As a part two of Friday's post - I want to touch on the concept of setting up contingency plans, because that's another integral step to making sure that you're living well, emotionally.
Every lupite's been there - you make plans, you try your best to keep them, but the day of, you feel awful and have to cancel. And once again, you're bummed. You're actually more than bummed - you're devastated. Not only do you feel crummy, but you feel like lupus has won again - stripping you of your ability to do anything you want to do when you want to do it.
I've experienced as many cancelled plans as the next gal - but I've found there to be a distinct difference between canceling my plans the day of, and anticipating that fact and then setting the stage for the possibility in the days preceding. Sharing (and even acknowledging to yourself) that you may have to bag out should make you feel a little more responsible, more assertive, even pro-active. And you should be empowered - as though you've anticipated lupus' little antics, and you're one step ahead of that sneaky devil.
Because it was imperative for me to preempt my cancellations, so that I didn't feel so blindsided when I couldn't make an event, I adopted a few golden rules when making plans. It did wonders for my attitude toward lupus - and I believe it made me stronger in the face of the disease. I hope these rules keep your positive momentum going, too!
1) When making plans with friends, always, always, always mention that you might have to cancel. Once it's out there, you don't feel half as bad canceling as if you hadn't said anything at all. Think about it - you're not admitting defeat - you're merely managing expectations. Yours AND those with whom you have plans. They'll thank you for it - and in fact, may even make a suggestion that is a little more accommodating for you and the limitations of lupus. Which brings me to rule #2:
2) If someone gives you an out, take it. If you know, deep down, that you shouldn't be going out with someone because it will really tax you - and then that someone says, "Hey, why don't we take a rain check?", DON'T be all lupus-like and say, "Oh, no - really - I'm fine." You're fibbing and you know it. (I can say that, because I was a professional fibber in my early lupus days.) And you're just saying that because you don't want to lose face. But believe me - when you go out and make yourself sick and have to pay for it for the next three days, you HAVE lost face. But if you preempt the exhaustion, and prevent the disease from acting up by calling off your plans, you're nothing but a winner. Don't be convinced otherwise.
3) When you do get out, give yourself the opportunity to leave early. Again, this is as easy as saying, either a few days before or at the beginning of the evening, "I may have to leave early, but I'm so glad I could come for a little while." Once that's done, you don't have to feel guilty or sheepish about slipping out the door before you turn into a pumpkin. You've set the stage - and you've set the expectation...especially for yourself.
Note that this may require some logistics - either drive separately, coordinate with a friend, or prep your driver that an early out may be required. For about 3 years straight, anytime Johnny and I would go out, we'd arrive at our destination, take two seconds to assess the status of my fatigue, pain, etc., and then agree on a time to leave. Half the time, Johnny would usher me out the door early. And every once in awhile I'd give him the nod that we needed to leave earlier than planned. No matter what, it was always understood that if I started to fade, we'd head home. Immediately.
(And now a very specific example: A few days after I was released from a week-long hospital stay, we agreed to meet up with our friends to watch a football game at a bar. I was still really weak, but I really wanted to go. It was my first real outing post-admission, and I had my heart set on showing my friends that I was still going strong. My sister, who had no intention of going along, got wind of the fact that we had these plans, and dropped everything to come with us. She knew I wouldn't feel up to staying the whole time, knew that I'd probably push myself to stay longer than I should for my sake and for Johnny's, and knew that I was in no condition to drive separately. So she came along - suffering through the first quarter of a football game that she had no interest in watching - and then lovingly helped me out to the car and drove me home after less than an hour. That was all I could handle - and had she not been there, I definitely wouldn't have left when I did. )
4) Create a safety net - Whether it's arranging a ride to or home from work, asking a friend to watch for signs that you're doing too much, or hiring a babysitter to make sure you get a nap, even if your kids don't (hypothetically speaking, of course!) - set yourself up to succeed. Living well, despite your illness requires forethought. It requires you to be strategic. It requires you to be creative. But it doesn't require a life full of pain and suffering.
Taking into consideration Friday's post as well - take the steps to live spontaneously, so that you can enjoy life when and if you feel like it. And set yourself up with a contingency plan, so that you don't let the guilt of bagging out get to you. You have to manage the world around you in order for you to live the way you need to, despite your illness!