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.


Struggling with enough

January 22, 2021

This is far from a new topic, for me or for anyone with disabling chronic illnesses. Still, after so many years, I would like to say that I have finally figured out how to do less. I would like to say that, but I would be lying. But hey, at least I’m making progress, and that’s the important part, right?

I feel like a very productive, active, adventurous, exciting person trapped in a body that can’t do all of those things that I want to do. Granted, even folks without chronic illnesses often can’t do all of the things that they want to do. Just because you don’t have a disabling chronic illness doesn’t mean you have the time, money, or capacity to everything you want to do. Still, being disabled makes certain things impossible.

Let’s ignore for a minute the bigger things that I want to do but can’t: skydiving, backpacking around the world, eating new foods in different countries, going on road trips, reading all of the books that interest me (ok, this would be impossible no matter how healthy I was), exercising regularly and getting strong, owning a dog. Let’s focus on the simple day-to-day tasks like cooking meals, doing laundry, writing, knitting, and working on personal projects. Even with only these, I get overwhelmed.

Every day I write out what I want to do, and every day the list is too long. I can never complete it. I have been making a huge effort to cut that list down and so far it seems to be working. Many times there are only 3 or 5 incomplete tasks instead of the 12 or more that remained several weeks ago. But that’s still too much. I need to be able to finish everything and have time to relax without feeling like I should be doing something more. The problem is simply that I want to do it all! I look at the list and think, that’s too much, I should remove something. But there’s nothing on there that isn’t entirely necessary and that I want to remove, so I keep it all. Then I don’t finish it and I feel stressed out. If I could just make myself attempt less, I would get the same amount down, but probably with less stress, right?

I recently wrote my first book and I want to write another one. I want to help friends with their projects. I want to clean out my closets. I want to spend more time on my volunteer work without feeling rushed or overwhelmed every time. I want to go on more dates (via Zoom these days). I want to have more social time with friends (also via Zoom these days). I want to spend more time reading. I want to do so many things, but there are only so many hours in a day, and of those, there are only a certain number of hours that I’m able to do things.

On a good day I might be able to do things from 10am-5:30pm. That’s a long time. But somewhere in there I need to get dressed. I might need to shower. Meals need to be cooked, dishes need to be washed, laundry needs to be done, cleaning needs to happen. I need to take walks and do my physical therapy. I need to eat. There’s a lot of rest time built into those hours, too; I definitely can’t be engaged the entire time. Some of that time can be used for active activities but some of it must be sitting and working at my computer on a less physical project. At various times I will be answering emails and text messages, too. What most people do in 16 hours must get squashed into those 7.5 hours, and that’s on a good day. On a less good day I have fewer hours, and on a bad day I hardly have any hours at all. Plus, each thing simply takes longer than it used to. Cooking a meal that used to take me 45 minutes now takes me an hour and a half. Getting dressed takes longer. Answering each email takes longer. Between my brain working more slowly and my body’s decreased abilities, many things have slowed down. That means that not only do I have fewer hours, but I can do less in those hours. But I’m guessing this is familiar to you.

The thing is, I still want to do so much! My ambitions and desires are still there, even if my abilities have diminished. I look at my list of goals for the year and it feels so doable, but then I want to work on everything at once and that’s not doable at all. I look around my apartment and want to do ALL THE THINGS. I want to clean the shower, knit a few more rows of that blanket, put together that shelf thing for my shower that’s been sitting in the corner, watch that dvd sitting next to the tv…. A hobby here, a task there, a new project, an old favorite – somehow there’s simultaneously too much and not enough.

The only solution, of course, is to adjust my expectations. I know this, I know it very well, but I still struggle. My plan was to finish this piece with a list of the steps I would take to improve the situation. Or maybe I would discuss a new mindset. The truth, though, is that I have known the answer all along, and I bet you have, too: I can not do it all, and must stop trying to do it all. At least, for now. I must focus on what I can do, and try to be content with that. And who knows? Maybe I will still be able to do some of those other things down the road? After all, if you only write one page each day you will, at the end of a year, have written a book. So if I only write a few sentences, knit a few rows, clean one countertop, sooner or later, in theory, I should be able to do at least some of what I want to do. It’s not enough, but it will have to be enough for now.


