chronic pain

February Winding Down

/ Alyxander James / Leave a comment

Hello, lovely readers, and welcome to Thursday. Yesterday felt a lot like a Thursday to me, and today feels like a Friday, which means tomorrow will likely be a challenge. I have just been tired this week for no particular reason. Thankfully, the weather in Chicago is turning warmer and sunnier, and that makes things feel a little better (I like cold weather, but my joints have other opinions).

February is winding down. I have 18 songs posted on FAWM and, assuming I can get a song done for class this week, should round out the month with at least 19, which ties for the most songs I’ve ever written in a month (I also wrote 19 songs the first year I did FAWM). I got a bit overwhelmed by it all sometime last week and haven’t been writing or posting or engaging with the site in general as much as I was at the beginning of the month, but it’s still been a major source of joy in my month.

Work has been good, although I feel like I’m behind on a couple of larger projects. In reality I probably didn’t have super realistic expectations at the outset of these things, and I’m trying to be gentle with myself about it. I’m still definitely feeling a fair bit of burnout from being at the computer all the time, and am going to look today at when I can take a little time off next month to reset.

I’ve been quite achy this week, I think in part because I forgot to take my glucosamine supplements over the weekend, and also because of the weather shifting. I think that’s also impacted how much I’ve been writing this week, because it’s hard to really play an instrument very well when your elbows and hands ache. It’s also made knitting harder. Sigh. The good news is that in general I’ve been in a bit less pain in between shifts in weather and the times when I forget my supplements. Unfortunately this is just a really volatile weather time in the Midwest.

I hope you’re all hanging in there, friends. I am looking forward to the day when vaccines are more widely accessible and we can hug each other again. I’m still planning to wear a mask in public for the foreseeable future, but hopefully after we’re all vaccinated, hugs will feel safer.

/ Alyxander James / Leave a comment

I very nearly forgot to blog this week.

Yesterday was hard. Not because of anything that happened, really, but the whole day felt Sisyphean. I got out of bed late; it took what felt like eons to talk myself into going to work. I spent a lot of the day dealing with a pain flare-up. It was hard to be in my body. I got home and managed to get a few things done, but I was in bed before 8:30.

This morning I woke up still feeling pretty achy, so I made the decision to work from home. This meant that even though I made the questionable decision to crawl back into bed after turning my alarm off, I still had time to shower and take it a little easier getting ready for my day.

Now I’m sitting at my kitchen table with my coffee and my work laptop, getting ready to dive into some work projects, and I suddenly realized I hadn’t written a blog post yet, so here we are.

It’s been a long week, for sure. But here are a handful of things that have kept me going:

  • I finally saw Star Wars: Rise of Skywalker on Friday after work. I know some people found it disappointing, but I really enjoyed it. I cried, I laughed, I held my breath, I occasionally rolled my eyes. It was a fun ride and I found it a satisfying conclusion to the series I was raised on.
  • Saturday we got breakfast with a friend who lives in our old neighborhood. When we moved, we decided to set up a routine of breakfast dates every other weekend, and I’m so glad we did. I am trying to be more intentional about making time for friends. We have such a great constellation of friends and communities here, and I think when I’m struggling I sometimes lose sight of that.
  • I made it to Tai Chi class for the fourth week in a row. It feels good to be doing something to move my body aside from all the walking I do.
  • I wrote three songs last week. I’m getting increasingly excited for FAWM!
  • This weekend I have a couple of things scheduled with friends that I wish I saw more often, and I am very much looking forward to those.

Attempting Optimism

/ Alyxander James / Leave a comment

It’s been another kind of hard week. I’m tired, I’m achy, I got an unexpected medical bill, and I’ve been feeling cranky and out of sorts a lot of the time. However, I am attempting to look for some bright spots – not because I think everything needs a silver lining, but it’s easier to get up in the mornings and get through each day if I have things to look forward to. So here are a handful of happy things:

