Dreaming Reality

RA Guy Adventures of RA Guy 7 Comments

Last night, I dreamt that I was having dinner at someone’s house. I remember, in my dream, looking at my hands, and crying because I was in so much pain. Before I knew it, (in the real world) I was being shaken awake. I was in fact crying, and my hands were indeed experiencing intense pain. The routine nature of this episode is what strikes me the most: no bedside lamps were turned on, and very few words were exchanged. I just rolled over, and went back to sleep.

When I woke up, I was actually feeling pretty good. I went through most of the morning and afternoon without any major issues. I had a gut feeling that my episode during the night might be a sign of worse things to come…but with each hour that passed my nervousness started to subside, and my confidence continued to grow. When I jumped in a taxi at 3:30pm, I even started to think that I had made it through yet another day without any major flares.

Of course, we all know what happened next.

I had a major flare that was so strong and that came on so quickly, that I was barely able to walk when I stepped out of the taxi less than 10 minutes later. Now my left knee has always been the most affected joint in my body, so much so that during my visit with my rheumatologist last week he recommended that I start looking into the possibility of getting an arthroscopic cleaning. As such, my right knee has always come to the rescue, and has always (grudgingly) accepted the extra pounds whenever I have to distribute weight off my weak knee.

My right knee let me know today, though, that it’s not too happy with this situation. (Come to think of it, I can’t really blame my right knee for reacting in such a way.) Just a few steps away from my physical therapist’s office, it stopped responding to my mental commands to move.

As I walked into the door, I told myself that I was not going to cry. (I can’t even count all of the occasions when I have shown up with tears rolling down my cheeks.) Today was going to be different, I told myself. Even though I was obviously in pain, I would force a smile. I would do anything, but I wasn’t going to cry.

But the more I told myself not to cry, the more I needed to cry. And once again, as my tears flowed and as I silently sobbed, I was welcomed with gentle words and soft caresses. As I was eventually helped up onto the bed, I couldn’t help but feeling some sense of panic over the loss of use of my legs. (By this point, my left leg had joined in on the party as well. Even after laying down, I wasn’t able to move either. Electrical currents were eventually applied, but the muscles still would not respond. My legs were, in fact, *completely* down down for count.)

And right at that moment, as much as I’ve tried to not think such a thought for the past few years, I felt like a loser. And then I felt angry with myself for thinking such a thing. And then I decided that such thinking wasn’t helping any…so I just tried to stop thinking completely. But as I watched my physical therapist move my legs, and realized that were it not for my sense of vision I would have no idea they were even being moved…well, everything just seemed all too confusing, and I really didn’t know what to do.

I did know that panicking wasn’t going to help any. So I closed my eyes, and started taking deep breaths…within a few seconds I was so relaxed, that I actually dozed off.

I was woken up, exactly how long later I don’t know, by my partner walking into my PT room. At first I couldn’t figure out what he was doing there, but then I remembered calling him, in the few minutes after arriving at my physical therapist’s office. (I’m not even sure what I said when I called him, I just remember having an overwhelming need to let him know that I had safely made it into the office.)

I’m feeling better now, and I’m back in the comfort of my own bed. I’ve written previously about just how quickly these episodes can appear (a month or so ago, it happened when I was at the grocery store); today’s episode only emphasizes this reality. When I left my house, I was doing so well that I actually thought I’d be okay with just with my cane. I told myself, however, that I had better be safe, and ended up taking my crutches. And in the span of taxi ride during which I am barely able to listen to two or three songs on my iPod, I went from being able to walk with no problems, to barely being able to walk, to a few minutes later not being able to move my legs.

I don’t know how to close this post. I don’t have a good statement about another lesson learned. I just needed to get these words down, I think, to remind myself in the future that this episode actually took place. It may sometimes feel like a dream, like the one I had during the middle of the night…but just as I saw last night, even when it feels like I might be dreaming, what is happening to my body is all too real.

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

Comments 7

  1. Lori flores

    Its so strange how this disease affects differently in everyone. My flares take a while to appear. Its like they sneak up on me by getting a bit more painful each day so that I wont notice. Then one day boom, I realize that it got me. May your days be less painful and your courage be great.

  2. Wren

    What a truly terrifying experience, Guy. Of course you cried–who wouldn’t, faced with that kind of pain and sudden, total disability? I’m glad to read that you’re home now, resting and feeling better. When will you start your new course of meds? My fingers are crossed that they’ll help to ease this kind of awful flare for you, and and I’m sending all the warmth, care and peace your way that I can.

  3. Linda P.

    What a scary and demoralizing experience to have! How quickly we slip back into thinking we’re losers! It must be something endemic to the human nature. I’m so glad that you have others who can assure you that you’re far from a loser, whatever your physical capabilities and whatever your reaction to pain, and that we can remember that weather practice that Toni explained when we have times like these. We can’t wick away your pain but we can assure you that you’re not a loser and that others do care.

  4. Carla

    Oh my goodness. How terrifying for you. I can only hope your new treatment plan will help ease some of these episodes. Do take care.

  5. Lana

    I am sorry that you had this experience and I am so sorry that you are struggling so much. There is no lesson learned, if anything, it is okay to accept the reality of your situation. Pity parties are allowed. I always remind myself that the late Christopher Reeve allowed himself to have pity parties for at least ten minutes day – and he was Superman. You are allowed pity parties especially when things get pretty tough. You got through it and that is all that counts. Gentle (((hugs))) to you, my friend.

  6. KellyRH

    Just hearing your experience brings tears to my eyes, as I feel like I am within you during your struggles yesterday. Having had severe back problems earlier in life that took my legs out from under me at a moments notice and now battling severe pain in my ankles and a recent diagnosis of RA made it even easier for me to have been riding in your spot. Ugh! What a crazy day filled with ups and downs. Glad you made it to PT and used your breathing to relax your mind, spirit and body after all pain and stress took over. I need to remember to breath and try to find a way to relax and still my soul during the trying times. Thanks for being so candid and open with your readers. Gentle hugs and wishes for a good day today!

Leave a Reply

Your email address will not be published. Required fields are marked *