Taking a chance and hoping it works

June 17, 2021

I’m exhausted. I’m so tired that I just want to fall asleep right now, sitting in my chair. That’s not like me. Sure, I have chronic fatigue, but the exhaustion usually causes me to feel unable to do things, but not to feel sleepy quite like this. This week is different, though. And the reason is my new temporary 4-legged roommate.

If you’re been reading this blog for a while, you know that I want a dog. I have wanted a dog my entire adult life. First I worked and travelled too much, and then I was too sick. Recently, though, my health has improved and stabilized. It’s not great, and I know that a lot of the stability comes from being home during the pandemic. Without spending energy on seeing friends, going to events, running errands, or seeing most doctors in person, I had less fatigue, less pain, and generally better health. Was it great? No, of course not. But it was better. It allowed me to think, not for the first time, about getting a dog.

I’ll skip the details, but basically I have a temporary canine friend here for a while. It will probably be for a month or two, but could be a bit less or a bit more. I’ve done dog sitting before, but this is different. Harder.

For starters, with most dog sitting there’s a known end date, and my dog sitting has never been for more than two weeks. This time there isn’t an end date, and it will definitely be more than two weeks. Also, the dog is usually well trained and this guy isn’t. He’s somewhat trained, which is great (no accidents!) but not entirely. I have had to take him for more walks than with other dogs. I have to watch him carefully to make sure he doesn’t get into things that he shouldn’t (he tried to chew the edge of my carpet.) He’s just over a year and has puppy energy. He naps, but then wants to take a long walk and play.

Thankfully, he sleeps through the night, because I’m not sure how well I’d be functioning if he didn’t. And it’s in the 70s and not humid, which is the best weather I could hope for at this time of year. Still, I’m worn down. Yesterday, during our 86th walk (ok, maybe only the fifth of the day, but it felt like more!), I began asking myself what each of my doctors would say about my current state. My guesses:

  • Therapist: Keep at it, you can do this. But be sure to rest and don’t overstress your adrenals.
  • Rheumatologist: Are you resting enough? Do the best you can, and we’ll see how you do, then talk about it as things progress.
  • Naturopath: I think you’re doing too much. You need to slow down.

Of course, I could be way off. Maybe they’d each say something completely different. Not that it matters, because I’m going to keep at it. I know things will get easier as we get to know each other, form routines, and settle into patterns. And it’s short term. I’m not going to have him for the next ten years, only for a matter of weeks or months. And he’s so cute! I have to admit that when I’m exhausted and then look at that adorable face and pet that soft fur, it does help me to feel better. But then I remember that I need to wash the dishes, and I’m just so tired. I’ve even been eating less the last couple of days because I’m just too tired to eat and digest, and to get up for more food.

I knew the first days and weeks would be the hardest. I’m hoping that he’s with me for long enough that I get to discover if things will get easier. Maybe they will, and I’ll learn that I really can manage having a dog. I hope. Because if not, then I’m going to have a hard time recovering from this, both physically (omg, I’m so exhausted) and emotionally, because I would need to give up on the hope of getting a dog, at least for a while. Only time will tell. I’m really hoping this works. But either way, at least I’m trying. And I feel good about that.


Feeling overwhelmed by All The Things

May 20, 2021

I have a bad habit of doing too much. The problem is that I want to do All The Things. Something looks interesting or exciting and I add it to my long list of things to do, which I know I’ll never complete. Then something looks extra interesting and I decide to do it now. Or I notice a thing from my ever-growing list and think, I should really do that now. It seems like a good idea in the moment. But then…. Yeah.

I keep adding new things without taking anything away, and you know what happens? Predictably, I get completely overwhelmed. Of course. It’s so obvious right now, but when I’m in the moment, I don’t realize it’s happening. This time, it got to the point where I realized I didn’t feel like I had time in the middle of the day to read a book or enjoy a spontaneous phone call with a friend. I’m disabled and unable to work full time, but I’m trying to work or be “productive” during as many hours as I can. And sometimes that’s too many hours for my own good. Plus, even my current level is too much, but starting next week I’ll be adding a new, big thing. (It’s so exciting! I’ll tell you all about it after I start.) So last week I decided that enough was enough, and I pulled out a pen and paper and wrote down everything I’ve been doing.

