The inconvenience of diarrhea – even at home

February 5, 2020

No one likes to talk seriously about poop. It’s something we all* do, yet it’s treated as an unsafe topic. Commercials for diarrhea medications are laughed at by people. Folks snicker at farts. No one feels comfortable on the phone saying, “Hey, let me call you back in a few minutes. I just need to run to the bathroom.”

For most people, it’s easy to avoid the topic. They don’t think about their poop much. But then there are those of us with digestive issues. I talk about poop with a lot of my doctors. Color, size, consistency, frequency, and odor are questioned and explained. I keep an eye on things. For too many years, I didn’t realize how abnormal my bowel movements were. If I had, maybe I could have been diagnosed a lot sooner. If my doctors had asked my questions about it, I’m guessing I would have been diagnosed sooner.

Well, here on Chronic Rants, we talk about poop. And today’s rant is about the inconvenience of diarrhea. I was having a perfectly fine day yesterday. I was being productive around the house. I wasn’t feeling motivated to work on a project that I’ve been trying to get done, but aside from some reduced motivation, everything was normal. I was on track to go out in the afternoon and evening.

In the afternoon I felt off somehow. I’m still not sure how. Maybe a bit low in energy? I decided to stay in for the afternoon and only go out in the evening. My stomach started to feel a bit off. Again, I’m not sure what exactly felt wrong, but something did. I pushed myself to go for a walk. It was a nice walk, with a clear blue sky overhead – a real treat! I stopped to chat with a neighbor and pet her dog for a while. I wasn’t feeling quite right, but I pushed through; at least I was petting a cute dog!

When I said goodbye to the neighbor I continued on my walk in a big loop that would end up at my apartment building. Then I felt that feeling and I knew: I better get home. Quick. I cut back to take a shorter route home. There wasn’t much I could do. I was walking within my apartment complex, so there were no public bathrooms around. I walked faster. I saw a neighbor that I know up ahead. I slowed a bit so we wouldn’t cross paths. I hated to slow, but making small talk would have been worse. I knew I was walking funny, trying to clench certain parts and walked quickly at the same time. I got into my building and felt that bad feeling. I fumbled to open my door. I tore off my coat and rushed to the bathroom. In my anxiety, I fumbled with my pants. I got them down just in time.

I think a few more seconds could have been my downfall. But I made it. Explosive diarrhea isn’t fun, but having it in public and in my pants would have been so much worse.

I felt a bit better after that. I had gotten the bad stuff out of me, whatever that might have been. But here’s the thing: I felt messy. I cleaned my ass area the best that I could, but it wasn’t good enough. I don’t have a bidet. Chances are, I was clean anyway. But I didn’t feel it. So I jumped in the shower. I had already showered that morning. The diarrhea had left me feeling weak and tired. But what else could I do?

I got undressed, then found myself back on the toilet. Eventually I took that shower. The hot water felt great. After a while, I got out, exhausted, but feeling better.

Obviously I wasn’t going out. I couldn’t be sure the diarrhea was over and, even if it was, I was now too weak to go out. I put on super cozy cloths and settled under a warm blanket. I spent the night watching tv and knitting. At some point I wanted food and decided to keep it simple. I cut up some garlic onions, and carrot. I added homemade chicken broth from my freezer. I threw in shredded chicken that I keep in my freezer. I added gluten-free ramen noodles. Voila! An easy home made chicken noodle soup. It was just the right dinner for that kind of night.

I woke up feeling like shit, no pun intended. That diarrhea could have been so much worse. Still, it stopped me from doing so much yesterday, and today as well. It’s frustrating as hell. And it’s not something I can talk about in a socially acceptable way. I can talk about a recent sprain and my friends shower me with sympathy but bring up diarrhea and suddenly I’m persona non grata.

We all* poop. For some of us it’s more of a struggle than for others, but it’s something we all* do. So maybe it’s something we should all be able to talk about? What’s your experience been with this type of situation? Let’s talk about it!

*Folks with colostomy bags still produce feces, though the verb may not apply.

2 Comments | Expectations, Frustration, Gastrointestinal, Isolation, Limitations, Rants | Permalink
Posted by chronicrants

The help I didn’t know I needed

January 29, 2020

The last week and a half have been really rough. But I’m trying to learn from it.

First there was a minor injury. I’m still not sure how it happened, I just know the pain was intense and different than what I typically experience. That lead to a visit to the doctor followed by an MRI later that day. I was out of the house, in pain, rushing around, for 8 hours. Not surprisingly, between that rough day and the pain, that lead to increased adrenal fatigue.

Here’s where I made my mistake: I didn’t take an extra dose of my adrenal medication on that day when I was in the most intense pain. I didn’t take it on the day of the doctor visit and MRI, either. Nor did I take it in the days following. I kept thinking that if I got some rest, I would be ok. I was wrong. Finally, I took that extra dose two days ago and I am finally feeling like my old self again. I’m still in a lot of pain, but at least the fatigue isn’t dragging me down to the point where I can barely function. I am once again able to answer emails, run small errands, and write this blog post.