  • I was able to play guitar this week! A couple of weeks ago I picked up my guitar and couldn’t play, because my hands hurt so much. Thankfully, despite the fact that they still hurt, I’m finding that I can play some things, as long as I mostly avoid barre chords and don’t capo up so high that I’m having to cram my fingers into smaller spaces. So that was exciting and encouraging.
  • My department at work is going bowling tomorrow. I have admittedly mixed feelings about this – both because of how much socializing is involved and because my hands have been hurting and I can’t imagine bowling is going to help that. But I do enjoy bowling (even though I’m pretty bad at it), and it means a few extra hours I don’t have to work, so that’s good.
  • I’m getting super excited for FAWM. This will be my third year participating in this challenge, and it’s always a magical time. This year, I’m planning to get some serious work done on my 78 Songs project, where I’m writing a song for every card in a tarot deck. I’ve been “working” on this project for years and have almost nothing to show for it, so I’m excited for the external motivation to get some of the work done. This FAWM I’ll be tackling the major arcana, which is comprised of 22 cards. Since the goal is just to write 14 songs, I started working on them this week, and have two songs done and another set of lyrics started, so that feels like good progress.

What things are you excited about or looking forward to?

Some Weeks are Harder Than Others

/ Alyxander James / Leave a comment

It’s Thursday, and I’m having one of those weeks where Friday and the weekend can’t come soon enough. I worked from home Tuesday and called off entirely yesterday. Some of this week is a mental battle – it’s been pretty grey and dreary outside all week, and it’s hard to feel motivated when the sun doesn’t rise until after 7am and sets around when I’m getting out of work.

A large part of the challenge this week has been physical, though. My hands and arms have been aching in a way they haven’t really before, at least not so consistently. Since my job and all of my hobbies involve my hands, this is…distressing. There have been things this week that I just haven’t been able to do, because it hurts when I try.

My partner has been super great and supportive while I figure out what to do about this and has stepped up where I’ve had to step back. I feel guilty, leaving so many things to him. It doesn’t feel fair, and that’s a hard thing for this Hufflepuff to get past.

I need to call the PT clinic I tried reaching out to online that never got back to me. It would be the most convenient possible location. But the thought of calling is exhausting.

The good news is that I started taking a mountain dulcimer class at the Old Town School last week, and it’s easier on my hands than most of the other instruments that I play. So I can still make music, even if I feel like I can’t do much else.

I know I’ll figure out better ways of dealing with this as time goes on. Right now, though, it is no fun and I am pretty cranky about it.

Five Good Things

/ Alyxander James / Leave a comment

Hello, dear readers. I’m feeling stuck for something to write about this week, so I’m going to default to the five-item list of some happy things from the past week:

  1. The EMG last Thursday went well. I mean, it wasn’t fun, by any stretch of the imagination, but it did at least rule out pinched nerves as the cause of the chronic pain I’m dealing with, so that’s good. The rheumatologist recommended PT (which I still need to follow up on) and some supplements to try, as next steps. I’m not exactly hopeful, but at least we were able to rule something out.
  2. We bought a Harry Potter LEGO advent calendar last month, and it’s been so fun to open it each day and build a tiny thing. (Granted, we have forgotten about half the days, because we’ve not had an advent calendar in past years and also it’s the season where we come home and are tired and not thinking very clearly. But still.) We’ve had a handful of characters, some Christmas trees, a turkey (with legs that pop off so the minis can hold them…it’s adorable), and a few other random things. It’s a nice source of joy.
  3. We’ve made so much soup the past couple of weeks! Since we’ve been under the weather and it’s been cold, soup has seemed like the correct course of action. I’m getting to use the techniques we learned in the knife skills class we took last month, which is making my food prep way more efficient. This is the recipe we’ve liked best so far.
  4. We’re finally both getting over this awful cold. My partner’s a few days ahead of me in recovery, so I’m hopeful that by the weekend I’ll feel much better. I’m already much better than I was last weekend, so we’re moving in the right direction!
  5. I wasn’t sure what class to sign up for at the Old Town School for next session (songwriting filled up suuuuuper early and I missed my chance), but I finally made a decision and signed up last night – I’ll be taking a mountain dulcimer class! My partner’s aunt had given an old dulcimer to my partner’s dad a while back, and he’s not using it much, so he said I could borrow it. I’ll pick it up when we’re there for the holidays. I have felt kind of stuck, musically, and I think learning a new instrument is a great way to get unstuck. So I’m excited about that!