It’s not like I didn’t already know what’s been filling my time, but I need to see it all listed out. I went through the last few weeks and the next few weeks in my calendar. I went through my weekly to-do list. I wrote down the obvious things like paid work and medical appointments. I included my volunteer work and time I’m spending on a book I’m writing. I added in social time with friends. I noted the less-obvious-but-completely-necessary things like cooking, cleaning, daily exercise, and not-daily-but-should-be-daily physical therapy. And then I looked at the list, shook my head, and said out loud, “No wonder I’m so stressed out and overwhelmed.”

The question was, what to do about it? Nothing in that list on its own was burdensome, but it added up to too much. We all have limits on our time and energy. We have limits from our health, jobs, families, and the number of hours in a day, among other things. For me, it’s mainly my health that limits me. I needed to get within my limits.

Everything on my list is important to me, but something’s gotta give. I eventually decided that I care enough about it all that I won’t remove anything, but I will reduce. That volunteer work is too much. So I talked to the other volunteers and one of them is happy to have me hand over several projects to them. That not only reduces the time I’ll spend overall, but also my stress levels and overwhelm, since I’ll have less responsibility there. (I’ll still be volunteering there, but on a lot fewer projects.) Instead of working on my book every week, I’m going to work on it every other week. I hate to cut back on paid work, especially since I have so little of it, but I have to prioritize health appointments and exercise, home stuff (like cooking and laundry), and social time with friends. To make room for those, I’ll be cutting back a little bit on paid work.

I want to do more more more. Always. But my brain is writing checks that my body can’t cash, and that’s no way to live. This past week I’ve been making an effort to take more breaks. I read a little more and worked a little less. That means that some things are getting done more slowly than I’d like. I had to order a supplement that was running low. I also wanted to add a new B vitamin when I placed the order. The week before I had researched several B vitamins online and then called a few companies to ask about their vitamins’ ingredients, and they either said the items contain gluten and/or corn, or they couldn’t tell me. It was stressing me out, and taking way too much time. I was running low on the necessary supplement. So you know what I did? I ordered that supplement and decided the B vitamin has waited this long and it’s ok if it waits a bit longer. Was I happy about it? No. But did I have less stress and a little more time to relax? Yes. And that makes me happier now that it’s done.

I am making a huge effort to not fill every minute. If I have half an hour free before a Zoom call I could try to catch up on email, but usually I just feel overwhelmed and end up scrolling Facebook, which doesn’t help at all. Instead, I am now trying to use that half hour to take a walk, call or text a friend, read a book, or pick up my knitting. Or I check in with my body and realize I’m tired and just need to rest. This is so much better than continuing to do things and not realizing until it’s too late that I overdid it.

The key now will be to keep it up, and to stop trying to squeeze so much stuff into my non-rest time. Just because I am not resting at this minute does not mean I have to “do something.” Ok, maybe at this moment I’m busy typing out a blog post. But you know what I mean. I’ve felt bad about writing on here so much less often, but I knew it was what needed to happen. Then I felt inspired to write on this topic, because it’s one that I’m pretty sure many of you can relate to and I knew I had something to say, and here we are. I had the time and I’m not feeling rushed.

I now have exactly 2.5 hours before I need to do a particular thing later. I have been making a big effort to have fewer items on my to-do list each day, and today I managed it. In those 2.5 hours I don’t have to do anything except take a walk and eat dinner. It would be nice if I could do a few physical therapy exercises, too, but it’s a gorgeous day outside and I might try to sit outside and read a book for a bit. That’s it. Sure, I did lots of things this morning. That happens. I dealt with some paperwork for a medical appointment. I finished filling out a 28 page form for my moderate-income housing and pulled together the accompanying 35 documents (seriously, WTF?!?), which I need to do each year. I took a walk. I spoke to my mom (while I walked – bonus for multitasking!) I ate lunch. I answered some emails and did a little client work and a little volunteer work (just a few minutes of each, but still.) I got advice from a friend. And now I am typing this. Seriously, that is already such a full day! And I feel the need to do more than that?!? That really has to change.

