vascular compressions: a day in the life

 A month or so ago, Theodore was hanging out with me in the living room. And out of nowhere he asked why I had to have this rare health issue. Wanted to know how I got it and how common it is. I explained that I was just born this way. Then we searched to see what the internet said for how common it is. It said about 2 out of 100,000 people. This is referring to median arcuate ligament syndrome, which is when there is compression of the celiac artery and you have symptoms because of it. They think anywhere from 10-25% of people have the compression without symptoms. After I told him about the 2 out of 100,000 he immediately said, “So you could be the ONLY person in Mankato who has this!?” I had never thought about it that way, but he’s right, I could be. Though as we’ve witnessed with my journey, it’s ridiculously challenging to rule out all the things and get a diagnosis. So how many people struggle with MALS and have no idea?!

Theodore was just so sincere in all his questions. He then says, “So what does it feel like? Start from the beginning!? What’s a whole day like?!” The sheer enthusiasm gave me a little chuckle, but I could tell it was genuine and he didn’t mean to be funny. Honestly, my heart melted a bit too. Here’s this 11-year-old boy trying to process why his mom doesn’t feel good all the time. So often kids are just in their own worlds enjoying being a kid. As it should be! But they also have these curious minds thinking about all these big life things. So often it seems that they aren’t paying attention, but they really are.

So, What’s It Like?

Living with chronic illness often makes me think of the movie Forgetting Sarah Marshall where Paul Rudd is teaching Jason Segel to surf! “Do less” “You’re doing too much” “Do less” “Remember, don’t do anything” “Well, you gotta do more than that!”

Basically, it’s hard to manage. Can’t do too much, but you gotta do something. This is where the spoon theory comes into play. Each day you start out with a number of spoons and most times, once you’re out, you’re out. But here’s the kicker, you don’t start with the same number of spoons each day. The woman who wrote the article linked above explains it so well. So if you aren’t familiar, I suggest giving it a read.

I have yet to come up with a way to explain clearly what it’s like most days. If I could give it one word though, it would be unpredictable. For me personally, no two days are the same. The symptoms ebb and flow every hour, which as you can imagine makes life very difficult to plan. I’ve learned ways to cope with what’s thrown at me, but a trick that works one time might not work the next. It’s constant trial and error. There are stretches of days that have more of a theme at times. Just this past month I had one week where I had several migraines, another where the pelvic and leg pain were dominant, and then another where my abdomen screamed the loudest. And sometimes I get all three of these in one day. I tend to think of my body in three sections: head/neck/shoulders, abdomen/back, pelvis/legs. I’ve found I can also better deal with it all when I can grasp an understanding for what’s going on. Sometimes that means knowing what the trigger was or that it ties to a time in my cycle. When I say trigger, I mean ‘did I do a type of physical activity that made something flare?’. Or ‘did I eat something?’. I would like to say because I ate a certain food. But frankly, any food or drink can set off pain at this point. There just tends to be foods that are typically more reliable and less impactful when it comes to causing pain. Until one day suddenly a safe food isn’t safe that day for some reason. Absolutely maddening.

So let’s talk about MALS pain and other symptoms it contributes to. Keep in mind this can be different for each person. The one constant is epigastric pain. This area is right below your sternum that sits between your rib cage. To me it feels like if someone were to punch you right there in the center and their fist remains there pressing. This causes me to also feel nauseous, especially after I eat or drink. I truly feel like if I could just vomit I’d feel so much better. My body is anti-vomiting though, which is good and bad. This pain is also felt in the same area but on my back. It often spreads out to both sides essentially creating a tight band all the way around my upper abdomen. This can range from a dull pain to feeling like I’m being stabbed with sharp cramping. This pain can be made much worse with physical activity and/or eating. And I mean something as simple as walking, standing for too long, household chores, etc. If this upper abdominal pain manages to calm overnight, the first sip of water I take in the morning fires it up. For reasons unknown to me the pain also sometimes wakes me up in the middle of the night. This is where painsomnia comes in since I can’t always fall back asleep after being awoken in pain.

Next, we have chest pain and heart palpitations. I think at times the compression is suppressing the blood flow just enough that it causes the chest pain. And due to the blood velocity changing so drastically between inhale and exhale it can cause my heart to feel like it’s pounding harder in my chest. I also struggle with constipation, diarrhea, abdominal cramping, decreased appetite, upper back pain, flank pain, and bloating. Since diaphragm is sitting lower than it should I feel like I can’t deep exhale or feel short of breath. It’s like if you count to 5 on an inhale then count on exhale but you can only get to 3 or 4 before it just stops. Then you naturally inhale quickly and frankly can just get yourself into a panicked breathing. It’s such a strange feeling. And as many of you know, I love singing. But often times I feel quite out of breath doing it.

