In December, I posted a five month update about all the progress I'd made with my chronic illnesses since going to Mayo Clinic at the end of July/beginning of August 2017. It's now been a full year since Mayo Clinic, and it seems appropriate to post another chronic illness update. So here's what's changed since then.
Since December, I've continued to make progress in many ways. The most significant is with my interstitial cystitis. Since I developed it in 2016, I've been at a constant pelvic pain level of at least a 6 (on the Kira Pain Scale, which I know for a fact is skewed upward from a regular person's pain scale). But in April, I started taking gabapentin. At first it didn't do anything, but once I hit the right dose, my IC pain level dropped dramatically. It's now down to about a 3 or 4, the same general level as the rest of my body. While the gabapentin didn't have any effect on my fibromyalgia pain, despite being approved for that, its effect on my IC was something like a miracle. Gabapentin, basically, is to my IC what antidepressants were to my fibromyalgia.
Since then, I've been able to reduce my bladder instillations from once every other week to once a month. I've been able to start wearing skirts again, instead of just dresses all the time, and yesterday I was able to give loose sweatpants a successful test run. I've also been able to add a few more foods to my diet, and I'm much less afraid of setting off a horrific flare if I eat the wrong thing.
Even as my diet expanded in terms of the IC, it also shrunk in terms of my digestive system. Shortly after my five month update, the abdominal swelling shown there decided to return, and we realized that the interstitial cystitis was not the cause. After some more runaround from doctors, it was determined that some sort of gastrointestinal issue was causing the swelling. So I went to a gastroenterologist. We tried a lot of different things: elimination diets, probiotics, laxatives. I began taking Miralax on a daily basis to help with the IBS-C symptoms--and it did, with the exception of the swelling and the bad breath. The bad breath ended up going away after a round of antibiotics I was given for a cat bite, but the swelling continued to sit between the 38 to 39 inch circumference region. (For contrast, my bra band is 34 inches.) It was uncomfortable, and I did not enjoy the way it looked.
Finally, after considering my diet since November/December, I decided to try going rice-free for a month. Within a week, I was able to take Miralax twice a week, instead of every day. My gassiness let up some, and my heartburn stopped entirely. Within two weeks, my stomach had shrunk below 38 inches for the first time since December. Now, a month later, my stomach continues to slowly shrink, and it feels a lot less swollen and uncomfortable.
Around this same time, I got blood test results showing the continued rise of my cholesterol and triglycerides (thanks, genetics). As such, I made an effort to increase my protein intake and reduce my carbs--by eating peanut butter for my snack every day. Soon thereafter, I started having bouts of intestinal cramping and diarrhea. For a while, I was really confused. I thought that my lactose intolerance had somehow suddenly got much worse. But the pattern didn't fit, and the lactase I've been taking to combat my lactose intolerance wasn't working. Finally, I finally figured out that I am not only rice, corn, oats, and lactose intolerant, but also peanut intolerant. So my struggle with having a limited diet continues!
But at least I no longer look pregnant.
Yet despite the improvements with my interstitial cystitis and my irritable bowel syndrome, I've run into a problem: my overall improvement rate has plauteaued.
Soon after that five month post, I began struggling to keep up with doing 30 minutes of aerobic exercise four days a week. I have continued to struggle since then. I'm still on the four day schedule, but my attempts to add more on have failed repeatedly. After some research, I discovered that the study which recommended graded exercise therapy for people with chronic fatigue syndrome has since been thoroughly discredited. As such, I've decided not to add weight-lifting onto the schedule. I am trying to do five minutes of exercise on the two days of the week that I don't do a full thirty, but have failed so far.
In June, I started a new online class with my MLIS program that I expected to be easy. It turned out to be harder than the first few classes I'd taken, and I felt quite overwhelmed. After the first couple of weeks, I realized that part of the problem, both with this class and with my continued failure to finish editing CUCUY, was my lack of faith in my own mind. After years of severe brain fog, I'd lost faith in both my intelligence and my writing skill (which is part intelligence but also a kind of spiritual "sensing" that I suppose you could call inspiration). I no longer believed myself capable of doing those things well.
But, as I reminded myself, I had continued to write even when I was at my sickest. In fact, while I was bedridden prior to Mayo Clinic, I had written a novel-length fanfiction that I'm still quite proud of and that many people like! And before that, even as I'd become sicker and sicker, I'd managed to get As and Bs in all my undergraduate classes and achieve my B.A.
So I decided that every time I got scared about my schoolwork or my writing, I would tell myself that, sick or not, I'm still smart and I'm still a writer. The last one, especially, is not something that will ever change. Even with my brain fog, I am capable of intelligent and inspired work. And telling myself that has helped--at least with the anxiety.
