Today is the last day of the "Chili and Frijole Festival" downtown. I want to go so badly. So many times I power through no matter how bad I feel but today I just can't. I am in too much pain and I know by the time I park and walk to the festival I won't have anything left for walking through the booths. And then I worry that I wouldn't be able to make it back to my car. Frankly I feel a little angry and disappointed.

Like you I have good days and bad days. And there are times that I feel guilty that I can't accomplish all that I used to be able to accomplish. I just try not to dwell on my frustrations and if they overwhelm me I visit support groups like this one. There is sure something to be said about sharing your feelings with the people who can truly understand.

Today I'm going to a concert at the local college. Feel like hell warmed over, but I've got my electric scooter and I'm going to the concert. This scooter has saved my life. I would be homebound without it. You can only push yourself so far on foot with , or, without a cane or walker.The scooter let's you get out there.
Olga

I still don't know how to handle this, I never plan ahead, I have lost all my friends and most of family runs the other way when they see me . I won't deny I sometimes feel lonely but that's what these type of support groups are for. What I honestly feel so bad about is missing a lot of my kids school, and sports functions. I have missed do many baseball games that my son has played in, I am now missing football games that my daughter is a cheerleader for. Those are the things that just break my heart into pieces. The other stuff I'm missing don't compare to what I'm missing with my kids.

Rini

I don't make social plans. If I feel like it I go, I never RSVP. They say that 20% of the people that RSVP change their plans, and either don't come, or decide to come, so I don't feel guilty about showing up. I just tell people it depends on how I feel.
There are some things, like Christmas with relatives, that I go to, no matter what (excepting flu, strep, that sort of thing), and find a corner to hide in if I'm bad. Last Christmas was bad. But since I could barely walk, no one seemed too put out by my silence.
So I guess it's about picking what you are determined to do (which is a small list), and those things that can be passed by.
I am not able to work, so that does relieve some pressure, but then I am not able to work because my health is so poor.
Everyone has limits. I don't think that our brains are going to accept a plan of how to handle what social events to attend. After a while, I've gotten used to knowing that I have a 50-50 chance of attending anything.
As for missing games, perhaps someone could record them for you? I know it is no where near the same, but it's the only idea I had to offer.
Hugs to everyone who stuggles with this....(including me)

this is a tough one. I am leaving for a trip to california in 3 days. I have explained to my mom that i don't know how I am going to feel when I am there so don't plan any big family get together and think I am going to be able to help with the preparations because I just don't know how I am going to feel. I told her I may feel better than I have in a year, but then again I may not be able to move for 3 days. So let's just take it as it comes. It is hard. Today I wanted to walk home from Best Buy about a mile away but my foot is bothering me and I can't. My boyfriend has offered to pick me up and drive me home. He is so supportive and i am so fortunate.

I just had a discussion with my son about this today. Last year I volunteered and marched in every parade with the marching band, and was fortunately OK to do so...since being diagnosed with RA, I don't know if I should do it again this year...I was in charge of all the chaperones. What if I am in too much pain to be there this year - some of these parades are 2 or 3 miles. It is frustrating, because you just don't know how you are going to feel.

I explained this to the people I bowl with also, because I am on a league. I joined again this year, but made sure they were aware that if I could bowl, I would - BUT if I am in pain, I will not be doing anything other than cheering the team on.

I don't handle them well at times, i'm afraid. I'm still trying to do too much and paying for it for days afterwards. Yankeesgrrl, I bowl too. i went to a 2.5 lb lighter ball, and that helped, but the league knows that each week is hit and miss, and everyone is great with that, which helps and lets me relax and enjoy myself, without pushing. I manage my son and nephew's band, which involves travelling and standing a lot, and I work full time. That leaves nothing else, i'm afraid. My skin has to become thicker to withstand the comments from family when I can't do the dishes (My mother and sister do not help around the house, or when they do, they complain the whole time that i'm lazy. It wears on me, i admit) Thankfully I have a boss who understands, and she is amazing about helping me adapt my space to work easier, but I still need to be there everyday and that is exhausting in itself!
I hope you are able to find your balance, so you can enjoy what is important to you!

BOWLING??? I can't even imagine throwing a bowling ball down the lane, and I don't even think my hands are all that bad. You girls are made out of some pretty strong stuff!

With a lot of other things, it seems like I can stay home and feel bad or go out and feel just as crappy.

altoclef, it's not as much bowling as granny throwing.. but it gets me moving, which is, frankly, the only moving I do outside of work anymore. I take my cane to the lane, and shuffle up to the line and roll. I'm on a team that is there for fun, not winning, so we laugh more than win. The next day is absolutely rough, but it's worth it to have 2 hours of almost normal.

Our State fair is coming up in October. We have 3 kids that are looking forward to going as we always do every year. I have had major issues with fatigue as of lately and I am so scared that I am not going to be able to go with my family.I am planning on taking 4 days off from work before the day we are to go and rest. I am hoping to conserve energy so that I can go. Also, I am taking with me a folding chair ( one of those camping chairs in a bag) just in case I get tired and can't find a place to rest.

Having friends, loved ones or co-workers who are understanding and accommodating can make all the difference. Ii have told a few of my co-workers, but (as we all know) RA is often misunderstood. I'm fairly new in my position and so don't want to reveal too much or look like a complainer.
Finding something you can do, even if it is slightly modified or like the "granny bowling," is important. If at all possible, I try to do at least a little artworkduring the weekeknd. This gives me satisfaction and great enjoyment.

i try to make plans, if i do, every other weekend, or at least for only one day in a weekend if i have plans back to back weekends. this way i have time to rest. for instance, two weekends ago, i went to a friend's baby shower about three hours away and had to stay overnight and sleep on an air mattress, which was horrendous. i felt pretty horrible for a few days, even though i'd had fun. this past weekend, since i was still worn out from traveling and then going immediately to work, i did absolutely nothing except some laundry. it kind of sucks having to live my life planning in rest periods, but it works and i still get to do fun things. and if i don't plan time to rest, then i crash and end up sick.

I learned living one day at a time.Really the best way of living reguardless:) best wishes. R.A flare's attack w/out notice:( sad for that.I am aware thing could be worse, like cancer,etc. Gotta be thankful in all things.

Planning in rest periods AND not feeling guilty about them sounds like a good idea. indeed, Janebee, when one looks at the much greater challenges that face including someright here on this site, this don't seem so bad.

I have these same issues, I hate canceling on people when you make those plans and then have a bad day. I just am as honest as possible with my close friends and they all understand and are there for me. Without those friends I would be no where. I have the same problems you have with you job with being in school, I am in college and have to ask for extra time on tests and some days can't take notes because of the pain in my hands. I would like to know how people do this too, because it gets so frustrating not being able to do everything.