I also really struggle with neck/shoulder pain and migraines. Some say this can be linked to MALS. Because the median arcuate ligament attaches your diaphragm to your spine. So I surmise that any pain along the spine can then travel upwards. Could also be something else, who knows.

Then there’s some issues with a completely different compression that affects pelvic/leg pain. But I don’t feel like getting into that too deep at the moment. But ultimately it greatly impacts sitting, standing, walking, etc. because of blood flow issues. In many cases laying down is the best position for me, but not always with my migraines.

The Grief

The aches and pains aren’t often visible, but what’s even more invisible is the grief. I don’t think this is talked about often enough. As a whole, mental illness is finally being more recognized and talked about in general. But sometimes it’s about the more obvious things. And I’m not sure this is thought about with chronic illness. I think with things like cancer, there are very obvious signs that help people empathize. Someone loses their hair. We can all visibly see that and understand how that may take a toll. Though until we’ve personally experienced it, we still won’t fully understand. We can just try to put ourselves in their shoes.

I’ve slowly been giving up pieces of myself for years. It has ebbed and flowed over time. I’ve had windows where I’ve gained pieces back, only for them to disappear again. There are obvious things, like work. Working part-time as a healthy person might be the best thing ever, but for me it’s not. Those hours I’m not working are spent either sleeping or wishing I was asleep so I could get a break from my body. And if I don’t get that precious time, I have to give up time somewhere else in my life, which usually means time spent with Ben or the kids. Time spent with my friends was given up a long time ago. If I can find a piece to give to someone else, it’s incredibly precious. And I probably napped and took several drugs to be able to leave the house to hang out with you. Thankfully I work with some pretty amazing people who are now my friends, so I count that as part of my social time to fill my bucket. There are moments when you get accustomed to your disabled life and accept it. And then there are days when you take notice of all the healthy people and everything they do. Frankly, sometimes it just pisses you off. Sometimes it makes you incredibly sad. And sometimes it motivates you to try really hard to be just like them.

You’re not supposed to compare yourself to healthy people. That’s a rule of chronic illness, because it will just keep pushing you down otherwise. There are just so many little things that hit me throughout the days. Somedays I can brush it off and other days it just feels bigger. Like the fact that I can no longer wear my wedge heels. They’re just shoes, but they’re also some of my favorites. Most days my legs hurt so bad it doesn’t matter what I wear. But I’ll stick to my comfy sandals whenever possible. And since it’s summer I usually only wear my compression socks at home, they don’t really vibe with sandals. You’ll often find me at home in shorts with my polka dots Pacas compression socks. It’s quite the look 😉 Sometimes I change it up and wear one of my sporty skorts instead of the one pair of athletic shorts I love. Clothes are a whole other thing. I can’t handle anything tight. It literally hurts. One day I put on a pair of stretchy dress pants that I used to always find comfy and it was seriously painful. It sounds dramatic, but I couldn’t get them off fast enough. So just like my shoes, there are so many clothes I don’t wear because they’re too uncomfortable. It’s hard enough to go to the office in itself, but sometimes I want to stay home just so I can just wear my loosest yoga pants, fluffy socks, and a comfy sweater. And I know you’re thinking, I love wearing those things too. But it hits different when it doesn’t feel like a choice.

A few other examples:

• Staying home and missing out on an event. This can be a social event I want to go to, just time out and about with my family, etc. Just recently Ben took the kids to Como Zoo and I stayed back because I knew it would impact me later that day and a few days after trying to recover – but I had to work the next day, so the responsible choice was to not go. I have to make these choices constantly.

• Running an errand. One simple errand is a big outing for me. And if I have two places I need to stop I likely have to split it between two different days. Or it has to be on a day when I can do one errand, go home and rest, then run the second errand.

• Food/Beverage. This probably seems obvious based on what I described above. Sometimes I have an appetite, sometimes I don’t. I prefer to eat food rather than drink a shake. But there’s a culmination of anxiety that goes with eating. And sometimes there’s joy going into it only to be tears to follow because of the pain it causes after. It totally messes with your mind over and over again.

• I miss exercising. I hate not being as strong as I once was. The dumbest things can set my body off, it’s absolutely maddening. I try my best to take short walks and stretch. Throw a ball around occasionally with the kids. But it almost always leaves me in pain.

• Cognitive Function. I’m not as quick to process things. I lose track of what I’m saying as I’m talking. Basic words sometimes completely escape me. The fatigue leaves me feeling emotional, so the simplest things make me want to cry.

Love,

Ash

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