Sometimes the bare minimum is plenty

November 13, 2021

I’ve been wanting to write for weeks but it’s just been too much. I’ve been having a really hard time lately.

Thanks to medication changes, my adrenals aren’t being properly supported, so I have both less energy and lower tolerance for handling stress. And in a few days I have a colonoscopy and endoscopy.

Colonoscopies aren’t a big deal for most people. Not that anyone loves getting them, but you just deal, right? Well, thanks to a decades-long history of medical trauma, medical procedures can be triggering for me. And thanks to decades of undiagnosed gastrointestinal symptoms, GI stuff is also triggering for me. So knowing that in two days I’m going to have to drink a formula that will probably make me throw up, and that will induce the kinds of GI symptoms that I’ve struggled with for most of my life, followed by a medical procedure, where I’ll be up close with people during a pandemic…. yeah, my anxiety is at an all-time high.

Logically, I know it will be all be fine. But logic isn’t helping. My therapist gave me some breathing and thought exercises which help, and I’m just trying to make it through this period. It’s rough.

To make it a little easier, I’m doing a few things that I don’t usually do:

  • I cried. I spent a lot of my life learning not to cry because if I did, people thoughtI was just trying to get attention. (Yup, as a 12-year-old with chronic pain, that’s what I was told by several doctors and teachers. Thankfully, my parents never thought that.) Now, I don’t cry easily. For a week I really felt the need to cry, but I couldn’t let it out. Finally, though, I cried. And then I sobbed. And then I sobbed some more. I cried a lot that day, and it helped a lot. I cried a bit yesterday. I’m still having trouble crying as much as I need to, but I’m working on it. It helps to let it all out.
  • I asked for help. I don’t do this often enough. I posted on my Facebook page, asking friends to make phone calls to manufacturers for me. I was trying to find a gluten-free version of the easier colonoscopy prep. I had made a few calls, but it’s so stressful. For one thing, making any of calls for gluten-free stuff is stressful and exhausting and I’m tired of doing it. But then, doing it for this purpose…. it was just too much. A fabulous friend did the research. She called everyplace on my list, then did more research to find more to add to the list. She struck out, but if she hadn’t called for me, then I would have felt like I had to, and I would have been upset with myself for “failing”, thinking that maybe if I’d made the calls it could have been easier.
  • I asked for help again. Several friends had volunteered to help with the calls, so when that friend struck out, I asked for more calls. Since I couldn’t get the easier prep, I wanted to get an anti-nausea pill to help with the one I’ll be doing. Again, I needed something gluten-free. Three people called pharmacies all over my area to ask which manufacturers they used for this med (there are quite a few who make it), and then called those manufacturers to ask if the med was gluten-free. Again, they struck out. But again, if they hadn’t done it then I would have felt like I had to. It was so great of them to make those calls.
  • I asked to borrow a puppy. No, really! I have neighbors with two of the sweetest, most adorable puppies. Both are house-trained and don’t chew on stuff, so they’re not too hard to watch. I asked if I could borrow one, and the timing worked out that I took one for an hour. He cheered me up SO MUCH! Dogs are great medicine. Normally I would have felt silly asking, but I’m glad I did. And they were glad their dogs could help.
  • I’m giving myself a break. My to-do list is short right now. Really short. And even then I know it’s ok if I don’t get most of it done. In a typical week this amount would be easy to do (my list is usually twice as long), but not now. For example, today’s list is: laundry (already in the machine – win!), vacuum (if it doesn’t happen, that’s ok), prepare some work for my volunteer gig (they know I’m struggling and that I may have to cancel tomorrow’s meeting if I can’t get it done, but I think it will be doable), walk (fresh air is good for me), and watch YouTube videos while relaxing with my knitting. My hope is to get everything done before lunch except the last two. That way, I won’t have anything I need to do this afternoon except enjoy a walk and relax on the couch. And honestly, the vacuuming is unlikely. And that’s ok. The rest of my week is even easier than today.
  • I’m avoiding anything emotionally taxing. When a friend brings up a stressful topic that isn’t necessary to discuss, I ask to change the subject. Stressful movies and books are on hold. I’m keeping it as light and easy as possible. Last night I watched an animated Disney movie and that was perfect.

