The Game Of Life

RA Guy Adventures of RA Guy 16 Comments

lifegameSoon after I was diagnosed with rheumatoid arthritis a few years ago, my world seemed to split into two spheres. Everything that I used to enjoy doing slowly seemed to fade away.

What used to be the present was now the past, and day by day “my life” became more and more distant. At a certain point, it became “my old life”. (Otherwise known as “my life before rheumatoid arthritis”.)

This was replaced by “my new life”. And what was “my new life”, you might ask? It was a world full of pain, disability, and depression. (This was definitely a case where newer did not mean better.) The more I struggled with my rheumatoid arthritis, the more my limitations seemed to grow and the less happy I became. It was a life in which my disease controlled everything. I was merely going along for the very unpleasant journey.

There was a solution, though — or so I thought. “If only I could do what I used to be able to do.” Then, everything would be better.

After a few years of constantly repeating the previous thought, I realized that something was not working. So, I came up with what I thought was a surefire solution: “I will go back to doing what I used to enjoy doing, as soon as my pain goes away.” (If you’ve already recognized the mistake in this sentence, give yourself an extra point!)

And after a few years of repeating version 2.0 of my mantra, I realized something new: the pain wasn’t going away. Like it or not, it was here to stay.

And I was suddenly confronted with an important decision. I could continue yearning for the life that I used to have…or, I could actually work on bringing it back. Sure, it wasn’t going to be exactly the same, as I would have to make some slight modifications here and there, but in its own certain way it would be new-and-improved.

I don’t remember precisely when, but sometime in the past two or three weeks I thought to myself “I have my life back”. As I had predicted, it’s not exactly my old life. It’s even better, though. It’s everything that I used to enjoy doing, combined with the new sense of self that has matured to include all aspects of my current life — even the rheumatoid arthritis.

It’s a world where I now know what a good “just push through it” is and a bad “just push through it” is. (Just one more of the continual contradictions that living with RA has bought into my life.) At the moment I can’t necessarily explain it in any more detail…it’s just something that feel.

During the past few days, I (finally) put my digital srl camera into manual mode, and climbed onto the roof of the oldest church in town to take photos. I took my longest walk in over a year. I listened to live music one night, and another night I went to a party to celebrate the coldest night of the year. I spent more time in the kitchen cooking. I went to a breakfast with my former yoga classmates…and the list goes on.

At the same time, I continued to deal with the symptoms of my rheumatoid arthritis. Just last night, my wrists flared all night long, waking me up at 2am and keeping my up until 5am. I got used to putting on my ankle braces every day. I worked really hard on trying to establish a more regular eating schedule, in order to assist my stomach as it adjusts to the increased doses of my medicines…and the list goes on.

My life is no longer something hiding in the past or waiting in the future. Once again, it’s in the present…and I am loving it, rheumatoid arthritis and all.

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

Comments 16

  1. Wren

    You’ve come such a long way, RA Guy. Your outlook and attitude, even as you continue to fight pain and disability daily, is positive, cool, mature and mindful — and these are things that not only help you along your journey through life, but also others who come in contact with you.

    Thanks for sharing your insights and your hard-won wisdom with us. And, hey! Will you share some of your photos from the top of the church? 😉

  2. Katie

    Great post–hang in there! I totally know what you mean about good “just push through it” and bad “just push through it”…it’s taken me about 2 years to figure out–sort of–I still have some days where I think I’ve done too much, but haven’t, and others where I think I haven’t pushed too far, but pay for it later…

  3. Post

    Good for you, RA Guy! A question , please. Could you please tell me how the braces help you? I get severe pain after being on my feet only a few minutes. Do you think braces would help with that? Thanks!

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  6. Carol

    Love your blog and am happy that you’re doing well. As with the grief time line, only when one with RA reaches the acceptance level of having the disease will there be the key emotional shift from having RA be the total focus of each and every day/month/year to the realization that you are the focus and that the RA just(unfortunately)comes along for the ride.

  7. Lana

    Good for you RA Guy for coming such a long way. It all comes down to attitude, doesn’t it?

    The split into spheres analogy is something I can relate to and understand. “I will go back to doing what I used to enjoy doing, as soon as my pain goes away.” LOL. I have said that once too many times before as well and the pain hasn’t stopped yet so yes, another of life’s lessons. Yes, I have my life back and not my old life either, but it is the life that I have learned to live with and everyday I am learning more. I, too, have learned to live in the present and to put the past behind me. And the future is something I perceive differently than I did in the past and the older I get. I think that once we understand that RA is a part of our lives, we learn to move forward or, in the alternative, we can dwell and be miserable. That is a choice that we have to make and come to terms with.

  8. Squirrel

    That’s awesome (well, not the having RA part but you know what I mean.)

    I hope you continue living life to the full and with such a great attitude I’m sure you will.

    I’m only 7 months into diagnosis so I’m in the doom and gloom stage and yes, the ‘when I feel better’ stage. But I’m sure with time I’ll get to where you are.

  9. Lene

    Congratulations! It’s such a hard slog to get there, but when you do, it’s such a quiet, little moment that rocks your world. So glad you found it.

  10. RA Guy's Mom

    Hi, Son! Love this attitude that’s coming through in your writing!!–good for you!–so good to hear you’re enjoying your life…rheumatoid and all. Can’t tell you how happy it makes me to be reading this…a few times this past week I’ve had pain in my hands so bad–and right away my thoughts go to you and the pain the you express experiencing–my pain lasts awhile then goes away (I’m so grateful for that)…don’t know what I would do if it lasted for hours (like yours)–I find myself wonderful if I could manage/endure? Love you lots, son….Mom

  11. Gelene

    I think you’re fantastic! You’re attitude IS totally infectious, as another poster said. I’m hanging out in the space between a plethora of come and go symptoms and a diagnosis. But when my doctor said they were testing for RA I looked it up and found your blog. And I am so, so glad I did. Because regardless of what it is I’ve ‘got’, your outlook has already taught me a lot about how to keep a good attitude. Thanks!! And all the best wishes for you. Looking forward to more pics from your SLR too!

  12. Tula

    I sometimes try to explain to people the difference between “good pain”, “bad pain”, and “normal pain”, but they just don’t get it. Keep up the positive attitude!

  13. Richard

    With all the ups and downs you give me hope. It has been about two years since I noticed I had given up all my hobbies, and one year since I had to quit work due to RA, I have just had my third infusion drug change since nothing has worked so far, and now after the third ifusion of Actemra I am close to hitting bottom. You know how it is you have a good day and think its finally working then overdue it and bam back to using a walker in the morning. I continue to try and do as much as I can but not more than I should and hope to get to where you are. I was feeling very down tonight and reading your post has helped I am sure you know a little hope goes a long way.
    Thank You

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