Symptoms, spreadsheets, and connecting dots

December 30, 2020

When did I start feeling crappy? Was it two days ago? Last week? When’s the last time I was glutened? When did I last need to use a cane or crutches to get around my apartment? When did I adjust that medication? These things would be hard enough to remember under the best of circumstances, but add in brain fog and days on end without with the structure of a full time job and suddenly it feels impossible to remember with any accuracy. Thankfully, I have my spreadsheet.

It feels like I started the spreadsheet recently, but actually it was September 2013. (Wow, 7 years already!) I had been researching how to treat my various health conditions, and tracking symptoms and medications was recommended so strongly in multiple books that I finally gave in and did it. There are many apps that can be used, but I like my spreadsheet. Everything is in there, I don’t have to worry about an app being discontinued, it’s easy to search for any words or phrases I want, and I can use my laptop’s keyboard to type everything out (that’s much easier for me than tapping on a phone.) When I have random thoughts about things I want to add to the spreadsheet, I record them in the to-do list app on my phone, then later put them in the spreadsheet. Every morning I check my email and look at Facebook. While I’m at my computer, I update the spreadsheet. Easy. Occasionally I’ll pop in some information later in the day, too.

I started with a lot of categories which, to be honest, I never consistently used. There are some blank days, too. Interestingly, as of now (December 2020) there hasn’t been a blank day since March 2019. During the pandemic it’s easier to stay on top of this, but clearly my tracking improved long before that. Still, while blank days are less helpful, I try to remember that making notes sometimes is much better than making notes never.

So what do I record? As much as I can, here’s what I like to track:

  • The length of time I use my ASV machine each night. (An ASV is a form of CPAP machine, used to treat my sleep apnea.) Every morning when I wake up, the machine tells me how long it’s been on. This is also a fairly accurate record of how long I slept.
  • Any delays to taking my medication on a given day. Maybe I forgot. Maybe I ate a meal late and so I had to alter when I took a medication. This doesn’t usually matter, but sometimes I feel off and it helps to be able to look back and see if this was the reason. I’ll also note if I took it early for any reason, but this is rare.
  • My period, and how heavy it is that day. (I also note this in my calendar, for easy access during medical appointments.)
  • Any changes to medications or supplements. I note names of medications and supplements, doses, and times of day that I take them.
  • Any unusual symptoms, or changes in the degree of my symptoms. I’ll note if my right knee hurts one day, and what makes it worse. I’ll note if my fatigue suddenly hits me hard. I always note gastrointestinal symptoms.
  • Any other changes that I want to track. For example, I use a blue light every morning. These are commonly used to treat seasonal affective disorder (and it’s definitely helped mine!) but I use it primarily to adjust my sleep cycle. At my last appointment with my sleep specialist, I mentioned my recent difficulty going to bed at a reasonable hour each night. He suggested that I adjust when I use my blue light in the mornings, moving it earlier by a few minutes each day until I reach the target time. This is a huge struggle for me, as it means I need to get out of bed earlier. That’s not something I’m good at. So now I am writing down what time I use the blue each morning to be sure that I’m more or less on track. It’s taking me ages to move the light, but I look at my notes each morning to get encouragement that I’m moving in the right direction. I can also use it to see if the change in time (and hence a change in my sleep schedule) is impacting how I feel in other ways. Once I reach my goal, I will stop tracking this, but those notes will remain in the spreadsheet for those days. There are many things I track temporarily like this.
  • Unusual activities and overall symptoms levels. I’ll note if today felt like an especially productive day, if I was out at friend’s house all day without getting tired (pre-pandemic, of course), if I took an unusually long walk and how it made me feel, if a short walk made me tired or caused pain, if I stayed up too late the night before and how I feel as a result. I will also note outside factors, like if it’s a dark and dreary day, I will note that because it impacts my energy levels (remember the seasonal affective disorder I mentioned before? Yeah, weather is a big one) or if it’s hot out and I had to spend time outdoors then I’ll note it because that increases my inflammation levels.

As you can see, there are certain things that I track regularly, and others that I track temporarily. Some things are obvious (a change in medication) and some less so (the weather.) The key is, over time I have been figuring out what tends to impact my health and those are the things I note. This has been incredibly helpful.

