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    Updated on Feb 24, 2019. Posted on Nov 10, 2018

    This Is What Living With Endometriosis Is Actually Like

    Since endometriosis is an invisible illness, it's hard getting people to understand or believe what living with this is really like. So I recorded a week of my life.

    Hi everyone, my name is Lara and I have endometriosis among other pelvic floor conditions.

    Lara Parker

    Because of this, I live with chronic pain. I am in some form of pain every single day. Some days are worse than others, some days are so good I almost forget I'm sick, but no matter what — the pain and discomfort is always there lingering.

    However, since endometriosis is an invisible illness, I find that I have a hard time getting people to understand or believe what living with this is really like.

    Having something that never goes away is a difficult concept to grasp, even for someone actually living with it. The extra steps I have to take just to exist is something I wish more people were able to understand. So I decided to chronicle a week of my life with endometriosis in the hopes that you leave it having a better sense of what it's like to have a chronic, invisible illness like endometriosis. Also, it's very worth mentioning that I am one of the lucky ones who has health insurance and an income that will cover the cost of co-pays for acupuncture, physical therapy, and chiropractic work.

    Day One: Saturday

    Day Two: Sunday

    Lara Parker

    I woke up Sunday morning with less pain, but I still felt like shit. While Saturday was a 10/10 pain level, Sunday was a 6 or 7. I was able to get out of bed and walk, but I didn't want to. At this point in my life, I've decided to avoid any invasive surgeries and throw myself into alternative medicine. It's not something that was easy to decide, and it's not something that works for everyone — but it's what I feel works best for my body. So at 9 a.m. I headed to see my acupuncturist. She specializes in hormonal imbalances, which I have a lot of, if you can even have a lot of that. I spent two hours with her while she did her best to ease the pain in my lower back and the swelling in my abdomen. She did an hour of something called direct moxibustion — which is when a small amount of moxa, an herb, is placed on top of an acupuncture point and burned on the skin.

    After acupuncture I felt some relief, but I was still emotionally exhausted from spending over 24 hours in bed so I went home and got back into bed once again, where I stayed the rest of the night. Physical agony aside, the mental repercussions of losing 72 hours of your life to endless pain will certainly incapacitate you.

    Pain Level: 7/10, able to walk, but don't feel like doing anything unless absolutely necessary.

    Day Three: Monday

    Lara Parker

    Since I barely left my house over the weekend, I was anxious as fuck to get out of it by Monday morning. I woke up at 5:45 a.m. with a lot of lower back pain but compared to Saturday's pain levels I felt like a new woman. I took myself on a long hike with my dog to start the day. Hiking isn't necessarily the best thing for my pelvic floor pain — but it's good for getting endorphins and helping me feel a little less anxious and depressed after a particularly bad flare. That's the thing about chronic pain, though — one day you see me on my couch unable to move, and the next day I could be able to walk up a mountain. This doesn't mean my pain has gone away or that I'm faking it. It just means that, like everything, it varies day to day and that after over a decade of living with this, I've learned how to adjust. After the hike I laid on my floor and did stretches for 30 minutes because if I did not, I would (you guessed it!) be in more pain. I packed my bag for work which included the 17 different supplements I have to take at specific times during the day and endless amounts of CBD capsules, oils, and rubs in case the pain were to return before I could make it home.

    Once I was at work, I went to a lot of meetings and by 4 p.m. my abdomen had started swelling like crazy again. I watched every single minute on the clock until I could go home at 5 p.m. and relieve myself with an edible. It was another evening spent on my couch, unable to move. But I am so thankful I live in a state where cannabis is legal — it is my lifeline. And I mean that wholeheartedly. Imagining my life without it gives me intense anxiety and fear.

    Pain Level: 5/10 most of the day, 7/10 by evening, but able to go to work and on a hike!

    Day Four: Tuesday

    Lara Parker

    Lately early mornings are when I have the least amount of swelling and pain in my lower back and abdomen so I've been doing my best to take advantage of them and once again woke up on this day at 6 a.m. to go on a hike with friends before work. I didn't have much pain on the hike — but I neglected to do my stretches afterward so by 2 p.m. my lower back was screaming bloody murder and I could hardly sit in my desk chair. Like most people with a chronic illness, I don't have the luxury of neglecting stretches, supplements, appointments — any of that. If I don't give almost 100% effort in taking care of my body at all times, I pay for it with pain. Lots of it.

