I posted on my Facebook page this week about a woman whose doctor asked her how many usable hours she had in her day as a result of chronic illness. It's something I've thought about, but not quite in those terms. As I've had to evaluate how I'm feeling on a particular day and try to decide what my body will allow me to do, I've realized how many hours a chronic illness like lipedema takes from me.
What do you do if you only have 6 usable hours in your day? Hours where you are able to work, have fun with family, run errands, clean your house, or see friends? That reality likely changes what you give your time and attention to. Hours and moments become precious. If you're like me, overextending those hours on one day means you have even less the following day. It also means that sometimes you're counting on those 6-7 hours but when you force yourself out of bed in the morning, you realize that your body has decided to cut those hours in half. And at least 1-2 of those hours revolve around the therapies or routines or self-care you must do so you can actually have that many hours in the first place.
Physically, you have less strength and stamina because of lipedema and whatever array of comorbidities you're also coping with. You also require more recovery time that you used to, and more than the average person should need. The guilt of not being able to do so much catches up with you and when you feel a little better, you tend to push yourself too hard. Or maybe it's not the guilt, maybe it's just the frustration of always feeling robbed of life's normality, of always sitting out, of always wishing you could do what you once did or what everyone else does. Whatever the reason, we find ourselves beyond exhausted and maybe in more pain.
A range of emotions takes you from sad to frustrated to angry to overwhelmed to hopeless. You aren't sure whether to cry or scream or just give up. You wish you had enough money to find the perfect surgeon and that you had a 100% guarantee that sucking all the diseased tissue out of your body would fix it all. You wish you didn't have to watch everything you eat and monitor your activities to the point that you wonder if OCD is kicking in. What you really long for is just one normal day where your illness didn't have to be the center of every single thing in your life. A day where you could just wake up without pain, decide what you want to do, and do it.
What I've come to realize through my own journey with lipedema and hearing from a few thousand women all over the world, is that sometimes a few of those usable hours need to be used just to allow yourself to rest and deal with those emotions. Your chronically ill physical body needs to rest, but you also need to allow yourself time to work through all that you're carrying emotionally and mentally. You don't have to keep going to be doing the right thing. Sometimes a few of those usable hours need to be dedicated to gentleness and compassion for your own journey so you're ready to make the most of whatever usable hours your body allows you that day.
