Go big or go home. I went big apparently. I’ve always said it’s only a matter of time until the word “syndrome” is listed after my last name. After years of living with a lot of pain and unexplainable medical mysteries, I finally started to get some answers earlier this year. Those answers came in the form of chronic illnesses. I’m not sure if the correct way to explain it Is the main underlying issue is hyper mobile Ehlers-Danlos Syndrome (hEDS), but that’s what I’m going with. This fun to say thing is a genetic chronic illness that affects the connective tissue in the body. Now, upon hearing that you probably think “joints.” Connective tissue is more than that. It’s all of the organs and joints and some other things. Basically my body doesn’t know how to produce collagen correctly. Yes, my joints snap, crackle, pop, go into subluxation (partial dislocations), and basically just hurt all the time. On the up side, because of this I could be a 200 year old vampire and none of you would know because I have such amazing skin. And a lot of my joints have a higher range of motion than normal- hyper-mobility. There’s A LOT more of this illness, but that’s a brief overview. Along with POTS (Postural Orthostatic Tachycardia Syndrome) - which means my heart doesn’t keep up quite right when I’m upright. My standing or just leisurely walking heart rate is the same, or sometimes higher, than what my runner friends are at while running. Heat really bothers this as body temperature regulation is difficult, and I experience pre-syncope (feeling of about to pass out, but not actually loosing consciousness) quite frequently. LiquidIV is my new bestie as electrolytes help calm this down. So, if you see me adding salt in my water just move along. Props to Apple for making me sit down from yelling at me for my heart rate being too high, while seemingly doing nothing. Then there’s the MCAS (Mast Cell Activation Syndrome). This is mostly controlled with my daily allergy pill. Every now in then in a bad flair I can get some of the symptoms, but for the most part this doesn’t bother me. Without the allergy pill: my body will randomly break out in hives, my palms and the soles of my feet become extremely itchy, and the skin writing is much more prominent (ok, this one is actually kind of cool but also really itchy). This syndrome is my body over producing histamine…for no reason other than it thinks it’s fun. With all of this comes fibromyalgia. Yes, I am in pain constantly. Some days I’m at my baseline of a twinge here or an aching joint there, but other days it’s throbbing throughout most of my body. Migraines/headaches are basically a constant. I spend a lot of time laying in cool, dark places as that is where I feel the best. There’s no cure for any of these. And, honestly, there’s not really medications or a, “Do this and you’ll be fine,” plan. There’s, “Here. Try this. It might work for you. At least for a little while. Maybe…Hopefully.” I did some really cool medication reaction genetics test; and, as most people with hEDS, local analgesics and pain relievers don’t do much for me or I will have a terrible reaction with no bennefit. When most of you see me, it’s at my baseline. I never know when those days are going to happen, or how long I’ll be feeling well enough to go do things. I have taken a step back from a lot of events and public outings. I’ve learned to reserve my time for important things as I don’t know how long I’ll be down after. What you don’t see are the bad days. The days where I can barely move. The days and nights where I’m crying in pain because nothing is working, and I have to just wait for it to pass.The days where I have to drag myself out of bed to take care of Lana, or force myself to eat because I can’t remember what or when I last had something. During those flair days, as they’re called, I reserve my energy. I only speak to necessary people. Some days that’s only work conversations, and occasionally that can extend to a person or two outside of those necessary interactions. It takes a lot of energy to just exist when your body is fighting itself, and throw in having to keep up with conversations, daily life, or work tasks sometimes anything more becomes too much. I have to prioritize those interactions. That’s not to say if you contact me and I don’t respond that I don’t care, but I have to start caring more for myself. So, if I don’t contact you, give me time to come back to myself where I have enough spoons to have those interactions again. I feel bad for not having the energy to respond to things, but I’m doing what’s best for me. All of this has been…surreal, if I’m being honest. I did seek out the doctor as I had suspicions thanks to some friends that have gone through this and recognized my symptoms for me to research and set up appointments with the right doctors, but to actually have it confirmed is just insane. It’s life changing. It’s learning to live completely different than I have, and it’s learning to give myself the best quality of life for this new reality. Because I will never get better. There’s depression and mourning for the person I was before. This is something I have had for years, but in the last few years has really just manifested itself more and become more impactful on my daily life. Five years ago on November 5th (it was a memorable day for a lot of reasons) is what really sent all of these things into overdrive, and it was the beginning of this year I learned about hEDS, POTS, and MCAS to start connecting the dots and seeking answers. Symptoms I have had since I was a kid and seen many doctors for finally had reasons. Having COVID, before knowing what that even was, triggered a lot more of the symptoms; and they have progressively gotten worse in the last 5 years. Barometric pressure and weather changes also have a big impact on my body, and living in this lovely hell of a state I experience a lot of fluctuations with both. Seriously, who thought this place was a good idea?! Someone should fire that guy. Tonight, as I write this, is one of those bad nights. I have, what I now believe to be, a cervicogenic headache. I feel like there Is an ice pick shoved in my left ear and is bent to jab into my left eye with some pain at the base of my skull on the left side. And looking at lights makes my eyeballs throb in pain. You know, in case you want to imagine what it feels like. Usually when I voice having a headache or in pain it’s because it is more than just a baseline pain and it’s going to impact my day. I have a lot more canceled plans or going home earlier than planned due to being in too much pain to continue with the fun now, but I try to participate in what I can and enjoy what time I have in those moments. If you made it through this, thank you. It’s a wild ride, but it’s mine.
