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?

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Posted by chronicrants

My new gym routine

January 1, 2020

If you have been reading this blog for any length of time, you probably find this title strange. But it’s true, I have a new gym routine!

About 10 years ago, I got into my first gym routine. I had quit my job, and decided to take good care of my body during my time off. I found an inexpensive gym near me where 2 or 3 times each week I would lift weights as my physical therapist had taught me and do some pedaling on the recumbent bicycle. It went well until I got a job.

I tried to keep it up. I went to the gym a few times on lunch breaks, but it was too rushed. I went in the evening a few times, but I was so tired. Mornings weren’t an option; it was hard enough to get to work on time. I went less and less often before finally giving up.

I didn’t know it at the time, but my body was suffering. Untreated Celiac disease, improperly treated hypothyroidism, and the start or worsening of adrenal fatigue were taking their toll. Eventually I left my job and went on disability benefits. So many days, it was hard to walk to my car. The gym was out of the question.

This time around it’s totally different. My approach is, something is better than nothing. This won’t be true for everyone, of course. For a lot of people, even tiny bits of exercise will make them worse. I’m pretty sure I was at the point for a while. Still, I am remembering 15 years ago when I was having a tough time, and a friend encouraged me to lower the bar and do a lot less. Instead of taking a long walk, or even aiming for a shorter distance, I set a time limit. My goal was a 10 minute walk every few days. That’s it. Five minutes down the street and then turn around. I could walk as slowly as I wanted and needed to. This was a great start, and I found myself walking faster, going farther, in those 10 minutes. I no longer saw snails passing me by. Eventually I increased the time to 15 minutes, then 20. Of course, that was a long time ago, and my abilities are quite different. Still, I remember slowly building up from something so tiny.

For a long time now my medical practitioners have been encouraging me to exercise more, especially because they know that there is a gym in my apartment complex. Each time I tried, though, it went badly. Some days I was ok, but others I was exhausted and felt horrible for the rest of the day and sometimes even the following day. Since I never knew how I would feel, going to the gym felt too risky, so I often skipped it. If I had plans in the afternoon, I wouldn’t go in the morning. It was a big hassle. I had to change my clothes, get over there, lift a bunch of weights, ride the bike, get home, and shower. It was a lot!

This time is different. I figured something was better than nothing. Last year an occupational therapist wanted me to do a specific set of weights. Under her supervision it went well, but when my sessions ended and I had to keep it up on my own, I couldn’t, for all there reasons I just gave. I would have a setback after working out, then by the time I went to the gym again weeks (or more) later, I had to start over at a lower weight again. It was incredibly frustrating.

Then I started to think, since that one exercise is what I most want to do at the gym, what if I do only that exercise? No others. I wouldn’t exhaust myself because I wouldn’t do other weights or any cardio. I wouldn’t have to change my clothes; I wouldn’t be exercising my lower body so jeans and snowboots would be ok, and I wouldn’t be sweating. This also meant that I wouldn’t have to take a shower afterwards. I could even do my exercise on my way home from someplace.

For the past two months, I have been going to the gym twice a week. If I need to move a day because I don’t feel well, that’s fine. There’s no pressure. I simply want to keep going. I am only there for 5 minutes, if that. Yes, I feel self-conscious sometimes when folks see me walk in, and then see me leave mere minutes later. But you know what? It’s better than not showing up at all!

I was supposed to go to the gym today, but I strained a muscle in my neck and I am worried about injuring myself. There’s no guilt. No concern. I will go when my neck feels better. If I miss an entire week, that’s not the end of the world. I will not let it derail me. I hope I can get there tomorrow, though, because I enjoy the feeling of accomplishment, even though it is too soon to notice a big difference in my strength.

I am not doing a lot compared to my peers. This is small stuff. But you know what? I can’t get to the big stuff (ok, the slightly bigger stuff) without starting small. Some people can, but I can’t. That’s ok. And even if I never do more than what I am doing right now, at least I’m doing something. This is manageable, which means I’m actually doing it. This is my longest gym-going streak in the past 10 years and I plan to keep it up. Wish me luck!

Meanwhile, could this approach apply to something in your life? Maybe it’s exercise, a dietary change, cleaning your home, making new friends, or something else. Is there some way that the “something is better than nothing” approach could help you, too?

Leave a Comment » | Decisions, Expectations, Fatigue, Limitations, Raves | Permalink
Posted by chronicrants

Not missing sudden onset diarrhea

December 28, 2019

I quickly packed up my laptop, water, reading glasses, phone, and jacket, and walked hurriedly to find the nearest restroom. Sitting on the toilet, I wondered what caused this sudden bout of diarrhea, since this hasn’t happened in ages. And then it hit me: this hasn’t happened in ages!

It feels like a fucking miracle.

There were the times like this that I was able to walk quickly to the closest restroom. There were the times I was walking around outside and had to walk into stores, hoping they would let me use their restroom, sometimes begging, sometime being turned away. There were the times I was walking through less commercial areas, and wondered if I would find a toilet in time. There was the time I was in bumper-to-bumper traffic on a highway in another state, wondering if I would have to deal with diarrhea in the tall grass on the side of the road. Thankfully, I made it off the highway at the next exit, immediately found a motel, and was allowed to use the restroom. There were the times it hit me at a friends’ home, and I was embarrassed by what I thought they might hear and/or smell, not to mention how long I would spend in the restroom. There were a lot of near misses. There were a couple of times that I pooped my pants.

And I haven’t dealt with any of those in ages. In fact, the only diarrhea I have had this year has been easily explainable. It was either due to gluten or my period (maybe I will get my period today or tomorrow?) That was it.

The thing is, these bouts of sudden diarrhea weren’t short-term. This has been happening since my teen years. After 25 years of it, of course I was aware that it had stopped. I have been very aware of how much better I have been feeling, and am incredibly grateful for it. Even so, sitting on the toilet in the library 20 minutes ago, I felt immense relief and gratitude that this is no longer a regular problem for me. I still have loose stools, but not these sudden onsets where I must run to the nearest toilet. I no longer worry about it when I go out. I no longer make a point of searching out bathrooms in public places, just in case. I no longer feel the fear and anxiety of this unpredictable affliction. I feel freedom from all of that.

I am bitter and resentful that this wasn’t addressed properly 25 years ago, but I am also thrilled that it seems to be resolved now. I hope that it never returns.

Leave a Comment » | Gastrointestinal, Raves, Symptoms, Unpredictable | 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

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