A blog for those dealing with ulcerative colitis or other chronic illnesses. My name is Emily and I am 32 years old. In 2012, I was diagnosed with a chronic illness called ulcerative colitis. I started this blog to write about my experience dealing with chronic illness in the hopes that I could help others who might be in similar situations.
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I recently had my first MRI. It was on a Friday night in a hospital basement, which was a little creepy. As usual, I had a lot of anxiety about what to expect, but it ended up not being a big deal.
In December, I developed an infected abscess and saw a colorectal surgeon who drained it and prescribed antibiotics. While the abscess improved a lot initially, it had been over four months and I still had small lump that got irritated and oozed pretty frequently. My gastroenterologist recommended I have an MRI to determine if I had a fistula, or a tunnel from my intestine to the abscess. So that’s how I found myself having a pelvic MRI with contrast on a Friday night.
One thing I had been worried about was whether there was any preparation for the MRI, but for my procedure, I didn’t have to do anything. (I would recommend checking with your doctor as to whether any preparation is required, since it may be different under different circumstances.) I was allowed to eat beforehand. Because it was in the evening, I had a light, early dinner, since I knew I’d be lying down for awhile and I don’t like to lie down right after eating. When I scheduled it, they asked me a series of questions, including whether I was claustrophobic (I’m not). I let them know that I have the Nexplanon birth control implant in my arm and two titanium clips in my breast from when I had a biopsy done; both were fine for the MRI.
MRIs are very safe, as the technician kept telling me, because there is no radiation (he kept calling me “dear”, which normally would make me angry, but in these circumstances I found it comforting). Magnetic resonance imaging, or MRI, uses a magnetic field to create images of organs and tissues within the body. To help with my anxiety, I tried to approach the whole thing with curiosity and remember all of the details so that I could write about it here.
Before the MRI, I was taken into a changing room to change into a hospital gown. There were lockers to store my clothes and purse. Of course I couldn’t figure out how to work the lock, and after I got it locked I worried that my stuff would be stuck in there forever, because that’s just how I am. I was also worried about what to do with my glasses, because I wanted to wear them as long as possible. It turned out to be fine; the technician had me leave them on the counter in the room during the MRI.
After changing into the gown, the technician put in an IV for the contrast and asked me about ten times if I needed to use the bathroom (there were plenty of opportunities to use the bathroom during this whole process, which was another thing I had been worried about). Then he took me into the little room where he would be operating the MRI, and asked me what music I would like to listen to during the procedure. At that point I panicked and my mind went blank. I’ve always been self conscious about my taste in music and I couldn’t think of anything to request. After standing there saying nothing for what felt like twenty minutes while he looked puzzled, I asked to listen to Kacey Musgraves.
Next he took me into the room with the MRI machine, and I left my glasses on the counter and lay down on the gurney. He placed something rectangular over my pelvis and strapped me down, and hooked up the IV. He gave me headphones so I could listen to the music. He also gave me a rubber bulb to hold, which I could squeeze if I needed to be taken out or talk to him during the procedure. Then he arranged my arms so that they wouldn’t be in the way and put a blanket over me. I went into the tube feet first, which felt less scary than going in head first. My head was right at the entrance to the tube, so that if I tipped my head back I could see the ceiling. There was a square light cover with a scene of trees and sky, which I guess was comforting.
He left the room and the MRI started. Earlier in the day, I had reread the part of Geraldine DeRuiter’s very funny book All Over the Place: Adventures in Travel, True Love, and Petty Theft where she talks about getting an MRI, so I thought I was prepared for the sounds it makes. She describes the sound as “the passionate mating sounds of a fax machine and a semiautomatic rifle,” which turned out to be a very accurate description. But I wasn’t fully prepared for the variety of sounds it would make. I lay there wondering what all of the sounds were for, and how one machine could possibly make all those different noises. Sometimes the sounds would stop completely, and that made me more anxious for some reason. The gurney also moved back and forth a little bit at various points.
