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


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!


How can I be around people?

April 26, 2021

It has been 410 days since I first entered isolation. More than 13 months. At the time, people kept talking about how long this pandemic might last, guessing it could be several weeks, doubting that it would be more than a few months. At the time, I felt that it would be at least a year, maybe closer to two. After all, that’s what the science seemed to say. A few friends agreed. But at the time, that was hard to imagine how much of that would be spent in isolation. Now, more than a year later, I’ve been doing it, and what’s hard to imagine is how it will end for me.

A quick note for context: I live in Massachusetts. Unlike many other countries, the United States never full isolated at the start of the pandemic (or at any other point). Different regions have lifted restrictions in different ways: some have stopped requiring masks, some have reopened schools, some have removed capacity limits on businesses, etc. However, infection levels have never gone low enough to safely open without further spread. I know that many of you are in regions where there were few, or zero, infections at times, and so things reopened. That has never happened here. Yesterday, Massachusetts had 1214 new cases, and today thousands of kids returned to in-person school for the first time, and we continue to reopen more businesses.

Of course, many people have not been isolated this entire time. Some go to work. Some go to restaurants. Many go to grocery stores. But I haven’t done any of that. In some ways, though, I haven’t been isolated, either. I have seen a few doctors. I have seen a few friends and family members at a distance while wearing masks. But up close, there’s been nothing. No visits with loved ones indoors. No hugs. No kisses. No sex. No physical connection. The only people to have touched me the last 13+ months were a few medical practitioners and, well, that’s just not the same.

Now, though, there’s a light on the horizon. I am supposedly fully vaccinated. I will get an antibody test this week and if it is positive, I will feel much better. If it’s negative, though, that’s harder. There are a lot of false negatives, unfortunately. Even if it’s positive, I won’t be going back to “normal.” I will still be mostly alone, but the difference is, I won’t be entirely alone. The plan is to first see my parents. With any luck, I will get to spend Mother’s Day with my mom! We will even get to hug! They will isolate for 10 days and so will I. Then I will spend a night at their home. I’ll get to leave my apartment. I’ll get to be in a house. (It’s strange to think that I haven’t been in a house in more than a year!)

After that, I will visit with a close friend. She and her family have been isolating nearly as much as I have, and when I ask about her exposure risks, she’ll be forthright and honest (and she and I agree on how risky various things are.) At some point soon, I’ll have her kids spend a night or two at my place. It’s something that we did before the pandemic, and in fact, they were supposed to have a sleepover at my place just as the pandemic picked up and we all went into isolation. I have been doing Zoom chats with the kids regularly, but it’s not the same. The visit will be wonderful.

I am excited for all of this. There will be a lot of hugs and snuggles. We’ll hang out indoors without masks, and it will feel somewhat normal. I can hardly wait!

But I am also dreading it.

The idea of being around people, indoors, hugging, without masks, fills me with anxiety. I know, logically, that it will be fine. They will isolate. I will isolate. All of the adults are vaccinated and the kids are doing school remotely from home. I am at higher risk than my friend or her family, or even my parents, and my doctor says this is ok. But still, I am nervous.

I have always been a nervous, cautious person. I have travelled and gone on adventures, but I also used birth control pills and condoms while in a monogamous relationship, just in case. I like having a backup plan for big things. And this virus, well, it’s a big thing. But I can’t stay in isolation forever. Well, I can, but I know that I won’t. Sooner or later, I will be around people again. I could wait, I know that, but now feels the right time to take these baby steps. It’s not like I’m going to eat in a restaurant or attend a concert. Visiting my parents would be me going to their house, and us staying in their house, except for maybe a masked walk in the neighborhood. Ditto for my visit with my friends (or them visiting me – we haven’t worked that part out yet.) But still, I’m nervous.

My hope is that once I am there, in person, that I will feel better. My hope is that it will feel normal and natural and safe. My hope is that I will relax and enjoy myself. I just can’t quite seem to picture any of that. Yet.


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