But the anxiety isn't the only problem. Despite the fact that this class is only a beginning level Master's class that certainly isn't harder than the classes I took in my Bachelor's degree, I've continued to struggle. By mid-June, I knew for sure that my health was plateauing. There were many signs: my struggles with exercising, for one, but also, despite going to three hours of church every week for months, I was still a fatigued mess during the third hour. My struggle with school, and how many hours it took me to do the work of a single class, was another sign.
Then, the first week of July, after a few too many appointments and a difficult group project that I spent three straight days working on late into the evening, I set off a CFS/fibromyalgia flare. It took me three weeks to get back to "normal."
At Mayo Clinic, the idea they expressed to us was that, before anything else, we needed to find the limits of how much we could do without having flares. Once we knew our limits, we were to sit at the very edge of them, and over time, with luck and the help of other treatments, our limits would expand. We could keep pushing outward. I've been working off that theory since then. But it's clear that the extent to which I've been pushing myself is no longer tenable.
I don't know whether this plateau I've hit is one where I've stopped improving entirely or if it just means that I'm improving much more slowly now. Either way, I'm hitting the point that I've been afraid of hitting ever since I went to Mayo Clinic. I'm hitting the point where I might remain for a long, long time.
With that, I've found myself conflicted. So many people have Opinions about my illnesses. Not only do they have Opinions about what I should do, they have Opinions about how I should feel. Some people tell me that the healthy thing to do is to keep fighting to get better, to keep pushing myself, and to never give up. Some people tell me that the healthy thing to do is to accept my reality and find peace in it. Others tell me to focus on the things I can do, rather than the things I can't, and to be grateful for the progress I've made. During this past month, I've struggled to know which one of these ideas is right. I'm pretty sure now that the last two are what's right for me. But whether or not I can actually get myself to feel that way is another issue entirely.
I had planned to start doing an hour of volunteer work each week in the fall, tutoring students on English. I no longer intend to do that. I do intend to try driving again, to see if my brain fog has improved enough that I'm comfortable on the road. I'm a little wary about that, because I know that my reaction times are far below normal, and I've read plenty of studies about how driving fatigued is worse than driving drunk. But I need to at least try.
Otherwise, I'm going to stay where I am. I'm going to exercise four days a week, with an additional five minutes here and there where I can. I'm going to go to church and to maybe as many as three other events outside the house every week. I'll take a single graduate class and work on my book where I can in between.
I've gotten off track with my daily stretches and with the deep breathing that Mayo Clinic recommended, so I intend to add those back into my routine. They shouldn't be too much trouble, especially now that my stomach's not in the way. I also, after having an appointment with a very rude cardiologist who kept making fun of me for not remembering things and for doing my own research, have been confirmed to still have POTS. As such, I've decided to start taking salt tablets daily, instead of just as an emergency measure.
With all of that, I hope to continue to make a little progress. But on the whole, it looks like I'll have to be happy with where I am now. And I know I should be. I've come a long way from where I was before Mayo Clinic. Before, I would not have been able to live a happy and fulfilling life. Now I'm at a place where I can. I'm so, so grateful for that.
But I still struggle, watching others my age and seeing all the things they do that I can't. It makes me feel like I'm living in a different world than them. It's hard to make new friends when you have nothing in common to talk about (and very few people want to hear about a life full of sickness; it's kind of a buzzkill). I hate that everyone around me has to change their lifestyles to accommodate me. I hate the thought that I might be a burden on my family for the rest of my life.
I also worry about school and writing, because in order to get my Master's degree, I have to finish it in a specific year limit, and that means towards the end I will have to double up on classes. And with all the energy I've had to put into my schoolwork, I'm still not making much progress with my book. It all makes me even more uncertain about whether getting my MLIS is worth it. I miss being able to write and edit, and the thought of being stuck struggling the way I have been this month is pretty frustrating.
So right now, even though I know I should be okay with where I am, I just feel bitter and sad. After having had fibromyalgia for eight years, you'd think I'd be done grieving, but apparently, I'm not. I'm not sure how to get through or how to get myself to a place where I can accept this. Hopefully, I'll be able to figure it out soon.
Thanks for reading this update. I'll be back next week with another life update in the form of a "taking stock" post.
Images via boldsky.com, gwenyi.com, mnn.com, and petetheplanner.com.
I'm an unpublished novelist, primarily of YA fantasy, and a freelance editor. I love psychology, cats, social justice, and love! I'm also a huge fangirl. Basically, stories are my life.
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