Reminded that my body can feel good

July 12, 2019

It’s not that I intentionally try to think of my body in negative ways, it just happens. My day is focused on which pills to take, how to moderate my activity enough to not cause fatigue, but so much that I don’t get enough exercise, how to sit and stand to lesson musculoskeletal pain, and being super careful about my diet. That’s before I research symptoms, diagnoses, and treatments. I am frequently aware of aches and pains, fatigue, nausea, and other symptoms. I don’t look for problems with my body, but I think about them constantly anyway.

And then this week I was aware of good sensations, and it made me realize just how much I think about the bad stuff. The good stuff came in two forms. First, there was physical therapy. That often makes me feel good, and I appreciate it every time. Still, it doesn’t make me aware of the juxtaposition as much as I was this week. The other thing that happened was that I had sex. I hadn’t had sex in a while, and when I did, it was just a fun night with a former boyfriend who I fool around with whenever he’s in town. This time, he was in town for a week, and while we didn’t have sex every day, we still had quite a good time. He’s very understanding about my health issues. One night he was in the mood and I didn’t feel up to it. No big deal. Another night, I felt really sick, and he simply held my hand until I felt well enough to go to sleep. He knows what will hurt me and avoids those things. Having that level of trust and understanding makes all the difference for me. It allows me to simply enjoy myself.

Now let’s face it, even healthy people often feel more positively aware of their bodies after good sex, so that isn’t unusual. It’s just that I became aware of the fact that the good feelings were displacing the bad ones. In the afterglow of a particularly good orgasm, I was too focused on the good feelings to notice any pain or fatigue. I knew those would likely hit me later, but for a while, they were held at bay. This wasn’t new. In fact, there were a few times when I was dating this same guy that I specifically said I wanted to have sex because I was in a ton of pain and I knew sex would help, thanks to the lovely brain chemicals that are released. Unfortunately, my dating life is pretty much nonexistent, so that hasn’t been an option for me lately.

When I went back to physical therapy at the end of the week, I paid more attention to how good I felt afterwards. She had spent a particularly long time working on my knees, and I noticed how different they felt now that they were full extended (something that doesn’t yet happen without her assistance.) I felt the lack of knots in my neck. My body was relaxed and, while not pain-free, definitely pain-lite.

Most days I won’t be at physical therapy or enjoying sex, and I won’t have those moments with few symptoms. But this was a good reminder that when I do occasionally notice my body feeling good, I need to revel in it. For as long as it lasts, feeling good is important, and something worth savoring.

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Feeling a mysterious new contradiction

June 19, 2019

Last night I went to a Meetup group for the first time in 7 or 8 months. The folks there greeted me warmly and asked what I had been up to, and why I hadn’t been around. And the thing is, I found it hard to answer, even to myself.

I had been thinking about that before I went. At first, I was busy. Then I didn’t feel well. Then I felt better, but I was trying to catch up from not feeling well. It was never a priority – yes, there were times I could have gone but chose not to. But also, lately I have either been feeling too ill to go out, or else I’m feeling pretty good and I’m using that opportunity to catch up on household chores, fun projects, and spending time with close family and friends.

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Most recently, the surprising thing is that for the past month or so, I have been feeling so much better, while at the same time I feel that I am struggling more than usual. This is new to me, and hard to wrap my head around, much less describe to someone else. The closest I have come so far is a battery metaphor, since this is mostly related to energy and fatigue (though other symptoms play a role, too.) My battery never gets to 100% anymore, and probably never will. But lately I feel like I struggle to get my battery as high as it had been. If prior to the past month it sometimes got to 65% on good days, now it never gets above 50%.

But here’s the surprising part: it goes down more slowly. Before, it wouldn’t take much for me to go from 65% to 50% to 40%, but lately I feel like I can do a lot more at 50% before I drop down to 40% or lower. It’s an odd feeling. I’m more tired on my best days, but I can do more because I stay at 50% for a lot longer.

