a tale of a ten day spoonie sick.
By: Miranda Herring
Tags: Crps, Spoonie, Crohns Disease, Christian, Chronic Disease

Photo by Nastya Dulhiier on Unsplash

Just today, a young spoonie friend — who has recently, sadly, received several serious diagnosis she is having to adjust to suddenly — made a post on Instagram, saying that three different doctors had all told her something to the effect that she could still have a “good life” or a “decent life” with her sicknesses — and she was understandably very upset.

As we all were when we were early in our disease processes, she was adamant that she would NOT be living a sick life but rather would fight through this and would have a “normal” life. As I read again through her diagnosis list and looked at the medical equipment she is already requiring, I knew immediately that there is absolutely no way that will be in the cards for her, as much as it hurts my heart.

I also know exactly where she is coming from. Again, we have ALL been there. We all went through the early stages of this autoimmune hell where we just KNEW we were the one case it couldn’t take down. It’s good that she has that fight in her. It helps. It really does.

For the longest time, every single time I flared, I was going to get back up, get well, fight back, and somehow find the miracle that made me my “normal” self again.

What have I found instead?

Autoimmune disease compounding autoimmune disease. Flares leading to worsening stages of existing diseases. Even more symptoms each time.

Celiac leading to RA leading to CRPS which then turned systemic and led to dysautonomia with Crohn’s bringing up the rear. Some other diagnoses and fractured feet and many emergency surgeries and sepsis and months of IV antibiotics and diabetes thrown in there.

But what have I also learned?

Though “normal” was never coming back, I may get sick as hell and weak and tired and cry and hurt and throb and cramp and yack and just about anything else you can think of. . . but I always find the fight to get back up and grab Ellie the cane and keep trying.

This is the tale of the past ten days and hell’s own autoimmune flare.

What Dreams May Come

So, Saturday a week ago (December 5th), my husband was notified that he had been exposed to COVID at work. He is abundantly cautious about mask wearing and social distancing — but, of course, it was still very upsetting and necessary for him to quarantine downstairs with Sara and I upstairs until his testing on Wednesday (he was negative — praise the Lord — but it was very unsettling for our family in the meantime).

I was still recovering from a nasty CRPS flare — and with them I tend to have vivid nightmares.

A recurring nightmare that I’ve had — just since the start of COVID in the spring — involves being on a train when another train is about to crash into it. Strange and terrifying.

Well, Saturday I was so so upset all day and I first had a nightmare that involved being trapped in a morgue — and then woke up, awfully shaken.

I eventually got back to sleep — and had a nightmare where I had a surgery that didn’t go well and my whole family was in the hospital waiting for me but I couldn’t find them. I woke up, covered in sweat. I changed clothes and got settled back in. I normally would have just stayed up — but I was exhausted with the awful day and the flare.

I finally got back to sleep.

Then the train dream came. . .

I was trapped on the train. The other train was coming, about to crash into us. This time, I wrestled a door open and jumped off. . .

So damn vivid was this dream, that I leapt off the dang train in my sleep and off the bed in my sleep and woke up as I smashed into my WALL and landed on my floor amid the pile of books that are stacked against the wall, having also struck my left hip and leg HARD on the floor as I landed.

WOW.

Never in my life have I done ANYTHING like that.

I looked up and my fierce guard weenie dog and guard cat were still sitting exactly in their spots, necks craned, looking at me, like, “why are you disturbing our slumber?”

I finally gathered myself and got back on the bed.

The Immediate Aftermath

As one would expect, on Sunday and Monday, I was really sore. It was unpleasant to say the least.

However, I was getting around and I was okay.

Still, I knew the worst was probably yet to come.

For a person with CRPS, a major trauma to the body — like that type of injury — will likely bring on a flare — and I was already coming out of one.

So I was bracing myself for possible trouble.

I didn’t have to wait for long.

Oh, On Tuesday. . .

When I woke up Tuesday morning, there was no question that the CRPS was so so angry.

An aside: when I write about my CRPS, I feel led to post a quick refresher on what it is as it is so unusual. These graphics are just a few basics. I have severe CRPS with organ involvement. Unfortunately, that has brought dysautonomia with heart rate disregulation, the stabbing chest and abdominal pains, taste and smell aversions, headaches, sweats, anxiety, full body jolts, burning on the tops of my feet with ice cold pain on the bottom, assorted other random symptoms. . . just the whole bag of horrors.