RA Guy Adventures of RA Guy 14 Comments

Over the past couple of weeks, I’ve been having moments of “confusion.”

I don’t think that they’ve been a result of the severity of my pain, as by all practical purposes it’s been within the range of what I normally experience on any given day. I do think, however, that they’ve been a result of the frequency of my pain, which leads me to more clearly understand something that I might not have understood before: even when pain is chronic, there are definitely times when it’s more chronic than less chronic.

The pain does not need to be at its peak to wear you down (although yes, this alone will often do it.) The cycles only need to be frequent…and by frequent I’m talking about 2-3 times a day. The actual moments don’t last too long, usually between half an hour to an hour…but instead of having an entire day to emotionally recuperate from these episodes, I find myself with only a few hours. I still haven’t recovered from the previous bout of pain before I find myself moving into the next bout of pain. In addition to the physical fatigue, this can also cause a lot of emotional exhaustion.

But at least I’ve recognized this as such…and as usual, the lesson did not come easy. I was actually pushed towards the edge, once again, a couple of days ago when I was riding a bus to the center of town. Within the blink of an eye, my world seemed to turn upside down. I didn’t know where I was, or what I was doing. My mind had, indeed, caved in to the constant pain. I was confused, and I was frightened. Nothing seemed familiar to me, except my breath. So I grabbed on to that, and just as quickly as I had plunged into the confusion, I was back to where I was just seconds before. I knew who I was, I knew what I was doing, and I knew exactly what was going on.

My mind was tired.

And even though I haven’t experienced these feeling for years, they still evoke a sense of familiarity. Last time I was in this phase, though, I just continued to get more and more confused. I couldn’t understand why my mind seemed to be turning against me, why it wouldn’t just push through the pain like the rest of my body seemed to be able to do.

I had another one of these episodes of confusion yesterday…but instead of getting scared, I told myself to just try to experience what was going on. If my mind didn’t want to respond as readily as I was used to it doing, so be it. Let it roam…but in a manner in which I could guarantee that I was safe. So I powered up my word processor, and started putting some of my thoughts (as confused as they were) down on paper. I’ve since gone back and read it a couple of times, and I’ll admit it doesn’t make too much sense…but at least during those few minutes, when the pain was it’s worse and my thoughts seemed to be spinning out of control, I did have a connection that I could grab on to.

I don’t know when these episodes will pass, but at least I have some additional confidence, something to grab on to, when it just plain out feels like I’m losing my mind. And most importantly, I’m talking about these feelings, instead of keeping them secret.

My mind is indeed tired from the pain. I’ll continue to give it as much rest as it needs, and I know that I’ll soon be better.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

Comments 14

  1. Kat Dugger

    I can relate to what you are saying. The times when my pain feels like a sine or cosine curve are annoying at best. I guess I am fortunate to not go through the confusion with the pain, however I think a lot of times I live in a constant state of confusion because I walk into a room, knowing I was looking for something then have to mentally retrace my steps to remember what I was needing. My pain is constant. For about 2 months, it was very mild, but as the weather patterns have changed, and certain school events required more of me, my pain came back with a LOT of vengeance. I think I may prefer the varying pain during the day over the constant that I’m going thru, but either way, living with RA is NOT a picnic I would have knowingly or voluntarily attended, somehow my body decided I needed to be a guest.

  2. Dianne

    Hi. I have had these kinds of episodes and haven’t associated it with pain, but more with fatigue and drug side effects (methotrexate, plaquenil et al) and/or the combination of both. It is nonetheless disconcerting and worse than just forgetting the right word, but forgetting where you are, where you are going, or how to get where you are going. First time I had this experience I had two of my kids and a neighbor child I was babysitting in the car on the way to the doctor for one of my sick kids and I could not for the life of me figure out how to get from where I was (half way to the doctor’s office) to where I was going. I have had a handful of this sort of large event in the last twelve years and smaller more manageble events in my daily life. I would love to do more research into this side effect of the disease…if only I could remember…… 😉

  3. Nancy

    Well put…a tired mind, I completely understand. I hope your chronic will become less, soon. Stay tough! ♥

  4. Patty

    First, I want to commend you on your courage to put your underlying feelings and experience “out there” for the benefit of us all. I’ve had the AHA moments as I’ve read so many of your posts; if only to realize that you have already had the realizations.
    Now — before I forget — I also want to thank you for this memory issue post. I’ve had RA 34 years, but just thought to ask my rheumatologist about the memory/confusion problems. I really thought he would put it down to my age (64) even tho I think I’m still too young for age to be the answer. He said it’s the pain. I accepted what he said, but couldn’t quite put it together. I also have trouble analyzing ideas. What you write makes perfect sense and I will print it out so I can work on teasing out the details of my mental fatigue. Thank You.

  5. Melissa

    I find the pain doesn’t have to be bad to wear you down. Constant pain that is dull can wear on you mentally. And having those moments of terrible pain, only to have a few hours reprieve can do a number on a person. I hope you’re doing better soon.

  6. Lana

    I have confusion moments too. You are right that pain wears you down no matter what level it is. I have also had that moment you described. When I realize what is happening, I take some deep breaths and if that doesn’t work, I get an ice pack or a cold drink when an ice pack is not available. I use it to cool my skin down. The cooling of my skin snaps me back when the breathing doesn’t. I have been driving pulled my car to a nearby store and purchased a cold drink. In the winter time, I open my window and let the cold air touch my skin. I stop everything I am doing so that I can focus on getting back to reality. It takes some relaxing but I get there. I always thought it was brain fog but maybe I am wrong. I have them once in a while but they pass quickly enough. Hang in there.

  7. Lemon-Aid

    I so understand a tired mind– Life slows and there is nothing you can do but ride it out. Hang in there and I hope the pain lightens up on you.

  8. Deb aka abcsofra

    I hope you will mention this at your next doctor’s appointment. Seems to me that your pain might be better treated in some way or fashion. And for all it’s worth I really think that ra attacks all of us including nerves and those message centers in our brains, thus causing the confusion, etc. Yes, chronic constant pain can do this also but I bet one day science will catch up with us and discover what we are all experiences and talking about and be able to actually see it happening….in the future. Hope you start to feeling a bit better longer and longer.

  9. Dianne

    Thank you for you honesty and authenticity! We can all relate to you in one way or anther, that is why we love you!

  10. Natasje

    I’m new to the wonderful world of RA. And worse than the pain and the stiffness… and the stuck-in-my-bodyness, is the brain fog, the confusion and the fatigue. The confusion scares the bejeezus out of me.

  11. Don

    Construction workaholic man. My Lupus or RA or whatever it is came on later in life about 48 years old. 61 now. Not that easy for a 61 year old guy to find a relationship to keep my mind off this terrible disease. Looking healthy is the worst part to deal with cause no one believes anything is wrong.

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