When Chronic Illness Takes Away Your Freedom to Be Spontaneous

I am a natural leader. From living independently, to starting my own business, to simply knowing what I want in life, I never wavered. I set my eyes on something, and grabbed it without hesitation. I was motivated, creative and had an endless supply of energy. This was the identity I came to know and love, before chronic pain.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Chronic pain, in my case at the hands of Ehlers-Danlos syndrome, took away the part of me I loved most: my independence and joy for life. My impulsive nature vanished the minute I realized I needed to plan my day in order to get the most out of it. What must you plan as an EDS-er, you ask? Plan to wake up exhausted, because your joints gave you awful aches all night, you tossed yourself silly and feel like you’ve run a marathon come 7 a.m. Your regular morning run around to get the kid fed, dressed and off to daycare feels like you’ve already fulfilled your day’s worth of energy and you need to fester up enough strength just to do your hair and makeup, to then hopefully get yourself to work. Yay, dry shampoo!

 

You plan to take a painkiller once you get to work, because you know making it eight hours on your feet in a bustling work environment will destroy your body. You have to suddenly be cautious, preventative even, in order to make it through the day. Your co-workers are amazing, and sympathize and offer help when needed, and you feel guilty that you’ve turned into a different person than the one they hired six years ago (full of gusto). Sometimes you forget that even a problem! Ha! You tricked even yourself into thinking everything is fine. Then, out of nowhere, you’re hit with an icepick headache or a tremor in your hand because you’ve been on and off the phone too much that day. Or that the second you finished your lunch, you feel an immediate urge to throw up. Or it could be that you feel like you’re 60 years old, when in fact you’re 34.

Your days are unpredictable – and not in a good way. Old me would have loved an impromptu dance in the pouring rain, or taking a beach day (wine and all!). Of course, new me can’t jump around in the rain for fear of damaging my knees, or injuring my spine. The heat makes my symptoms worse, blood pooling in my legs faster than you can say, “Cocktails!” The simple pleasures now require planning and an even greater acceptance that it just might not happen that day, and that’s OK.

Because though you’ve lost the freedoms from your old life, your new life is still full of hope. Full of people who support you and understand that what is happening to you is real. And they don’t give up on you, even though sometimes you feel like giving up yourself and surrendering to your bed. But there is always a silver lining: I am alive. And I will manage this. It may get ugly, but I haven’t lost my fire or my fight.