Some of our readers have sent us some great links about dealing with a chronic disease by a caretaker. I can certainly empathize on all fronts since my writing began on this topic so that I could understand what was happening between Jax and I. We’ve been managing pretty well lately even with my dramatic ups and downs these past few weeks.
Here’s the first link. It starts as a letter called Dear Sasha (that’s me)… but a great blog posting about life in this f–ed up cycle: Dear Sasha, Thanks for reading! That’s just how life is; we just have to take it easy. With only 4 years of living with and experiencing the frustrations of this disease, all my annoyances somehow seem funny (sometimes). I find humor with all these little quirks in people whom I’ve had to deal with and who’ve had to deal with me—difficult person that I am, with or without RA.
1. My super-laid-back husband—when is he going to get fed up with the sickly wife?
2. My too transparent rheumatologist, who’s constantly staring intently into his PDA during my visits—what’s in there, I wonder?… Also she mentioned that she liked a part of my blog entitled Living with Chronic Pancreatitis:
“… but it’s pancreatitis that scares the living shit out of me and makes me get on my knees and pray.” -Sasha
The next one By Jessica Merritt called “50 Communication Tips and Techniques for Caregivers” some highlights include: #20: Maintain a comfortable distance: Although caregiving may have you in close contact often, it’s not always comfortable to communicate in close quarters, so keep your distance.
That’s a riot! Yes, you had better stay clear of me if I haven’t taken my meds today. I will certainly be snippy and on the attack!
Also #24. Take a deep breath: Try deep breathing to relax before a conversation, and take deep breaths to calm down if the discussion turns difficult.
You’ll definitely need to take a deep breath before dealing with me on a “bad” day. Who knows what kind of mood the pain has put me in. You better hope it’s a good one before saying something that could be taken the wrong way.
Okay, but to be fair the last portion is GREAT for tips on how to deal with doctors. These are important items to communicate properly with him/her. I’m off to catch up on my very behind work.
Love, Sasha xoxo