At first I was able to relax. I focused on the soothing music - Kacey Musgraves had turned out to be a good choice. I tend to daydream pretty easily, so for a little while I was fine just lying there, listening to music and daydreaming and observing the strange sounds of the machine. Sometimes I closed my eyes, but I found it really disconcerting to open them and see the white tube right above me, so I mostly left them open.
I gradually became more and more uncomfortable. I got really hot under the blanket, and also really thirsty. My hand fell asleep and I desperately wanted to move. I moved the parts of the body that I thought I could move slightly without messing up the images, like my toes. It felt like I lost all sense of time in the tube and wondered how many images they could possibly be taking. I thought about asking to be taken out so I could move for a minute, or have him take the blanket off, but I figured it must be almost over and I just wanted to get it over with. I was also worried about interrupting at an important point.
After what felt like forever, he said something I couldn’t understand (I think he was telling me that the contrast was going in). Then an automated voice told me to hold my breath and then to resume breathing, which I’m pretty sure I messed up. After a few of those, it was over. I got out of the tube, managed to unlock the locker without any problems, and got lost trying to get out of the hospital at 9 pm on Friday when no one was there.
All in all, the MRI wasn’t a big deal. Though it felt like I was in the tube forever, it was probably around 40 minutes, and they made it as comfortable as possible. The only bad part of it was that the MRI showed that I do in fact have a fistula, which is a story for another day.
I have struggled with anxiety all my life, both social and general anxiety. I have come a long way in managing it, but the way it interacts with my ulcerative colitis is complicated and confusing.
After I had been on Entyvio for awhile and my ulcerative colitis was in remission, I finally understood what “normal” feels like. I experienced what it was like to have just one or two perfectly formed bowel movements a day with no pain or urgency or blood. And I realized that the last time I had experienced that was in high school, despite not being diagnosed with ulcerative colitis until I was 27.
Why wasn’t I diagnosed earlier? Unlike many people with digestive disorders, it wasn’t because I was misdiagnosed or ignored by doctors. I never told a doctor what I was experiencing. I didn’t realize it wasn’t normal. Sometimes I thought it was something I ate. More often, I thought it was anxiety.
When my parents dropped me off at the dorm after breaks and I found myself running to the bathroom, I thought it was anxiety from being back at school. When I interned on Capitol Hill during college and found myself having many bowel movements throughout the day, I thought it was the stress of having a job where I had to answer phones all day. When I moved cubicles at my first job and had to use the bathroom all afternoon, I blamed anxiety at being in a new situation.
I definitely have anxiety, and I’m sure it made things worse or triggered my symptoms. But I’m also sure that I had ulcerative colitis at the time and ignored it.
I was finally diagnosed when I went to the doctor because I had been feeling exhausted all the time. It didn’t feel like normal tiredness. I was getting enough sleep and still feeling completely drained. I happened to mention that I also regularly had blood in my stool. By that time, my mom had been diagnosed with Crohn’s disease, although I didn’t really know what that was. When I told that to my primary care physician, she immediately referred me to a gastroenterologist and I was quickly diagnosed with ulcerative colitis.
But even after I was diagnosed, I still wrote off my symptoms as anxiety. When I would run to the bathroom before a meeting at work and sometimes not make it in time, I drove myself crazy trying to figure out if anxiety was causing my symptoms or if my symptoms were causing my anxiety. It was impossible to disentangle the two.
It was only once I was in remission that I realized how much of what I dismissed as anxiety was actually ulcerative colitis. I realized that except for something major that would make anyone anxious, I never had to use the bathroom before meetings. I realized that anxiety does not cause blood or accidents. That maybe should have been obvious, but anxiety is sneaky. It makes me doubt myself. It makes me think that I am the problem: I just need to learn how to better control my anxiety, and I won’t be so sick.
If I could go back in time to when I was in college, to my first job, to after I had ulcerative colitis but before it was well-controlled, I would tell myself: You can have anxiety and also be sick. Trust yourself. Just because you are anxious doesn’t mean you should dismiss everything else that is happening to you.
I’m glad to see that the relationship between anxiety, depression, and IBD is being studied. I hope additional research will continue to be done and that physicians will recognize the interactions between physical and mental health and the importance of addressing both.
