On the Arthritis Foundation website, they have a feature called “Look Up By Body Part,” which allows you to select a body part and see what symptoms are common in that area of the body.
I started looking at it and I realized that for me, the question isn’t what does hurt, but what doesn’t.
It’s creeping in. And not slowly, I’m afraid.
Increasingly I struggle with hours of morning stiffness, doing and undoing buttons, maneuvering my coat on, and fastening my bra. My left ankle has been swollen for the last few weeks. I haven’t really had issues with my ankles before, so this doesn’t make me very happy, to say the least.
I feel like I am becoming my 86-year- old grandmother. And I mean no disrespect by that at all. It’s just incredibly frustrating and discouraging to see my body in a constant state of flux, and not always in a good way.
I am trying to play the “I don’t need meds game,” but I think I’m only hurting myself at this point.
And 5mg of Prednisone is unfortunately doing nothing for me. I wish it was. Because I hate being on steroids. And if 5 mg is doing nothing, that means I will probably have to consider the option of increasing the dose. And I don’t really want to do that.
On a good day, “X” marks the spot. I can easily pinpoint one or a few areas where I am in pain. On a bad day, I can’t pinpoint the pain. It’s everywhere. And it weighs me down. I feel like I have the weight of the world on my shoulders, and my shoulders feel like they will collapse under the weight of everything.
Sometimes when I get really exhausted, I cry. Like a four-year-old. But I’ve come to realize that this isn’t a babyish thing. It’s frustration. That I want to keep going, even when my body says stop. And sometimes fighting against it works better than other times. But that’s the thing about this body. When it wants me to stop, it makes me stop. Pain and exhaustion are hard to fight against.
And Thanksgiving was crazy, in a good way. We were in New York with my boyfriend’s family. And his brother got married the day after Thanksgiving. It was busy. And I was worried that I would crash. But I didn’t. At least not while we were gone. But just a few hours after getting home, pain and exhaustion hit me. This isn’t a reflection on the week that we spent away. Overall it was pretty chill. We didn’t go to bed super late, and we were able to sleep in. We didn’t do a ton of strenuous activity.
It’s just me. This is my body. It’s the way it works now. All activities cost me, whether I want them to or not. I fared very well overall on this trip. I think a lot of it had to do with excitement and adrenaline. I skated through and didn’t really have to think about it. Even though my boyfriend’s family was very good about checking in with me about how I was feeling.
This is just the way it is. I lucked out. For the time we were away, I felt reasonably well. And now my body is paying me back. You get a reprieve and then you suffer the consequences of that reprieve. This is about checks and balances. A reprieve isn’t free. It comes at a cost.
And I know this. But I think this is one of the hardest things to accept about illness – that my body has limitations that I just can’t always fight against.
I woke up this morning feeling pretty bad. I got up and went back to bed three times. I didn’t even know if I would have the energy to write this post. But here I am.
I wish I could say that tomorrow will be great. It might be, or it might not. The reality is that I don’t know from day to day, or hour to hour, for that matter, how I am going to feel.
And I try not to burden other people with this. I could complain all the time, about every little ache and pain. And there are certain people in my life who do get the laundry list of things that aren’t working for me. But I don’t see how complaining serves me or anybody else. I guess I do vent my frustrations here, and maybe that is akin to complaining. But I’m not trying to be whiny. I’m just stating the facts.
Life is hard. I have good days, and I have bad days. It’s a good period when the good days outnumber the bad days, less so when the bad days outnumber the good. And I’m eagerly awaiting the appointment I have with my rheumatologist in about ten days. I wasn’t supposed to see him until February, but things seem to be getting worse and not better and we need to figure out what the next step is going to be.