My Rare Diseases May Not Kill Me, But Sometimes It Feels Like They Will

When I was undergoing a tough treatment and reeling from the death of my God-sister, I was definitely down in the dumps. I couldn’t really walk and I was hooked up to an IV for eight hours a day. Not to mention that everything tasted like poison, I had no energy, I was emaciated from the effects of long-term antibiotics, and constantly throwing up mid-sleep because my gut just couldn’t handle the meds. This is enough to make anyone feel depressed.

But after I emerged from all of that, I started tackling my Lyme disease, dysautonomia and brachioradial pruritis, with a very healthy diet, exercise, stress control, sleep priortization and temperature control.
With POTS and Lyme, I had to realize how sensitive my health was to food, stress, exercise, sleep and temperature.

If one of the five aforementioned facets was “off”, I could still manage. But if two or more were off, I would definitely feel it whether it was fatigue, pain, swollen lymph nodes or joints, headaches, nausea and vomiting, stomach pains, or black outs and dizziness. So I had done (and am still doing) everything I possibly can to address these things proactively.

After much patience, my efforts seemed to be working! Generally, I was off all prescription meds and my energy level seemed to be increasing. Things were looking up after years of trying SO hard to implement lifestyle changes.

Was my health perfect? No way. But everything I was doing was worth it. And I feel like it could be worse; I’m not necessarily fighting to live. I’m fighting to live the life I’ve envisioned for myself. Two different things.

Then, my brachioradial pruritis flared and like a domino effect, everything fell apart.

First, it interrupted my sleep. But after two months of interrupted sleep, I was to the point where I was not sleeping more than three hours per night. I was clenching through the pain in my sleep, so much that my teeth enamel were worn down. I went to the dentist to get a night guard which didn’t help the jaw pain that turned into headache pain.

The no sleep was catching up.

My lymph nodes were swollen, I started having flu-like symptoms, not to mention the neuropathic pain from the BRP was relentlessly plaguing me. In the course of three weeks, I went to my neurologist, dermatologist, PCP, dentist, acupuncturist and chiropractor. After a few months, nothing they had offered helped and I began to feel hopeless. The psychological effects of no sleep were causing hallucination-like states, depression and immense pain.

I would cry, call my mother and say things like “I am not supposed to live this way,” or “I don’t want to die, but I don’t want to live like this.” I had tried everything- every pain killer available, every nerve blocker in existence, every specialist you know of, and even CBD– so this dark tunnel of hopelessness started to seep in.

When even your specialists say “Well… wow. You really have tried everything,” it’s normal to feel like you’re at a dead end (at least I think it’s normal that I feel this way).
It was at this low that I concluded that I am destined to live life in relentless pain that won’t kill me, but it feels like it could. It feels like it wants to.

But then, after months of next to no sleep, I get a glimmer of hope as the flare seems to lessen intensity and I go from 3 hours to 5 hours of sleep. Then, 5 hours to 7 hours.

And while it’s not perfect, it’s enough hope to keep me from being completely disheartened, feeling hopeless.

It’s these small times when I get relief that I am able to see the beauty life has to offer, and I am reminded of what a gift life is. And for now, I am still fighting every day… not for my life necessarily, but for a life I’ve envisioned for myself. And that’s a goal worth striving for.

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