I’ve been curious about fecal matter transplants (FMT) since I first read about them a few years ago. As the name suggests, a fecal transplant is a procedure where stool from a healthy person is transferred to a sick person. It has been used as a treatment for Clostridium difficile (c. diff), a bacteria that can take over your colon, and is increasingly being studied for the treatment of inflammatory bowel disease.
Although many people probably think it sounds gross, I’ve mostly been intrigued. Having had c. diff in the past and lived with ulcerative colitis for many years, if I had the option to undergo FMT instead of some of the medications I’ve been on I would probably jump at the chance. I’m glad it is being studied as a treatment for IBD and hope that it will become another option for IBD patients.
Below is a round-up of some links on FMT: what it is, how it works, the experiences of donors and recipients, and the future of FMT.
This post contains Amazon affiliate links, which means I may receive a commission if you click a link and purchase something that I have recommended.
Last winter, I read The Little Book of Hygge: Danish Secrets to Happy Living by Meik Wiking, the CEO of The Happiness Research Institute in Copenhagen, and immediately became obsessed with hygge. Hygge (pronounced hoo-ga) is hard to translate. I think of it as a combination of coziness and self-care.
Hygge is about an atmosphere and an experience, rather than about things. It is about being with the people we love. A feeling of home. A feeling that we are safe, that we are shielded from the world and allow ourselves to let our guard down. You may be having an endless conversation about the small or big things in life - or just be comfortable in each other’s silent company - or simply just be by yourself enjoying a cup of tea.
— The Little Book of Hygge: Danish Secrets to Happy Living, Meik Wiking
Those of us with chronic illnesses spend a lot of time at home, and although we may be too sick or in too much pain sometimes to enjoy hygge, I think it’s important to try to have some time where we take care of ourselves. Hygge is a great concept for putting together a relaxing evening. Here are some of my favorite things for a hyggelig evening at home.
A cup of tea or cocoa.
I love Trader Joe’s Harvest Blend Herbal Tea or their Well Rested Herbal Tea. And I don’t think there’s anything more hygge than cocoa with marshmallows.
Something relaxing to watch.
I just watched the show Making It, a crafting competition hosted by Amy Poehler and Nick Offerman. It’s such a fun show and I found it relaxing to watch. If you’re looking for a movie, I recently enjoyed To All The Boys I’ve Loved Before on Netflix.
Something to read.
I recently finished the book Milkman by Anna Burns, about a girl living in Northern Ireland during the Troubles, and it is one of the best books I’ve ever read. Of course, you can also read The Little Book of Hygge while being hygge.
According to the book, when Danes are asked what they most associate with hygge, 85 percent mention candles. I’m always a bit afraid I’m going to start a fire (and I don’t think my lease even allows candles in my apartment), but if you want to have a truly hygge evening, light some candles.
It can be hard to take time for ourselves. We may feel guilty or feel like we’re too busy and have too many obligations. But since I’ve been diagnosed with a chronic illness, I’ve come to realize the importance of taking care of myself and taking some time each day to unwind and relax. I love the concept of hygge because it’s all about taking time to be present and comfortable and appreciate what you have. So now it’s time for me to put on a pair of cozy socks, make myself a cup of tea, and read for a bit.
When my primary care doctor told me seven years ago that I might have Crohn’s or ulcerative colitis and would need to see a gastroenterologist, my first worry was that I’d need to have a colonoscopy. Sure enough, the GI said that she couldn’t tell me what was wrong until she’d taken a look, and scheduled me for an upper endoscopy and a colonoscopy the following week. Since it was only a week away, I didn’t have much time to panic, but I still had a lot of fears and questions.
Now that I’ve had five colonoscopies, I can say that it does get easier. It’s not fun to know that you’ll need one every year or two for the rest of your life, and I still get anxious before them, but I’ve learned a few things along the way.
Note: This is not a comprehensive guide and I am not a medical professional. Please follow the instructions you receive from your doctor’s office and contact them with any questions.
