The Incredible Shrinking World

Shrinking world 

This painting, by artist Shia Moan, is called Shrinking World.  It was exhibited as part of a show called Windows On Pain.  In this article, the artist is quoted as saying the following:

“People who live with chronic pain deal very literally with shrinking options in their lives. If and how they can work, exercise, socialise, travel. Usual activities are affected, all subjected to scrutiny: what is possible, what is not? They also speak frequently about not being able to communicate their pain, wearing a mask.”

When I was looking for a picture to go along with what I wanted to write today, I was amazed to find this painting, and that quote. It was exactly what I was trying to express. I literally entered “shrinking world” into a Google images search, knowing nothing about this painting, and up it popped.

I am bored.  Really bored.  So bored that I’ve been neglecting this blog, simply because I have nothing to say.  And the reason I have nothing to say is that my world is shrinking.

This is something I’ve known for awhile, but I became very aware of it a few days ago, when I was on the phone with one of my friends.  I called her because we hadn’t spoken in awhile, and I wanted to know what she’s been up to.  So I listened to her talk for a long time, enjoying her stories about her children and her activities.  Then she asked me, “And what’s new with you?”

Well, what could I say?  Another Remicade infusion, more blood tests, more doctor and physical therapy visits… besides that, nothing much.  I haven’t been anywhere interesting, haven’t been doing anything exciting.  Frankly, I haven’t been doing much of anything at all.  And that realization depressed the heck out of me.

Chronic illness is BORING.  Sure, there are exciting and dramatic moments, like when something unusual pops up on a blood test or a major flare hits.  (Of course, this is a kind of excitement I’d rather do without…)  But most of the time, at least for me, it’s just not that interesting.  Just a lot of exhaustion, lying around, canceling plans, not having enough energy to even think of something new to do.  It gets depressing.  And there’s only so much you can say about it to your friends.  “I’m still sick”  just isn’t that interesting as a conversational topic.

So my world is shrinking.  I don’t want it to.  I keep thinking that it doesn’t have to be this way – while I’m lying on the couch, I could be learning a new language, or listening to great music, or SOMETHING.  But I tend not to do these things.  I don’t know why.

I’m also starting to develop some habits that I don’t like.  One pattern I’ve noticed lately is that whenever I’m getting ready to leave the house, I always say to my husband, “I don’t want to go.”  It doesn’t matter where I’m going – work, a guitar lesson, a party.  Somehow, all the time I’ve spent by myself on the couch has created a sort of social anxiety in me.   It just seems extra-hard to pull myself together, go out and be with people.  When I do go out, it’s a mixed bag.  Every once in awhile, I’m sorry I went – sometimes it means that I’ve pushed myself too hard that day, or that week, and I end up paying for it.  But most of the time, I end up glad I did.  The world seems a little bigger and a little brighter after I’ve connected with people.

Sometimes there’s another kind of backlash.  I went out last week to watch some friends dance in a show.  I used to dance with them.  I had a really good time and really got into the show.  I was able to forget all about my RA for a little while, and started thinking, “Maybe I could do that again…”  This is a dangerous path for me.  The truth is, no, I can’t.  This type of dance is too rigorous, too joint-jarring, and my doctor has said NO quite clearly.  So this kind of thinking feeds my denial, sets me back.  I need to be out in the world, but that doesn’t mean I can go back to doing everything I used to do exactly as I used to do it.

I need to make my world bigger, or at least minimize the shrinkage.  There is too much sameness to my days.

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16 Comments

  1. RA Guy says:

    Just by sharing your thoughts and feelings here on your blog, you are opening up your world to help others as well. Wishing you the best.

  2. Laurie says:

    It’s funny, I was just sending a message to a friend, saying, Hey, can’t get together for dinner unless it’s somewhere I can park – knowing that the dinner might not happen because of that, but I just can’t walk very far right now because my feet start hurting too much.

    All to say, I understand where you’re coming from. I hope it does get better for you, and that you keep getting out to things you enjoy, like the dance show. And what languages are you interested in learning? I know some German, Italian and French. I could leave comments when I had them in any of those, then you could translate them! Would be good practice for you + me. Fun!

  3. admin says:

    Laurie – I used to speak pretty decent Italian. I also took one semester of French and about a year of German, but millions of years ago! Feel free to leave comments in any of these languages – that would be fun! :-)

  4. Cathy says:

    I can really relate to this. It seems like I am “in waiting” to be able to do the things I love. I know I will either do the things I love again or I will find new things that I love but right now is a transition time. I think you will too. I think bordeom can be good. It is the time that our brain relaxes and allows new thoughts to come to us.

  5. Lisa H says:

    Hello! Thanks for sharing. I know just what you mean. I always have these big plans for my downtime, but then once I get there, I just lie there doing nothing instead. My window to the world is smaller every time I look. I think sometimes that it’s just the internet that keeps me going. I hope things start looking up for you again soon.

