Kick back and grab a drink. It’s time to settle in for a little story about that time I decided to take a “vacation.” It’s laughable. Spoonies don’t get vacations. We may travel, but there’s no rest and relaxation to it. We’re sick no matter where we go and what we do and more likely than not, leaving your home, abandoning your diet and doing a lot more than normal in a foreign environment is the least relaxing thing a person with MCAS, among other chronic conditions, can do.
I decided to test my mettle this summer by taking a 1,400 mile round trip drive to the Upper Peninsula to pick up my nephew, whom I hadn’t seen in 7 years because of the total separation I made from my family. My brother blocked access to his (at the time) 3 children when I put an end to his abuse. While it’s a complicated tale I’m not willing to get into and frankly I don’t want to draw any familial attention to myself, I will say it’s a control tactic very common to people with NPD.
Our plan was to leave on June 14, drive the 12 hours to Marquette to pick up Tom and take a few days to do some sightseeing on the way back. Once home, Tom would stay with us for 3 weeks before we would meet his mother on Independence weekend in Milwaukee.
Travel is hard for me now, in multiple ways. In recent years, because of my health, I have developed a lot of anxiety about travel and even if I didn’t, it’s still a source of stress. Add to that the fact that we moved six weeks before and I’d been doing a ton more than I should to wrap up our move and be prepared for vacation. I really should have known we were in for a disaster.
Off to a Bad Start
My brother got wind that I was picking up Tom the night before we were to leave, because I messed up and told the wrong person. Being the expert NDP manipulator, he said a bunch of stuff about me that upset Tom, who sent me a screenshot of his messages to get some answers from me. The message was a bit confusing to Tom, but crystal clear to me and I knew immediately my brother’s intention was not only to turn Tom against me, but it was also designed to trigger me the exact same way he did on the last day he will ever see me again. Even though I could recognize it for exactly what it was, it took hold of that tiny bit of travel anxiety I was dealing with and I was triggered anyway. I hardly slept that night.
The trip turned out to be brutal. I started into a huge, multisystemic MCAS reaction almost immediately, despite having taken all of my preventatives and increasing dosages wherever there was room. By the time we arrived in Marquette and I was expected to eat restaurant food with Tom and his mother, who I was very much looking forward to spending time with, I was a dizzy, dazed and confused mess.
So Much for Sightseeing
Things only went downhill from there. The night we picked up Tom, he and I decided to take a dip in the pool. If I hadn’t already been reacting, who know what would have happened, but the chlorine turned me into one huge mass of hives with anxiety and I wasn’t having much luck getting things to quiet down. It turned out spring had just hit in the UP and it’s quite likely it wouldn’t matter what I did. The pollen would take me down even if I could have tolerated the unapproved foods, chlorine and air.
We ended up rushing toward home the next day and did and saw little, yet it was all still too much. We made it to Toledo and none of us could go anymore. We ended up in another hotel room. My hives were constant; I could hardly breathe at times, eating was pure torture and my histamine overload grew and grew. Add to that the familiar climbing pressure in my head, dizziness and the onset of migraines and dislocations and I was hard pressed to get any rest that night. By the time I got home, I was unable to stand upright without significant difficulty and my GI system was shutting down. I did my best to relax through the week so I could go to the Pride festival that weekend.
These instagram posts from this period fill in a little more detail, including my one and only actual sightseeing photo:
I ended up going to Pride in my wheelchair, which of course I hate. I didn’t really feel well enough to go, but I’d gotten the kid down here and he was really excited about it. Knowing I’d probably not get the chance to do much else with him, I forged ahead.
Of course it did me in completely and the next day, I ended up having a meltdown caused by anxiety, over-stimulation and pushing myself way too hard. I ended up scaring poor Tom, who I hadn’t even thought to warn that this could happen. I have a feeling I didn’t scare him half as bad with my temper tantrum as I would a few days later.
Then the Real Fun Started
The following Tuesday, we had just finished dinner when I got up to put my plate away and refill my glass. My husband asked me if he could get it for me, but I just shrugged him off. Even when having difficulty standing, I can only sit so long. By the time I made it the fridge in our tiny galley kitchen, I felt it coming on. Strong, like I had no chance of making it to a chair. I recognized the shaking, the heaviness of my limbs, the shooting pain at the top of my head and a wave of heat and dizziness that was quickly eating away at my vision. “Oh, fuck. I’m going down!” I called out. I tried to brace myself on the cabinets as I slid to the linoleum.
Usually lying flat is just what I need. The darkness begins to recede, the numbness drains from my limbs and the world goes back to standing still. I kept waiting for it to clear and realized it was getting worse, not better.
“Not better. I need a pillow,” I tried to say, pointing at my legs. It came out all wrong. I mumbled and stuttered until I managed to make myself clear. I needed to elevate my legs, but I’d hoped my husband would bring enough for my head. He Didn’t. My muscles grew stiff and the shaking grew more apparent as I fought against what I was feeling.
I began to seize, bucking against the linoleum covered concrete. As if controlled by voodoo, my head began jerking my chin from right to left and back again, twisting cruelly as my shoulders joined in. One leg rose and curled in on itself and kicked at the fridge. My shoulders bucked, slamming first one and then the other into the linoleum, head flying with it. My arms joined in, making internationally understood rude gestures at the cabinets and fridge on repeat.