Make sure you understand the instructions.
About a week before the procedure, I make sure to pick up my prescription for the prep and read through all of the instructions from my doctor’s office. If I have any questions, I call and ask. I felt awkward and embarrassed the first time I called, but the nurses are used to answering questions about procedure preparation and it’s better to make sure you understand and get it right the first time than to need to redo the procedure.
Get clear liquids that you actually like and get a variety.
The day before your procedure, you can only have clear liquids (no red, blue, or purple colored liquids). For me, that part is torture. Before my first procedure, I bought a bunch of jello cups. I hate jello, but I figured if it was one of the only things I could eat all day I’d get over my dislike. Turns out no amount of hunger can make me want to eat jello. I’ve learned that I like to have a variety of options over the course of the day: in the morning, I like to have some apple juice and Vitamin Water, around lunch, I have some chicken broth so I can feel like I’m actually eating something, and in the afternoon, I like to have lemon Italian ice. I also drink a lot of Gatorade and water throughout the day.
Getting ready for a colonoscopy with Italian ice, Gatorade, Vitamin Water, and Suprep Bowel Prep Kit.
Ask your doctor about different types of prep.
For my first three colonoscopies, I had GaviLyte, which involved drinking a huge jug of prep (half the night before the procedure, and half very early the morning of the procedure). It was awful. I felt like Dumbledore when he and Harry go into the cave to get the Horcrux in Harry Potter and the Half-Blood Prince and Harry has to make him drink the poison.
Fortunately, there are now some better options available. Most of the prep is split-dose, which means you will do the first half the night before your procedure (usually starting around 5 pm) and the second dose sometime in the morning, depending on the time of your procedure. Because you will need to be finished a certain number of hours before your procedure in order to have anesthesia, if your procedure is in the morning you may need to get up in the middle of the night to finish the prep. Although this isn’t fun, split-dose makes the prep a little easier because you are not doing it all at once.
The one I like best is called Prepopik. The night before your colonoscopy, you mix one packet with eight ounces of water, and then drink five eight ounce glasses of water over the next two hours. Then early the morning of your procedure, you take the second packet with eight ounces of water, followed by three more eight ounce glasses of water. It doesn’t taste too bad and you’re mostly drinking water. For my last colonoscopy, I had Suprep, which is similar to Prepopik. In my opinion, Suprep tastes a little worse and is harder to get down. The night before your procedure, you drink 16 ounces of Suprep mixed with water, followed by two more 16 ounce glasses of water over the next hour. Then you repeat the morning of your procedure. I’ve also heard good things about Plenvu, but have not tried it.
The preparation is not fun no matter what. You’ll be drinking a lot and running to the bathroom a lot. But not all prep is equal, and it’s worth asking your doctor what they recommend.
Watch something fun when you start the prep.
I like to pick out a funny movie that I’ve already seen and put it on right before I’m starting the prep. That way I have something fun to distract me, but because I’ve already seen it, it doesn’t matter if I miss parts of it when I’m running to the bathroom. For my last procedure, I rewatched Guardians of the Galaxy Vol. 2. If I’m getting up in the middle of the night to finish the prep, I like to pick something that will keep me awake and I also set alarms for when I need to drink the next glass of water or prep in case I fall asleep.
Have your procedure in the morning.
I like getting the colonoscopy over with first thing in the morning. I have less time to get anxious, and the sooner I get it over with, the sooner I can go home and eat and sleep. Last time I ended up having it in the afternoon, and while that meant I didn’t have to get up in the middle of the night for the second half of the prep, by the time I got to the hospital I was very anxious and feeling dehydrated.
You may say weird things when waking up from anesthesia, and that’s ok.
When I got my wisdom teeth pulled, as soon as I woke up I asked where my purse was (why I had brought a purse with me in the first place, I’m not sure). At one of my recent colonoscopies, I think I immediately freaked out about not having my glasses (they had taken them off for the procedure). At my last colonoscopy, I felt anxious beforehand about what I would say this time when I woke up. I’m pretty sure I started babbling about the government shutdown. Sure, I found it a little embarrassing to not know what I was talking about and why, but it’s completely out of my control and I’m sure the nurses are used to it, so I’m not sure why I spent so much time worrying about it.