2020-01-29 12.36.18

So now it’s time to learn from my mistake. You see, I thought about taking that pill last week, but I dismissed the idea. The fatigue gave me brain fog, and I couldn’t think clearly enough to realize that it was what I needed most. I told myself that I would be ok with some rest even though I should have known from past experience that it wouldn’t suffice.

Meanwhile, I saw my mother twice that week. The second time she commented on how much better I looked. I know I didn’t look that good, so I must have looked truly horrible the first time. Friends who don’t usually check on me were texting daily to ask how I was feeling. Other people knew I was struggling, even if I didn’t see it myself.

So this morning I sent a text message to a few select people: my parents, several friends who are my chosen family, and a couple of other close friends. These are the people I feel are most likely to know when I’m suffering from adrenal fatigue. It started with, “Hey folks, I want to ask a favor.” I went on to explain my mistake in not taking my adrenal medication sooner and why it happened: fatigue leading to brain fog which affects my judgement. Then I continued, “So the favor is simply, when I say that I am struggling with adrenal fatigue, please remind me to consider taking some extra of the medication.”

Ideally, I would make myself a note and leave it someplace that I would see it, but the truth is, when I feel this bad, I won’t see the note. Or I will see it and ignore it. I spent two days doing little except watch tv. I could barely get dressed. In that state, I can’t trust myself to be the only one to look out for me. That is why I ended the message with, “At the end of the day, of course this is my responsibility. But since you are the folks I am most likely to talk to about ongoing symptoms, I wanted to reach out because sometimes I need a bit of help. Thanks for being awesome and supportive in general!”

I think this is something we can, and possibly should, all do. It is especially important for those of us who live alone, or who live with others who are not supportive. Find one or more people in your life who you can trust, and simply ask them to remind you to do a couple of specific things when they see you struggling. Maybe you want to give them a short list, and ask them to send it to you. Maybe, like me, you only want to ask them to remind you of one thing. This isn’t the kind of thing you will ask of everyone you know, but of just a select few who know you well, who support you, and whom you trust.

Part of self-care is asking for help. Today, I took that step. What about you?

Leave a Comment » | Fatigue, Healthcare, Isolation, Limitations, Medication, Raves, Relationships: Family & Friends & Dating & Sex | Permalink
Posted by chronicrants

Advice between chronic illness folks

October 16, 2019

I don’t know about you, but it took me a looooong time to figure out how to handle flares. The truth is, I’m still learning. But over time, thankfully, I have found some things that help. Sometimes I take the learning process for granted; after all, I have had symptoms for almost 30 years now. A phone call a few nights ago changed that.

A friend was in the middle of a flare, and having a rough time. They were dealing with both the horrible physical symptoms as well as the emotional fallout of having to miss a much-anticipated event that night. There was also the all-too-common self-recrimination, wondering what they did to cause this. Maybe they should have done less the previous week when they felt so good. Maybe they should have rested more. Maybe maybe maybe.

I’m the queen of “what ifs” so I really get that. I do that to myself all the time, as much as I try not to. I’m getting better, but it’s still a struggle. This time, though, it was someone else who was struggling, so I was able to step outside of my own issues and help them.

My friend was only diagnosed last year, which really isn’t that long ago. It takes a long time to learn how to handle chronic illness. I wish I had had someone to guide me, but unfortunately, there was no one in my life at the time with that kind of experience. Now, I am glad I can be that person for others.

First, I talked my friend out of the emotional spiral. Sometimes our bodies are going to flare, and there’s nothing we can do about it. Maybe they did overdo it, but there was no way to know in advance. And maybe they didn’t overdo it, and there’s no way to know that, either. Maybe they could have done less last week, and they still would have had the flare, right? The weather was terrible; not only are we going through a seasonal change, but it was a very stormy day. There’s a good chance the weather was at fault more than anything, and what can anyone possibly do about that? Besides, once you’re in a flare, blaming yourself won’t help at all. And as much as we think we can figure out the cause and prevent the next flare, we can’t. Ok, sometimes we can, but to think we can do that every time is just unrealistic. That would imply there’s a way to prevent ever having a flare again, and we know that isn’t true. We only wish it were.

Once my friend was feeling a bit better emotionally, we talked about how to handle the current situation. I suggested some fun tv shows to watch, etc. But here’s where we get to the part I most want to share with you. Without thinking much of it, I mentioned some things I do that my friend thought was brilliant and it got me thinking, maybe not everyone does this? So let’s share our tips!

I know I will have more bad days. I don’t want them, but they are inevitable. So I prepare for them. Just like I have bandaids at home for the inevitable future cut or scrape, and acetaminophen for the inevitable future headache or fever, I also keep things around for future flares. Here’s a short list:

  • Fun, lighthearted movies saved on my Netflix and Amazon Prime accounts, plus a few old dvds.
  • Easy to watch tv series saved on Netflix and Amazon Prime.
  • Chocolate and other comfort food.
  • Frozen leftovers of healthy meals I have previously made.
  • Low-energy hobbies on hand. For me, this is currently knitting and crochet, which I enjoy on all but my worst days. I also like to read and listen to audiobooks when I feel up to it.