Baby Steps

/ Alyxander James / Leave a comment

A few weeks ago, I saw a new-to-me rheumatologist. The last time I’d been to a rheumatologist to try to pin down the nature of the chronic pain I deal with was about two years ago, and it did not go well – he essentially only listened to the parts of my story that supported the narrative he constructed as soon as he saw me, which was clearly that I only hurt because I’m fat. (To which my primary care doc later pointed out: “That might contribute, but then why do your elbows hurt?)

I finally worked up the courage to try again last month, and it went better than I expected it to. The rheumatologist listened to my concerns, and seems committed to helping me address them.

Today I am going back for an EMG – a nerve conduction study. I am nervous (pun kind of intended) about it, mostly because I don’t entirely know what to expect. I’m afraid to get my hopes up about anything conclusive coming out of this. But it’s farther than I’ve gotten before with this process. So…baby steps forward.

I’m also trying desperately to fight off the cold that kept my partner home from work earlier this week. I can feel it coming on. I feel like I’ve been dealing with low-grade yuck like this for months, but it feels like it’s getting worse again this week. Sigh.

I replaced my phone this week. I had still been using an iPhone SE, and the battery was not able to keep up anymore – I basically had to recharge at least once in the middle of the day, every day. So now I have a shiny new iPhone 11. The cameras are bonkers, they’re so much better than what I had before. And it’s purple, which is delightful.

Having a Body

/ Alyxander James / Leave a comment

Sometimes, having a body is exhausting. This feels like one of those weeks.

Last Thursday I had an unexpectedly positive experience at a new rheumatologist’s office, and I’m feeling a little more hopeful that this one will actually try to figure out what is behind the chronic pain I deal with (as opposed to the last one, who basically just wrote it off as, “because you’re fat”). So that’s a happy thing.

Monday, in the middle of a staff meeting, I felt my back seizing up. I needed to stand but felt like I couldn’t (because everyone else was sitting and I felt the social pressure of not drawing attention to myself), and as a consequence have been in a not inconsiderable amount of back pain all week. It’s slowly working itself out, but it’s a process.

While this has been going on, I’ve also been trying to tackle multiple projects at work. I have a desk that can adjust from sitting to standing, and that’s been a lifesaver in terms of back pain management. But I’m finding the types of work I need to do are harder to focus on while I’m standing. On the other hand, sitting for any length of time makes my back stiff and sore. I feel like I can’t win.

Add to that the rain and temperature shift today, and I’m in a place of “everything hurts and I am exhausted.”

Thankfully, I have some bright spots to focus on this week. Most notably, I finally got to play the show I missed the night I had to go to the ER a couple of weeks ago. It was fun, more people than I expected showed up, and I even made some money in tips!

Thursday Ramblings

/ Alyxander James / Leave a comment

It’s Thursday, and I’m tired.

I’ve been tired all week. I’m fighting an end-of-summer cold, and it’s making mornings especially challenging. Today, at least, I was able to get up and out of the house at a reasonable hour – I’m leading a training at work this morning, so it would’ve been especially problematic if I was late. But I feel like I’m dragging.

The fact that the weather got hot again is not helping matters – I am ready for fall weather. I’m also ready for consistent weather – the constant shifting is really hard on my body – but that’s probably not a realistic wish in Chicago.

I’m not having a bad week, exactly. I’m just low on energy. The weekend was good – I got to play D&D and we got the apartment more settled. I wrote a song I liked for class this week, so that was exciting.

How about you, dear readers? How are you feeling as we wait for the season to really start changing? What’s new and exciting in your lives? I’d love to hear from you.

Facing Anger

/ Alyxander James / Leave a comment

“When was the last time you got really angry?”

This was a question that came up in my session with my therapist this week, and I didn’t have an answer.

I did not go into therapy this week expecting to talk about being angry. It had been two weeks since we’d met, and I was running through updates on things we’d been talking about in past sessions. One of the things that came up had to do with people talking about me rather than to me about my life.

“Does it make you angry?” she asked.

“Yes,” I responded immediately, and then found myself backpedaling. “Well, at least annoyed. Angry might be too strong a term.”