I want to know what this means. Is it a sign of improvement or a sign of deterioration? I believe it has to do with going off of an adrenal supplement. The goal was to stop the supplement for 2 weeks so I could take a test, then resume it. The first few days were horrible, but then I actually started to feel better. I had to put off the test for an extra week because of scheduling issues, and by then, I wanted to see what would happen. After all, I really did feel better than I had in a while. Now it’s been 5 weeks and I am anxiously waiting for the test results. What will they show? Will I need to go back on the supplement? Will I instead need the prescription that we were contemplating? Or is my body better off on its own? I am figuratively chewing my fingernails in anticipation.

My body is a series of mysteries. Sometimes there are answers, but far too often I never find out what is going on. I have learned to accept that for the less pressing issues (though sometimes I later find out they were more important than I had realized) but since fatigue has been my most disabling symptom for many years, this is tantalizingly close. I can almost feel the answer to the mystery dangling in front of me, but I can’t quite reach it. I am aching to know, though, if I am improving or deteriorating. Could I be on the verge of a breakthrough? Or is it the edge of a downward slide? Maybe the iron infusion that I had dreaded is having an affect? My fear is that the test won’t give conclusive results, and I won’t know why I feel this way or how to proceed. I should find out any day now, and until then all I can do is wait.

I see doctors constantly, and when they ask how I have been, it is almost always hard to explain. But now the answer is that I feel both better and worse at the same time. I hope they can help nudge towards more of the better.

 


Yes, it’s a choice

June 11, 2019

One thing my therapist is helping me realize is that many of the things I do for my health are actually choices on my part. I often feel trapped, like I have no options, but that’s actually not true.

Take the party I went to recently. I put on my sexy new dress: tight, red, showing cleavage, and making me look hot. This is the sexiest dress I’ve owned, and I didn’t want to ruin the effect by wearing my big, bulky knee braces. So I made a choice: I didn’t wear them.

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The dress I wore with the knee braces I didn’t

I wear those knee braces every time I leave the house, but since I knew I wouldn’t be doing much walking, what if this time I didn’t? What’s the worst that would happen?

Well, long term I could do permanent damage by wearing away cartilage, but that wouldn’t be an issue for one evening. I would be in pain, but maybe that would be ok? I know the pain, and it would be manageable. I should still be able to drive home, which is the deal-breaker for me.

So I did it. I brought the braces with me, just in case, but I left them in the car. I wore cute sandals with my orthodics in them. The dress calls for heels, but I knew that level of pain wouldn’t be worthwhile. I’m better off in sneakers, but really didn’t want to do that. I wanted to look good, damn it!

I was in a lot of pain for the first part of the party. Eventually, though, I found a good balance between sitting and standing. It meant sometimes sitting when I would rather stand, but that happens a lot even when I wear the knee braces.

But it also meant that I felt good about the way I looked. I kept forgetting that I was “passing” as healthy, so when I asked a guy out on a date and he said yes, he didn’t know about my health issues. When I showed up to our date in a cute dress and knee braces, I had to explain. I wasn’t doing it to pass, though. I wasn’t trying to hide my health problems. No, I was simply trying to look good in my new dress. And what’s so bad about that?

It is a privilege that I was able to make that choice. I know that some day I might not be able to. But somewhere in the midst of everything, I realized something important: I wasn’t simply choosing to not wear my knee braces. I was choosing to boost my emotional health at the cost of my physical health. That was the true choice that I made.

Within two days my knee pain levels had returned to normal, but the memory of how I felt all dressed up has stayed with me. It’s spring now, and even though I wear skirts and dresses almost every day, I will be wearing my knee braces whenever I go out. That, too, is a choice that I am making. The thing I have to remember, though, is that it is a choice. I am choosing whether or not to do the thing that is best for my physical health. And occasionally, it best not to do that thing, and to give my mental health a boost instead.


