Challenges of being forgetful

I’ve been very forgetful recently (past year or so, getting worse in the past few months). I’m not sure why. “Fibro fog” due to fibromyalgia and long covid are possibilities. There are other possibilities, too.

It’s very frustrating when I think of something I need to do, open my computer and go to the proper website… and then forget what on earth I am doing. Then I have to go back and reread what I was just looking at to see if I can get my brain to conjure up the same thought again. This method worked just now, but it often doesn’t work, and then I just don’t do what I need to do because I can’t hold onto the thought long enough to do it…

Sometimes I can’t write something down fast enough because that’s how quickly the thought leaves my mind. So my sticky notes are jumbled and unclear because they’re the only two words I could hold onto long enough. Then it’s difficult to interpret them later on.

In conversations, I often forget what we were just talking about. Or I had something to say earlier, but now I forget it, so I’m just silent. Sometimes it’s awkward.

(TW: bathroom; just this paragraph) When I use up the last of the toilet paper in the bathroom, I tell myself “toilet paper toilet paper toilet paper,” while I’m wiping and washing my hands so that I don’t forget. Even still, the thought leaves my head by the time I exit the bathroom. And so the toilet paper roll is empty when the next person wants to use the bathroom, despite my best efforts.

This is just a vent-type post to acknowledge the struggles I’m having with this particular thing. Writing it out makes me feel more valid. These really are struggles that happen very often to me and have real consequences.

Affirmation #29: I can only do what I can do.

I can only do what I can do.

This sounds a little tautological, but it makes sense to me.

I have a doctor appointment coming up. I am worried that they won’t give me treatment or help that I need. Not that I want, that I need. I am trying to accept that I can only do so much, and that ultimately they have power over me and can control my access to medications, tests, and treatments. I am trying to radically accept that even if I do my best in this doctor appointment and am clear, assertive, and friendly, that they could deny me. So, I am trying to focus on what I can do.

How to modify dances when your body is in pain or works differently

I love dancing and have been dancing for most of my life. It started getting painful to dance in fall of 2019. Then in March 2020 when school went online, I moved back home, and the semester’s performance was cancelled, I stopped dancing altogether. I didn’t dance for many months and tried to take it really easy on my body. I danced a little bit with my sister occasionally last November and December. And now, I am back at school (still online, but I’m living on campus), and I’m in two dances this semester for the dance group I’m in.

(there is more backstory to this than I originally intended; feel free to skip to the how-to part if that’s what you’re looking for!)

I love dancing, but it is still painful. 😦 I had a dance teacher once who was very accepting and understanding of everyone and encouraged us to just “modify” the moves to best suit us. However, I didn’t know how to modify them! So I ended up just doing what everyone else was doing and hurting myself.

I felt a lot of peer pressure when dance classes/rehearsals were in person because everyone, especially the choreographer, was watching. I felt bad if I didn’t do a move or sat down for a bit. Some people were nice, but others were not. Plus the choreographer normally has a vision for how they want their dance to look, and I felt pressure to meet their vision and expectations. And I want to be able to move that way. If someone does a really pretty, fun, powerful, or graceful move, I want to be able to move that way, too! And sometimes I can’t.

This makes me really sad. I am getting sad writing this. I think I am grieving the loss of this ability a bit. Dancing used to be one of few consistently good things throughout my life (another one is nature), and now it’s not anymore. It’s hard and painful, which makes it less enjoyable, and it probably won’t get better with just “hard work” or “practice” or “getting used to it.”

Today (right before this, which is why I am writing this), I had a rehearsal. I like my choreographer. She is kind and understanding. I told her that I have health issues and will be taking it easy on my body and may need to stop and stretch often. So she’s aware of that. And the group of people is great. Many of them are seniors, like me, and I’ve been in dances with them before. And my choreographer lives right above me, so I can hear her floor squeaking as she dances, even though we’re all on zoom, so that’s cool. It makes me feel connected to her. And I like the song we’re dancing to, and I like the dance. The dance is gentle (no sharp/forceful movements) and somewhat slow, which is good for my body.

