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Death By Three Dots… Dealing With The Unknown & RA

Anyone who suffers from RA or any other chronic condition knows that there is a side effect the doctors don’t talk about much. No, I’m not talking about the endless head shakes and eye rolls when you park in the handicapped spot on a good day or trying to cut your toenails with a scissor on a stick (no? just me?), but the emotional ups and downs that come with the unexpected changes that RA brings.

You never know if the slot machine of RA is going to give you three cherries and a win or two cherries, a mule, and a kick in the teeth, yet we still have to spin every night before we go to bed.

Rheumatoid arthritis demands different types of energy

RA and chronic illness take energy. I know, “Duh.” It seems as obvious as baby Yoda is cute (OMG, I want a load of baby Yodas for Christmas.. a load-a Yodas!!). Pain takes energy. Moving takes energy. Doing stuff takes energy. Thus, having an illness that puts you in pain, makes moving difficult, and prevents you from doing stuff easily is sure to sap that energy right quick.

The emotional and physical aspects of RA are hard to separate

Let’s really drill down on what that entails, though, because it’s not just the physical that is affected. It’s like chocolate and peanut butter – they are good separately, maybe even great, but when you put them together you realize you won’t ever eat them separately again (if you don’t like peanut butter cups you might be a communist).

It’s just as difficult to separate the emotional from the physical when you have rheumatoid arthritis and chronic illness. Just like the physical, you only have a certain amount of emotional fuel to spend and once it’s gone, things get tough, and fast.

The emotional demands of rheumatoid arthritis

What drains that emotional fuel? Well, as you can imagine, the everyday grind of dealing with pain, fatigue, and inability to finish your to-do list certainly taps the tank. That being said, if we had to deal with the same thing all the time, day in and day out, it would become routine.

RA changes are hard to put up with

When you get into a groove and know what’s coming, it’s much easier to deal with. Like having the same fight with your ex so many times that you don’t even have to think about it you know exactly what words to say in what order…is probably what happens in that situation. I assume. Like maybe when they used to twist up the comforter into a soft-serve ice cream shaped travesty straight from Picasso’s nightmares. How a human being can do that while sleeping… Anyway, I digress. The point is, if RA was as simple as knowing what you’d wake up to, day in and day out, then it wouldn’t be half as bad as what we really put up with – the unknown.

Like I said above, it’s the slot machine of RA and we unavoidably play it every single night. Whether you are new to the game like a bachelorette on a weekend trip to AC, or an old hand, like the chain-smoking saddlebag with eyes that plays the slot machine so much that one arm is twice the size of the other, you spin that reel and hope for energy, low disease activity and surplus motivation.

The unknown of RA disrupts emotional well-being

Unfortunately, just like a real slot machine, those three figurative 7’s rarely come up and you are left trying to cobble together some sort of productive day, week, month, or year. You don’t even get the free drinks that a real casino keeps you steeped in! You keep cranking that lever, never knowing what you’ll spin, and therein lies the tragedy. Not knowing is emotional well-being kryptonite.

The anticipation of rheumatoid arthritis

It’s difficult to explain the constant upheaval that pretty much defines living with chronic illness to someone who hasn’t experienced it but, you know me, we’re gonna try! If you’ve ever waited for college applications to come in or applied for a job or gone on a first date and then stared at your phone after you texted, “Had a great time, do it again?” and you see the three dots and then they disappear and then after a few seconds…NOTHING!

Well, then you know the feeling. Especially that last one. You know we can see the ellipses, right? We KNOW you were going to write something… was it, “Great time, yes!,” or was it, “Don’t txt me again, you smell like a sewer’s cousin made of gorgonzola who bathed in Drakkar Noir and didn’t even pay!” Ugh. Instead, you sadistically engage in the modern form of medieval torture that we’ve all experienced, death by three dots.

Living with daily uncertainty

Well, anyway, I’m not bitter but I think my point is sufficiently made. Imagine living with the three dots level of uncertainty every single day of your life. It would be awful, and you’d expend so much emotional fuel thinking about it, worrying about it, playing it out in your head – well, that’s what me and many others with RA have to do every single day of our lives.

The emotional balance of a high-stress chronic condition

For a few seconds when you open your eyes in the morning, you enjoy that half-sleep forgetful bliss before your brain joins the party. Then you try to move and BAM! The stark reminder of RA hits you in the face and you know, pretty much instantaneously, what kind of day it’s going to be.

When it’s a bad one, you instantly take stock of the things you wanted to do and the things you need to do, and when it’s really bad you even start a third “absolutely must do” list. It’s a constant high-wire balancing act and living with such a high-stress level all the time leads to what some even call a form of chronic illness PTSD. It certainly feels like it sometimes.