Recently I was fatigued. It hit me suddenly, which was odd, but I figured maybe I’d been doing too much. I blamed my adrenal insufficiency, which was a reasonable assumption. After a few days I knew that wasn’t the issue, but didn’t know what was happening. Eventually I realized I’d been glutened. My symptom tracking showed me that the gluten explained my previously unexplainable knee swelling and the intense brain fog.

And then there was the time that I suddenly realized that I was having less brain fog. My thinking had been clearer for several days than it had been in a long time. I looked at my symptom tracking and noticed that, based on the timing, this was probably due to stopping some supplements. I had stopped taking those vitamins because they contained corn derivatives in the fillers, and I had recently decided to get more aggressive about cutting corn out of my diet, since I knew I reacted badly to it in larger quantities. It had been immediately obvious that cutting out those smaller bits of corn was helping my digestive issues, but it was only thanks to my tracking that I realized its impact on my cognition.

I could give you dozens of examples of my symptom tracking spreadsheet helping me over the years. It’s not perfect, but for me it works. Ideally I would like to track a lot more information, but I have found that when I try to do more, I get overwhelmed and end up doing nothing at all. Something is better than nothing, so for now, I will continue to do this.

This works well for me, but I know it’s not the right approach for everyone. Please share what works for you, too, because it may give others some useful ideas. Do you track your symptoms? If so, what do you track and what program do you use? What would you recommend to others? I hope that everyone who wants to track their symptoms can find an approach that works well for them.


Burned out and needing to reprioritize

November 16, 2020

I noticed it after the election, though in hindsight it started long before. I tried to ignore it, but I should have known that was a mistake. Still, it gave me the wake-up call I’ve been needing.

For a while I was feeling better than I had in ages. The crisp fall air was delightful, and with the cooler air I had less inflammation. I enjoyed better sleep with the fresh autumn air coming through my open bedroom windows. I was taking 2 walks every day, and one of them was longer than my previous once-a-day walks had been. I was doing pretty well, and thought it would continue at least through the fall and winter.

Then on that beautiful Saturday, we got the election results. It was like I had been holding my breath for months, and I could finally exhale. What a relief! I was having a socially distanced visit with a friend, our first time seeing each other since this had all begun. We had met up in a suburb between where we each live, and had taken a walk. We got the news after the walk, as we stood across the street from each other, chatting. First there was stunned disbelief, then jumping up and down (her), texting everyone I could think of (me) and dancing in the street, literally (both of us.) I was excited all day long.

But here’s the thing about adrenal fatigue: any type of stress on the body can’t be handled. Bad stress causes problems, but good stress also causes problems. I explain it like this: winning the lottery would probably have the same physical impact as the death of a loved one.

So, after many months of the pandemic, a lot of isolation (I live alone and have no one I can be in a bubble with, so I haven’t had any non-medical human contact, even a hug, in 8 months), fear over the election, and then election-related celebration, my body couldn’t take any more. The good thing is that I didn’t have the kind of fatigue “crash” that I have had in the past. Maybe the medication is helping or maybe it was something else, but I’m grateful for that. Still, I felt it, but I pushed myself anyway to keep doing things. I did stuff around my home. I brought my car in for work. Each day, I felt it coming on more and more. Then on Wednesday I had a sore throat and a slight cough. Uh oh.

I’ll interrupt myself here to say that I know fatigue, sore throat, and cough are Covid-19 symptoms, but I was 99.9% sure it wasn’t Covid-19. These are the exact symptoms I get whenever I have adrenal fatigue issues. The cough wasn’t regular – it was one cough every hour or two, a small one, and it had nothing to do with chest congestion. The sore throat has more to do, I think, with my thyroid getting inflamed. So while Covid crossed my mind, it was hours after I’d already assumed this was my usual adrenal stuff. These are the warning signs, the “I better rest NOW or else I’ll get really sick” signs. That’s what I was paying attention to.

So by Thursday I knew I had to rest, and I did. I felt sort of gross and forced myself to shower, which took far more energy than I’d have liked. Aside from that, I rested all day. I ate leftovers. I watched lots of YouTube knitting videos. I crocheted and knit, read a book, watched tv, barely left the couch. It was just what I needed.

