Living with a chronic illness is hard to explain to the outside world. I have hypermobile Ehlers-Danlos syndrome (hEDS). I find I have three kinds of days.
My favorite days are simple: no dislocations, no subluxations, mind engaged and body somewhat agreeable. No day is 100 percent pain free. No day starts with me jumping out of bed happy to greet the sun, but some days fortunately come after a decent night’s sleep and a dose of meds – these are what I’d call my “normal.”
These are my favorite days. They come and go and I enjoy myself, my family, my life and I can deal with the moderate pain and brain fog and exhaustion. Sometimes on these days you’ll see me walking slowly, using a cane or even a wheelchair. Or I may appear totally fine. I may be smiling. I will have my hair done and some makeup on and I’ll be happy. No day is ever fully pain-free, but I push through.
My middle days are actually the high pain days. The days my hip decides to dislocate, the day I can’t get out of bed because I’m so tired, and the day my brain feels like mush from the brain fog. Those days I can cope. I take pain medication. Sometimes I sleep and I give in to the pain and the exhaustion, and I just let the world slip by. Sometimes sleep or pain meds are not an option so I go on with life.I may be out and about in a ponytail, jeans and a comfortable shirt. I may not be smiling fully but I’ll tell you I’m fine. I have come to terms with the idea that I am going to have one of these days at least once every two weeks when life catches up to me. As much as I can I get into pajamas, let the dishes sit, let the laundry go, let the kids watch TV and let my husband take over fully. I let go. I get as comfortable as I can in bed, sometimes let the dog lay on me, sometimes not. I use a heat pad or an ice pack. I use my tens unit. I soak in the tub or just melt into pillows. I let my body rest and mostly sleep to help it heal as best it can. These days sound miserable to the outside world and usually these are the days people feel bad for me. Others offer to help and send me well wishes, but these days aren’t as bad as you’d think. On these days my mind is able to stop. I binge Netflix, movies and just don’t think at all.
My worst days will surprise you. They are what I call the in-between days. Today is one of them. I’m tired and have aches. I don’t have severe pain, but I’m not feeling good either. To give you an idea, it’s like day one of the flu. I’m not feeling good, but I’m not feeling so terrible that I can do anything about it. I’ll take my medications and try to sleep, but my brain is still going strong. It feels like nothing helps on days like today. I have errands to run, things to do, but my body won’t let me. It’s as though my brain and my body are no longer connected.
I would love to do some shopping as I need new sneakers and some new summer clothes, but my body won’t tolerate the drive or walking — let alone the shower and getting ready. TV isn’t holding my attention long enough for me to really get into a show or even zone out.
Sleep is out of the question. I slept last night and I can’t seem to force a nap even though my body feels tired. My brain won’t shut down enough for that. I’d love to lay outside in the warm sun and enjoy the weather, but I don’t have anything comfortable enough to sit or lay on, and I don’t feel up to heading somewhere public to lounge.
I don’t have it in me to be social today. I don’t want to text or even pick up my phone. But my brain won’t stop going. I can think of a million things I should be doing, need to do, but I can’t find the energy to even open my email and read messages and respond. My brain says, “Go, go, go,” but my body says, “Yeah right!”
I want to play a game with my kids, but sitting at the table sounds like torture right now with wooden chairs and noises from all around. I’d love to visit a zoo, or even a park, and enjoy this weather. However, I can barely type this, so taking a shower and getting up to go isn’t going to happen.
These days are the worst because they make me sad. They fill me with regret for all I’m not doing and they make me long for the days when I didn’t feel this way.
They are the hardest to explain to anyone outside of my EDS support groups. How do I explain to someone who casually asks, “How are you today?” that I’m not OK – but I’m still here? On days like this, time moves slowly. I find myself wishing I could sleep, but I know it won’t happen.
Days like this make me depressed, but I know I will be better once this day is over.
Days like this make me angry. Angry I have this condition. Angry at a world that doesn’t understand invisible illness. Angry for no reason at people who are out enjoying a fun day while I struggle. Angry at doctors for not finding a cure or giving me better ways to cope.
But in the end days like this give me hope. I know today is going to suck. But knowing I can get through today means I can deal with the other stuff too. Tomorrow will be better. I’ll have a good day because I’m struggling today. I’ll make it through today and live to see another day with my family and friends.
Days like today give me compassion. Compassion for those who are fighting right along side me. Hope for all of us that someday we’ll find a better way to handle days like today.
Knowing today is my worst means tomorrow won’t be so bad. I’m hanging onto that like a lifeline. Tomorrow I’ll be able to enjoy things again. I’ll be walking and talking, living the way I want to be. That makes today bearable.