These work for me, but you will have your own items. On top of this, several years back I read a tip on Chronic Babe to make a list of things to do during a flare, since we can’t always remember these things when we’re dealing with tough symptoms. One problem I have found is that when I feel especially bad, I don’t even think to look at the list! So I recommended that my friend make a list, and tell several close friends and family members about it – anyone who they might talk to during a flare. That way, their friends and family can remind them to check their flare list, where they will find a list of things to do and ways to think.

My current list has fewer items like the ones above, which have become second nature at this point, and more items around my thought process, mostly recommended by my therapist. These help me to stop blaming myself or assuming things will get exponentially worse. I keep the list in the Google Keep app on my phone, so it’s always handy. Even if I don’t have the energy or am in too much pain to cross the room to my desk, I always have my phone on me. That’s key – keep your list where you can easily find it when you need it. Keeping it at the bottom of a heavy box on a high shelf is definitely not the most useful place for it!

It sucks, but we all know that we will have bad days, so we might as well prepare for them when we’re feeling ok. What do you to to prepare for the bad days? Do you have a flare list? What’s on it? Please share in the comments, because I’m certain you will have ideas that I and others haven’t thought of, and we all need to learn from each other!

8 Comments | Educating, Expectations, Fatigue, Frustration, Isolation, Limitations, Pain, Raves, Relationships: Family & Friends & Dating & Sex, Support, Symptoms | Permalink
Posted by chronicrants

Grieving all over again

September 30, 2019

Chronic illness is never easy, and some days it feels harder than others. Lately, what has been getting to me the most has been my limitations, especially the ones due to Celiac Disease. I am angry and resentful that I can no longer attend an event and eat the food, friends no longer invite me over to dinner, I can’t simply grab lunch someplace while I’m out for the day. I hate having to worry about every little trace amount of gluten, having to wash my hands carefully before eating or taking a pill or getting a hair off my tongue. I can’t stand that I will never again be able to spontaneously kiss someone without first making sure they brushed their teeth.

But why now? I gave up gluten almost eight years ago. Is it because the increasing restrictions and caution came on so slowly? It took years for me to realize how sensitive I was to gluten. Even so, it’s clearly bothering me more now than it ever has before.

It was my therapist who pointed out what should have been obvious: I was grieving. It’s natural to go through the 5 stages of grief multiple times with chronic illness. After all, we don’t suffer a single loss, but many losses, which come up at different times.

Thinking about this several days later, it occurred to me something else that should have been obvious: the reason this is happening now is because I didn’t have the capacity to grieve before. I didn’t even have the capacity to acknowledge the magnitude of my loss before. I was busy surviving. I gave up gluten just a few months after leaving my job. At the time, I still hoped to return. During the next year I realized I would not be going back to work any time soon, I eliminated even more gluten from my diet, I found a naturopath, I researched new doctors for my thyroid care, I signed up for government benefits, I hired a lawyer, and more. I didn’t have time to care about giving up gluten. Besides, back then I thought it was just a matter of giving up some foods. I didn’t yet know all of the other things I would be giving up.

Over the following years, I continued to research treatments, doctors, tests, and more. I dealt with government benefits, changing apartments, and other logistical issues. I started businesses and had them fail. It was a busy time, and I remained in survival mode.

And then it slowed down, in a way. I am not looking to move right now. My benefits are stable for the moment. My health is always a concern, but with the latest addition this summer of hydrocortisone, my brain fog has lifted and my energy has somewhat improved. My health felt more stable for a bit, my mind was more clear, and I was able to think. At the same time, in the past year I have come to realize more than ever just how cautious I must be about gluten. The two came together and hit me hard, all at once. It’s no wonder I’m grieving.

Add to all of that one additional fact: the permanence. All of my health issues are permanent, but there are degrees. My pain will never go away, but it could improve. My fatigue may or may not ever go away, but there’s hope that it will, or at least that it will improve. I can work towards these goals. But when it comes to gluten, there’s no way I will ever be able to tolerate even the tiniest crumb again unless there is some medicinal breakthrough. Maybe that will happen, but I can’t count on it. Right now, there are no treatments on the market. That means I can’t let down my guard at all, and possibly never will. Again, it’s no wonder I’m grieving.

The important thing now is to let myself grieve. I have lost a lot, and I have years of it all catching up to me at once. This is hard, especially for someone who prefers to avoid unpleasant emotions, but I know it’s important. So these days, I am trying to sit with my feelings, to acknowledge them. It’s not easy, but I know that one day the worst of the grief will pass. I may never again be able to kiss my mother on the cheek, but one day I will come to accept it and it will make me less sad.

Do you grieve your chronic illness’s impact on your life? Please share in the comments. Sometimes it helps just to share what we’re going through.

4 Comments | Expectations, Frustration, Isolation, Limitations, Rants, Symptoms | Permalink
Posted by chronicrants

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