The Neverending Story

Reach the stars,
And fly a fantasy,
Dream a dream,
And what you see will be.
-Theme song from “The Neverending Story”.

The Neverending Story 1997 EditionRhuematoid Arthritis Guy has made some great strides during the past couple of months when it comes to accepting the chronic nature of his rheumatoid arthritis.

Even though I have already lived with RA for many years, I sometimes feel like I have only just begun. I think this is partly related to the denial that I continued to cling onto, up until only recently. (As I was written before, it is easy to believe that “after this flare” things will get better and the pain will finally go away.)

Connecting with other people who have lived with rheumatoid arthritis for decades has played a huge role in my acceptance. I am no longer able to hide behind my denial.

I must admit that accepting the chronic nature of rheumatoid arthritis wasn’t easy – it felt like a huge slap in the face. But, it was a necessary, and healing, step as I move forward in my journey with rheumatoid arthritis.

In a certain way, I have gotten quite used to the constant pain and stiffness. During the day, as I go about my activities, I recognize that these symptoms are there – but I do my best to not focus in on them, and instead concentrate on living a life that is as fulfilling as possible. At the same time, however, I have learned to respect these signals – and not push myself too far.

So for the moment, I have learned to live with the chronic pain and inflammation.

I just haven’t learned how to wake up to it.

During the past few days I have come to realize that whenever I wake up (either during the night, or to get out of bed in the morning, and even after midday naps), there is always one thought on my mind, and it’s always the same.

“Won’t this ever go away???”

During the day I have learned to work my rheumatoid arthritis into my life. When I wake up, thought, it’s there front and center. I still haven’t gotten used to this part. To be honest, it continues to be a startling jolt every time I leave my sleep and regain consciousness of my body.

A few months ago, I had an extended period where I was waking up without knowing who I was. It got so bad, that at times I didn’t even know where I was. My mind was an absolute blank, and more than once I was left completely shaken as I scanned the room trying to figure out who and where I was. The longest episodes lasted between 5-10 minutes.

(I was not on any medications at the time, so these lapses could not be blamed on medicinal side-effects.)

As I become more aware of the shock that waking up continues to have on my mind and body, I start to think that I just might have been trying to intentionally forget that I had rheumatoid arthritis when I woke up…but my mind didn’t stop just at that detail…it went on to forget everything else as well.

It “worked” in an odd sort of way, because during those initial few minutes when I was experiencing complete confusion, my physical pain did not register at all.

But as my memory came back, so did my pain.

As I try to move forward with various stages of acceptance, I focus in on a thought that often crosses my mind as I am falling asleep. This  thought  is on one hand so very subtle (in terms of my awareness that I am thinking such a thought) and on the other hand so very strong (in terms of the actual impact it has been having on me).

“The pain is going to be so bad when I wake up.”

(In a way this is true, with morning stiffness and all…but I don’t think this is the most healthy thought to carry into my sleep.)

Just like I have made a conscious effort to incorporate chronic pain into my day, I now know that I also need to incorporate it into the moment when I wake up – the start of my day. If something is never going to end, I might as well go ahead and make it a part of my life – whether I am awake or asleep.

(As as we all know, this is easier said than done. But, our biggest accomplishments often come when we put our mind to something – before we’ve even done what we’ve set forth to do…)

If you haven’t heard the theme song to The Neverending Story for a while (like in the last decade or two, as was my case), take a listen below. Don’t forget: “Dream a dream…and what you see will be.”

[YouTube Video: The Neverending Story, with lyrics.]

(Ahhh…there’s nothing like a flashback to the 80′s, is there!)

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

4 Comments
4 comments
  1. denise says:

    Good going Stan, I couldn’t agree more. The hardest part is knowing in the morning it starts all over. But we get through it. Thank God for our meds. Thanks for the blog I look forward to it. Have a great day.

  2. Millicent says:

    It’s been my experience that coming to consciousness first thing in the morning is a time before reality sets in for the day & we can just be without worry. It only lasts a minute before the crush of what’s going on really hits, but at least there is that minute.

  3. Kali says:

    Ugh, I know that wake-up feeling. Almost every morning, my first thought is ‘stupid back’. The worst of my pain is in my back, so that’s where it registers first that yup, I’m back to this whole living in pain thing.

    I loved the never ending story! It was one of my favorite movies as a kid.

  4. witchlinblue says:

    I’m not sure you can ever get use to that rude awakening first thing upon awakening. I usually lie there wishing I could be back in my dream and try hard to get there but of course that doesn’t work. Im not sure either that it is something that can ever be accepted, I mean the first thought when waking. Its rude and intrusive and I miss the days I could wake up and smile for the new day. I’m also fairly sure that healthy people could never understand how that has been taken away from us.
    I was told once by a doctor that the middle of the night is the worst pain for RA patients, probably because our bodies have been in one position for quite a while and it hurts to suddenly have to move. The very worse is that the older we get, the more likely it is that we will have to get up and pee in the middle of the night, for some this happens a few times.
    I think if I had a wish, it wouldn’t be for money, it would be to wake up on the right side of the bed for once, wake up with a smile. I guess those days are long gone, and accepting that, well, I would rather not. :)

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