I was aware of my husband and Loki at my feet. I was aware of Tom behind my head, watching with wide eyes and asking if he should dial 911. “No-o-ooo” rattled through my teeth as tears rolled down my checks. I felt vulnerable and exposed, half ashamed and half terrified by the voracity of the attack, but I knew it wasn’t anything close to what Tom was experiencing. I didn’t want him to see me like this. I didn’t want him to see anyone like this. I still wanted him to believe in the Easter bunny and unicorns, not fear for the possibility that someday he could possibly become me, though being my half-brother’s son, he carries only a fraction of my genes.
I finally realized as I was flailing around and beginning to wonder if it would ever end, that my concern for Tom and overall discomfort of seizing on the hard ground was causing me to attempt to control it. Attempting to control my muscles during a dystonic attack is like trying to contain a tornado. It’ll only make the destruction more violent.
It’s not always an easy thing to do; to relax into something terrible and strange for which you have no control. It’s something you learn how to do when you realize it’s the only thing that helps. Finally being reminded of this fact, I willed the tension from my body. Slowly, one by one my muscles began to listen and respond and sure enough the bucking became rocking until finally everything stilled.
I could feel every last buck and spasm. My head and/or shoulders had been thrown against the concrete repeatedly, my arms and legs had flailed into the fridge and cupboards. Every muscle was screaming out in pain. My spine and hips were on fire and when I attempted to role over so I could try to stand, I realized not everything that dislocated had been a simple subluxation (popping right back in on its own). I set to jerking them back in place as people and cats milled about uncomfortably.
The linoleum felt as unforgiving as the concrete beneath it and I couldn’t seem to muster the strength to stand. I dragged myself onto a pillow to protect my knees from the unforgiving floor. I still couldn’t get up. I began using the pillow to slide my way to the carpet and the living room beyond. I laughed weakly as I collapsed over the pillow. “I’m a dumb ass. Go get my wheelchair, please.” Feet disappeared and eventually arrived with the wheelchair that had been packed away in my closet.
When my husband got me tucked into bed, he told me both cats had been by my side the entire duration of my dystonic crisis; Loki at my feet with him and Rocket by my head with Tom. In retrospect, I’m glad I got to experience what is was like to have a health crisis surrounded by people I love, though I still regret bringing Tom to the freak show.
After I got settled, I called Tom in and explained what happened, assuring him it was not a fatal condition and hardly ever happened. I thought I had convinced him. Still, he chided me several times during the remainder of his trip, “Don’t die on me, now.”
When we called the doctor for an appointment the next day, the scheduler told my husband to take me to the emergency room. He didn’t even need to relay the message. “I’m not going to the ER,” I said loudly, so she could hear.
The doctor called back 10 minutes later and I knew they had gotten him out of a consultation just so we could relay to him, once again why I wouldn’t go to the ER. It goes something like this: 1. We already know they aren’t epileptic, so the ER cannot do anything for me and 2. I don’t go to the ER unless I know for sure I’m dying. ERs have hurt me far worse than any other department. ERs may be solely responsible for my medical PTSD. 3. I DON’T DO ERs.
Once we got that clear, he booked me an appointment the following week.
That weekend, my husband took Tom home alone while I finished my “vacation” in bed. We’d only made it two full weeks. I don’t know how my husband did it. I know he was just as exhausted and worried for me as I was for him.
In light of everything that happened, it’s past time for me to understand that the days of vacations and long visits have passed me by. I try to remain hopeful that things will continue to improve with my MCAS, but this vacation proved how vulnerable I am still am outside of my own environment. It also showed me how ill-suited I am to dealing with change, the negative emotions that are inevitable when dealing with my family (even the good portions) and the demands and energy of young people. I simply can’t do these things anymore. It took me years to accept the limits of my existence, but now I am really quite happy to stay within the 1,000 sq. ft. safe zone we’ve created for me.
I’m more than okay with it, actually. I don’t have it in me to keep waging these wars on my body and I realize after what happened with my nephew that so long as I try to include extended family in my life, I am making myself susceptible to interaction with people I’m much better off leaving in the past. My future relationship with my nephew will have to remain much as it was before our vacation; on messenger.
During my weekend alone, I decided to shoot some videos about the differences between my normal baseline of health versus me in a flare, which involved into me talking about what I do to try to recover more quickly. My next post will share these posts and discuss some of the theories about what’s causing my dystonia. I hope you’ll join me for part two of this story in a few days!
Have your own vacation or summer outing turned nightmare to share? Tell us about it in the comments!
Resources and Further Reading:
- Hamonet C, et al, (2018) Cognitive and Psychopathological Aspects of Ehlers-Danlos Syndrome – Experience in a Specialized Medical Consultation.
- Hamonet, C, et al, (2018) Dystonia and its Treatment in Ehlers-Danlos Syndrome.
- NIH, Dystonias Fact Sheet.
- H. A. Jinnah, M.D., Ph.D, Diagnosis & Treatment of Dystonia
- American Association of Neurological Surgeons, Dystonia–Classifications, Symptoms and Treatment.