Finding my new (figurative) voice

May 21, 2020

I haven’t written here for a while, and I have been trying to figure out why I feel less motivated. Is it the pandemic? Is it that I have run out of things to rant about after nearly 9 years (wow!) of this blog? I have finally had to admit to myself that it’s neither; it’s my book.

Many years ago, I decided to write a book about living with chronic illness. I plodded along slowly for several years, finally picking up the pace about a year ago. More recently, I have been spending a lot of time working on it. But lack of time isn’t why I haven’t been writing here.

In addition to the time I have spent on the book itself, I have also spent a lot of time talking and writing about the book. I am in writing groups with other authors, I talk to family and friends about it, I talk to interested strangers about it, I post about it on social media, I write about it to the followers on my email list. But the effort of talking and writing about the book isn’t what is stopping me from writing here, either.

Finally I figured it out: it’s my voice. You see, I chose to write the book under my real name. I am sharing a lot more there than I am used to sharing publicly. At the same time, I am sharing less than what I have shared on this site. I am finding a new balance, and in the process, I am holding back on some things. The question I ask myself isn’t, “Should I talk about this in an email or on the blog?” Instead, it’s, “Should I talk about this under my real name or use my pseudonym?” For years I leaned towards the latter but more recently I have been leaning towards the former. And as I share more with my other audience under my real name, I struggle with not sharing those same stories here. After all, how can I maintain my anonymity here if I share the same story under my real name?

Don’t worry, though, I am not abandoning this blog! Instead, I am simply finding a new balance. As with many things in life, this is not a one-time task but an ongoing process. At the beginning of the book, I had to find that balance and I did. Now am finding it again, and the pandemic only complicates things. When I eventually publish the book, I am sure I will need to find that balance again. This is just how things go. But I am sure that I will be find my ranting mojo before too long.

Meanwhile, I would love to know, have any of you ever written books about chronic illness? If so, did you write under your real name or a pseudonym? Did you enjoy it? Was it well-received? Please tell me all about it in the comments! Feel free to share the link to your book so that others can find it, too.

As for the link to my book, well, first of all the book isn’t done yet, so there’s no link. But also, there’s that whole anonymity thing again. If I share the link to a book that’s under my own name, then I won’t be so anonymous anymore, will I? And while I may one day be comfortable sharing all of the stories about myself that are on this blog (I’m mostly comfortable with that now, in fact), there are some stories here about family, friends, dates, and others that are not mine to share. I always checked with them before writing those stories, but they agreed to be mentioned on a blog that was anonymous, and it wouldn’t be right to change that now. So this blog will remain anonymous. Still, my hope is that when my book is one day published, you will find it anyhow. And that it will bring you joy and comfort.


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.


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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