When Things Get Worse

I don’t quite know how to start this all out when it’s been over three years since I have written anything. Let me begin by saying that I initially started this blog because I was still healthy enough to share my experience with chronic illness. I was by no means well, but I could still think okay and type out some thoughts. I had hoped these thoughts might either help a healthy person become more informed about what it’s like to live with a chronic illness or provide solidarity and comfort to those experiencing chronic illness firsthand. Even writing that little paragraph was exhausting. It will take me days if not longer to finish writing this post, but it is a post I feel I need to put the effort into writing. Also, this will not be my most well-written post. It feels like I am thinking through molasses…

Before I get into the nitty gritty of this update, the reason I am writing is because of the wonderful community of people that I am surrounded by. I am about to write a real bummer of a piece, and I wanted to first remind myself of that the fact that I feel impressed to get this all out is because people care about me. Friends, extended family, my religious community and even acquaintances have consistently checked in on me. My family, and most especially my sweet husband Brandt are asked these two questions with regularity: “How is Megan?” and “What can I do to help”. I am going to answer these both very simply, and you can continue reading if you want more details. I am not doing well. And unfortunately, no there isn’t a whole lot that you can do. But thank you for asking.

As I have discussed in previous posts, ME is a disease that lacks a great deal in terms of research and attention paid to the suffering of patients. To that end, it seems that ME may exist in different forms. Some people seem to have relapsing and remitting ME, some people gradually improve over time, some people stay pretty constant, and some people deteriorate with time. A select lucky few fully recover. Unfortunately, my experience has been one of steady decline. I say this with the slight caveat that I have managed to remain somewhat steady if I am able to avoid major crashes and properly pace. I have managed this delicate balance one year out of nearly the 10 of having this disease. Every other year, I have had significant declines as a result of pushing my body too far. Anyone who knows me will not be shocked to know that I have a terrible history with pacing (the necessary practice of remaining within your diminished energy envelop and not pushing the body into post exertional malaise (PEM)). I will push my body beyond what it is capable of, and the additive effect of this lack of discipline has been a marked decline in my health. I cannot do what I could do 7 years ago, 3 years ago, 6 months ago. I am going to detail my two most recent and catastrophic crashes.

The first came at the end of 2022. I had spent about 9 months waiting to see a cardiologist who treats POTS. He is one of the only specialists on the east coast with this expertise, and my first appointment with him seemed to go well. First off, he officially diagnosed me with EDS (a condition that effects the connective tissue in my body), so that was good to finally have confirmed. He had some familiarity with ME and how that would complicate seeing improvements in my POTS. The better cardiovascular shape you can be in, the more improved your POTS should get. It isn’t a cure, but it can definitely help reduce symptoms. Unfortunately, exercise is dangerous for an ME patient. He gave me a very gradual plan for increasing the amount of time I spent upright during the day. Prior to this appointment, I could spend a couple of hours in the morning upright. I would shower, write, make the bed, do some cross stitching, go to doctors’ appointments, or whatever else I needed/wanted to do during these precious hours of some function. I would then rest for the remainder of the morning/afternoon before I could stand and cook a simple dinner for myself and Brandt. This doctor wanted to cut out a lot of that supine rest during the day. I would start by just reclining with some medication that should improve my POTS symptoms while upright. I was supposed to work towards longer periods of sitting, walking, and even swimming. Some mention was made toward listening to my PEM symptoms, but the emphasis was placed on increasing my activity. So I didn’t listen to that PEM feedback. I kept pushing and pushing, even when those flu-like symptoms came busting their way in. Until I couldn’t push anymore. Until, before I’d realized it, I’d lost those few hours I function I did have. I never recovered from this loss. I never gained back the ability to sit up and cross stitch or write for prolonged periods or take a trip to Target in my wheelchair. It wasn’t easy for me to leave the house before this crash, but I could make it out to dinner every other month or so. I could have friends come visit and talk for an hour. I could sit up and play a few games with Brandt or my family.

I tell this part of the story because it was a turning point for me. I finally realized how important it is for me to prioritize my energy envelope. I had never really taken my PEM as seriously as I should have. Don’t get me wrong, PEM is awful. It is the worst feeling I have ever experienced, and I am not a stranger to sickness and pain. But I kept kinda bouncing back. Until I didn’t. I could keep going into the office to tutor and pushing through the feeling that my entire body had been poisoned. Until I couldn’t. I could go on that trip or go to that dinner or have that conversation or go to that event and just suffer the consequences. Until those consequences made me unable to function. That is what is so insidious about ME. It is not just about feeling sick after doing too much. It is that doing too much will make you permanently worse. Those PEM symptoms are my alarm bell to let up and go rest, not an annoyance (albeit a pretty painful annoyance) for me to push through and ignore.