Choosing convenience

May 20, 2019

Let’s face it, dealing with chronic illness takes a lot of time and effort. There are the myriad medical appointments, tests, and treatments. There’s handling the day-to-day symptoms. The flares just add to it all. And that’s on top of having fewer “good” hours in a day than most people. It’s exhausting and overwhelming at times.

That’s why, after many years, I have finally decided to choose convenient options without guilt whenever I need to. Yes, it’s better for the environment to use reusable containers instead of sandwich baggies, but I’m using the baggies when I need to. I will still use the reusable containers most of the time, but when I can’t fit all of the containers into my cooler to bring with me to the doctor appointment, or when I’m going to be out all day and I need more space in my bag, or when I need to make my bag as light as possible, or when I can’t keep up with the dishes then yes, I’m going to use the plastic baggies and then throw them away, and I won’t feel guilty about it.

Similarly, I should use rags when I’m cleaning. But that’s more to wash, more to deal with. So I will use paper towels at times and I won’t feel guilty about that. When I’m in a bad flare, I will use paper plates and plastic forks without guilt. I will run the air conditioner if that helps me to feel better. I will take extra long showers when that helps me. And I will do all of it without guilt.

I believe that every person on this planet has a responsibility to do what we can to preserve and improve our environment. But I am also aware that we have to accept our limits. And maybe one shouldn’t come at the cost of the other. I have been adhering to this new mindset for several weeks now and it has been freeing, not to mention helpful. Instead of doing what’s “right” or what I “should” do, I choose what makes the most sense at that moment. Sometimes I use the reusable containers, sometimes the sandwich bags and you know what? Either one is ok.

Now I’m wondering what types of things other folks choose for convenience, and I’d love to hear from you. Please share yours below! It would be good to add to my list and to give other readers more ideas, too. So what shortcuts do you take?


What a difference a haircut makes

May 20, 2019

I recently got a somewhat-drastic haircut, and was surprised by just how good it felt.

This wasn’t totally out of the blue. I had thought about cutting my hair super short for a while. I had it short many years ago, but since just before I got really sick I had grown it out, always having it somewhere between chin-length and almost shoulder-length. Recently I wanted to cut it but chickened out. Then a few weeks ago, as I pulled into the parking lot at SuperCuts (an inexpensive chain) it occurred to me that instead of a trim, I could do something different. I sat in the chair and asked the stylist I’d never met before to cut my hair really short. And she did! It came out even shorter than it had been a dozen years ago.

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Instead of my haircut, here’s a photo of an adorable furry dog cuddling with me.

I immediately loved it, but it was as I drove home that I questioned why I was downright ecstatic. I mean, it’s just a haircut, right? But it was more than that.

It was me making a conscious choice to change something about my body in a positive way, with no baggage attached. When was the last time I had done that?

Thanks to my chronic illnesses, I so often feel that I don’t have control of my body. A haircut is a small thing, but it’s still a thing I chose to do. And that feels good.


“Don’t let the hormones make you think that you’re crazy”

April 8, 2019

I’m an over-thinker. I always have been, I just didn’t realize it was possible to be any other way. In more recent years, as I have had a lot more time to think and a lot less ability to do other things, I have found myself thinking things through even more. This can be incredibly useful, and has allowed me to research my health condition, for example. But it can also lead to trouble, like when I worry about what certain things mean.

I read a lot, too. I read books, blogs, news articles, Facebook posts. I read about chronic illness. This reading means that I find useful information, but I also learned about things I would probably be better off not knowing. I often wish I could unlearn things.

One thing I wish I didn’t know what how much sicker and more disabled some people are than me. Obviously I knew this in an abstract sense, but being involved in the chronic illness community makes it a lot more real. I also see the high rates of mental illness among those with physical chronic illnesses. I worry that one day I could develop some of these issues. I could become more disabled, develop new physical chronic illnesses, develop mental illnesses, or all 3. This isn’t something I worry about all day every day, but it comes to mind a fair amount.