But even with all those good things, I didn’t have a good rehearsal because of my (stupid) body. Things were fine until we did two step pivots, and then my feet (like, the bones in the balls of my feet) felt awful. It did not feel good, it did not feel right. I got really anxious (note: I had pain first, then anxiety. The pain was not caused by the anxiety at all.) and couldn’t get away from the feeling that “something is wrong, something is wrong.” I turned off my video and sat on the floor and hugged my knees and kinda dissociated.

I think part of me was scared that this will lead to several more days of pain, because that has happened before. And last fall (2019), it seemed like all my physical issues started (or at least got a lot worse) after a dance class where I felt similar uncomfortable feelings. The day after that bad dance class, I skipped my actual classes because it was too painful to walk to them. (thanks to zoom, that’s not an issue now, haha) So, I don’t want that to happen again. Especially since I’ve been feeling better in general recently.

I think I pushed myself too much today. I had already done two physically strenuous things today before this dance class. I’m aware of Spoon Theory, but I think I have to actually use it and ~radically accept~ that I am someone who could be helped by it. I had already used up my spoons, and it was too much for my body.

So then after I cried/dissociated for a bit, I tried to do things to make it better, and I kinda massaged my feet (didn’t help much) and then got up and ate some candy lol for self soothe. And then (and I am proud of this), I messaged in the zoom chat that my feet were not having it today and that I was going to do the rest sitting down. And I turned my camera back on! And I followed along with the arm parts! My arms weren’t feeling great, either, though, so I guess my whole body has had enough for today. My hands are actually not feeling great as I type this, either. I think I’m just too cold. It’s too cold in here. My joints are not good when it’s cold.

Anyway, that’s all the story/preamble. That was longer than I expected. This is fresh on my mind and, I guess, kinda emotional. Anyway.

Now that I have been dancing in modified ways more, I feel like I actually know how to modify dances now. So I will share those tips. 🙂 The same general strategies could probably be applied to other group exercise classes, or really any exercise routine you’re following that’s not something you came up with for your body.

How to modify dances

1. Do smaller movements. Don’t lean as far. Don’t take as big a step. Take a tiny jump. Don’t lift your leg as high. Do one spin instead of two. Don’t turn your head as far. Don’t lift your arm as high. This is probably the biggest thing!!
2. And, if you can, do slower movements.
3. On turns, spot! Spotting is when you look at something with your eyes, keep your eyes focused on it as you turn, and then flip your head around quickly and find the same place. This is something that can be learned and is often taught, but it’s easy to forget to do! Spotting takes more work but makes me way less dizzy and nauseous. I just have to focus on focusing on something, haha.
4. If a move goes down to the floor and back up quickly, don’t go all the way down to the floor. Stay on your knees or feet partially. Don’t untuck your toes. This makes it less of a sudden movement (aka less pain) and makes me less nauseous.
5. Practice doing things slowly and in a controlled manner before attempting to do them full-out. Make sure you know how you will move and which muscles you will use and how you will support your body before trying to do something up to speed.
6. Similarly, if there’s a new, complicated, or quick move, break it down into bits and practice each part. It’s okay to not have it on the first day and to gradually learn it and put the pieces together over several weeks. Maybe those muscles will even get stronger or more used to it over time.
7. Walk (just take steps) instead of doing a move to get from one place to another.
8. Focus more on other things that make a dance “look” good. Be aware of your facial expressions and try to look at the audience / the camera when appropriate. Add emotion to the dance. Make sure you’re in time with the music. If it’s a tap dance, make sure the sounds you’re making are at the right times, even if you’re making the sounds with different steps.
9. If you can’t do the leg part, just do the arms, and vice versa. Or just do the head. Whatever feels comfortable for you in that moment. You can sit down if you want, on the ground or in a chair. If you’re in a spinny chair, you can use that to help you move, too! Or if you have a wheelchair, you can use that to move around (I don’t actually know much about wheelchairs, sorry, but I do know that there are actually some dance classes specifically for wheelchair users that just do dances from the waist up!).
10. Skip moves that you can’t modify at all. But you don’t just have to stand still (or sit still). You can sway to the beat of the music and focus on your facial expressions. Even just listening to the music can be helpful so that you hear how the counts go and when each move happens. If you can’t do any of that, that’s okay, too! It’s better to not do it than to get hurt! It’s okay to take a full-on break like I did and take some time to take care of yourself! It’s probably better for you in the long-term!