On Friday I was still a bit tired, so I spent another day watching YouTube videos, this time about decluttering (something I have been working on.) I felt inspired, so I put away a few things, and made notes about other things I would do when I had more energy. That little bit of activity felt good, so I figured I would be ok the next day. Usually I only need to rest for a couple of days if I listen to the warning signs. (If I ignore the warning signs, I end up sick for about a week and a half, so it’s worth paying attention.)

But then Saturday rolled around. I was still a bit fatigued. No problem, I could put off the world for another day. I watched fewer videos, but still rested. I thought about taking a walk. After several days of rain the sun was out, but the idea of expending that much energy was too much, so I stayed in. Watching videos and reading a book felt like such a luxurious treat! I cleaned up around my apartment a bit, finally clearing the crap off my coffee table for the first time in ages and putting away the clutter that had accumulated in a corner of my living room. This felt good.

Then it was Sunday, and I knew I was ok and should go back to “normal.” The thing is, I didn’t want to do normal. Normal for me felt like a job. And for the first time, I realized that normal had become a job! I was spending so much time on volunteer work and some small bits of paid work, and feeling the rest of the time like I needed to check off items on my personal to-do list, that I wasn’t taking time to relax. Watching a knitting video felt like a luxury I had to squeeze in, and spending time on that instead of on something that was supposedly “productive” was stressful. WTF? I’m disabled. I’m unable to work. So what am I doing? I’m pushing myself to work as much as possible anyway. Hmm. Not good.

Granted, I’m not “working” that many hours. I don’t have many “good” hours in a day, and I have to spend a lot of time cooking, cleaning, exercising, doing physical therapy, etc. Still, I am trying to do too much with my remaining hours. That’s why I have multiple posts I have been wanting to write for this blog for weeks, but haven’t been able to find the time to write any of them. I am writing this now only because I haven’t quite returned to my “normal” routine yet. Even so, my list for today has way too many items on it: a video call with my mom, a video call with someone who wants to pay me for some work that I don’t have time for but don’t want to turn down, taking care of some financial stuff, working on a book that I want to write, doing laundry, decluttering around the house a bit, watering the plants, writing this post, taking a walk, doing my physical therapy… that’s already way more than I have the time or energy for. Plus, I should really shower and leave time and energy for meals. I am trying to do too much, and it’s leaving me burned out.

Taking four days away from the world has done me so much good. It gave me the physical rest that I have so badly needed. It gave me emotional rest. But it also gave me insight. What I am doing is not working, and something has to change. I have always had a lot of drive. When I was in graduate school, working towards a PhD, at one point I worked as a teaching assistant and also the manager of my apartment building, while also volunteering as vice chair for the university’s Americans with Disabilities compliance board. Sure, I was young and still had energy, but YIKES! That was a lot! I’m not good at doing things part way.

On top of that, there’s the problem that while my body doesn’t function the way I want it to, my brain does, and my brain wants to do lots of things. I have a lot of interests, and I keep adding more and more, but not taking things away. During the pandemic I have added one new hobby, one new volunteer job, and one new paid job (the paid job is short-term and very little time, but still takes mental energy.) The thing is, I didn’t remove any of my old activities. Sure, I am no longer driving to doctors or doing any in-person socializing. I am not dating or going to family dinners. But while those things took up time, they also gave my life balance. Now I am lacking that balance. I am all work and little play, and that’s not sustainable.

I knew this before. I’ve been aware of it for at least a month or two, but I wasn’t sure what to do about it. I didn’t want to give anything up, so I kept going. I was managing ok, after all, so that meant I could continue, right? Obviously not. Because typically after this kind of fatigue, I take a few days to rest and then jump right back into things. I never feel this kind of mental and emotional resistance. Things couldn’t be more clear: it’s time to reprioritize. I am not sure what that will look like, but I know it needs to happen.

This is not the first time this has happened, and I’m sure it won’t be the last. I know this is something that many of us struggle with. So as I take some time to figure out how to better balance my life, I hope that you will do the same. It’s so much better to reprioritize before we get burned out, after all. But since it’s too late for that this time, I’m going to listen to my body and do it now.


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