She pointed out that it was my first response, though. We talked about what “annoyed” versus “angry” feels like, and which response actually felt more genuine in that situation. It was definitely anger. She asked me to sit with it for a minute.

And I remembered something I haven’t super consciously considered in a while. Once, when I was about 14, I was fighting with my younger brother. At some point, I got really, really angry. I chased him up the stairs to his room. He slammed the door in my face, and before I knew what was happening, my fist came down on the door…and I heard something in the door crack. I realized in that moment just how capable I was of causing serious harm to another human being, and it terrified me.

I don’t remember much of the rest of that evening, aside from knowing that I retreated to my own room immediately and probably stayed there as long as I possibly could. And I’ve never lashed out in anger like that again.

I don’t do well with anger. I’ve known this for a long time, but in therapeutic settings had only really worked with my lack of coping skills around other people’s anger. I haven’t spent a lot of time digging into the fact that, for more than half my life now, my response to my own anger has been to freeze – I make myself and my anger as small as possible so that I don’t risk hurting anyone. I want more than anything to be a person who makes other people feel safe, and I don’t know how to feel safe around anger. I freeze because I’m even more afraid of my own anger than I am of other people’s.

My therapist posited that perhaps there’s a link between the amount of time I spend freezing and trying to make myself small, and the fact that most of my joints hurt almost all of the time.

It’s not a thing that’s going to be solved just by recognizing that it’s there…but that’s step one, at least.

Road Trips and Recovery

/ Alyxander James / 1 Comment

Last weekend, my partner and I took a whirlwind trip “home” to the Twin Cities. His dad had gotten tickets to see Paul Simon on his farewell tour. Plane tickets from Chicago were unusually expensive, so we rented a car and drove up, leaving very early Friday morning.

The concert was incredible. I will freely admit that I am not super well-versed in Paul Simon’s music, but I knew enough to not be completely lost, and watching the show as a songwriter gave me a real appreciation for the level of craft he brings to his music. Also, anyone who can perform on stage for that long with that much energy at 76 is pretty incredible in my book.

We tried really hard not to overbook ourselves on this trip (something we often fail at), so Saturday was fairly laid-back. I got coffee in the morning with a professor I knew from bible college. We’ve been trying to get coffee together every time I’ve been in Minnesota for the past eight or nine months, and I’m so glad it finally worked out. That afternoon, my partner and I got lunch with one of our favorite people. It wasn’t a super long visit, but it was great to see them and catch up a bit. In the evening, my partner’s Grandma came over to his parents’ house to join us for dinner, which was also very nice.

Sunday morning, we got an early breakfast with my best friend (another of our very favorite people), which was delightful, as we don’t get to see each other nearly often enough. And then we made our way back to Chicago, which took a couple of hours longer than the trip out, thanks to detours and lane closures between Milwaukee and Chicago.

By the time we got home, we were pretty exhausted. Unfortunately, neither of us could take Monday off, so we dive headfirst into the week and hoped we’d make it.

And for the most part, we’ve managed. Unfortunately, yesterday (Wednesday) it sort of all caught up with me – the cottonwood trees were shedding everywhere (it looked like a snow storm on parts of my commute), which made my sinuses cranky, and the increased heat and humidity combined with already being exhausted all conspired together, and by the time I got home from work, everything hurt. My joints ached. Putting pressure anywhere on my arms or legs hurt like a bruise. I had a headache. My eyes ached when I tried focusing too hard on anything. I was pretty miserable. I ended up taking a Benadryl and heading to bed around 8:30.

I’m writing this Thursday morning on my way to work. I feel better than I did last night, although I definitely wished this morning that I’d gone with my instinct to bring my work computer home with me yesterday so I could work from home today. I’m hoping the extra sleep last night will have been restorative enough that I’ll make it to the end of the week.

I am annoyed that my body can’t handle a low-key weekend road trip without at least one extra day to recover, but I’m not really surprised. I’ve made an appointment with my doctor to talk through what options I might have to manage this better (something I started looking into before I got sidetracked with top surgery prep). So we’ll see how that goes. Meanwhile, I’m trying to be present in the aches and pains, and be grateful for what my body can do.