If you have questions or concerns after your procedure, follow up with your doctor.
After my colonoscopies, the doctor or nurse usually came and talked to me and gave me the initial results and follow-up instructions. If you can have someone with you at that point, it’s helpful, since you’re usually still a bit out of it from the anesthesia. But don’t hesitate to call your doctor’s office afterwards if you have questions or want to go over it again. After my first procedure, my doctor prescribed Rowasa enemas, and I didn’t understand why she prescribed them or when I was supposed to take them, so I followed up.
Colonoscopies aren’t fun, but they are a necessary part of life with IBD. These are just a few of the things that have helped me get through mine. What tips do you have for getting through a colonoscopy? What lessons have you learned?
This part resonated with me: “You grieve a version of yourself that doesn’t exist anymore, and a future version that looks different than you’d planned.” I definitely went through a grieving process after being diagnosed, and it’s been an ongoing struggle to accept that IBD is something I will have to live with for the rest of my life and that the ups and downs of having a chronic illness are largely out of my control. But as I’ve written before, I’m also strangely grateful for having a chronic illness and the ways in which it’s changed me. I’m a different person than I was before I was diagnosed, and that’s not necessarily a bad thing.
I also completely agree with her suggestions to find support, both from a therapist and a support group. My therapist has been very helpful in dealing with the anxiety that comes with having a chronic illness. But the best thing I did since getting diagnosed was start a support group through the Crohn’s and Colitis Foundation. I am so grateful to everyone who comes to each meeting and shares their experiences. I recently went out with a few people from the group, and though we initially tried to talk about aspects of our lives unrelated to our illness, the conversation naturally kept coming back to Prednisone side effects, which country has the best public restrooms (apparently it’s Japan), and which colonoscopy prep is the best. Being in a group of people where the reaction to “I had a colonoscopy a few weeks ago” is not “Really? But you’re so young” but “Oh me too!” is a great feeling.
Do you agree with the author? What lessons would you add?
At the beginning of the year, I wrote about some strange, possibly colitis-related things that happened to me in December. I had an infected abscess that could turn into a Crohn’s-related fistula, some digestive symptoms, and a swollen ankle. I also saw a new gastroenterologist, who ordered tests of my Entyvio levels and antibody levels and a flexible sigmoidoscopy for January.
I started feeling better around Christmas. My ankle was back to normal, my digestive symptoms had improved, and my abscess was healing. I flew back to DC for an Entyvio infusion on December 28. I hadn’t gotten the lab results yet, but I was expecting them to show that my Entyvio levels were low and that I needed to get infusions every four weeks instead of every six weeks.
But as I should have expected by now, this disease surprised me once again. My doctor called a week later to tell me that I had sky-high levels of antibodies to Entyvio and virtually no medication in my system, meaning that I had developed a resistance to the medication. There was no point in continuing the Entyvio infusions. I was shocked, especially since I felt completely fine by the time I got the results. Both my doctor and I were surprised I wasn’t having more of a flare. We decided to do a colonoscopy instead of a flex sig to see how things looked and to try to figure out if I really have ulcerative colitis or Crohn’s disease, which could help determine which medication to try next.
Amazingly, the colonoscopy and biopsies showed that I am in deep remission. Because of scarring, my doctor couldn’t see my terminal ileum (the end of my small intestine), which would help determine if I really have Crohn’s disease, but she still thought it looked more like ulcerative colitis than Crohn’s. She also thought the abscess was just a follicle that got infected, unrelated to IBD. Overall, it was the best possible news I could have hoped for from a colonoscopy.
Because my disease has been so severe in the past, my doctor thinks I will need to be on another biologic long-term, such as Stelara, Xeljanz, or Humira. But for now, since I’m in remission, it’s hard to justify starting a biologic. So she prescribed Lialda (mesalamine), which I was on for a brief period of time before my disease became severe. I take two pills every morning, which is a welcome change from infusions.
