I'm learning how to live with kidney disease, and I've figured out a few things along the way. I'm no expert, and what works for me won't work for everyone. But here are my tips for anyone who is forced to live with a chronic illness:
Be #1: Think of life as an airplane ride. Remember those pre-flight safety reviews we all ignore? The flight attendants tell us that, should the airplane lose cabin pressure, we should secure our own oxygen mask first before helping others. Makes sense. We won't be very helpful to others if we pass out from lack of oxygen. I put my oxygen mask on first every single day. Only then am I able to be there for others.
Talk: Let others know what's going on with your health.You don't have to share all of the gory details or overwhelm people with personal information. No one wants to see a picture of your 24-hour urine collection. I know this from experience. But it's OK to be open about your illness, to share how you're feeling, and to let people know how they can best support you.
Be a Sponge: Learn all that you can about your illness. Find credible online resources. Get copies of your medical records. Take a notepad to medical appointments, ask questions, and take notes. Never leave an appointment without having all of your questions answered. If you feel rushed, or if your doctor is not open to this type of dialogue, change doctors. Immediately.
Ditch People: Be willing to walk away from people who aren't good for you. This sounds harsh, but I can't think of a nicer way to phrase the sentiment. Living with a chronic illness means that you have less energy, less stamina, and less room for error. Don't let other people drain you emotionally. You don't have time for that.
Work the Plan: Follow your doctor's advice and guidelines. Cousin Johnny or Aunt Martha may have once thought about going to medical school, and they probably have great intentions, but the only people who should be making decisions about your health care are your doctor and YOU. Talk to your doctor, come up with a plan, and then follow it without fail. Take your medications every day. Adhere to dietary restrictions. Get enough sleep. Be willing to do whatever it takes to keep yourself as healthy as possible. And block out the other noise.
Be Gentle With Yourself: Understand that what you're going through is difficult. I have days when I'm frustrated with how much weight I've gained. Or I completely fall off of the low sodium wagon, then get angry with myself. These feelings and emotions are normal, yet my negative reaction doesn't get me anywhere. Beating myself up doesn't help me heal. The most important thing I've learned is the concept of being gentle and kind to myself. To be patient. To breathe. So follow my lead, and give yourself a break.