybe a little information on RA could help your Boyfriend understand what is happening to you.
Hope you feel better soon....
Lynne

On the fatigue train myself. The thing is you don't have options or a choice. Your right it simply takes over & you are held prisoner in your own body during that time.

It's so hard for others to understand. Then again people do not like to believe something so life altering can exist. After all they can't fight it or really help in a way that would give them peace so they simply can't phantom this is part of life for someone they love.
You know can't kiss the boo boo & make it better, or bring soup by while recovering like from a nasty virus.

Education & knowledge are powerful tools in attempt to understand.
He has to want to learn in order to accept this is part of your life like it or not. It's not who you are & does not have to define you but it's what you live with.
I do get it. I get so tired of saying I'm just to tired. Having my family look at me like well why?
It's not like the swollen joints they can see. Exhaustion is the invisible enemy.
I hope he opens his mind up to learning the how's & whys.
Only then can he even attempt to understand & allow communication on how you feel.
Again I'm sorry. I feel for you.
This is horrid but one day in our life & that would at least get their attention. As much as I love my family there are days I wish I could just put them in my body for a short amount of time. At least I would not get the why looks anymore.
Sammy

degrees of severity of the disease, while having it, and degrees of accommodation ability and functional abilities while having it, and the onslaught of time time time in terms of passing from your 20's to your 30's to your 40's....it's nice he wants to live in the past, ask him to live in your present so you can both plan for your future :) - and who knows maybe something will eventually slow him down and the light bulb will come on for him. empathy comes from self enlightenment for some. the best responses you are going to get are from those that battle the disease that are with health nuts running circles around them. I am one of those. I get your stuff. you can't convince him, so just embrace the sick-er you, and be kind and gentle to yourself. you lead maybe he'll follow.

hugs
Depot

Dear RaceRunner --

I know that I do not have depression. It is a really good question though. I have had a few bouts with it I believe but that isnt it right now. I find joy still rather easily when I can and I have solid moments of gratitude. This is fatigue. I really DO want to want to. When I have been depressed I didnt even want that. Thank you so much for your support.

Dear Lynne

I am sorry about your diagnosis. I dont wish this on anyone at all. EVER! It is a challenge on a daily basis. It gets easier. It gets harder. It gets easier. It gets harder Having a partner is an added challenge. I hope that he takes some of the information that I have provided and enters into some conversation soon. I know that this is a we thingbut honestly he has a choice. We dont

Dear Sammy

You nailed it. I am sick and tired of always being the one sick and tired. It is very hard for him, (men especially yes it is a stereotype -- LOL) to hear their partner hurts, to watch them suffer (even from fatigue) and have NO POWER to help. He is a solver and a fixer. There is no solving and fixing this. There is acceptance of this. Indeed there are times when a rally toward a goal can be seen as doing something but when I look normal and still cant get up and go he doesnt get it. As you pointed out Sammy, he never will KNOW. In a way this is also about trust. He has to trust that when I need time, space or rest and retreat I am being genuine. I am not a game player. I have never demonstrated manipulation and I never play the victim. So I would ask that he consider what he knows about my character and realize that I dont lament for nothing. Sammy when you talked about wishing (but not really) that your family could be in your body for even a short time it would be nice so they could be in your shoes (it isnt because we want them to suffer at all). That is appealing in the metaphorical sense but at the same time it is the relentlessness of this disease that is one of the worst parts of it. There is no way that they can know that in a day or even a year in our bodies My 18 years is a long darned time! At any rate he does have to want to know. I pray that it is something of value to him.

One of the analogies that comes to mind is bringing a child into a relationship. Your partner accepts the child as a part of you. Time passes only to find that as the child matures there is some sort of disability or is in an accident that alters the child and his ability forever. Because of this, the child will always be a dependent, will never marry and will never move out. Our partner accepted the child when he thought the child was normal. Yes, there was added work helping to raise someone elses child but that child would move out one day and be on his own. But now with the disability that will never happen. As the ongoing challenges mount it gets harder. I know if I in his position it would be something I would have to think about. I however, am someone who DOES want to learn. I am someone who does want to learn how I can help when I cant cure. I want to know what I can do to be supportive. I cant expect that everyone is like me but I can hope he wants to try. He has a choice in this. I do not.

One blessing and tragedy is that about a year ago my best friend was diagnosed with RA. We have been best friends for a decade. I wish she wasnt a fellow sufferer. Because though there is nothing I can do about her diagnosis I at least have someone in my life who has watched my struggle for years and now really has walked a bit in my shoes. I am a blessing to her as well having had the disease far longer I have insight for her that doctors just dont know how to communicate. We support each other as much as well can.

So Lynne, again, you nailed it. He will learn if he wants to. That is up to him. I can hope and pray. I love him deeply and he is a very good man. I will keep you posted!

Warmly,
Kyle

I hope he comes around and realizes what you are going thru. When I was first diagnosed, my husband was very supportive. Then the symptoms started to get worse and really interfere with my daily life. I am now in a flare and he is having trouble adjusting to what is going on. I know he loves me deaply, but he is a fixer and a take charge type of guy. This he can't fix and he is at a loss as to what to do. At times, it has put a strain on us. Best of luck to you.

