There is a lot going on in my world, just like most people out there. The difference is that I can't keep up now that I have RA. My daughter is graduating from college, which entails a move. One of my best friends is getting married. This is the busy time of year at work. Then my daughter calls last week and announces that she is engaged and we recieved an invitation to a b-day party this weekend. I know I am blessed and don't want to tempt fate by complaining because I think after 4 and 1/2 months on Plaquenil it may be working. I feel much less miserable and am afraid that if I do everything I would "normally" do, it will come back. Is there a way to gracefully manage all of this or will people just eventually stop inviting me or asking me to do my magic coordinating?
I'm so tired, please bear with me. Any advice would be appreciated.
First of all, I think what you are describing is referred to as "fear avoidance" which can keep chronic pain suffers from doing activities they fear will make their symptoms worse. The problem is that if left unchecked (or rather, untested), this type of avoidance can actually lead to worse disability.
Now, having said that, it is important for us to know our limitations. The way to know them is to a) ask our doc, and b) find out the hard way! I am always learning my limitations, as they change so much!! Just reading all the stuff you have coming your way, I get exhausted! I imagine you are feeling the same dread.
One thing I have learned is that sometimes, if something is important to me or my loved ones, I have to suck it up and go for it...and pay later. I try to schedule in the "pay out" time when I have to do more things than normal. If, for instance, I have company coming in from out of town, I plan ahead, rest ahead, and plan for rest each day. Then, I plan for downtime after all the festivities. It's all about priorities.
Also, I am the worst at getting ahead of myself. I get stressed about things that are going to happen way before they happen! Try to stay in the moment, prioritize your energies, and allow time in your scheduling to account for unforeseen physical reactions (like going to a wedding, but skipping the reception because you slipped off your shoes in the car and can't get them back on your swollen feet!).
Prioritize. Delegate. Learn to say no, but take the chance on saying yes if it is really important!
Thank you for the encouragement to reach past my fear and experience some major milestones in my loved ones lives. I avoid certain activities also because I don't want to explain that I can't go any more, that I've "hit a wall". The pain is easier to get used to than the looks on people's faces when I remind them that I'm kinda sick. I can't blame them for wanting to believe that I'm fine now, because I want to believe that more than anything.
You reminded me that life isn't either all good or all bad. I'll enjoy as much of the upcoming preparations and festivities as I can, which in the end will be much better than bowing out and not participating at all. Thanks too for reminding me to pay attention to my limitations and build in time for rest. So many details. RA takes more planning than any party!