Chronic illness and pain are serious business, and they take up a good deal of our time. Often, when someone asks what I do I say, “Well, managing my health is much like a full-time job.” It might not be what they want to hear, but it’s true (as you well know, too!).
But we also need to understand that it’s not all we are, nor is the care we give our illnesses all we need. And right after the first long weekend of the summer season is a perfect time to visit “the rest of you” and me – in other words:
What are you going to do for fun this summer?
Fun?! Enjoyment?! What?
Yup. Fun! Enjoyment!
Humor is helpful for us to cope. Laughter is lovely – and also gives us a better outlook on the world and our illnesses. And rest, oh, my, yes, rest is absolutely important for us. A good book (maybe my new one, Don’t Panic!: How to Keep Going When the Going Gets Tough? http://www.amazon.com/Dont-Panic-Keep-Going-Tough/dp/1616369493/ref=sr_1_1?s=books&ie=UTF8&qid=1464636617&sr=1-1&keywords=Maureen+Pratt ), a soft chair, a glass of something cool (lemonade is my favorite) – it doesn’t have to be elaborate to be restful!
We plan our doctors’ visits, the times we take our meds, and all other aspects of our lives with illness. Try planning some fun this summer, too. Dedicate a few hours to idling. Kick up some sand, if you can. Or just listen to birds chirp, trees rustle in the breeze.
Make time for the rest of you this summer. You’ll be glad you did!
A woman asked if she could talk to me. I said, “Sure.”
The conversation that transpired went something like this:
“For $500 and 4 weekends, you could cure your lupus yourself.”
She was persistent, but I’d heard all of the arguments before. “Your doctor doesn’t know this…” “You’re doing the wrong things…” etc. Finally, I just said, “Thank you. No.” and walked away.
I was very tired at the start of the conversation, and even more exhausted as it continued. But, I stood firm because I really look upon this sort of thing as a kind of preying on the vulnerable, not a helpful way to give compassion or care. Besides, as I asked questions of her, it became clear that all she had was a spiel. No solid science, but a mighty hefty price tag!
I’ve gone to my doctor before with one or the other “miracle” cure, just to get his take. My doc is very knowlegable and would like nothing more than for there to be a cure for lupus and arthritis that he could give to all his patients. But none exists. It’s hard for the “miracle cure” crowd to believe this, I know. But I’m not being delusional. I’m being realistic – a sure sign that, although I am severely limited due to illness, in this instance, I’m still thinking correctly!
$500 is a lot of copays, wigs, and other necessities.
I think I’ll try being a brunette!
I know first-hand that dealing with the loss of a loved one is not easy. My brother died before he turned 40, and a good friend passed recently – she was younger than I am. These holes in our hearts (truly, they are holes) will never quite fill. But with faith, time, and love of good people around us, we will heal enough so that days like this one, when we remember, will not be quite so horrifically painful.
When I lived near Washington, D.C., Arlington National Cemetery was right across the road. I could hear the crack of the 21-gun salute as fallen warriors were laid in their graves. I saw the mourners, ones, twos, and sometimes groups, walking and sitting around the holy ground.
Today, my prayesr are with each of you who have sacrified a loved one in the cause of liberty. And when my tears flow, as they will do at times, for the losses I’ve felt, a part of them mingles with yours, too. And in our fellowship, may we each find a little more peace,
If a flare or excessive pain makes it difficult to reach out to friends (or post on any of the social media sites), we can become distanced very quickly. Beyond the walls of our home, life goes on. And when we emerge from our flare, it might seem as if we’re getting to know our friends or coworkers all over again!
Rebooting relationships isn’t easy, especially with people who don’t know us really, really well (and care about us really, really well). Looking at the situation from their side, it’s hard to get used to the fits and starts of friendship with someone whose health doesn’t allow them to be consistent in communication or physical presence. Looking at it from our side, when we’re in the trenches fighting to get out of a flare, we have precious little energy for much else besides that health-centered battle.
The main way that I stay emotionally and spiritually sanguine about life with lupus during the really bad, isolating times is through faith. No matter what the health situation is, as long as I remain in conversation with God and ask for His comfort and support, I feel at peace. This helps me reconnect with good friends who I know will be there even after a long time of disconnect, and it helps me not worry about the more fragmented relationships that probably were not strong enough anyway. The ups and downs of lupus or any other chronic health condition are stark facts of life, and will not be something everyone will be able to handle. But God’s love, presence, and strength are ever present and ever active.
In a tangible way, if it is possible during a flare to just touch base briefly with good friends and other loved ones, this can help make rebooting swifter. If it is doable, asking for a weekly update from work can help keep you at least superficially in touch.
But the real connection happens when you emerge, feeling a bit better and hopeful for a time when you can enjoy the company of loved ones again. There’s nothing like a very heartfelt, “I’ve missed you! I love you! I’m so happy to be back. What’s been going on in your life?” to reboot and refresh all those relationships that make life a journey of joy.