My new gym routine

January 1, 2020

If you have been reading this blog for any length of time, you probably find this title strange. But it’s true, I have a new gym routine!

About 10 years ago, I got into my first gym routine. I had quit my job, and decided to take good care of my body during my time off. I found an inexpensive gym near me where 2 or 3 times each week I would lift weights as my physical therapist had taught me and do some pedaling on the recumbent bicycle. It went well until I got a job.

I tried to keep it up. I went to the gym a few times on lunch breaks, but it was too rushed. I went in the evening a few times, but I was so tired. Mornings weren’t an option; it was hard enough to get to work on time. I went less and less often before finally giving up.

I didn’t know it at the time, but my body was suffering. Untreated Celiac disease, improperly treated hypothyroidism, and the start or worsening of adrenal fatigue were taking their toll. Eventually I left my job and went on disability benefits. So many days, it was hard to walk to my car. The gym was out of the question.

This time around it’s totally different. My approach is, something is better than nothing. This won’t be true for everyone, of course. For a lot of people, even tiny bits of exercise will make them worse. I’m pretty sure I was at the point for a while. Still, I am remembering 15 years ago when I was having a tough time, and a friend encouraged me to lower the bar and do a lot less. Instead of taking a long walk, or even aiming for a shorter distance, I set a time limit. My goal was a 10 minute walk every few days. That’s it. Five minutes down the street and then turn around. I could walk as slowly as I wanted and needed to. This was a great start, and I found myself walking faster, going farther, in those 10 minutes. I no longer saw snails passing me by. Eventually I increased the time to 15 minutes, then 20. Of course, that was a long time ago, and my abilities are quite different. Still, I remember slowly building up from something so tiny.

For a long time now my medical practitioners have been encouraging me to exercise more, especially because they know that there is a gym in my apartment complex. Each time I tried, though, it went badly. Some days I was ok, but others I was exhausted and felt horrible for the rest of the day and sometimes even the following day. Since I never knew how I would feel, going to the gym felt too risky, so I often skipped it. If I had plans in the afternoon, I wouldn’t go in the morning. It was a big hassle. I had to change my clothes, get over there, lift a bunch of weights, ride the bike, get home, and shower. It was a lot!

This time is different. I figured something was better than nothing. Last year an occupational therapist wanted me to do a specific set of weights. Under her supervision it went well, but when my sessions ended and I had to keep it up on my own, I couldn’t, for all there reasons I just gave. I would have a setback after working out, then by the time I went to the gym again weeks (or more) later, I had to start over at a lower weight again. It was incredibly frustrating.

Then I started to think, since that one exercise is what I most want to do at the gym, what if I do only that exercise? No others. I wouldn’t exhaust myself because I wouldn’t do other weights or any cardio. I wouldn’t have to change my clothes; I wouldn’t be exercising my lower body so jeans and snowboots would be ok, and I wouldn’t be sweating. This also meant that I wouldn’t have to take a shower afterwards. I could even do my exercise on my way home from someplace.

For the past two months, I have been going to the gym twice a week. If I need to move a day because I don’t feel well, that’s fine. There’s no pressure. I simply want to keep going. I am only there for 5 minutes, if that. Yes, I feel self-conscious sometimes when folks see me walk in, and then see me leave mere minutes later. But you know what? It’s better than not showing up at all!

I was supposed to go to the gym today, but I strained a muscle in my neck and I am worried about injuring myself. There’s no guilt. No concern. I will go when my neck feels better. If I miss an entire week, that’s not the end of the world. I will not let it derail me. I hope I can get there tomorrow, though, because I enjoy the feeling of accomplishment, even though it is too soon to notice a big difference in my strength.

I am not doing a lot compared to my peers. This is small stuff. But you know what? I can’t get to the big stuff (ok, the slightly bigger stuff) without starting small. Some people can, but I can’t. That’s ok. And even if I never do more than what I am doing right now, at least I’m doing something. This is manageable, which means I’m actually doing it. This is my longest gym-going streak in the past 10 years and I plan to keep it up. Wish me luck!

Meanwhile, could this approach apply to something in your life? Maybe it’s exercise, a dietary change, cleaning your home, making new friends, or something else. Is there some way that the “something is better than nothing” approach could help you, too?


Not missing sudden onset diarrhea

December 28, 2019

I quickly packed up my laptop, water, reading glasses, phone, and jacket, and walked hurriedly to find the nearest restroom. Sitting on the toilet, I wondered what caused this sudden bout of diarrhea, since this hasn’t happened in ages. And then it hit me: this hasn’t happened in ages!

It feels like a fucking miracle.

There were the times like this that I was able to walk quickly to the closest restroom. There were the times I was walking around outside and had to walk into stores, hoping they would let me use their restroom, sometimes begging, sometime being turned away. There were the times I was walking through less commercial areas, and wondered if I would find a toilet in time. There was the time I was in bumper-to-bumper traffic on a highway in another state, wondering if I would have to deal with diarrhea in the tall grass on the side of the road. Thankfully, I made it off the highway at the next exit, immediately found a motel, and was allowed to use the restroom. There were the times it hit me at a friends’ home, and I was embarrassed by what I thought they might hear and/or smell, not to mention how long I would spend in the restroom. There were a lot of near misses. There were a couple of times that I pooped my pants.

