Finding my muse

May 30, 2022

After 11 years of writing this blog regularly, I was surprised recently to discover that I didn’t write anything last month at all. I figured I would make up for it this month, but somehow time has passed and the month is nearly over. It’s not like I didn’t have anything to say about chronic illness. I always have something to say about chronic illness. But sometimes putting it all into words isn’t easy.

This blog has given me a lot. It has provided catharsis has helped more than I expected. It’s been a source of great advice from wonderful readers. It has been a wonderful way to connect with others who have chronic illnesses. It’s also been a diary of my journey. I started writing this blog just a few months before I had to leave my job. I wrote about health insurance issues, applying for disability benefits, and more. When my memory is fuzzy and I’m not sure when or how things happened, I can look back to this blog. Several people have asked me to write a memoir and if I do that, this public diary of sorts will be incredibly helpful. This blog has also given me the confidence to not immediately dismiss the idea of writing a memoir. For some reason, you all have been following my journey and want to read more, so maybe it would be helpful for others also.

Meanwhile, I slowed down writing this blog when I was working on a different chronic illness-related project and I needed to reign things in. But then the other project ended and I suppose I felt burnt out, so my writing remained slow. Still, I’ve had chronic illness on my mind. As always.

I’m looking at the next few weeks and wondering how I’ll fit everything in: a mammogram, an eye appointment (I get seen more often than I otherwise should due to risk factors from medications I’ve taken), therapy, physical therapy, occupational therapy, dietician, job-type stuff, social stuff…. it’s a lot. That’s on top of keeping a food journal all day every day and putting a lot of effort into figuring out what to eat and when, thanks to my current temporary elimination diet. Meanwhile, for the past two months I’ve been applying for rescue dogs (yay!) It’s hard, constantly being told that a dog isn’t local or that there’s already a long line for them. Now there’s an excellent dog who I may be able to adopt. I haven’t met him yet and it might not work out, but just the idea of possibly taking in a dog next week has me on edge. How on earth would I balance those early, more difficult weeks of having a new dog with all of these appointments? And yet, how could I not adopt him if I think he’s a good match?

Meanwhile, I’m sitting at my desk, very aware of the pain in my hands (hence the upcoming OT), the worsening pain in my toes (that I’ve had for 20 years and that no one has been able to explain), and the sweat drying on my body because I took a walk on what everyone else calls a pleasant day and I call way too hot. I want to take a cold shower but also dislike cold showers. I want to continue listening to my excellent audiobook, but also feel gross and want to clean up. I want to finish writing and editing this post, but should get up to take medication. I want to rest, but know that I need to eat lunch soon to stay on schedule and not mess up the timing of my afternoon medications. Even moment-to-moment, chronic illness can be hard to forget. (Typing this, I realized that I really did need to get up and take my medication, so I did. I was surprised how much worse the pain in my toes has gotten in the hour that I’ve been sitting down. Ouch! I’ll be doing lots of sitting today!)

Today is a holiday in the U.S. and it’s quiet in my neighborhood. Few people have walked by, which is unusual. Neighbors are travelling for the long weekend. I have no place to go, and no one to go with. But I want to travel. I miss travel. Will I ever feel save travelling again? Will they ever figure out how to prevent and/or treat long Covid? Because that is what’s stopping me from travelling right now. I’m not worried about Covid killing me as much as I’m worried about getting long Covid. I definitely don’t need additional chronic health problems!

And yet, aside from travel, I’m still not sure what’s safe. June is Pride month, and there are so many events I want to attend. Many are hard to get to without public transportation (definitely something I want to avoid during the pandemic), but I thought I might attempt a few that I could reach by car. And then I heard reports of people getting Covid from outdoor gatherings, and now I’m not sure that’s safe. I haven’t attended any Pride celebrations in 3 years, and I miss it so much. Pride is a big deal for the LGBTQ+ community, and I want to be around my people. But is it safe?

These are just the thoughts I’ve had this morning. Like I said, my lack of writing isn’t due to a lack of thoughts about my life with chronic illness. And frankly, this is just the tip of the iceberg. There’s so much more I’ve been thinking about, too. But writing takes time and emotional energy, and sometimes I don’t have that. Sometimes I have the time and energy but the muse isn’t with me. Some of my posts over the years haven’t been well organized. Some are filled with typos. But even the error-filled posts – hell, especially those posts – have been the result of a flow of ideas that is hard to stop. When I’m not in the zone, though, I generally don’t like what I write, or more likely I never even begin. I guess the muse simply hasn’t been visiting me the last few months, but that’s ok. This is post #794, so I guess after nearly 800 posts, I deserved a bit of a break. I’m still around, though, so you’ll be hearing from me again.

