Losing touch with the reality of life with an Auto-Immune disorder??

Ok.  This is another post mostly about RA and not so much about food.  There will probably be a passing mention of food but no recipe.  You’ve been warned!

Tonight had me thinking, intensely, about how to balance.  This is definitely not the first time I’ve talked about balance.  It’s a category I choose from when tagging my blog and it gets chosen quite a bit.  I’ve even written several posts specifically about balance: Pain Relief and BalanceMore Balance and Dessert, and Summer is Over and Finding Beautiful.

The thing is, it’s a constant battle.  Constant.  Friday I had a mild incident that left me with a sore finger that required some x-rays but was found to be nothing.  I went out to dinner Friday night with Mark and some friends and had a wonderful time full of good food and laughter (while looking British because my pinkie was straight out!).  Saturday I did some shopping with another friend and felt like I had relaxed. I felt fine.  I thought I was fine.

That’s the thing.  I always think I’m fine.  It’s as if I’ve lost touch with what “fine” means.  Because “fine” means just moving on.  Doing what I have to do every day.

Don’t get me wrong.  There is a lot of laughter here.

I don’t want you to think my life is grim.  It’s not.  It’s pretty wonderful.  (And by the way this picture is from the summer and that shirt is gone.  Too big.  Yep.)

But I wonder if spending so much time hurting and feeling bad has made me completely lose touch with some parts of who I am and how I feel.  I had a massage today and it was completely fabulous.  But my friend the massage therapist would say things like “Does this hurt?” and I seriously wasn’t sure.  My first reaction was “No” and then when I thought about it and felt the joint or the area sometimes the answer would change to “Yes.”

When I had PT some months ago the very young Physical Therapist admitted that he thought, when he first met me, that I had worked on a farm my entire life.  Then he realized my hands were just swollen.  I can no longer wear my wedding rings (or any rings or bracelets for that matter) because they don’t fit properly and they hurt but I didn’t even realize that my hands were swollen.  What is wrong with this?

I started thinking about this today because I had made a commitment to help with a community project.  I agreed to distribute bags to the houses in my neighborhood for the annual food drive for a local shelter.  I did it 2 years ago as well.  Today we put bags on the doors in my neighborhood and next Saturday we go and collect any food anyone has put out.  Doesn’t sound too bad, right?  A little exercise and some good community service.

A dear friend always comes to help me and brings her teenage children.  She took one look at me and said “You look tired.”  It’s always a cold and windy day when we do this and by the time I had walked for 2 hours I was done.  DONE.  I came home and was ready for bed at 4:45.  I couldn’t cook dinner.  I had no energy left to do the laundry that is piling up.  After about 2 hours in bed I was ok and crawled out to eat dinner, clean the kitchen, and then write this post.

But how do I decide what I do and what I don’t do?  Since I feel substantially better in the summer do I only volunteer to help in the summer and cocoon inside in the fall and winter?  How do I honestly and properly monitor how I’m feeling before it is too late and I’ve hit the wall?

Truly I’m asking you.  How do I do it?  How do you do it?  Because I don’t seem to be great at this.  I want to live the most fulfilling life possible.  I want to have fun and laughter and spend time with my husband, my children, and my friends.  I want to be a part of my community and make a positive impact where I live.  But I don’t want to be falling asleep at 4:45 normally.

How do you prioritize?  How do you balance?

I wish there was a magical formula or some words I could say and wave my wand.  But if that was the case I don’t think I’d be worrying about my RA.

My world is pretty wonderful but it is reality.  I need to work on balance some more and I would love your comments, suggestions, and ideas.


4 responses to this post.

  1. I think this new reality (no matter how long we’ve had this condition) is a difficult one to swallow. Our mind wants us to be engaged in life the way we were meant to, yet our body limits us. All I can say is that is stinks and it infuriates me. I think the only answer is to keep on keeping on the best way we are able. To find the things that bring us joy and not let go, but to understand that we need to listen to our bodies and not feel defeated when we reach a limit. I know you are fortunate to be surrounded by a partner and children who nourish you when you can’t do it for yourself, and I think that is another important thing to remember. We can’t do it all, we can’t be perfect and if we need help we are allowed to receive it. I guess what I am trying to say is keep a balance, hahaha…but seriously, validating and being gentle to ourselves and taking it one moment at a time…((((hugs))))) Thank you for this heartfelt and honest posting, it really touched me!


  2. Posted by Lol on November 14, 2011 at 3:02 AM

    i seem to swing from trying to be sensible- so would only do food shelter thing in the summer some days- to wanting to not have to be sensible so would do food shelter thing regardless of the weather. I also have a constant fear of being made too sensible by RA and forgetting just to live. To be part of this exciting process called life. I too have no right answers- and I know I am frustrating to those around me who, can’t sometimes comprehend why when I am well I risk doing extreme things like running Tea & Toast from 1am-4am in the freezing cold or climbing a mountain. I think there isn’t an answer. But if you find one do share with me.

    Lol (22 had RA since 17)


  3. Well…I don’t have RA, but the concept of balance is the same, I think, whether or not you have RA. And the first rule for me is to stop and listen to myself. What am I REALLY thinking? What am I REALLY feeling? I may not like the answers, but I need to honor them. Now, I may decide to soldier on even if I don’t feel like it, because maybe I want to take a break just because I’m feeling lazy. (Not that there’s anything wrong with that!) Also, I don’t think there’s one formula that fits all. If we remember back a few years, my dad was dying (although we didn’t know it at the time), then my brother had three back surgeries, then my dad died, then my sister-in-law left my brother, then I was diagnosed with diabetes…all in the span of about six months. Yeah – there were days I didn’t want to get out of bed. Truly, there wasn’t much balance at that time; everything was pretty crappy. But I did what I could to get through it, and I did what I could to take care of myself as best I could. Nowadays, life is a lot calmer, and balance has a different meaning. Sure, this is a drastic example, but it’s real life, you know? Maintaining my balance for me this week might be a lot easier than maintaining my balance the week of Christmas, when there are crowds everywhere, it’s colder and darker, and family obligations call. It all goes back – to me, at least – to listening to myself. To being able to say no – or at least no, not right now. And don’t be afraid to cancel things when/if you need to. And always allow yourself to be supported by those who love you. As simple as it may seem, that’s the hardest one for me.


  4. Posted by Linda P. on November 16, 2011 at 6:17 PM

    I’m relatively new to this RA business, so I don’t have a good answer and am learning from everyone else. I’m learning that with RA you have to throw the whole unpredictability of the disease in with any efforts to create a balance. Last night, I went happily to a volunteer activity and felt strong. A couple of hours of clerical work later, my husband had to hold onto the bunched back of my blouse to keep me steady as we walked out of the building! I’m so glad no alcohol was being served or I would have been tagged as someone who was a bit tipsy! Then today, as I realized that I couldn’t easily rise from the bed because I couldn’t bend my leg from the hip joint, I wondered whether, in the pre-RA days, I would have considered this to be hard pain. Or, would I have not even realized the joint was hurting until I couldn’t easily move that joint, as is often true now? There’s no perspective by which to judge pain any longer. I think we need to give ourselves kudos for doing whatever we’re able to do each day.


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

%d bloggers like this: