Easier, But Not Easy

RA Guy Adventures of RA Guy 10 Comments

Okay, so I’ll admit up front that part of this blog post is going to be a little effed up, but I just gotta get this out.

Yesterday, on my way home from physical therapy, I realized I was at that point where even though I know my pain levels are once again reaching extreme levels, my mind has not yet fully registered this recent (exponential) uptick in pain and inflammation. I was in that weird rheumatoid arthritis limbo, where one leg stands firmly in the memories of my recent week-and-a-half string of relatively low-symptom days, while another leg plunges back into a place where I would never voluntarily go, but which years of experience have taught me that the sooner I begin to emotionally prepare for what the near future might have in store, the better off I will be.

So it really should come as no surprise that last night, I had one of my worst nightmares in a long time. (And it was only just last night, at 3:00 in the morning when I was gasping for breath, that I *finally* realized that I almost always have such nightmares right around times like this, when my mind is once again struggling to accept the reality of what is happening to my body.)

Before I share last night’s nightmare (in the hopes of preventing a repeat tonight), I guess I should first give a little bit of background. I’ve shared repeatedly that one of my favorite things to do is cook in the kitchen (so much so that my story in the Our Hands Can! photo book talks about my love for cooking). I am also a big fan of the Top Chef television show (although speaking of nightmares, I’m not a big fan of having to sit through all of the commercials for the other shows on Bravo TV–all of the constant shouting always makes my head hurt!)

Somewhere in my sleep last night, I started dreaming that I was a contestant on Top Chef. The effed up part? The guest judge was Adolf Hitler. (I kid you not.) Not only did he have a gun sitting on the table in front of him, but he was also in a really bad mood. Thus, while I slept, my anxiety about whether or not my hands would be able to perform accordingly was right around the level of a person who just drank a six-pack of Red Bulls. Somehow I managed to not only come up with my dish (silly, I know, but I remember this part of the dream with extreme detail: salmon with thinly slices hazelnuts and spinach cooked inside of a phyllo dough shell…does such a thing even exist? I don’t even know…buy hey, I was dreaming) but I also managed to cook it as well, despite the fact that my hands were in so much pain. (Little did I know at the time that this final detail was in fact, not a dream.)

The moment I served my dish and saw the nefarious judge smile as he tasted my dish–when in my dream I knew that I was indeed “safe”–I was jolted awake. A split-second later I flashed back to earlier in the afternoon, when I told myself that even though I was fully aware of what was going on with my body, I had yet to fully process it on the emotional level. Once I realized what had just happened (the nightmare, the flashback), I also realized that I was lying in the safety of my own bed, with some of the worst pain (not just in my hands, but in my whole body) that I’ve experienced in weeks, if not months.

And I lay there starting at the ceiling, amazed at the power of this disease. At it’s ability to not not only mess with one’s body, but also with one’s mind–no matter how familiar one might be with it. I was amazed at how quickly it can surge…so quickly that even though one is making a concerted effort to accept what is happening, one is still not always able to quite keep up with it.

But I was also amazed with my body’s–and most importantly, my mind’s–ability to cope with this reality. Sure, my mind may occasionally stumble and start to fall behind…but as soon as it gets its bearings (as it did in the wee hours of this morning), it swiftly moves me back into the lead, and confidently guides me through the challenges which are once again being dropped in my path.

I’ve gotten through the before, though, and I have no doubt that I will get through it again. It’s definitely not easy, but as I go into each new upsurge I now find myself determined to figure out a way to make things just a little bit easier.

Because to not do so, would mean to fall behind. I don’t run this race by choice, but while I’m at it, I’m going to run the best darn race I can.

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

Comments 10

  1. Elizabeth

    Thank goodness I’m not the only person who gets nightmares when I’m sick or in a lot of pain! Dreams have a lot to do about what our brain is trying to process through the day, so it’s good to try and write down repetitive dreams or themes of dreams so we know what’s bothering us.


  2. Tanya

    You must be a darn good cook if Hitler liked it. He strikes me as one who would have a finicky palette. I hope the nightmare is out of your system, your flare ends quickly and you have sweet dreams tonight!

  3. Kathy

    I commend you RA guy…..for speaking out and lifting us up through your “adventures”. We are not alone and will continue the race!! Thanks

  4. Kerri

    Your story has left me with tears and smiles at the same time. I am new to this RA thing and still reading and learning about what is going on with my body or what is to come. I am still in early stages and I have days when the pain is so intense I think I am going mad. I didn’t (or won’t) make the connection that my brain and the pain are connected. I am still somewhat in denial and am struggling with the acceptance that there are and will continue to be days that I am just not able to do the things I have always done like open a bottle or carry a grocery bag. I found you by accident on a friend’s Facebook page. I am glad that I did. Thank you for sharing your experiences.

  5. Cathy

    I really appreciate your post. Most of the time you seem so profoundly positive, which I admire. But if I’m honest sometimes it makes me feel inferior because I have not as yet been able to muster the mental positivity that you do. Reading this reminded me how hard you work at staying up beat in the face of adversity. I cheer you on, wish you the best, and keep being inspired to be in a better mindset. On a separate note, I say you should try the salmon phyllo recipe! I think you could be n to something. : )

  6. Irma

    There is nothing like hand pain is there? Your post touched me where I live. There was a time when I had to plan how to get out of bed to minimize the generalized pain that was my constant companion. I’ve improved quite a bit in the last few years, but my mind still goes back there sometimes. Almost like a warning signal, be prepared, be ready. RA to me is akin to being on a high wire, you have to concentrate on your footing at all times. Hope you feel better soon and for a long time.

  7. Sallie

    Yep me too, I have nightmares when my flares are worst and they are accompanied by the night sweats.

    I got my arm splints today, I’m sure my travels will be easier in 2013.

  8. abcsofra

    First, congrats on the 501C 🙂 Second, Ihave been so under the weather lately that even blogging has been out for me. I haven’t given up on it just yet but need to figure out how to live and blog at the same time. I know you know how difficult it can be when energies are low. And most importantly, nightmares are our way of trying to conquer our fears. You are blessed in the sense that you can remember your dreams. I am just sorry to read that you are having another flare from hell. (((HUGS)))

  9. Kris T

    You continue to give me reasons to keep going and keep fighting. So many people I know don’t understand how I feel, but you do, and that means so much to me. I enjoy your blog so much…the good, the bad, the humorous honesty. Thank you.

  10. Lene

    I know that was a nightmare, but I can’t help but commend your mind on its creativity (although quite sadistic creativity). Are you going to try to make that dish when your hands get better? It sounds yummy.

    You strength amazes me. I love the way you focus on knowing that you can handle this thing coming at you. If you need to vent, I’m here.

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