The other thing this experience taught me was that I have to be careful, even with medical professionals. I get a lot of suggestions for doctors, chiropractors, naturopaths, physical therapists, herbalists, acupuncturists, meditation coaches, diets, supplements, medications, oh just about anything you can think of. And something that I hear a lot from the people making these suggestions is the phrase “what could it hurt??” A lot. It could hurt a lot. I was inadvertently hurt by a doctor who knows what ME is but didn’t have the breadth of knowledge to treat me safely. I do not trust medical practitioners who claim to treat “chronic fatigue”. That is the biggest red flag you could wave in my face. Taking the time and energy to research your suggestion out of a desire to seem polite to you could send me into a crash. Getting into the car and driving to their office could send me into a crash. Recounting 10 years of complicated medical history to someone could send me into a crash. So I am begging you wonderful people. Please stop making suggestions. I know it comes from a good place, and I do not mean to hurt anyone who has done this. I am just trying to politely tell you that it isn’t helpful. Going back to the very beginning of this post, “what can I do to help?” Offer empathy instead of advice. ❤

The consequences of this cardiology appointment were with me for all of 2023. I was barely, barely starting to improve when I was hit with another doozy. I got COVID in December. Something I had been terrified of while at the same time something I had naively convinced myself I had avoided. Hooray! I did it! Global pandemic dodged like I was the chosen one in the Matrix. I stay relatively isolated, not just because a bad virus of any kind would be difficult for my body to handle, but also because of the reality of my illness. I just can’t get out that much. But I wanted to attend my perfect niece’s baby blessing at our church. I can’t be certain this is where I picked it up, but it was a large group of people during peak COVID season, and I got sick days later. It’s hard not to feel like the two events aren’t connected. And of course, I am just so mad at myself! Why didn’t I wear a N95 mask? Or better yet, why didn’t I just watch church from home like I do every week?? I am working on letting go of this. It happened. So I have to deal with it.

The acute infection was brutal. I was not able to take Paxlovid because of a number of dangerous interactions with other medications. I remember sitting in the shower just pleading with God that I wouldn’t have to go to the hospital. Thank goodness that prayer was answered. It was about 2 weeks of the acute illness before I started to feel better from that initial shock. I tried to return to business as usual, hoping that I had avoided any long-term consequences from the virus. I tried to stand to scramble some eggs. I couldn’t. I tried to wash my hair. I couldn’t do that either. I tried to stand to brush my teeth. No dice. I tried to send Marco Polos to friends and family. It left me exhausted and shaky with symptoms. Whereas before I would usually need to actually leave my house to trip into PEM, I was now experiencing PEM after the smallest of exertions. I felt sick, poisoned, weak and depleted all of the time.

And that is basically where things stand now. It has been almost three months since I got COVID, and my baseline has stayed stubbornly lowered. To contrast with even what I was experiencing last year: my sister had her baby shower last summer, and I was able to attend. I was able to do my hair and makeup and sit up for a few hours. I had to leave the event in my wheelchair, and I was in bed for a few weeks after the fact, but I was able to go. My sister-in-law had her baby shower in early February. I was not able to attend. And did I mention that the baby shower was in my house? I was literally in bed a door away from the party but was too weak and sick to attend.

I do not know what will happen. I do not know if I will recover any of my previous baseline. My experience with this illness up to this point is that once gone, it hardly ever comes back. I might see small, marginal improvements. But I also know that I cannot count on that happening. I have gotten my hopes up one too many times only to be let down again and again by what I am able to do. But I also know that I cannot give up my joy for life. I cannot be beaten down by this illness. I am so loved and supported, and that is a blessing I try not to take for granted. It can be very difficult not to dwell on what I have lost and what I might lose still. But living in that grief doesn’t do me any favors.

Thank you for caring dear, wonderful people of my community. Thank you for your support and love. If you want to know what you can do to help, pray for me if that is something you do. Send me a text but unfortunately, please know that responding can be difficult for me. Visits are often inquired about, and please know that I appreciate your willingness to take time for that. Unfortunately, I just don’t have the energy for visits. I do want you all to know that I am hanging in there. I am not lonely. I am not depressed. I am fighting a battle that requires my full attention. And through all of this, I still feel blessed. I have the most amazing husband, family, and friends. Sending light to you all.

Love,

Megan