When the solution becomes the problem

March 31, 2020

How do you handle fear? It’s one of the most basic human emotions, and something that we all experience from time to time. Right now, I would guess that more of the world than usual is feeling it on a regular basis.

I don’t know if there’s a “right” way to handle fear, I only know my way: planning, control, and facts. When I’m scared about a new medical test or a current flare or even something not health-related, I deal with it by focusing on the facts, and making plans for what might happen. That allows me to feel in control, which in turn reduces the fear. It’s not perfect, but mostly it works.

Right now, that’s not possible. We have few facts; this is a disease that didn’t exist in humans just a few months ago. The facts that we think we know, keep changing. It also depends on which experts we ask.

Making plans makes things worse. One downside to being a planner is that I’m great at looking 10 steps ahead. I read a lot, so I understand a lot about the world, not just in terms of the pandemic but in general. On top of that, I’m smart. I’m also a logical thinking, very left-brained. Put all of that together, and I have some very clear ideas about where the world might be headed. I have multiple scenarios in mind, based on what actions are/aren’t taken and what so-called facts turn out to be true or false. None of them are good, though some are worse than others. Unfortunately, so far my predictions (made 2 weeks ago) have been accurate.

Not only is making plans very difficult, but there’s another wrinkle: they don’t help. There is absolutely nothing I can do to make the situation in the world any better. There is nothing I can do to make it so that I can sooner see my family or my friends, go out socially, date, have sex. Nothing.

The best I can do is make plans to keep myself alive and healthy. So far I am doing that through day-to-day actions. There are no long-term plans to be made. I just have to keep doing what I’m doing: staying in my apartment, carefully cleaning the groceries that my neighbor brings to me, leaving my mail to sit in the corner of my home for a week (I’m cautious and also not that interested in the mail.) My “plans” involve planning meals, ordering extras of my prescriptions in advance, choosing ebooks to download, and texting friends to stay in touch. Those are not long term things.

Looking at “facts” is not only unhelpful, it’s incredibly stressful. It makes me feel a lot worse. Ditto for making plans. I never tell anyone my predictions because I don’t want to upset anyone, but they aren’t great. I hope I’m wrong, I really do. But in the meantime, having those thoughts in my head only makes things worse. Even as I type this, I am being careful not to think about anything in detail.

So what’s the answer? For me, it’s focusing on the day-to-day. As a planner, that has always been incredible difficult. I thrive on thinking about the future, not only to handle fear, but also to increase excitement about fun things to come, to work out solutions to problems, and more. Avoiding thinking about the future is taking a real effort.

I like reading the news, but right now that’s stressful. Still, I don’t want to avoid the world, and there are other things happening. So I am reading the headlines every day, and trying to only read articles that are not pandemic-related. I am not succeeding 100%, but the reduction has still helped immensely.

When family and friends talk about the pandemic, it’s hard not to get drawn in. I have always been political, so it’s hard not to get sucked into conversations about the way our politicians are handling things. But since I hugely disagree with almost everything they are doing, yet have no ability to change it, this upsets me again. Whenever these topics come up, I try to change the subject. Again, I do not succeed 100% of the time, but any reduction is helpful. I am trying.

Focusing on the day-to-day can be especially hard when so little else is happening. When I talk to someone and ask, “What’s new?” they don’t have much to say. I am trying to focus instead on question like, “What have your kids been doing to stay busy?” “What are you reading right now?” “What shows or movies have you been watching?” It helps a lot to have something else to talk about, and it gives me ideas of shows and movies to watch. For my part, I tell them about the books I’m currently reading, the bird that’s building a nest outside my window, or anything else I can think of on a neutral topic. I ask about their families and tell them about mine.

This is hard. There is nothing about this situation that is easy for anyone. I am alone, and not being around other people is hard. Others are with families that are crowding them and they need time alone. Yet others are in unhealthy home environments are need to leave but can’t. We are scared. Kids aren’t learning. People are losing their jobs or becoming overworked. There’s a lot of stress out there. So yes, it’s damn hard.