This has been a problem for me for many years. I do too much, cut back, feel like things are going better, add in some new things that strike my interest, and get overwhelmed again. I don’t believe I’ve broken the cycle completely, but if I can be in the “doing better” stage for a little while, I’ll be happy. And for now, that will be enough.

So tell me in the comments, do you struggle with this too? How do you handle it? How do you cut back when you want to do All The Things? I’d love any tips you can share!


Vaccine ableism

March 19, 2021

For weeks, whenever someone asked me when I would be eligible for the Covid-19 vaccine, I told them I would be eligible at the start of Phase 2. They nodded. It made sense. It made sense to me, too. After all, I have a bunch of risk factors. Phase 1 was for medical personnel, and Phase 2 would be for folks with risk factors due to age and/or health conditions, as well as essential workers who weren’t covered in Phase 1 (grocery store worker, utility workers, delivery workers, etc.). Phase 3 was for everyone else. The first part of Phase 2 was for folks who were 65+ or had 2 or more co-morbidities, which I knew I had. But somehow, oddly, I was wrong.

I started to suspect something when I saw the list of conditions that Massachusetts was counting as co-morbidities. At the time, the state’s website simply offered a link to the CDC’s website. The CDC (the Centers for Disease Control and Prevention) offered two lists. The first list was for more serious conditions. I didn’t have anything on that list. The second list was where I fell. I have 5 different conditions/medications that fit into that list. But for some reason, Massachusetts wasn’t using the second list, only the first one.

Then Massachusetts did something mysterious: they added smoking and obesity to the list of eligible conditions. So now people I knew were qualifying because they smoked and were obese but were otherwise totally health. Meanwhile, I wasn’t eligible yet despite having multiple autoimmune conditions and taking an immunosuppressant medication, in addition to other things that were also suspected to be co-morbidities, like central complex sleep apnea. In fact, I wasn’t going to be eligible early at all. Nope, I was getting lumped in with the general population in Phase 3. WTF???

Over and over friends would ask, when are you eligible? Over and over I responded, “I’m not eligible until the general population.” I lost track of the number of times someone said, “I can’t believe I’m eligible before you!” or asked “Why the hell aren’t you eligible before me?” (Spoiler alert: the answer is ableism.) I watched friends with similar health conditions getting vaccinated in other states. I watched friends get vaccinated because they were technically eligible, even though it wasn’t intended for them. For example, one was eligible because she works for a hospital, even though she works in administration, having no contact with patients, and has been working at home all year.

Meanwhile, at my last medical appointment my doctor said, “You need to get the vaccine as soon as possible.” That was immediately followed with, “You aren’t eligible until Phase 3.” I tried to convince myself that waiting wouldn’t matter. After all, I’m staying at home, right? But what happens when I can’t stay home? What really changed my mind was the breast cancer scare I had several weeks ago. I absolutely had to be seen in person. What happens the next time I have to see a doctor in person? Because sooner or later, it will happen again. The vaccine won’t protect me 100%, but it’s a good start.

And to me, that’s the point. Yes, everyone wants the vaccine. But while some folks want to get it so they can eat at a restaurant or hang out with friends (both very important, and I’m definitely not negating the importance of either one), those are optional. There are ways to see people outdoors and at a distance with masks on. Meanwhile, some folks must get medical care, in person, up close, and indoors. Yes, medical offices take precautions. Still, these are not optional visits, and we should be as protected as possible.

Are there folks who need a lot more medical care than me? Yes. Are there folks who are at much higher risk of Covid complications? You bet. I’m not suggesting that people like me should have been first in line. Not for a second. I am saying unequivocally, without the slightest hesitation, that we should not be last in line. It is inexcusable.