Is this all enough to make me feel great? No, of course not. But it’s enough to make me not feel worse, and that’s a win. I’ll keep spending time with dogs, watching easy movies, doing my crafts. I’ll keep my to-do list short. I’ll ask for help. I’ll spend time with dogs. (Oh, did I say that twice?)

In a few days, after the colonoscopy, I’ll feel better. Once my medication is back to working properly, I’ll feel even better. (I tried to time things so that it would be back before the colonoscopy, but my doctors were really slow to get back to me about how to proceed after we got the test results.) This isn’t the post I planned to write. That one has to wait. And again, that’s ok. But it’s one that felt right to write. We all have times where we’re struggling more than usual, and it’s ok to do the bare minimum for a while. That’s definitely my plan for now.


Update on the trip dilemma

September 17, 2021

Several weeks ago, I wrote about my Covid-related anxieties about attending an event for someone very close to me. I so appreciated all of your helpful feedback, and wanted to give you a quick update.

I spoke with so many friends and family. I spoke with my therapist. And you know what eventually helped me make up my mind? It was the comments on my previous post. Hearing from folks with chronic illnesses who are also extra nervous about Covid was so different from the many other conversations I’d had. And finally, I knew what I was going to do: I went to the event.

I was very nervous about it beforehand. I was nervous on the way there. I was nervous throughout the event. I kept my mask on. I only took it off twice to drink some water. I kept my distance from folks. I wanted to dance, but didn’t (which was better for my knees, but even with the knee pain, I would have gladly danced if not for Covid fears.) Of course people were talking loudly over the music, and I kept trying to keep my distance, which only made folks speak even louder. When everyone ate, a couple friends and I stood outside of the tent, away from everyone else. I felt bad. We were at the hosts’ table – an honor – and I wanted to spend time with them, but I just didn’t feel comfortable. The whole thing was stressful, but I’m also glad that I went. At the end, I briefly hugged my friend and her daughter. And it felt amazing.

Ideally, once I left then I would have felt 100% fine, but I have to admit that a tiny part of me was still nervous. I was definitely glad when a week passed without news of any problems. And then I forgot about it for a while. At one point I happened to realize it had been more than 2 weeks since the event and I breathed a sigh of relief. Everyone was ok.

Thank you so much to everyone who helped me make this difficult decision. I’m glad I went, and I’m glad it’s over. I wish I could relax at a party with friends, but I’m just not there yet. Meanwhile, another friend is planning the same type of event for next year and none of us an even begin to imagine what things will be like that far out. I only hope it’s easier to make these decisions.


Is it medical trauma-induced anxiety or rational concern?

August 17, 2021

Heads up: I’ll be talking about my Covid-related anxieties. If this is going to make you anxious, you may want to proceed with caution or skip over this post.

I’m stuck. I’ve been stuck for a long time, but now, suddenly, I’m running out of time to become unstuck. There’s a big event in just over a week and I’m supposed to be there. It was supposed to be last year around this time, but as the pandemic got worse, they decided to move things back by one year. I wondered at the time if one year would be long enough. I’m still wondering.

These folks are so close to me. They’re like family. In some ways, we’re closer than family. Last week she told me that if I come, she’ll pick up food for me the day before when she’s in town to do other last-minute prep, and she told me to double-check the restaurant that she thinks will be safe for me, but that of course I can choose any restaurant in town that I want (it’s a small town, so not a big deal logistically.) How sweet and thoughtful is that? She’s preparing this enormous party (think like a wedding, bat mitzvah, or quinceaƱera), planning every detail, including hiring caterers, and she thought about my food needs! I told her that I planned to bring my own food and she said that she knew I’d be bringing a lot of food for the trip (I’ll be staying in a hotel overnight if I go) and that she didn’t want me to have to worry about bringing Tupperware to the party. I’m telling you this to illustrate how sweet and thoughtful my friend is. Wait, did I say that already? Well, it should be said again, because she is!

We’re close, and we would do anything for each other. But now “anything” is being put to the test. The party will be all outdoors. There will be a formal part, with 150 people sitting in chairs for 2 hours, everyone wearing masks. I will try not to melt in the August heat. Then there will be talking and food. Then back to the hotel to rest for a couple of hours. That night there’s a party with 100 people. Almost no one will be wearing masks at the party. Many of the adults will be vaccinated, but there’s no way to know if they all will be. I don’t know if the teenagers will be. Of course, the kids under 12 (there won’t be many, but at least a half dozen) won’t be vaccinated. People will be eating, talking, and dancing.