That’s why I am focused so much on taking it one day at a time. It doesn’t fix anything in the long term, but it makes this manageable for me in the short term. For now, that needs to be enough.

And one more thing: when I need to, I have a good cry. Because that’s ok, too.


Some positives about self-isolation with chronic illness

March 17, 2020

This is a tough time for the world, and the worst is yet to come. Some days I feel ok and others I struggle. I have some anxiety due to past medical traumas. They’re triggered by medical stuff. I manage it by controlling my situation as much as I can and by using facts to dispel fear. So as my therapist said, this is a perfect storm for me: a medical issue with few facts and nothing I can control. Yeah, it’s rough. And there are plenty of things being written about the negatives, so I decided to share some positives.

For context, right now I am self-isolating. I am taking a walk every day (away from people) and otherwise not leaving my apartment. I am at higher risk of complications, and there’s that whole anxiety/control issue I mentioned.

The thing about being disabled and having chronic illness is that I already spend tons of time at home. If you do, too, then these will feel familiar.

  • I already know how to be home for days at a time without seeing other people.
  • I know how to entertain myself alone at home. I have books, projects, and more. I won’t be bored.
  • I don’t feel like I’m missing out on fun activities, because everything is cancelled.
  • Museums, operas, concerts, and more are being streamed online for free. These are things I can’t attend due to health and money, but now I get to see them! What a treat!
  • Everyone is in the same situation. I no longer feel like the odd one.
  • When neighbors walk by my apartment (on the first floor) and I’m still in my pajamas at 11am, they don’t give me strange looks. Again, I’m not the only one.
  • When I’m home watching tv every single night, I don’t feel like a loser; everyone else is doing the same thing.
  • Friends are home more, so they have more time to text during the day, even if they’re working from home. (Shhh, don’t tell their bosses.)
  • Friends are at home and bored, so they’re video chatting during the day if they aren’t working, and at night if they are working. I’ve had more video chats this week than I usually have in 6 months!
  • With so few appointments, I’m getting more done at home. Today I cleaned the kitchen counters. Tomorrow I will vacuum.
  • I know how to practice self-care. I am distracting myself as necessary, eating properly, and doing my physical therapy at home as much as I can.
  • People I know, including some who I barely have any contact with typically, have reached out to ask how I am and to offer help. It’s a great reminder of how wonderful people can be.

After another month or two of isolation I might feel less positive, so right now I am trying to look on the bright side as much as possible. Please share any positives that you can think of in the comments. If you can’t think of new ones but you like any of mine, share those. The more positives the better!

Good luck to all of you. I hope that you and your loved ones are able to get through this as well as possible.


Home alone. Again.

March 11, 2020

Thanks to chronic illness I spend a lot of time at home. Since I live alone, that means that I spend a lot of time alone. Usually I manage this ok, but lately that hasn’t been the case.

In recent months I have been feeling better, which is great! The thing is, as I feel better, I want to do more. But my brain is still way ahead of my body in terms of what I can do. On top of that, what is there to do? My friends are almost all at work on weekdays. At night they are tired and with their families. I used to go out with friends on weekends, but now they are busy with family activities. This is doubly hard for me, because I wanted to have a family of my own. I always assumed that at this point of my life, like my friends, I would be spending more time with a spouse and children. Instead, I am alone.

My days feel empty. I have fewer medical appointments, but that also means I have less to get me out of the house. There is an unending list of things that I can do at home. I have personal projects to work on, closets to clean out, emails to answer, meals to cook. There’s always something. But that doesn’t help the lonliness. Instead, I wander around my small apartment feeling the lack of companionship.

Being single for so long, I have gotten good at going to activities on my own. Still, I don’t always want to do that. It’s more fun to go with a friend. I go to parties alone, I go to concerts alone, I go to book readings alone, I go for walks in the woods alone and you know what? It gets lonely.

