My Hidden Healing

Tag: chronic-illness

  • How I Mentally Processed Entering a New Flare Up

    How I Mentally Processed Entering a New Flare Up

    How My Flare Up Started

    A few months ago, my ulcerative colitis symptoms started increasing. I started having more stomach cramps, mucus in my stool, and urgency to use the bathroom. These changes were troubling because, before this increase in symptoms, I was the healthiest I had been since my diagnosis. I wished so badly to remain healthy that it took me time to come to terms with the fact that I was getting sick again.

    How I Dismissed My Flare-up

    At first, I told myself my change in symptoms was just part of the variability I always experience during remission. Although it’s called “remission,” I’ve never considered ulcerative colitis remission to be a true absence of disease. Instead, I view it as a state where my symptoms are well-managed, not impacting my everyday life, and where my inflammatory biomarkers are within normal ranges. The disease itself doesn’t just vanish. Hence, I figured that my symptoms were temporary and not concerning.

    Then, I caught influenza. It hit me while I was in a physics lab, and for the next week, I was out of commission. The worst part was that I had a fever. Having a fever meant I had to stop my ulcerative colitis medication. My medication compromises my immune system, so if I stayed on my medication, I risked developing a severe infection. Ultimately, I ended up being off of my medication for about four days while I recovered from the flu.

    After my stint of influenza, my ulcerative colitis symptoms continued to worsen. I convinced myself this disease progression was a short-term side effect of stopping my medication. My doctors were hopeful of this as well. I told myself that once my medication kicked back in and suppressed my immune system, my symptoms would go away.

    How I’m Handling My Flare-Up Now

    Now, I’ve finally come to terms with the fact that my ulcerative colitis is indeed active. It’s been almost four months since my initial increase in symptoms, and they show no signs of slowing down. Additionally, I had a stool test done, which showed significantly elevated inflammatory markers and resulted in my doctor confirming I was in a flare-up.

    This acceptance has been tough on me mentally. There’s so much more I need to think about now that I know I’m in a flare up. I need to look up where bathrooms are before I go out in public, to determine who I should inform that I’m sick, and to read the ingredient labels on every food I consume carefully.

    What’s more, it doesn’t help that I keep thinking of the what-ifs. What if I had managed my stress more effectively? What if I had been stricter with my diet? What if I had followed a better sleep schedule?

    If I had been more careful, would I be sick now?

    When I have these thoughts, I try to be kind to myself and remind myself that I’m doing the best I can. Nobody is perfect. All I can do now is focus on the present and try to re-enter remission.

    To do so, my doctor increased the dose of my current medication and prescribed me a new drug to add to my treatment. I am also now following a more ridge and liquid diet. Hopefully, my symptoms will start improving soon.

    All in all, with this being my third major flare-up, I feel “stuck out in the same ol’ storm again,” as Kacey Musgraves said. However, I cling to her words that “it’ll all be alright.”

    Educational Resources

    If you’d like to learn more, here are some web pages with information about ulcerative colitis flare-ups and how to manage them:

    1. Ulcerative colitis flare-ups: 5 tips to manage them (Mayo Clinic)
    2. Ulcerative Colitis (Cleveland Clinic)
    3. Managing Flares and IBD Symptoms (Crohn’s and Colitis Foundation)
    4. Symptom Management: Inflammation and IBD Symptoms (Crohn’s and Colitis Canada)

    Thank You For Reading

    Although today’s blog post wasn’t the most cheerful, I’ve committed myself to sharing both the bad times and the good ones. I hope that by doing so, I’ll give a more accurate portrayal of living with chronic disease and show others who are suffering with chronic illness that they’re not alone <3

    Song lyrics: Rainbow by Kacey Musgraves

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  • Easy Tips for Volunteering When You Have a Chronic Illness

    Easy Tips for Volunteering When You Have a Chronic Illness

    Staying involved in your community can be hard when you have a chronic illness. Here are some simple ways to make volunteering more doable.

    1. Look for remote volunteering opportunities. Volunteering from home can be a great way to help your community when you are sick, need constant access to resources like bathrooms, or don’t feel up to leaving the comfort of your home. Since the COVID-19 pandemic, there are plenty of places with roles where you can volunteer remotely. These roles may include virtual tutoring, writing letters to senior citizens and people from other isolated groups, and non-profit event planning committees.
    2. Be open about your chronic illness and/or accommodations you may need when inquiring about volunteer opportunities. Once you find an organization you want to volunteer with, one of the easiest ways to find a role that you are able to do is to ask the volunteer coordinator if they have any roles that would fit or could be adapted to suit your needs. Even if you don’t feel comfortable sharing your diagnosis, consider asking about things you know would impact your ability to do the volunteer role. For example, if you get physically fatigued easily, ask about how physically active the volunteer role would be and if there are places you can sit down during your shift.
    3. Listen to your body. When your body tells you to eat something or take a break, listen to it. Although you may feel pressured to keep going so the people around you don’t think you’re slacking off, your needs are nothing to be ashamed of. Even if you can push through this one time, listening to your body can keep you from becoming physically burnt out and make the volunteer role more feasible for you in the long run.
    4. Share your chronic illness and/or additional needs with your fellow volunteers. If you are concerned about what the people you volunteer with will think about your extra breaks or needs, consider telling them why you need them. Sharing your chronic illness can be a good preemptive measure in case you ever need help from the people around you during a symptom flare or medical emergency. Additionally, if your health condition is rare or largely unknown, this can be a good opportunity to advocate for people with your condition. It can be a chance to help educate others about your condition so they know what to do the next time they meet someone with the same chronic illness.