Well our latest talk didn't go well. I haven't cried this much in years... He is filled with resentment right now and has taken my fatigue personally as my not wanting to be with him or do things with him. Honestly, I wasn't even clear on what was going on. So neither of us really knew. When I started to really read up on RA and fatigue it began to make sense and I actually felt relieved!! It WAS something!

Over the last year all I knew is that I needed to have boundaries from external demands and I didn't engage in as many of our usual activities -- my work is HUGELY demanding and I thought it was my trying to seek balance. In a way I was but I didn't add my RA to it much at all. Over the summer, I also made arrangements differently so I COULD participate but could set my own pace...he took that as an affront that I didn't want to "ride with him" (to the lake for instance) -- instead of understanding that I simply couldn't be ready on his schedule and under that pressure. I thought I was doing something GOOD by finding another way to do things!

Fatigue is insidious. I hate it. Right now he can't separate my not being the "go-getter" RIGHT NOW that he fell in love with from the disease that is wrecking me RIGHT NOW (I always frame things as right now -- not forever). He thinks that I have backed out of the relationship sort of and because of that, he has... A very hard time right now.

Damn it, damn it, damn it. Off to cry more.
Thank you everyone...
Kyle

Sorry to hear you r having a rough go if things. Sometimes when I am in so much pain I just would rather be alone in my pain. That doesn't mean I dont love the people around me it just means I need to deal with this is my own time and in my own thoughts. Maybe its wrong maybe its not but sometimes we just to step back away from everyone and everything so we can wrap our own brains around the crappy hand we've been dealt. Good luck feel better

Hello :)
Perhaps your boyfriend needs to readup on others with RA ? He either doesn't fully understand or doeesn't want to deal with it because he doesn't know how to help you,or he may be just looking for a way out :(
Would mentioning marriage to him let him know that you aren't trying to get rid of him?

Yeah this all stinks! For sure. You all know...

What it seems that is happening is that he has separated the events, the lack of engagement from me, the retreat FROM the disease. He doesn't see them as intricately linked. He is resentful and thinks that I was choosing NON-participation over him. I suppose in a way I was -- it was my coping. But I can honestly say that if I did not have this stupid &$^$ing disease I would be doing everything all the time. Most people can't keep up with me WITH RA -- I just happened to partner with a bionic energizer bunny.

I know that for our partners dealing with RA and with us, at far less than our best, IS hard. We LOOK pretty normal. They watch us ramp up for work and for the things that are REQUIRED of us and then the time they have are really the "leftovers" we have. I don't hold it against him -- that would be ME carrying resentment. In my world resentments are toxic. When I resent someone it is like ME drinking the poison and expecting the other person to die.

It might take time for him to see that if I had choices that were better, I would be making them. He is coping right now too.

I thank you ALL for letting me dump. I have been in one of those "crisis" modes that come every handful of years. This isn't fun right now. All I can do is my best. All I can do is offer what I have to offer. I can try to manage my energy as best I can. I have some things I would like to achieve at my current job but I do NOT think I can do this work for the long haul. There is too much stress and pressure. Managing all of this AND a relationship with a man I love is not realistic forever.

I loathe the limitations!!
Thank you all again...

Your a smart lady.
I'm much like you still can manage circles around some. That would be my ADHD. Then boom I'm out for the count. Some call me crazy, maybe I am. All this goes against my nature which can cause me to be my own worst enemy.

You have done some obvious reflecting. Which puts you a step a head. I'm glad & hope your partner appreciates what he has in you.
You know education & acceptance are important for those we love.
We can only attempt to help as so often it's a continuous journey we travel. Acceptance can be on a daily basis for many.
Wishing you the best.
Sammy

Thanks Sammy!
This disease coupled with other "gifts from God" has forced me into acceptance more than you can imagine. Acceptance IS a daily mantra for me and the Serenity Prayer goes a LONG way. The most challenging part of that prayer is "the wisdom to know the difference".

When I find something in my life deeply challenging my standard reaction is to dig in and work toward some form of success, be it a relationship, a job, a project and in my younger years a horse! (I have given up riding really rank horses -- when the helicopter took 8 hours to find me in the Utah wilderness as I lay in the dirt unable to move, I had a lot of time to think! LOL) I can accept things that most people (normal people) cannot fathom -- all of us with this disease can.

That said, there are times when I want to just run to the top of a mountain and scream the f-word until I pass out!! Sometimes life is just TOO hard and I love challenges. I love challenges until it comes to challenges with PEOPLE. Don't get me wrong I can handle the most demanding personalities in a customer service way and I can support people who I don't even care for -- I believe in most cases that people are good and people do the best they can at any given moment. It doesn't mean I have to surround myself with them if I have a choice!

I don't believe that Jon will ever totally get it. We all know that the people around us who love us have never walked a mile in our moccasins. They have never lived the unending battle that we MUST face. We didn't have a thing to do with getting our disease and yet it dominates literally every waking moment of our lives. What WE do is buck up and continue to march, sometimes we trudge. Because we continue to forge on, our loved ones think that somehow we are "better" -- we aren't -- we are just moving forward because that is the best choice, out of a handful of lousy choices, that we have!

Have a blessed day!
Kyle