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.
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.
My left hip was completely out and incredibly painful. I could barely walk just a few feet to get to my bathroom.
Sure enough, from there, my feet were in total CRPS pain and I was having the total body jolts, chest pain, sweats, crazy heart rate, smell aversions, and I just knew it was starting.
Things continued on through Thursday — and then worsened.
Thursday night, I suddenly couldn’t eat. I was incredibly nauseated with stomach cramping and even more unpleasant stomach issues. This has been an ongoing thing with my CRPS flares for the past few months.
All of these symptoms have come and gone through my flares in the past few months in fact.
I truly haven’t had any relief and been able to eat and keep it down until last night with this latest flare — which is particularly a problem as I now also have steroid induced Type 2 diabetes. Of course, I haven’t been taking my diabetes medications while I haven’t been eating but the blood sugar roller coaster of being unable to eat has still been really unpleasant.
I have never prayed a blessing over some grilled chicken and potatoes like I did that plate in my life. BLESS.
Finally, this morning, ten days after all of this started, I’m walking really slowly but I’m walking.
I’ve eaten a small simple meal and kept it down.
I had a great chat with my precious friend Heather a bit ago.
I should have our Christmas cards ready to go out today or tomorrow — one of my favorite things.
I’m not a 100% — part of the spoonie life is knowing sometimes that IS just life — but I’m so grateful to feel like me again.
I don’t write these posts to be a bummer at all. As I always say — because it’s so true — I have a beautiful family who are so good to me, just amazing friends, a fabulous Hippie Hut my husband works so hard on constantly, and the best life.
I just truly feel that sometimes sharing what these spoonie experiences are like can:
- Be much more helpful than a generic awareness post in helping healthy people understand what it is like to live with “invisible” and chronic illnesses.
- Let my fellow spoonies know that they are definitely not walking alone.
- Share with everyone that — even when it’s rough and looks dark — God’s got this. Goodness knows, I could never walk through this without His grace.
It’s only through sharing our stories in difficult times that we make something beautiful from the darkness.