  6. Wren says:

    I understand what you’re going through right now. We need time to readjust to a life that’s changed by this disease; it absolutely brings about changes that we don’t like and that as human beings, we struggle against. Physical pain, illness and disability naturally affects our minds as well as our bodies.

    That said, it’s fortunate that in these times there are resources for those of us who struggle with depression along with the physical disease. There may be free or inexpensive programs available through your city or county you might be able to take advantage of to help you through this dark time; even a short art class or something like tai chi, which could help with flexibility and mindfulness, as well as give you an opportunity to meet others each week and get you away from the house. There might even be support groups you’re not aware of that could help.

    If money isn’t an issue, perhaps talking with a therapist would be helpful. They can often frame problems and issues in a new way that can help you break through the blues.

    My heart goes out to you. RA Guy is right that talking to others through your blog can open windows and perhaps doors. And most of us who blog about RA welcome emails, too. Sometimes just talking to someone who understands how you feel can be a big help.

    Be kind to yourself. Get outside as much as you can manage, even when you don’t much feel like it (it sounds like you already do that when you can); just a change of scenery, pain included, can lighten your heart. Spring is coming; the longer days and increased sunshine can only be good. And remember that you have people out here in the world who understand and care.

  7. Laurie says:

    Va bene! Adesso parliamo un po d’Italiano perche é l’ultima lingua che ho studiato. Hai un grande fine settimana!

    I’m sure that’ not all exactly perfect, but that’s not the point, lol! :)

  8. RA SB says:

    Rem-

    OMG – This post brought me to tears. I’ve been walking around feeling the EXACT same way lately.

    Last week, I forced myself to start tanning. It seems like that would be a relaxing activity, but even that took some effort on my part…But I thought, if I start with just this small thing, like tanning every other day for 10 minutes…maybe the combined activity and added vitamin D will jolt me into doing even more. But like you, I liked it so much that I went down that dangerous path, thinking, “Maybe I could start working again.”

    But honestly – 10 minutes in a tanning bed does NOT equal 8 hours/day at work…

    Sigh… I just really don’t know how we’re expected to stay motivated, between the fatigue an pain and knowledge that we really can’t keep up with normal activities for very long…It really is just TOO much.

    But thanks for writing…at least I have the sense that I’m not alone now!!!

    – RA SB

  9. Rem:
    I got together with my girlfriends not too long ago. We were laughing that we used to talk about men and fashion and now all we talk about are doctors and health. There is no question that RA changes our lives. And while it may not be better, it can be good, just different — especially with the advances of technology. For example, I can download the latest fiction to my Kindle without having to make effort to drive to the bookstore and browse for hours. Do I like browsing bookstores for hours? Yes. Love it. But some days it’s just not possible.
    You’re a fabulously interesting, talented, intelligent person as demonstrated by your thoughtful, well-written blog. Those attributes will not sit still for long. I have faith that they will lead you in new directions that will again bring breadth and depth to your world, even if it’s more physically limited than it was. All the best – Carla

  10. admin says:

    Grazie, Laurie! Perché hai studiato tutte queste lingue? (It’s been awhile for me, so I’m not sure if that’s right!)

  11. admin says:

    Thanks, Carla!

  12. admin says:

    Thanks, Wren! I’m considering talking to a therapist, since I’ve been pretty down lately. I have one I like – I’ve seen her before, but it’s been awhile. I am taking a Tai Chi class as well as water exercise classes, but I may just need a little extra something right now.

  13. Ciao Rem,

    Ho studiato tutte queste lingue perché il mio padre è italiano. Meine Mutter ist deutsch. Et je suis Canadienne. How’s that for a mishmash of languages!

  14. Kelli Ma says:

    I have read a few different blogs on RA, but yours put words to so many feelings I have been having. I felt like I was reading my thoughts. It was amazing. I read several parts of it to my husband just now (through tears) and I wanted you to know how much it has helped me to know that someone else understands the denial, the reluctance to accept the limitations (dancing, using handicap placard, talking to friends about current situation, etc.). I am a thirty something mother of four young boys with an autoimmune disease the Dr.s can’t figure out. It has been a year and a half now that I have put up with the pain. I am frightened out of my mind to take any drugs and I am still nursing my littlest one. But I have reached the point that being on my feet is almost unbearable and permanent damage has occurred in joints on my hands and feet. My rheumatologist recently told me “no more messing around”. I am scared. Thank you for being honest, for taking the time to express yourself and share your life stories. You have been an incredible blessing.

  15. Hi there. Thanks for leaving a post on my blog. I popped over to see yours and found this very appropriate post. My husband and I were just talking about this today. I was saying that I feel frustrated by this again after having had a 3 month remission. It almost feels like being diagnosed all over again and having to figure out what I can and can’t do. Frustrating! Thankfully, he is very understanding – and there are folks like you that I can read about and feel connected to! Together, hopefully we can open up each others worlds – even if it is in a virtual sense.

  16. Ronda says:

    I have been so frustrated lately with the same feelings you are through. It is so nice to know I’m not alone.

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