I can try to sit at the edge for that first part. Drag a chair away from the crowd and wear an N95. I can stay away from the people talking and eating in the afternoon, and eat my lunch in the car or back at the hotel, if I’m willing to wait that long. At night, I can try to keep my distance as much as possible, again wearing an N95 (can I wear the same one again or do I need a new one?) I’ll need to avoid getting close to people I would typically be hugging. I wouldn’t dance, even during the culturally traditional dances during which I may no longer back to dance fully, but I would typically at least stand at the edge and clap and wiggle a bit. Instead, if I go, I’ll be pretty far from the action. I can keep my mask on when others eat, and eat my own food afterwards. It’s all doable. But I’m anxious about it.

(Side note: I know that this entire event would take a huge toll on me. I would need time to recover for all of my usual health reasons. No part of this would be easy, even if Covid weren’t a consideration. It’s just that those other parts wouldn’t stop me. I already decided that it’s worth feeling bad for a few days or more in order to be there. It’s Covid that’s the issue now.)

The problem is, I can argue both sides of this really well. I know that the odds of me getting Covid are really really small. My state (where the party will be) has one of highest vaccination rates in the country. Everything will be outdoors. I will take every precaution. I’ll wear N95 masks. I will socialize only with 2 friends, both of whom are as careful as I am (and who, as of today, are still planning to attend.) We will eat together, away from the others. At the hotel, we will check in and go straight to our room, and stay there until it’s time to head out to the afternoon party. In the morning, we will head home. It will be good for me to get out of town. It will be good for me to be around people I love. I want to support my friend and her entire family.

Now for the flip side. The Delta variant is pervasive. Yes, we have a high vaccination rate, but it’s still too low for herd immunity. Vaccinated people can transmit the virus. I have plenty of reasons to think that if I get Covid, I’m at risk for a more severe case. I got the vaccine, but I have reason to believe it could be less effective for me than for others. People will be talking and dancing, which will expel more air. There will be few masks. There’s a tent, so even though it’s outside, air can’t travel up. During the first part, we’ll be spending 2 hours sitting in chairs. I’ll try to be on the edge of everyone, but I’ll probably still be near others. We’ll be outside, but still, the proximity will bother me.

I could go on and on. And I have. Several months ago I didn’t think I’d go, but I was hoping that might change. Last month I was pretty sure I’d go, and I felt good about that decision. That’s when my friend and I booked a hotel room. We were ready! Then Delta surged and case counts skyrocketed. And now I’m in hell. My therapist this morning actually said that (well, she called it “purgatory”.) She feels that if I don’t go to this party, it will be due to anxiety, not legitimate Covid concerns. Her reason: I’m so careful because of my anxiety that that itself means I’m incredibly unlikely to get Covid. She’s probably right.

But still, I’m anxious. I keep thinking about all of the potential ways this could go wrong. Every time I think about missing this event, my heart breaks a little bit. This is a major life milestone for people I love and I want to be there. Our friendship will survive if I don’t go. She knows how much I want to be there and how much I’m trying to make it work out. She knows that if I stay home, it won’t be a decision that I make lightly. But I want to be there. I should be there.

The thing is, after 30 years of health problems, it’s hard to shake off the feeling that I’d be walking into the lion’s den. I’ve experienced medical trauma after medical trauma after medical trauma during those years. I have been scolded, gaslighted, and maltreated by doctors. I have been sickened, ignored, and abandoned by healthcare systems. I have lost relationships with people close to me. There’s some part of people that thinks, “It will all work itself out just fine.” I don’t believe that. I’m not sure that I ever have.

Maybe a few weeks from now I’ll tell you that I skipped the event and I’m glad I did. Or maybe I’ll be filled with regrets, as we find that no one got sick and I could have safely been there. Or maybe I’ll go and be glad that I did. Or I could go and get sick and regret it, even though I know that last one is incredibly unlikely. But for now, I have a few more days before my self-imposed deadline to decide. I sure wish I knew what I was going to do.