    Like I mentioned earlier — I'm throwing myself into alternative medicine at the moment. That means I am going to see a chiropractor, a pelvic floor physical therapist, and my acupuncturist 2x a week when possible. On this particular day I left work early to head to my chiropractor's office. I usually spend an hour and a half to two hours there during which I sit with a giant TENS unit on my hips, legs, back, and abdomen and get a full-body deep tissue massage. I also get adjusted. I always leave feeling better, but I also feel exhausted. All I wanted to do after this appointment was lie on my couch without moving and watch Below Deck. But instead I met up with a man named Oliver who practices an unconventional treatment referred to as BEST (Bio Energetic Synchronization Technique.) In other words, he looks for stimuli that is badly altering my physiology and steering the body away from homeostasis, and therefore, creating the environment for unexpected symptoms. To anyone who has ever, at any time, suggested that I am not doing enough to feel better, I present to you what I did on this Tuesday, and kindly ask that you STFU.

    Pain Level: 5/10, able to hike, go to work, AND go to two appointments!

    Day Five: Wednesday

    Lara Parker

    I slept in until 7 a.m. cradling my heating pad because honestly just being in pain all the time is exhausting. And I know "sleeping in until 7 a.m." isn't really sleeping in, but for me it is. I put on the same stretchy yoga pants I'd worn all week (the Align leggings from Lululemon) because wearing ANYTHING that even remotely squeezes my stomach leaves me in so much pain I will break things.

    I went straight to see my acupuncturist first thing in the morning and spent an hour and a half with her. Today, we focused on my uterus, which always feels swollen inside me. It's a weird sensation and one that isn't easy to explain. But I imagine it feels like you're pregnant — but with a demon baby who punches you and stabs you every 20 minutes or so. After acupuncture all I wanted to do was go home and rest, but instead I drove to work where I worked a full day before heading home. I wanted to go to a hot yoga class to help ease some of the tension in my low back and hips, but by the time I arrived home at 5:45 p.m. all I could do was lie on my couch. So I did, again, for the fourth time this week. I hadn't eaten anything but a bowl of lentils at work for lunch, so I made myself some dinner. After eating, my stomach was so swollen and my body ached so badly that I decided to go to bed at 8:17 p.m.

    Pain Level: 5/10, until the evening in which it became 9/10 and I went the f to bed.

    Day Six: Thursday

    Lara Parker

    Today was one of those days where the pain is bad enough to make you miserable but not bad enough to warrant staying home from work because what if it gets worse tomorrow? I went to pelvic floor physical therapy in the morning. Sometimes during PT, we do internal work, which means going *inside my vagina.* Today, though, I was already in so much pain she didn't want to aggravate my body further. We did external work and lots of stretching. I try to come to this twice a week, but on top of everything else I'm trying to do, along with working a full-time job, it's hard to fit it all in. And I don't even mean timing-wise. I mean it's fucking exhausting to have to go to all of these appointments and do all of these things just to try and feel normal.

    After this, I went to work. I knew I wasn't going to feel well for most of the day, but when you have chronic pain you can't just stay home every day. So to work I went. I did my best to concentrate in meetings and put forth effort into my work. But I cannot emphasize to you enough how difficult it is to think about anything else when there is a war raging inside your own body. As soon as 5 p.m. rolled around I rushed home and — you guessed it! — got high and laid on my couch. It might sound like not a bad evening. And maybe under normal circumstances it wouldn't be. But having to get high every single day of my life in order to feel comfortable enough to sit up is not something I would wish on anyone.

    Pain Level: 8/10, should've stayed home honestly.

    Day Seven: Friday

    Lara Parker

    I spend Friday morning seeing my therapist. I'm so, so lucky to be able to see a therapist regularly and I try not to take that for granted. A lot of times when chronic pain is discussed most of the conversation centers around the physical pain. And while the physical pain is awful, what I think gets left out of conversations is the mental pain. Dealing with pain every single day is the hardest thing I have ever had to do, hands down. And it's not just because my body hurts. It's because my heart hurts, and my brain hurts. It's because every single time I have a flare I am forced to think about every minute, hour, or day that I have spent in pain. I have to think about how many days of my life I have lost just lying in my bed cradling my heating pad. And then I have to think about how I might seemingly have to do this forever because there is currently no cure for my conditions. And even on the good days — it's difficult to enjoy them because I am so consumed with the anxiety and fear of when the pain will return. And it always does.

    But, the work week is over, and I'm therefore exhausted. Friday nights are the one night I will never have an appointment of any kind so I take full advantage and *choose* to spend the night on my couch, wearing a silk robe, and catching up on all the shitty reality tv shows that I watch and missed during the week due to appointments. My illnesses have taken a lot from me, but they will never take my hope. Even on my worst days, I will continue to fight back. It's hard to not let these illnesses define me, but instead of shying away from it, I choose to embrace it. I have endometriosis. It sucks. But I am not only my endometriosis. My life is more than that. And no matter how many bad pain days I have, that won't change.

    Pain Level: 5/10 with the help of cannabis, my BFF.

    P.S. If you're looking for more support or information about endometriosis try the Facebook group Nancy's Nook or the online support of Endo Warriors.