And I haven’t dealt with any of those in ages. In fact, the only diarrhea I have had this year has been easily explainable. It was either due to gluten or my period (maybe I will get my period today or tomorrow?) That was it.

The thing is, these bouts of sudden diarrhea weren’t short-term. This has been happening since my teen years. After 25 years of it, of course I was aware that it had stopped. I have been very aware of how much better I have been feeling, and am incredibly grateful for it. Even so, sitting on the toilet in the library 20 minutes ago, I felt immense relief and gratitude that this is no longer a regular problem for me. I still have loose stools, but not these sudden onsets where I must run to the nearest toilet. I no longer worry about it when I go out. I no longer make a point of searching out bathrooms in public places, just in case. I no longer feel the fear and anxiety of this unpredictable affliction. I feel freedom from all of that.

I am bitter and resentful that this wasn’t addressed properly 25 years ago, but I am also thrilled that it seems to be resolved now. I hope that it never returns.


Advice between chronic illness folks

October 16, 2019

I don’t know about you, but it took me a looooong time to figure out how to handle flares. The truth is, I’m still learning. But over time, thankfully, I have found some things that help. Sometimes I take the learning process for granted; after all, I have had symptoms for almost 30 years now. A phone call a few nights ago changed that.

A friend was in the middle of a flare, and having a rough time. They were dealing with both the horrible physical symptoms as well as the emotional fallout of having to miss a much-anticipated event that night. There was also the all-too-common self-recrimination, wondering what they did to cause this. Maybe they should have done less the previous week when they felt so good. Maybe they should have rested more. Maybe maybe maybe.

I’m the queen of “what ifs” so I really get that. I do that to myself all the time, as much as I try not to. I’m getting better, but it’s still a struggle. This time, though, it was someone else who was struggling, so I was able to step outside of my own issues and help them.

My friend was only diagnosed last year, which really isn’t that long ago. It takes a long time to learn how to handle chronic illness. I wish I had had someone to guide me, but unfortunately, there was no one in my life at the time with that kind of experience. Now, I am glad I can be that person for others.

First, I talked my friend out of the emotional spiral. Sometimes our bodies are going to flare, and there’s nothing we can do about it. Maybe they did overdo it, but there was no way to know in advance. And maybe they didn’t overdo it, and there’s no way to know that, either. Maybe they could have done less last week, and they still would have had the flare, right? The weather was terrible; not only are we going through a seasonal change, but it was a very stormy day. There’s a good chance the weather was at fault more than anything, and what can anyone possibly do about that? Besides, once you’re in a flare, blaming yourself won’t help at all. And as much as we think we can figure out the cause and prevent the next flare, we can’t. Ok, sometimes we can, but to think we can do that every time is just unrealistic. That would imply there’s a way to prevent ever having a flare again, and we know that isn’t true. We only wish it were.

Once my friend was feeling a bit better emotionally, we talked about how to handle the current situation. I suggested some fun tv shows to watch, etc. But here’s where we get to the part I most want to share with you. Without thinking much of it, I mentioned some things I do that my friend thought was brilliant and it got me thinking, maybe not everyone does this? So let’s share our tips!

I know I will have more bad days. I don’t want them, but they are inevitable. So I prepare for them. Just like I have bandaids at home for the inevitable future cut or scrape, and acetaminophen for the inevitable future headache or fever, I also keep things around for future flares. Here’s a short list:

  • Fun, lighthearted movies saved on my Netflix and Amazon Prime accounts, plus a few old dvds.
  • Easy to watch tv series saved on Netflix and Amazon Prime.
  • Chocolate and other comfort food.
  • Frozen leftovers of healthy meals I have previously made.
  • Low-energy hobbies on hand. For me, this is currently knitting and crochet, which I enjoy on all but my worst days. I also like to read and listen to audiobooks when I feel up to it.

These work for me, but you will have your own items. On top of this, several years back I read a tip on Chronic Babe to make a list of things to do during a flare, since we can’t always remember these things when we’re dealing with tough symptoms. One problem I have found is that when I feel especially bad, I don’t even think to look at the list! So I recommended that my friend make a list, and tell several close friends and family members about it – anyone who they might talk to during a flare. That way, their friends and family can remind them to check their flare list, where they will find a list of things to do and ways to think.

My current list has fewer items like the ones above, which have become second nature at this point, and more items around my thought process, mostly recommended by my therapist. These help me to stop blaming myself or assuming things will get exponentially worse. I keep the list in the Google Keep app on my phone, so it’s always handy. Even if I don’t have the energy or am in too much pain to cross the room to my desk, I always have my phone on me. That’s key – keep your list where you can easily find it when you need it. Keeping it at the bottom of a heavy box on a high shelf is definitely not the most useful place for it!

It sucks, but we all know that we will have bad days, so we might as well prepare for them when we’re feeling ok. What do you to to prepare for the bad days? Do you have a flare list? What’s on it? Please share in the comments, because I’m certain you will have ideas that I and others haven’t thought of, and we all need to learn from each other!


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.


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?


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