On top of that, there aren’t many activities to fill up my days. Most weekday activities are aimed at children, adults with children, or senior citizens. I don’t fit into any of those categories. Most people my age who are around during the day are new moms, and plenty of groups exist for them. For non-parents my age, I haven’t found much. My mother is always busy with one thing or another. I’m jealous. There’s a lot available for retirees. But that’s not for me, either.

This has been bothering me more in the past month than usual, and has come up multiple times in my therapy sessions. That was before the spread of coronavirus and Covid-19. Now I am home even more than I had been before. Events are getting cancelled, even the smaller ones. The few that are still happening just don’t feel like good places for me to be. I was looking forward to a small gathering today, but a couple of people who will be there were travelling this week, and since I am in the high risk category, I’m better off staying home. I want to be around people, but I can’t risk it.

So I am sitting in my apartment typing this. I have not been out of the house today. I may take a walk later, but that is a solitary activity. Tomorrow I will get out of the house, at least. I will go to therapy. It’s not exciting, but at least I will have a face-to-face conversation with someone.

There’s no easy answer to this. It is not the first time that I have felt that way, but I don’t remember how I got out of it before. I suppose I just need to give myself time. Meanwhile, more people are about to learn for the first time in their lives what it’s like to be stuck at home. I just wish we could do it together.


Medications: too little science, too much art

February 24, 2020

What dose should I take? That has never had a clear answer for me.

As a kid in severe pain, the doctors told me to take 3 ibuprofen. They said they wanted me to take 4, but held back because of my size. I was probably around 14 years old then, and under 100 pounds. The thing is, size isn’t the only way to dose a medication. Oops.

As an adult, something slowly became clear: I need small doses of everything. I’m still not a huge person, but I’m certainly well over 100 pounds, and I react strongly to everything.

2020-02-24 11.26.10

A typical starting dose of melatonin is 1-3 mg. I take 75 mcg! I have empty pill capsules which I use to split capsules that, even at their lowest dose, are too strong for me. I open them up and carefully pour the contents into the empty capsules, dividing each pill into 2 or 3 doses. It’s a pain in the butt, but necessary.

Now I’m taking a compounded hycrocortisone (HC). Since it’s a compound, it’s easy to get any dose I need. You know what isn’t easy? Knowing which dose I need!

A book I trust insists that women should start at 25 mg. Patient groups I trust also say to start at 25-30 mg. My doctor says that 15 mg is the right dose. I started at 15 mg and quickly ramped up to 25 mg. I felt much better. After several months, though, I suddenly gained a lot of weight all at once. My doctor felt it was due to the HC and wants me to lower the dose. Given the way I gained the weight (the timing and location) I have to admit that he’s probably right. I had a few other symptoms, too, which could be related. Still, I was hesitant. I felt good, after all. And while for some medications, blood or other tests will give answers as to a medication’s efficacy and impact, HC messes with adrenal tests and makes the results unreliable. Dosing is based only on symptoms. Oy!

If only there was some way to know what the right dose is!

I decided to lower my dose a bit at least. I went down to 22.5 mg. In less than a week I got my period for the first time in months. I don’t think that was a coincidence. There’s been no change in my weight, but I know from experience that steroidal weight gain is a bitch to reverse, so I’m not expecting it to magically disappear on its own.

I’ve had some other good effects, though. I seem to be sleeping better, and I’m waking up feeling more alert and less fatigued. Hmm. That’s appealing.

The question now is: what do I do next? Do I lower the dose a bit more? Hold it at 22.5 mg because it’s working? Change the timing of the pills? I wish I knew!

Unfortunately, there’s no choice but to experiment. This week I will lower my dose again, down to 20 mg, and see what happens. It might be great. I might feel even better. On the other hand, I could feel a whole lot worse. Unfortunately, there’s absolutely no way to know in advance. I just have to try it.


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.


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?


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?


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