I welcome your input. I feel stuck, and I’d really like to get unstuck. Two days ago I was pretty sure I was going. Yesterday I was pretty sure that I wasn’t. Today I think that I might. Can you offer me anything useful here to help me sort out how much of my concern is reasonable and how much of it is the result of past medical trauma that has no bearing on this decision?


How can I be around people?

April 26, 2021

It has been 410 days since I first entered isolation. More than 13 months. At the time, people kept talking about how long this pandemic might last, guessing it could be several weeks, doubting that it would be more than a few months. At the time, I felt that it would be at least a year, maybe closer to two. After all, that’s what the science seemed to say. A few friends agreed. But at the time, that was hard to imagine how much of that would be spent in isolation. Now, more than a year later, I’ve been doing it, and what’s hard to imagine is how it will end for me.

A quick note for context: I live in Massachusetts. Unlike many other countries, the United States never full isolated at the start of the pandemic (or at any other point). Different regions have lifted restrictions in different ways: some have stopped requiring masks, some have reopened schools, some have removed capacity limits on businesses, etc. However, infection levels have never gone low enough to safely open without further spread. I know that many of you are in regions where there were few, or zero, infections at times, and so things reopened. That has never happened here. Yesterday, Massachusetts had 1214 new cases, and today thousands of kids returned to in-person school for the first time, and we continue to reopen more businesses.

Of course, many people have not been isolated this entire time. Some go to work. Some go to restaurants. Many go to grocery stores. But I haven’t done any of that. In some ways, though, I haven’t been isolated, either. I have seen a few doctors. I have seen a few friends and family members at a distance while wearing masks. But up close, there’s been nothing. No visits with loved ones indoors. No hugs. No kisses. No sex. No physical connection. The only people to have touched me the last 13+ months were a few medical practitioners and, well, that’s just not the same.

Now, though, there’s a light on the horizon. I am supposedly fully vaccinated. I will get an antibody test this week and if it is positive, I will feel much better. If it’s negative, though, that’s harder. There are a lot of false negatives, unfortunately. Even if it’s positive, I won’t be going back to “normal.” I will still be mostly alone, but the difference is, I won’t be entirely alone. The plan is to first see my parents. With any luck, I will get to spend Mother’s Day with my mom! We will even get to hug! They will isolate for 10 days and so will I. Then I will spend a night at their home. I’ll get to leave my apartment. I’ll get to be in a house. (It’s strange to think that I haven’t been in a house in more than a year!)

After that, I will visit with a close friend. She and her family have been isolating nearly as much as I have, and when I ask about her exposure risks, she’ll be forthright and honest (and she and I agree on how risky various things are.) At some point soon, I’ll have her kids spend a night or two at my place. It’s something that we did before the pandemic, and in fact, they were supposed to have a sleepover at my place just as the pandemic picked up and we all went into isolation. I have been doing Zoom chats with the kids regularly, but it’s not the same. The visit will be wonderful.

I am excited for all of this. There will be a lot of hugs and snuggles. We’ll hang out indoors without masks, and it will feel somewhat normal. I can hardly wait!

But I am also dreading it.

The idea of being around people, indoors, hugging, without masks, fills me with anxiety. I know, logically, that it will be fine. They will isolate. I will isolate. All of the adults are vaccinated and the kids are doing school remotely from home. I am at higher risk than my friend or her family, or even my parents, and my doctor says this is ok. But still, I am nervous.

I have always been a nervous, cautious person. I have travelled and gone on adventures, but I also used birth control pills and condoms while in a monogamous relationship, just in case. I like having a backup plan for big things. And this virus, well, it’s a big thing. But I can’t stay in isolation forever. Well, I can, but I know that I won’t. Sooner or later, I will be around people again. I could wait, I know that, but now feels the right time to take these baby steps. It’s not like I’m going to eat in a restaurant or attend a concert. Visiting my parents would be me going to their house, and us staying in their house, except for maybe a masked walk in the neighborhood. Ditto for my visit with my friends (or them visiting me – we haven’t worked that part out yet.) But still, I’m nervous.

My hope is that once I am there, in person, that I will feel better. My hope is that it will feel normal and natural and safe. My hope is that I will relax and enjoy myself. I just can’t quite seem to picture any of that. Yet.


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