Ballet-specific

1. Probably the most common modification is to change 5th position to 3rd position. So, instead of putting your heal touching your other foot’s big toe, only put it in the middle of that foot. Or even less.
2. Similarly, don’t turn out as much if your knees hurt.
3. Don’t lift your legs as high, don’t lean back so far, etc.
4. Don’t try to fully do moves if you don’t know them or aren’t used to them. Ballet often uses muscles that the rest of everyday life doesn’t use. It takes time to build these muscles. It’s better to do an incomplete version of the move than to hurt yourself. As your muscles get stronger, you may be able to do more of it.
5. Some ballet teachers (in my experience and what I know from other people and things I’ve read) can be more particular and harsh than teachers of other types of dance. Not every ballet teacher is like this, but some are. It’s okay to leave the class and find a different teacher if you want to. This goes for all the dances, too, but in ballet there is an emphasis on doing moves in a specific way that there isn’t an emphasis on in, say, modern dance. Modern is much more “make the move your own, let it come from your heart.”

Tap-specific

1. As I said above, make it sound good. Most people are probably watching your arms and face, not your feet, anyway. If you can move your arms and make facial expressions comfortably, then focus more on those things.
2. Take steps instead of doing flaps. This will sound the same and is less foot movement.

In general

1. Let your choreographer or teacher know ahead of time if you think you’ll be doing things differently or taking breaks. For me at least, this makes it much easier and less shameful to do things differently or take those breaks when I need to because they’re already aware.
2. On zoom, turn off your camera if you want to.
3. Stretch a lot before and after, and anytime in between, if it helps you.
4. Maybe dance in a warm room? Since it’s cold, I’m wondering if this would help me. Maybe I should wear a long-sleeved shirt instead of a t-shirt.
5. Make the floor comfortable to dance on, and make sure you’re wearing the right gear. If you’re in your own space, like I am now, put an extra blanket on top of the floor to make it comfier to dance on. A yoga mat or towel could be good, too. Wear socks to make your feet move more smoothly over the floor. Or wear ballet, tap, jazz, etc. shoes that are meant for the type of dance you’re doing. Make sure they’re the right size and fit comfortably and are tightened properly in the right places (the tightening should be so that the shoe supports your foot properly, not so that it hurts. If it hurts then don’t do it).
6. If you have long hair, tie it back. When my hair is flailing all around, it makes me more dizzy.
7. And if it hurts to wear it in a ponytail, braid it loosely. A braid pulls on my head less and is much more comfortable and still keeps it out of my face.
8. Make sure you’re prepared to dance by eating enough food and drinking enough water throughout the day.
9. Quit dances or classes if you need to and it’s too much for your body, or the teacher/choreographer isn’t nice to you. Do what’s best for you! You may be able to find a better teacher/choreographer or class. Or you can dance on your own. Or make your own dance group!
10. Find dance options that are best for you. Like I said, this dance that I’m in is gentle and slow. Fast dances or sharp movements are not good for me. Hip hop, tap, and ballet are overall much more painful for me than these sort-of-modern dances I’m in now. I think that dances where you stay upright like line dances / social dance (square dancing, contra dancing, etc) or TikTok dances might also be better for me, but I haven’t tried those recently.
11. If it is hard for you to do things differently or take breaks, try to bring yourself back to self compassion and radical acceptance. I want what’s best for me in the long term. It might feel better (less shameful) to push myself harder now, but I will feel much worse later. I’m the only one that has to live in my body with the consequences. I have to listen to my body and trust myself. And I have to accept (not deny) that pushing myself too far can make me hurt, even if everyone else seems to be doing it easily and painlessly.

So those are my tips so far! If anyone has ideas for how to modify a pivot, let me know. Maybe if I step with my whole foot instead of the balls of my feet, it’ll be better? I don’t know. I think I will also wear warmer clothes next time. And make more of an effort to stretch. I realized I had to go to the bathroom during our stretching time, so I didn’t stretch much. It would have been better if I had gone to the bathroom before the rehearsal started. So, that goes along with making sure I’m prepared to dance.

Does your body hurt when you move? Have you modified things so that they don’t hurt (or hurt less)?