Last week I had a horrible bout of anxiety. I was nervous about the upcoming iron infusion, and the closer it got, the worse I felt. By the evening before, I was a complete wreck. I should have used some medical marijuana, but for some reason that didn’t even occur to me until the next day! I did everything else I could think of: I messaged some close friends, told them I was anxious, and asked for distractions. The kid videos, cat video, stories about their lives, etc. were very helpful. I read the questions my therapist had suggested I ask myself to determine if my anxiety is founded. I ate comforting foods while still having to avoid inflammatory foods, thanks to the food reaction a week earlier. The next day I stayed busy as much as possible. I was annoyed but managed not to panic when I got my period, only 3 weeks after the last one. I had a friend come with me to the infusion. But I was still a wreck.

On the way to the infusion, I told my friend who it would work. It’s a very short thing, but they keep patients around for a while afterwards because there’s a not-insignificant chance of a potentially fatal reaction. “No wonder you’re anxious,” she said. As I responded, “Oh, that has nothing to do with it” I realized how strange that was. I wasn’t worried about a horrible reaction. So why was I so anxious? I couldn’t figure it out.

Several days later I went to my therapy appointment and I immediately brought up the extreme anxiety. It was worse than just about any I’d had before – it rivaled how I felt the night before my food surgery several years ago, and that made no sense! We talked it through for a while. Eventually she pointed out that I have been hypothyroid lately, right? Yes. “Hypothyroid can cause anxiety. In fact, any psychiatrist who has a patient with anxiety will test their thyroid function.” (I pointed out this unfortunately isn’t the case and she said, “If they’re any good, they’ll do it.” Boy do I like her!) Then she pointed out I had unexpectedly gotten my period that morning, and I usually get more emotional a day or two beforehand. Of course, I hadn’t connected the two because I hadn’t known my period was coming. And then she said it:

“I know you worry about developing mental health problems, but don’t let the hormones make you think that you’re crazy.”

And I instantly knew she was right. I worry so much about developing anxiety (yeah, I know, totally counterproductive, right?) or depression but so often, the worst of my anxiety, depression, or other similar feelings are related to my hormones. When I was feeling down last fall it turned out to be a problem with my thyroid medication. When I suddenly feel like crying for no reason at all, it’s always my hormones. At that moment, that was exactly what I needed to hear.

So yes, in this case I would have felt anxious anyway, no doubt about that at all. Medical procedures worry me for a lot of legitimate reasons, and the last time I got iron infusions it didn’t go well, but I wouldn’t have typically felt this anxious by any means. On a scale of 1-10 I would have normally been a 5, not the 8+ I had been experiencing.

I immediately felt better. It was the hormones. That’s all. I have no doubt about that now that I have had some time to think about it (and my period has ended.) It was horrible timing, but there you go.

Could I one day develop horrible anxiety or depression or something else that has nothing to do with a hormone imbalance? Absolutely. Anyone could, but also, my paternal grandmother, father, and sister all had/have depression; my mother and several of her first degree relatives have anxiety. But that also doesn’t mean that every instance I experience is the sign of something chronic. It could just mean that my hormones are temporarily messed up.

Let’s face it, odds are good that I will eventually develop a new chronic illness. It could be physical or mental, and either way, I will have to deal with it. I worry about both, because I feel like I can’t handle anything else, yet I have felt that way before and have somehow managed to handle each new thing. For now, though, all I can do is keep trying to deal with my current health problems the best that I can, while attempting to not worry too much about what may or may not come in the future. And reminding myself that when I find myself feeling overly-emotional, it’s probably due to my hormones.


Getting taller thanks to physical therapy

January 27, 2019

There are so many topics I want to write about but they’re negative (I mean, the name of the site is Chronic Rants, after all), and I really need to focus on something positive today. So let’s talk about a surprising benefit of my physical therapy.