This is nothing short of ableism. I have had many doctors tell me that I am at higher risk. My rheumatologist keeps reminding me to stay isolated. I have been following the science. I see folks who have higher risk factors than me who are likewise not eligible until the general population. And yet, Massachusetts did not take us into account. Who determined the order of the vaccine eligibility? Were there doctors and scientists involved? How on Earth did this happen? Why allow folks on that first CDC list but not the second? Why allow people who are obese and have type 2 diabetes to get vaccinated at the start of Phase 2 but not allow someone with type 1 diabetes and severe asthma until the end of Phase 2, and not allow someone who is 54 years old with type 1 diabetes and liver disease until the general population? This makes no sense.

This reminds me of one year ago, in the spring of 2020, when we were first learning about the risk factors of having severe complications from this horrible virus. Over and over people said that most folks shouldn’t worry too much because it mostly just effected the sick and elderly. They were saying, “I’m not worried because I’ll probably be fine, it’ll just kill others.” They were saying that they didn’t care about our lives. That our lives didn’t matter as much. That our lives had less value. Well, fuck that. Our lives have plenty of value and suggesting that it’s okay for those who are sick and/or elderly to become incredibly ill and possibly die is horrifying and inexcusable.

And now, one year later, so many who are sick and older are told to wait because their/our co-morbidities don’t count. What bullshit!

This week, Massachusetts announced that in one month everyone will be eligible for the vaccine. So many disabled people, already at a disadvantage because of difficulty accessing the system, will be forced to compete with healthy, less-at-risk folks for those coveted timeslots. If the past is any indication of the future, a lot of disabled folks will end up at the end of the line, behind healthy folks. This is not ok.

There is nothing I can do about this. I called the governor’s office and reached out on social media. I have spoken up about it in the few ways that I could. I know that this post won’t change anything. But hey, this site is called Chronic Rants, after all, so I am ranting. I am ranting because once again, the government is being ableist and getting away with it and it makes me want to scream.

Maybe we shouldn’t be first, but we absolutely should not be last.


If only

February 8, 2021

Regrets over how my health was handled in the past aren’t new, but my sudden memory of some particular past conversations with one of my doctors still hit me hard recently.

So many times I’ve thought, if only I’d been diagnosed with Celiac disease as a child. If only my doctors had taken me seriously. If only it hadn’t taken more than a decade of symptoms to realize I had autoimmune disease. If only I had known that frequent diarrhea and cramps weren’t normal. If only my adrenal fatigue had been caught earlier.

Then there are the more specific instances. If only when I asked my doctor to test me for lactose intolerance, he hadn’t lied and said there was no such test. If only I’d realized then that I need to find someone new. If only I hadn’t been stuck in crappy HMOs and had had more options when it came to choosing doctors. If only the gastroenterologist I finally visited hadn’t labeled me with IBS and then written me off. If only the doctor I went to with complaints of fatigue didn’t tell me to “give it more time” even a year after it began.

But then a few weeks ago I suddenly remembered something. It started simply enough: I was curious to know if my hydrocortisone, which I started in 2019 for adrenal fatigue, was putting me at higher risk for severe Covid. I looked up the prednisone dose that’s considered risky, then found an online conversion to hydrocortisone. Both are steroids, and HC is basically a very low dose of prednisone, which I’d been on many times in the past. When I was on prednisone in the past, it was always to treat pain, but I was thrilled with the extra energy it gave me as a bonus – I felt so much better! Of course, I didn’t like the other side effects so much. It messed with my memory, made me very emotional, gave me severe brain fog, caused me to gain a lot of weight, and more. But the energy was fantastic!

I realized eventually that the energy boost had been a clue. I’m sure many people have extra energy on prednisone, but I had a huge boost when I took even tiny doses. Even 2.5 mg helped and 5mg felt great. My fatigue had begun after a virus in 1999 and never got better, but it was mild for many years. The first time I had the extra prednisone energy was in 2006. It wasn’t until 2011 that I became too disabled to continue working. My guess is that I would have left work a year earlier if I hadn’t been on prednisone for many months prior. It wasn’t until 2013 that I learned I had adrenal fatigue. These dates are about to become very relevant to the story.