When I started Remicade and then Entyvio three years ago, I assumed I would be on a biologic for the rest of my life (or at least until needing surgery to remove my colon or until something new gets invented). I would never have guessed that there would be a point where I’d be in remission and could just be on two pills of mesalamine a day. This disease continues to surprise me, and I have so many questions that will never be answered. How long has it been since I developed antibodies to Entyvio? Was it last January, when I started having some mild symptoms and was prescribed Rowasa enemas? Was I actually having a flare in December, or was all of that just because I got a random infection?
And of course the biggest question: When will my next flare be? I know it is only a matter of time before I start having symptoms again and need to figure out which medication to try next. For me, learning to live with that uncertainty has been one of the hardest parts of having a chronic illness. But for now, I’m trying to enjoy being in remission and taking only two pills a day that don’t suppress my immune system.
I love making smoothies for breakfast. I started a few years ago when I was really sick and have stuck with it. It’s a way for me to eat more fruits and vegetables in an easier-to-digest form, and they keep me feeling full for a lot of the morning.
I got a NutriBullet for Christmas, which has really improved my smoothie-making. It blends everything so quickly and the resulting smoothies are very smooth. Since NutriBullet lets me make the smoothie in the cup and then drink it out of it, it also results in fewer dishes to wash.
Here are a few of my favorite smoothies to make in the morning:
A handful of spinach (you really won’t taste it)
A quarter of avocado
Some tropical fruit, such as mango, cantaloupe, or pineapple
Some frozen mango*
Vanilla yogurt (I prefer Siggi’s because it’s low in added sugar, but I also use Trader Joe’s Greek yogurt)
Unsweetened almond milk (vanilla or regular)
Smoothie ingredients. For this one, I used fresh strawberries and spinach, frozen mango, vanilla yogurt, and ground flax seeds.
A handful of spinach
A quarter of avocado
One apple, peeled and cut into pieces
A few frozen strawberries*
A spoonful of peanut butter
Unsweetened almond milk
*If using frozen fruit, the NutriBullet instructions say not to use frozen fruit or ice for more than 25 percent of the total ingredients. It also instructs you not to fill the cup past the max line and to make sure to add liquid.
Make sure you add milk or another liquid. I use almond milk, but you could use any kind of milk or water.
I don’t really measure the ingredients. I also add the following to each smoothie I make:
A spoonful of ground flax seed
Ground turmeric (good for inflammation)
Ground ginger (good for digestion)
A pinch of black pepper (helps your body absorb the turmeric)
I doubt these ingredients are really doing much in the amounts I add them, but I figure it can’t hurt! I also mix my VSL #3 probiotic into the smoothie.
I had never thought to add avocado to smoothies before getting the NutriBullet, but it really gives it a nice creamy texture. It also helps me use up my avocado before it turns brown! I love smoothies because I can use any combination of things I have in my fridge and it usually turns out pretty well.
It may not look appetizing, but it tastes delicious. And I promise you won’t taste the spinach.
What kind of smoothies do you like?
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The night before my colonoscopy a couple of weeks ago, I woke up drenched in sweat. The extra blanket I had added before I went to bed now seemed like a terrible idea. I looked at my phone. It was 12:30, which meant I had just passed the cutoff for having anything to drink before my procedure until the second round of prep in the morning. (It was close enough to midnight that it probably would have been ok, but I didn’t want to risk it.) I got up to use the bathroom and was so sweaty and shaky and lightheaded that I thought I might pass out. Even though there was nothing in my stomach, I felt nauseous and wondered if I would throw up. It was my fifth colonoscopy, but for the first time I doubted whether I could get through the prep.
Then I remembered the advice one of my best friends gave me when my first boyfriend and I broke up my sophomore year of college. When I called her the next day, she said, “This is the worst you will feel. It will only get better from here.” She was right. I’ve thought of those words many times since that day, and I thought of them again that night as I stumbled the few feet from the bathroom back to my bed. I knew that my body had just woken up really warm, that I was a little dehydrated, and that those initial moments of being awake were probably the worst I would feel that night. If I just gave myself a little time to adjust I knew I would probably start to feel a little better.
