First and from the heart: I am so sorry. Long-term diseases that feel unmanageable create a quality of life that just sucks. Your daily life is harder, your long-term goals are harder, relating to friends and family is just… harder. And even worse? You feel weird talking about it.
But the theme here is that it’s okay. You can do this. And your spouse and family can help you do this. Here are three powerful ways to manage an unmanageable disease:
Write Notes About Everything
Start by keeping a daily journal of how your body is doing. Are you trying to eat different foods? Are you sleeping more, or less? Anything that has changed and anything that you’re trying to work deserves to be written down so that you can address it with your doctor.
Not only will this help you when you go in for your next visit (see the next header), but it will also give you a sense of purpose and a more keen understanding of how what you’re doing affects your body on a daily basis.
Make it part of your routine to write down updates before you head to bed. Get a special notebook and a special pen and carve 3-5 minutes out to track how you’re feeling each day.
Bring Those Notes to Your Doctor
It’s a common phenomenon: you make your 6 week follow up appointment, track your your ups and downs, show up in the office, and your mind goes completely blank. So frustrating!
Even if you don’t have a memory problem, the excitement and finality of being in the office might make you forget what it is you want to talk about, or you might be distracted by a recent problem. Regardless, you’ll see the doctor whisk out of the room after your 10 minute appointment and suddenly the really important thing you had a question about pops back into your head and there’s little you can do about it.
It also helps you stay on course. I once had a doctor who spent most of our time together talking about books. By politely pointing back to my physical prop (a hand written list) I got him back on track to answer my questions.
Finally, health issues are sensitive subjects. I’ve cried on many occasions. You want to make sure you get your point across if you end up too emotional or upset to communicate the old fashioned way.
Lower Your Standards & Celebrate Being Alive
This might be a little controversial and annoyingly positive… but as Sarah Wilson discussed, with some diseases you might just be at 80% the rest of your life. The real unhappiness lies in holding this golden image in your mind of “How You Should Be” and comparing everything to whether or not you feel 100%.
To be honest? I range between 60% and 90% of “feeling my best” most of the time. But if 60-90% means cooking and eating whole foods, caring for my husband, and running a small business, then I’ve decided to be pretty damn happy with 60-90%. What would I even do with that extra top 10%? Probably more walking, and maybe I’d be more excited about the thought of having children instead of terrified. But that’s okay. I have my 60%, but others have 10%, or they’re dead with 0%.