I can’t count the number of times I wished the adrenal fatigue had been caught earlier. It’s by far my most disabling symptom. It’s the symptom that is stopping me from working, the one that’s stopping me from getting a dog. When my naturopath diagnosed my adrenal fatigue in 2013, she started me on supplements that helped a lot. But then that company went out of business. We tried a different supplement and it helped, but it never worked as well as the first one. I struggled for years, and just couldn’t quite increase my energy the way I needed to. Feeling “better” felt just a little bit out of reach – far enough that I longed for it, but close enough that I kept trying.

Eventually I switched to a new primary care doctor, a functional medicine practitioner, and he acknowledged my adrenal fatigue. My previous PCP hadn’t. He immediately recommended hydrocortisone, but I didn’t want to be on steroids at all, and definitely not for the rest of my life, which was a very real possibility. So I continued to struggle. Eventually, my naturopath also thought that HC was necessary but still, I resisted. I continued to adjust my diet, change my exercise, alter my supplements. I tried so hard. And finally I had to admit the truth: it wasn’t working.

In August 2019 I started HC, compounded for me at a pharmacy that makes it gluten-free and corn-free, something that wouldn’t be available through the local pharmacies. The difference was noticeable. I felt a lot better. I also gained a lot of weight and my hair started to fall out. It took a while to adjust the dose, but finally, it seems to be right. My energy isn’t what I want it to be, but it’s a lot more stable. I still can’t work. I still can’t care for a dog. But I can generally function better, and I’m no longer having the “episodes” that I previously had when my adrenals became too stressed. I lost most of the weight I had gained and my hair stopped falling out (aside from what’s normal, of course.) So it seems that where I’m at now is about the best I can achieve, at least for now, even though it’s not nearly what I want it to be. And that brings us back to now. If only I’d tried HC sooner, before so much damage had been done to my body.

I looked at the calculator’s output on the computer screen. My HC translated to a very low dose of prednisone. Low dose of prednisone. That was familiar. And then I remembered a doctor from all of those years ago. The one I never saw for adrenal fatigue, the one I saw before I even knew what adrenal fatigue was, the one who first tested me for adrenal fatigue nonetheless. I saw him for many years. First he treated my PCOS (polycystic ovary syndrome) and then my hypothyroidism. He diagnosed me with Hashimoto’s disease, which for some reason my previous doctor hadn’t diagnosed. As my fatigue persisted, he tested me for adrenal fatigue, but he only did blood tests, which did not show it. If only he had done the saliva tests, which are more accurate. Still, he didn’t blow off my symptoms, even while he wasn’t sure what to do. When I came off of prednisone at one point and complained of the renewed fatigue, he suggested that maybe I should continue taking a very low dose permanently. He said that even 2.5mg or 5mg daily could make a huge difference. I would be on it for the rest of my life.

I scoffed. Daily steroids? For the rest of my life? No way! I wouldn’t even consider it, and I privately questioned his judgment. I saw this doctor for about 12 years, so it’s hard to remember exactly when this was, but it was before I’d ever been diagnosed with adrenal fatigue, probably between 2008 and 2011. He’d run the test, and even though it came back negative, he must have suspected the truth. He offered me a treatment that I turned down but that, in hindsight could have helped so much. If only I’d listened.

The truth, of course, is that I can’t be sure. Maybe taking prednisone back then, before I had gotten so much worse, could have caused other problems. Maybe the short term side effects would have caused me to give up. Besides, I had real reasons to reject it. My short term side effects were bad, but I was even more worried about the long term side effects: brittle bones, cancer, vision problems, and more were quite possible. He had said the odds of those side effects were lower with such a low dose, but since I was only in my 30s, I would have been taking it for decades. That’s a long time to take a medication with such severe potential side effects. I had been misled, ignored, dismissed, and misdiagnosed by so many doctors, that I had good reasons to not automatically try whatever they suggested.

I had very good reasons for turning down the suggestion, so I am trying to remind myself that I made the best choice I could with the information I had at the time. And there’s no way to know what the outcome would have been even if I’d tried it. But still, sometimes it creeps back in: if only….

I looked at the computer screen. My dose of HC came out to 4.38mg prednisone. The doctor had suggested 2.5 mg or 5mg. He’d been right. Crap. If only I’d listened. If only I’d tried it.

If only I could learn to let go of the if onlys.


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