Hello, it’s been a while, life updates

Hi! I haven’t been blogging much recently. It’s partly because I’ve been busy with school, partly because I’ve been depressed and unmotivated and wanting to withdraw from social things and online things, partly about not feeling great about writing about personal things online, and partly because I was procrastinating writing an essay, and every time I thought about writing on here I thought “well if I’m going to write, I should be writing my paper,” and then I ended up doing neither….

Anyway, hello again. One of my new year’s resolutions is to write more on here again! So here I am! Overcoming that initial anxiety of (re)starting!

Here are some things that have been going on in my life: (contains some mentions of bodily functions and 1 swear word)

• School — online school has been awful. It makes me feel very lonely and disconnected, and sometimes unreal/dissociated/like I don’t exist. I have found that doing hands on projects (anything not on a screen) and talking to friends more frequently, and in person when I can, helps.
• Health issues are still going on. (mentions of bodily functions, possible TMI) Digestive stuff (diarrhea, bloating, pain) and pain peeing are the main things. But, recently, I started having dairy-free yogurt with probiotics, and it is making a huge difference!! I am having much more regular and more solid poos. I haven’t had diarrhea in maybe a week? Or more? 2 weeks? I should look at my calendar and figure out how long it’s actually been! 🙂 Very exciting though.
• I discovered Reddit! It is so good! There are so many different subreddits. I feel like I am finally able to find information about health stuff, and also so much other stuff, that I haven’t been able to find by googling or asking around or anything. r/ChronicIllness, r/IBS, r/IBSresearch, and many others have been useful for this stuff. (TMI in this sentence –> ) I realized that the yucky smell I sometimes smell when I have diarrhea is mucus from the lining of my intestine (which isn’t supposed to come out with my poop). I got a link to an article about how IBS isn’t always caused by stress (duh, I knew this, but it’s nice to be validated by science, since every doctor has told me that it’s because of stress!). And I learned that many, many people have had bad experiences with doctors who don’t believe them or take them seriously. It’s all very validating!
• Other good stuff about reddit, since the last bullet point was getting long: I can learn so much information, broaden my perspective, see funny stuff, see cool stuff, even ask a random question and have someone reply soon and know the answer?! The internet is amazing. I feel like this is what I’ve been missing. I don’t have facebook (I don’t like their lack of privacy), and I think maybe lots of other people get this stuff from facebook, but I haven’t been doing that. This is new to me, and I really like it. If you’re interested, here are some of the subreddits I like (you don’t need an account to browse): r/wholesomememes, r/CasualConversation, r/ChangeMyView, r/DataIsBeautiful, r/crafts, r/dadjokes, r/AnimalsBeingBros, r/DBTselfhelp, r/DoesAnybodyElse, (swear word) r/interestingasfuck, r/outside… I could go on and on. 🙂
• I found a chronic pain support group through meetup.com, and I went to one zoom meeting with them. It was good, and I’m going to go back. 🙂
• I’m trying to figure out if I’m going back to campus next semester or if I’m staying at home. It’s a really stressful decision for lots of reasons.
• I have good relationships with my family, finally. All this time together has actually helped us a lot.
• I’ve gotten more distant with some friends, which is sad and hard. I’m trying to work it out. It’s hard to feel connected to others on zoom.
• I haven’t gotten my grades back yet, but I expect they’ll be…interesting. There are two classes that I think I might get A’s in, and two other classes that I honestly might fail. So…that’ll be interesting…
• Stuff with my sustainability club is going well. I kinda ended up leading it this semester towards the end. I’m trying to transition my responsibilities onto someone else because I’m graduating next semester! :O
• I’ve become nocturnal. I often go to bed at 5 am, 6 am, 7 am… it’s not great. I’m trying to fix it.
• I’m trying a new app called Routinery (that I also heard about through reddit, lol) that helps you do routines (like getting up in the morning, or eating, or going to bed) To set it up, you input all the steps of your routine and how long each one takes. Then when you start the routine, it buzzes when it’s time to move onto the next step. It gives me that little extra bit of motivation, and it keeps me on track when I get distracted or forget things. And then I can see how long things actually took me compared to how long I expected them to take, which is useful. I’m trying to manage my time better. Using this app is maybe also part of my new years resolutions.
• I guess that’s kinda it. When I write it out like this, not a whole lot has actually happened. I go on walks a lot. Nature is good. We’ve had some snow.

Pretty snow 🙂

How have you been?