Until then, I hope that you all are doing as well as possible, and that you’re giving yourselves breaks when you need them. After all, we all deserve to take breaks.

I’d love to hear from you: should I write a memoir? And if so, why would you want to read it? What would you want to get from it? And on the topic of giving ourselves breaks, what’s one nice thing you’ll do for yourself today? Personally, I’m going to spend extra time listening to my audiobook because while I know how it will end (of course the couple will end up together) I’m still excited to hear how it happens.


What a decade!

July 22, 2021

Yesterday was the 10 year anniversary of this blog! Wow! And in true spoonie fashion, I was too busy, overwhelmed, and exhausted to write anything. Still, I couldn’t let this momentous occasion pass without saying anything. Well ok, I totally could, especially given how rarely I have managed to write here lately, but I really didn’t want to.

Closeup of pink flower surrounded by green leaves and pink petals from otehr flowers
A pretty flower, because sometimes we just need to enjoy the beauty of nature, even when we feel like shit

It’s strange to think that it’s been a decade since I started writing. At first I wrote every day. If I missed a day, which was rare, I would write two posts the next day. Some were just a paragraph and others were longer, but they were all personal and all about living with chronic illnesses and disabilities. When I think back, it’s hard to believe that was only 10 years ago, and hard to believe that was already 10 years ago. By the way, this is the 784th post on this site! (I’m amazed that I still have more to say.)

Back when I started this blog, I was working full time at a boring job, and I didn’t know that within a few months, I would be leaving full time work, probably permanently. I didn’t know I would get so fatigued that I wouldn’t be able to leave my home for days at a time. I didn’t know I would spend hours upon hours researching my illnesses in order to improve my health. I didn’t know I would write a book. I didn’t know I would keep this blog going for 10 years.

I sure didn’t think I would still be single. Or living way out in the suburbs. Or that I would become an outspoken chronic illness-rights advocate. And I definitely wouldn’t have guessed at the many diagnoses I have received in the past decade, diagnoses which helped me to finally pieced together the puzzle of my health problems.

Some of that was predictable in hindsight, but a lot was surprising. Especially the work piece. And the health piece. I never expected to get so sick. I didn’t think I would permanently give up gluten, or that doing so would make me feel so much better. I hadn’t heard of adrenal fatigue, but if I had, I may have realized a lot sooner that I had it and that I needed to address it. I wouldn’t have guessed that the popcorn I ate regularly was causing a lot of my distress (no more corn or corn derivatives for me!)

I have learned a lot from many sources, and all of you were a huge part of that. When I started this blog I never realized how important it would become to me. You all have reassured me when I doubted myself. You gave me advice on all sorts of issues. You offered practical solutions to logistical problems. You read my words, you offered community and kind thoughts. This blog has provided catharsis in a way I never would have guessed. Thanks to this blog, I finally realized that I needed therapy to help me address the many emotional issues that living with chronic illness had brought, and that has been immensely helpful.

Ten years ago I started this blog with the hope of forming a small community. I did that, but also so much more. Ten years and 784 posts has given me many gifts, and I’m thankful for all of them. I truly doubt that my health would have improved the way that it has without this blog and all of you. Thank you for reading, for your kind comments, for your advice, and for giving me a reason to keep on writing.

Sincerely,
Ms. Rants


Scaling old stigmas

December 19, 2020

CW: This post talks about weight loss and weight gain.

Weight is a fraught topic in today’s society. There, I’ve said it. We all know it, so why hide from it? In rebellion and for self-protection, I have refused to have a scale for many years. I kept track of my weight just enough to know if I needed to adjust my medications. This was easy to do when doctors weighed me at each appointment (though I don’t know why, since of of them ignored it, even when there was a sudden change.) But then Covid-19 came, and I stopped seeing doctors on a regular basis. Now I’m struggling with whether or not to buy a scale.

Image by Vidmir Raic from Pixabay

I grew up in a house of mixed messages. My parents criticized those who judged people based on their weight, yet they judged people based on their weight. I’m not sure if they were even aware they were doing it. I am aware that carry that judgement with me. “Fat” was used as an insult, and I feel judged for being overweight now.

In my teens I was diagnosed as anorexic. I had lost a lot of weight. One day I looked in the mirror and saw how thin I was. In horror, I ran to my mother for help. I told the doctors that I wasn’t trying to lose weight, but they still said that I was anorexic because I sometimes skipped a meal here or there. I did not skip meals every day, maybe a few each week. They ignored the fact that I had frequent diarrhea, cramping, and other gastrointestinal symptoms. They insisted that I eat more. By drinking high calorie shakes and eating more meals every day, I managed to gain enough weight to no longer be in danger. Then the issue was completely dropped.

