It's hard. It's hard to wake up every day and feel your body ache with pain. It's real, it doesn't go away. It sits on your shoulder as a constant reminder that you're sick. You're sick and until you find a treatment that works, you're stuck.
When your feet grace the floor from the top of your bed your legs feel heavy and wobble when you rise. You're weighed down like sandbags dragging from your ankles. Lightheadedness, bursts of colorful stars cloud your vision until you shake them away and regain balance. Laboriously dragging your heavy, worn out body throughout the house, searching for the next place to sit. "This is exhausting" you think to yourself. The fatigue overwhelms you, the throbbing in your head is seemingly prominent. You wince when you feel the nerves in your body twitching involuntarily. The pain burrowed deep in your muscles surfaces, as a spec of water runs down your cheek.
You try to read the distract yourself from your own body. You fail because your mind is so fuzzy that words shift and become incomprehensible. This all consumes you, physically and emotionally there seems to be no escape. There's just that dumbbell of pain stagnant on your shoulder. It forces you to write your pain out. That leaves you to this moment, when the words are said and you are able to go on. I continue, so at the end of the day I am able to smile. Not because of false optimism, but simply because of the belief that this is not forever. Pain is temporary.
I've unfortunately relapsed. I felt 95% better six months ago, and now I've fallen back down to anywhere from 25-45% on a good day. I really felt like this illness was behind me and that I could go back to school and work towards my degree, get a job, and make a new group of friends. All of that is put on hold again. It's heartbreaking.
How do we deal with relapses? How do we find the perseverance to keep pushing forward? Most importantly, how do you have the financial means to get better again? This illness has cleared out my college savings and left my family struggling. It infuriates me that people with Lyme Disease are not treated like patients in a typical medical setting. All doctor appointments, supplements and some medications aren't covered under health insurance. How can health professionals deny this disease when there's tangible, living evidence that this illness causes rampage throughout every single part of the body? One day we will have the answers to these questions. Until then the best we can do is be open minded to everyone's situation and educate ourselves.
-Dani
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