Uncertainty is an emotional battle

Living with the uncertainty of RA and chronic illness is an emotional battle you can never be prepared for other than to know something is coming eventually, and that’s what makes it most difficult – the looming storm. It’s the most mentally tough aspect of a chronic disease, and RA patients fight that battle every day. Right now, though, I have a nice, squarely made bed to get into. Talk soon.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • SueG
    2 weeks ago

    My thought and feelings for today. I fight everyday with all my autoimmune disorders. I currently have five and non of my medications are working sooo… from what I understand the next is infusions. Just to try to bring pain level down so my pain meds will work. Hopefully, if not then..it will continue to be a battle the rest of my life. But, praying about it.

  • Daniel Malito moderator author
    2 weeks ago

    @sueg Five is even more than me, so I can only imagine what you are going through. The pain meds only do so much, as we all know, but right now it’s about all I got. SO we cope, like we have to. At least you’re not alone. Not here. 🙂 Keep on keepin’ on, DPM

  • Lawrence 'rick' Phillips moderator
    2 weeks ago

    Sue;

    I hope you find some relief. I have used infusions for over 20 years and I prefer then to injections. I hope you come to find one that is suitable for you.

    Rick – moderator

  • DeGee
    2 weeks ago

    RA stinks. The pain and the constant waiting to see what will hurt next and how much it will hurt is so taxing. If you don’t continue to try to do things, it’s bad for you and if you do continue to try to do things it can also be bad for you.
    There’s no winning with RA.

  • Daniel Malito moderator author
    2 weeks ago

    @degee For sure, the hardest aspect mentally for any of us is the not knowing, I think. Never knowing if something you’re doing is going to cause a flare, or if something you’re NOT doing is making it worse. It’s crazy. Thanks for reading. Keep on keepin’ on, DPM

  • Lawrence 'rick' Phillips moderator
    2 weeks ago

    DeGee, I agree RA stinks. I am so sorry you are having a rough time. I hope you find relief soon and comfort.

    rick – moderator

  • SueG
    2 weeks ago

    You are so correct. I seems like a difficult battle everyday. If it’s not one thing it’s another. Each day is different and you don’t know what to expect next. I wish I can make this go away for myself and everyone that has it, but that is impossible.. So I am so sorry you are having this difficult time. I can only say that I involve myself with reading scripture and studying. It makes me feel better that I am not fighting this alone. May you find some relief.

  • mcadwell
    3 weeks ago

    a load-a Yodas!! – this made me laugh. Kudos to you-doze. lol

  • Daniel Malito moderator author
    2 weeks ago

    @mcadwell THANK YOU! I was particularly proud of that line myself, glad to see someone appreciated it as much as I did! Ha ha. 🙂 Thanks for reading. Keep on keepin’ on, DPM

  • Mary Sophia Hawks moderator
    3 weeks ago

    Daniel!
    Laughter and tears strike again! Emotional well-being kryptonite, and chronic illness PTSD were my favorites.
    I fight with myself every morning to get out of my warm comfortable bed.
    Here’s to coping!
    Mary Sophia

  • Daniel Malito moderator author
    2 weeks ago

    @c7mv96 Thank you for that, sometimes I never know if I went too far one way or t’other with the laughs. Glad you got a few poignant smiles from it. 🙂 Keep on keepin’ on, DPM

  • Cynthia Ventura moderator
    3 weeks ago

    So perfectly said. I’ve tried countless times to explain the emotional toll of not knowing. It’s sort of like Anticipatory Grief. We know the loss is coming we just don’t know exactly when or how. We think we’ve got it beat, nailed down because it’s a way of life for us. But when it hits which it always does we still feel blindsided. It’s a never ending no-win situation and as you said, it takes a heavy toll on our emotional and mental well being.

    Thanks DPM for making me smile despite it. Oh and btw, I want a load of Baby Yodas too! Sooo cute.

  • NPEOttawa
    4 weeks ago

    All so true. It’s the uncertainty of the future that bothers me the most. But not the very near future because I’m pretty certain I will wake up again tomorrow thinking, “not this again!” and wondering if I will ever wake up without pain again. Also, there is the uncertainty of what my day’s activities, whatever they are, will do to me. If I “insert any activity here” will it make me worse, better, or have no effect? There are just no rules to this ugly game.

  • Daniel Malito moderator author
    2 weeks ago

    @npeottawa You can many of us, I think. Not knowing what is around the next corner can be exciting, but it can also be scary when you can end up with the things we can end up with! Thanks for checking in. Keep on keepin’ on, DPM

  • Lawrence 'rick' Phillips moderator
    4 weeks ago

    The uncertainty? Yes that is a tough complication of chronic illness. I think that we understand how physical complications play out. But we also understand that we lose as much or more because of mental emotional stress. This is an important topic Daniel, thank you for raising it.

  • Daniel Malito moderator author
    2 weeks ago

    @lawrphil Rick I feel like the not knowing is sometimes the thing that takes the most toll on our mental faculties. Wondering if, when, or how, is like having your brain constantly on overdrive. It’s crazy. Thanks for reading. Keep on keepin’ on, DPM

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