Whenever I spoke about my struggle to gain weight, people told me how lucky I was. I was constantly sick, lacking nutrients, and feeling weak, and that made me lucky? No one understood the struggle. Today I need to lose weight, and that is considered socially acceptable. But why? This makes no sense.

I am a victim of society’s messaging as much as anyone else. I try hard to resist it, but that is much easier said than done. I see the thin women in tv shows and think that if only I lost weight, I would be prettier. Then I consciously remind myself that it doesn’t work that way. Still, I’m not happy about the bulge around my middle. Or the expansion of my butt and boobs, the jiggle of my underarms, my growing chin.

Like I said, one way I deal with all of this is to not weigh myself. In recent years, my weight plan has been simple: if I have gained weight and my knees and/or back are hurting more, then I need to lose weight. If my knees and back are ok, then I need to accept it. That works as long as we’re talking about a few pounds here and there. But last year, suddenly, it wasn’t just a few pounds.

I am short, so for me, 5 pounds is a big weight gain. Imagine my shock when I gained 15 pounds in just a few months! I was exercising as much (or maybe even a bit more) as before and my diet hadn’t changed. I had recently started a new medication, though. Tracking my weight was one way to determine the proper dose of that medication. We began lowering the dose, and the weight gain stopped, but it didn’t reverse. Then the pandemic started, and follow-up care was difficult. As things eased up over the summer, I was able to begin lowering the dose again. It has to be done slowly, so I lowered it a tiny bit and then waited a month. Sure enough, I seemed to be losing weight, but was it an illusion? My pants fit a bit better, but since I was wearing only stretch pants, it was hard to judge. My jeans no longer fit after last year’s big weight gain. I had planned to buy some in my new size before this winter, but that was before the pandemic started. Obviously I am not going to stores to try on clothes, so the stretchy pants will have to do. So did I really lose any weight? If I did, I think it has stopped, but it would help to know before we adjust my medication further.

The answer is obvious: buy a scale. I am not risking virus exposure to get weighed at a doctor’s office. My worry is that if I have a scale in my home, I might become fixated on the numbers. I could make a rule: weigh myself once a week and not look at it in between. But once a week seems like a lot. Maybe once a month would be better? I suspect, though, that I would be tempted to sneak a peek in between. It would be so easy to take a quick look, and to use this scale as a rare empirical measurement of my health. The problem, of course, is that weight is only one data point. Even if I lost 20 pounds (which would put me back into the “normal” range, and based on past experience, would be a good weight for me) that doesn’t mean I would be “healthy”. I would need to be careful not to try to use my scale to measure whether my health is improving. I would have to remember that health and weight are not the same thing.

On top of that, what if I begin to engage in unhealthy behaviors in order to lose weight? There are two ways to lose weight in a healthy way: exercise more or eat less. I might try to exercise more. With my joint problems and adrenal fatigue, this would likely create all sorts of problems. Yet if I’m out on a walk, it might be tempting to walk for “just a few more minutes.” And I should, right? After all, my doctors tell me to. But I know my body and I know what it needs, and what I’m doing right now works, so I shouldn’t mess with that. Still, I know myself, and I’m likely to try and push for “just a little bit more.”

As for eating less, to be honest, I don’t want to mess with food. First I had years of being sick. Then I had years of being sick and being told I had to eat more. Then I had years of being sick told it was IBS (it wasn’t.) Then I went on restrictive diets and, miracle of miracles, the gastrointestinal symptoms finally stopped! But then eating became difficult, especially when I wasn’t at home. I could not longer grab something at any random restaurant. Eating out with friends involved me researching restaurants in order to find one that had 3 items on the menu that I could eat. Food was no longer fun. I struggle to eat in ways that are healthy not only physically but mentally and emotionally. So no, I do not want to add attempts to eat less to all of that.

And that brings me back to my initial problem: needing to track my weight without paying too much attention to my weight.

Let’s face it, I’ll probably get a scale. I don’t know if I will be able to get a Covid-19 vaccine and, even if I can, it’s going to be a long time before things normalize to the point where I am regularly getting weighed at doctors’ offices. Meanwhile, I am taking my own pulse with an app on my phone, checking my hair loss and complexion in the bathroom mirror, keeping a daily symptom log, and generally doing all I can for my health. The truth is, I need to know if my weight is changing, and I can’t trust myself to eyeball it or guess based on how my pants fit. The key is that I need to learn how to not judge myself for whatever number appears there. That’s easier said than done, but I’m going to work at it.


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