Why Vacations Don’t Exist for People with MCAS: A Story

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.

Our Plans

A map showing our route from Florence, KY to Marquette, MI.
Our route from Florence, KY to Marquette, MI.

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.

A Stormy Afternoon on Lake Michigan

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.

A woman in dystonic Crisis Seizes on a gurney
A woman in dystonic Crisis Seizes on a gurney, from Cognitive and Psychopathological Aspects of Ehlers-Danlos Syndrome

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.”

A quote from "Why Vacations Don't Exist for People with MCAS," an essay about the consequences of attempting some summer travel with MCAS, EDS, POTS, Dystonia and a host of other comorbid conditions.

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, now published here: The Vacation Aftermath

Have your own vacation or summer outing turned nightmare to share? Tell us about it in the comments!

Resources and Further Reading:

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An essay about our vacation, the consequences that ensued and the valuable lesson learned that my traveling days are over, thanks to MCAS, EDS, POTS and other complicated diagnoses.
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13 thoughts on “Why Vacations Don’t Exist for People with MCAS: A Story

  1. So sorry you have had such a rough time, Michelle – I think many of us spoonies and zebras can empathise. I am sitting here after a 4 hour journey yesterday to visit my in laws – the first time I have made it in over 3 years…..so many attempts have been cancelled. But as you can imagine I feel like I have been hit by a truck today….dislocated shoulder, POTS going barmy and neck pain like you wouldn’t believe. Hubby and parents have gone for a walk leaving me with the dogs (my choice) and my laptop, so it was with a wry smile that I reread your post! Doesn’t it drive you mad when well meaning people tell you that a change of scene will do you good?!! I applaud you for sharing so honestly what a “holiday” can be like for us – sending you hugs, Claire x (PainPalsBlog & CIB)

    Liked by 1 person

    1. I’m thrilled it’s been so well received, but I suppose I shouldn’t be surprised. We do all have these experiences and need to vent and be heard. It always feels decadent to write this sort of thing without offering solutions, but I truly have no fix. I guess that’s really sort of the point. There’s only so much we can do in spite of rescue meds, k-tape, masks or mobility aids. Sometimes there’s nothing more to do than accept defeat and stay home, as much as it sucks.

      I hope your visit doesn’t cost you too dearly and that you have everything you need to recuperate well. I’ve heard it’s been a hot one in the UK this year and that always makes it so much harder. 💞

      Like

  2. Wow, that sounds like a rough “vacation”. I’m sorry you had to go through that. I know it’s so disappointing when we’re looking forward to spending time with family and friends we don’t get to see often, and our health gets in the way. It’s especially hard when it happens in front of people who haven’t seen us like that, and who we are trying to shield from that experience. I’m sure it brought you and your nephew closer, having to witness what you go through.

    Big hugs to you.

    Liked by 1 person

  3. Good grief, I’m so sorry, Michelle. That whole experience really does sound brutal. Even a dip in the pool, which should have been relaxing, sounds very uncomfortable with hives.

    I’ve had day trips where it seems very little was achieved in terms of sightseeing or general enjoyment, yet it’s been utterly exhausting, has reduced me to tears in agony and I’ve been left wishing I hadn’t gone. But sometimes we need to push ourselves to know. Or at least, so I thought. And I guess I still to a degree think that, because sometimes no matter how much preparation we do and how many changes we make to make things as manageable as possible, it’s still not going to go great or be anywhere near as enjoyable as we’d like. But bloody hell, your experience here has been off the scales.

    Lake Superior looks lovely though, and I’m glad you made it to Pride (love the photo!) even though you paid for it afterwards. “Attempting to control my muscles during a dystonic attack is like trying to contain a tornado” – That sounds equal parts scary and difficult.

    You’ve done brilliantly at sharing so honestly what it’s like taking a ‘vacation’ and the nightmarish challenges you’ve faced. I just think you’re awesome. No matter what life throws your way or how your body decides to have a meltdown, you keep going. Looking forward to part 2.  ♥
    Caz xx

    Liked by 1 person

    1. I prepared so hard for that trip and it all went so terribly wrong so fast! The stress and pollen, likely. They can knock me out like little else. But what else can we do, love? Keep trudging on and hope for the best until we can go no more like everyone else. I’m just thrilled to have a space where I can express these feelings and experiences openly and people actually thank me and compliment me for it! There are still good things to stick around and enjoy, like all the fab people I meet online like you, Caz! Xx

      Liked by 1 person

  4. Oh Michelle, I’m so sorry this happened. I can’t even imagine how difficult it had to be to deal with everything you dealt with during this ‘vacation.’ I’m glad you got to spend some time with your nephew. Even though it was difficult for all of you, I’m sure it meant a lot to him to be able to spend time with you. Sending gentle hugs your way!

    Liked by 3 people

  5. Vacations are such a sad point with me. I’ve had to cancel so many planned vacays and mini vacays due to my health issues. Even when I’ve been able to go, I’ve often had to spend much of my time recuperating at the hotel rather than enjoying myself. For several years now we have been wanting to go up to Salem MA and a few other things up that way, but my health has not cooperated. I keep hoping one day. It really can be depressing. I really fear getting stuck somewhere far away from home though and then getting really really sick and kind of being stuck there.

    Liked by 2 people

    1. I understand that. I was afraid to do this short jaunt. I was stuck and terribly ill in Mexico 5 years ago, our last vacation before this one. I spent the whole time throwing up and passing out. I was stuck in our hotel room half the time with migraines, too. Some tropical vacation that was! It took a lot for me to risk travel again. I hoped removing the plane ride would help. Not enough! In retrospect, this was the better attempt, but unless something changes radically with my health, my days of travel are definitely over. I hope you get your trip someday soon! Maybe it will go better than mine. xx

      Liked by 1 person

      1. I would love to visit Ireland. It has been a dream of mine since childhood, but now with these chronic ailments I worry I’ll never make it. I truly am lucky if I can make it to a US vacation destination. I guess I should try to be thankful for what I can still do, but it hurts sometimes.

        Liked by 1 person

        1. It really does and I empathize with these feelings so much. I had so many plans, teaching and spending the summers traveling the world and writing. That would have been my ideal life. I think we have to allow ourselves to mourn these losses from time to time. I guess that’s why I wrote this piece.

          Liked by 1 person

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