    Thanks for reading! If you have any tips you’d like to share, please leave them in the comments.

  • How My Ulcerative Colitis Impacts My Workout Progress

    How My Ulcerative Colitis Impacts My Workout Progress

    Last fall, I got back into weightlifting. Since then, my exercise regime has become pretty consistent. So much so that I now plan my weeks around my exercise routine. Tuesday evenings are for yoga, Sunday mornings are for spin class, and four other days of the week are reserved for my weightlifting split: glutes and hamstrings, back and biceps, chest and triceps, and quads and calves. But, although my fitness has massively improved since I started this journey, I can’t help but sometimes get frustrated with the limitations my body has placed on me.

    When I got back into weightlifting, so did my roommate and her friend. When we went to the gym together, we all used the same weights for most exercises. I felt like, for the most part, I was keeping up with them. Now? Not so much. While they keep progressing and moving up to heavier weights, I feel like I’m being left behind.

    My first thought was: is it my diet? I’ve come to the conclusion that my diet has likely contributed to my plateau, but maybe not in the way you’d expect. It’s not that I eat poorly. I meal prep most of my meals, and I rarely eat fast food or dessert. I stopped buying my one cup of daily coffee at cafes and started making it at home. I focus heavily on consuming lots of protein, by eating scrambled eggs, drinking high-protein milk and using it in my cooking, and eating some form of protein (mostly salmon, chicken, or beef) every day. To manage my ulcerative colitis, I also follow a low-FODMAP, lactose-free, and gluten-limited diet. The only things I feel my diet lacks are in fibre intake, diversity of foods, and protein supplementation. However, these dietary weaknesses are largely not by choice.

    My ulcerative colitis places limitations on what I can eat. Due to my ulcerative colitis, fibre has never sat well with me. While some people with inflammatory bowel disease (i.e., Crohn’s disease and ulcerative colitis*) find certain types of fibre (like soluble fibres) beneficial, fibre has always caused me indigestion. Additionally, like many other people with inflammatory bowel disease (IBD), any food I have not previously identified as a “safe food” has the potential to knock me out of remission and back into active disease or worsen my symptoms when I have active disease. “Safe foods” vary from person to person, so while guides like the low-FODMAP diet can help identify foods that are often safe for people with IBD, the only real way to determine safe foods is through trial and error. Since deviating from my regular diet and trying new foods carries significant risks, I tend to stick with foods I know I can eat. Furthermore, I have yet to find a protein powder that doesn’t make me sick, so my protein intake is smaller than it could be. Every protein powder I’ve tried thus far has caused me bloating and stomach upset.

    Aside from my restricted diet, fatigue is another factor I think has dampened my progress in the gym. And I don’t mean the fatigue you feel when you don’t get enough sleep. I mean the kind of fatigue that can result from chronic illness. From your body attacking itself and then having to repair the damage it made. From being on medication that blocks your immune system. From nutritional deficiencies caused by your body being physically incapable of absorbing the nutrients it needs. From having to get up multiple times in the night to use the bathroom. From extreme blood loss and being anemic. From your body being systemically inflamed. From the mental toll that having a chronic and culturally taboo illness takes on you.

    This fatigue influences many aspects of my life but especially impacts my physical capabilities. Before my illness, when I used to fail a repetition while weightlifting, I knew it was because my muscles were too sore and tired to complete the movement. But now, it’s often because my body can’t afford to spare any more energy for a task that isn’t paramount to my survival. This lack of energy prevents me from reaching actual muscle failure during repetitions, which, as most gym rats would tell you, is critical for maximizing muscle gains.

    Sometimes, I can’t help but mourn what my body could do before my immune system went rogue and started attacking my large intestine. However, I remind myself to be grateful for what it can still do. At my sickest, lifting weights wasn’t even in the question. I was lucky if I got out of bed for more than an hour. I am in awe of how far I’ve come when I remember that. With this progress in mind, I look forward to tomorrow through the lens of who I could become. So, I keep showing up for myself, loving myself, and giving my body extra care and attention. Because that’s what the me of tomorrow needs, and like Billie Eilish said, “I’m in love with my future. [I] can’t wait to meet her.”

    Please feel free to share any ways you’ve found to balance your fitness and fatigue below. I’m always looking to learn from others!

    *There are other types of IBD as well.

    Song Lyrics: My Future by Billie Eilish