I lay on top of the covers for a few minutes, and that’s exactly what happened. I started to cool down. I pretty quickly needed to use the bathroom again (yay colonoscopy prep) and worried that I would pass out when I got up, but I didn’t. I gradually felt a bit better and was able to get back in bed and fall back asleep.
I think we all have those pieces of advice that we’ve been given that stick with us. My friend’s advice doesn’t apply to every situation, but it has stuck with me and it surfaces in my mind when I need it. I’m grateful that it popped into my mind that night, and got me through the colonoscopy.
What advice have you gotten that’s stuck with you through the years?
The idea that I should take up running first seriously came to me during the safety drill at the start of the first and only cruise I’ve been on. I stood on the deck of the cruise ship, in the front row. A crew member with a French accent said, “If you hear the alarm bells, bring warm clothes, bottled water, and all medications and come to this spot. It doesn’t mean we’re going to evacuate, but be prepared to wait a long time while the captain decides what to do.” Even though I knew it was a routine drill, panic rose inside me. My heart started racing and I started to sweat. We hadn’t even left the shore and I felt trapped. Someone behind me made a Titanic joke. Then a thought crept into my mind. “Maybe I should take up running.”
A few weeks later, on my way home from brunch with a friend, the thought occurred to me again. It was a beautiful day, and I thought maybe I could try running that afternoon. A discussion began in my head.
“Where would I put my keys when I run?”
“You could put them in the pocket of your sweatshirt.”
“What about water?”
“I suppose you could carry a water bottle while you run.”
“Do I bring my phone?”
“If this is too hard, you don’t have to run today.”
“Ok, I won’t run today.”
Then five minutes later, this inner debate would begin again, until I realized that I kept debating because I actually did want to try running that day.
Later that afternoon, I put on my yoga clothes, walked to a quiet side street where no one would see me, and started running, one foot in front of the other. I felt light. My anxiety flew off me, my anger exited my body through my feet as they hit the pavement. I felt free. It was more fun than I would ever have thought possible.
I kept running after that first day (and by running, I mean alternating running and walking, which I think counts). I was surprised by how much I enjoyed it. It was easier to get myself to do it than I thought it would be. Unlike yoga or a dance class, I didn’t have to get myself to the studio and commit to a certain amount of time. Running was something I could do where I was, for as much or as little time as I had. I didn’t need to buy any fancy equipment (although I probably should have bought a good pair of running shoes sooner than I did instead of running in old Target sneakers).
I have also been surprised at how much it helps with my anxiety. I started running at a time when I was feeling a lot of frustration, anger, and anxiety about how my life was going and running helped me take a break from those emotions and give them somewhere healthy to go. Now, when I don’t run for awhile, I can feel anxiety creeping back into my body and taking control.
But the most important thing to me about running is that I can do it at all. Only a year before I started, I had struggled to do ten minutes of gentle yoga at home after getting out of the hospital. Running makes me feel healthy, like my body is whole and alive and though it isn’t perfect, it is still strong.
I recently ran the Minnie Mouse 10k in Disney World with my sister and brother-in-law. It was the farthest I’d ever run. In the month before the race, I dealt with an infected abscess, some colitis symptoms, a swollen ankle, and learning that I have developed antibodies to Entyvio. These symptoms derailed my training plan and I worried about whether I’d be able to finish the race, whether there would be bathrooms along the way, and whether I’d injure my ankle. Luckily, I was feeling better by race day. I got really nervous in the starting corrals and worried I’d have to jump out of line to run to the bathroom before the race began. But I didn’t, and I did finish the race (taking breaks to take photos with Disney characters definitely helped).
I know I may have another long road ahead of me as I switch to a new medication yet again. I know the nature of a chronic illness means I probably won’t always be able to run. But being able to run a 10k despite my illness meant so much to me, and as long as I can run, I know I will.
Excited to have made it to mile 4. If it looks like my eyes are half closed, it’s probably because I’ve been up since 3 am.