When I was a kid, my hands and feet were bigger than my mom’s, so we figured I’d be taller than her 5’2″. When I was diagnosed with scoliosis, x-rays were done to see how much more I would grow. The doctors predicted I would be around 5’3″. But as I grew, my scoliosis got worse and compressed my torso. In the end, I was only 5’1″.

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Now, being short isn’t the end of the world, but let’s face it, it can be super inconvenient. In fact, a lot of my neck pain comes from being short. Reaching up to get things off of high shelves, reaching forward for the steering wheel, sitting awkwardly in chairs because I can’t lean back and have my feet on the floor at the same time, and so much more can cause problems. I have even developed arthritis affecting the big toes in each foot as well as the start of bone spurs in those toes. My doctor told me to stop standing on my toes. Easier said than done! I stand on my toes to reach shelves in my apartment, to get things off of shelves in stores, and even to sit on a toilet (ok, I’m not standing on my toes, but they’re still at that angle, because I’m too short for my feet to be flat on the floor.)

And never mind my inability to find anyone in a crowd or see over the person who sits in front of me in a theater.

I go to a lot of doctor appointments (no surprise there!) and they often weigh me and measure my height. I range between 5’1″ in the morning and 5′ 0.5″ later in the day. I can be a little taller as I go about my day thanks to an extra inch or so from my sneakers or winter boots. Unfortunately, due to toes issues I can’t wear heels any more. It’s not like I wore them every day, and I didn’t wear super high heels, but once upon a time I would occasionally wear heels to work and enjoy being 5’3″. I would often wear heel to parties so that I wouldn’t have to crane my neck as much when I stood around talking to people. Taller folks laugh at that, but it really helps. But now, no more heels for me. For the rest of my life.

So I’m short. I don’t love it, but I’ve accepted it. It’s not like I have a choice. I’m not looking forward to shrinking as I get older, and I hope to minimize that with my physical therapy, but even so, with my scoliosis, I know it will happen.

So imagine my surprise when I went to a doctor appointment right after physical therapy and they measured me at 5′ 1.5″! I was thrilled. I know PT helps with my pain and discomfort. That’s been obvious from the start. And my current physical therapist is the best I’ve had. I travel way out of my way to see her. In the past, PT was 6-12 weeks, then sending me home to continue on my own. When my problems recurred, I was blamed for not consistently doing my exercises. But let’s be real here: sometimes they won’t happen. If I have a week where I feel like shit, where I’m too fatigued or in tons of pain or have a super heavy period, then I won’t do those exercises. And then when I resume them after a week or two, damage has already been done and I won’t be able to get myself back to where I was at before the short break. That’s not my fault, it’s just how my body is.

My current PT is different. She sees me every 1-3 weeks all year long. We space things out in a way to get insurance coverage throughout the year, meaning we make a lot of adjustments in the autumn based on how many visits I have left. This means I maintain a certain baseline that works well. If I come in with a complaint, she focuses on that, like this week when I had a lot of neck pain. If I come in without any particular pain, she focuses on general posture, loosening muscles, and straightening my spine.

And it must be working. For the first time in many years I have a lot less pain on a consistent basis. When I first started seeing her, I would come in with a lot of pain to every session. If I didn’t see her for 3 weeks I was in agony. Now, 3 weeks is usually doable. I recently had to stop seeing her for 6 weeks due to some family issues she was dealing with. By the end I had some pain, but it wasn’t too bad. I was amazed!

Obviously PT was working well for me, but getting that height measurement just put a number on it. She was pleased when I told her. But then something more surprising happened. A few weeks later I saw a different doctor and they measured me. This time I wasn’t coming directly from physical therapy. In fact, my last PT appointment had been 3 days prior. But when they measured me, I was 5′ 1.5″ again! I was floored.

I don’t know if this will last. I don’t know if it will even happen again. All I know is that for once, I have concrete, numerical proof that something I am doing is actually working. I’ll take it!

Now excuse me, because it’s time for me to do my physical therapy exercises.

 


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