Knock Me Down, Pick Me Up

RA Guy Adventures of RA Guy 15 Comments

After a couple of relatively symptom-free weeks, my rhuematoid arthritis is once again knocking me down. Today I didn’t get out of bed until around 1:00 p.m. Even then, I did’t much get past first gear…although I am proud to say that even as my day passed by in slow-motion, I was able to make it into the kitchen to cook dinner.

I find it interesting how nowadays, whenenever my RA starts to get the upperhand, I don’t have many of the thoughts that used to be have for so many years. No telling myself that I need to be doing something other than resting (or sleeping) in bed. No sadness about the fact that I live with the pain and disability on a daily basis. No fear about what might happen if things continue to get “worse.” Most importantly, no self-blame and no doubt; no wondering what I might have done to “cause” this flare. (I’ve gotten really good with the pacing and with not pushing myself too hard.)

This disease is hard enough, without my being hard on myself emotionally. So when my RA knocks me down, without so much as a second thought I start doing what I need to do in order to pick myself back up…and even though some people may find sadness (I know I used to) in the repetitive nature of what can often seem to be a “two steps forward one step back” type of life (or “one step forward two steps back,” when things are really critical), I’ve learned to appreciate even the beauty of these moments. First, because I’ve done it before and I know I can do it again. Second, because even though it may seem to be the same routine, each time around I make it a point to learn something new.

When I am stuck in bed, unable to even roll over, I no longer think about how much of my day I have “lost.” Even in this situation, whether I am sleeping or lost in my thoughts as my body deals with its temporary paralysis, I am not losing out on life…because this is my life.

Even though I will often say that I am having a good” day, I rarely ever try to tell myself that I am having a bad day. Now this isn’t to say that on more days than not, as was the case this morning, I awake to a body that is not working (in the traditional sense)…but I’ve learned that if, during these early hours of the day, I label it as a bad”day, then it will, well, stay bad all day long.

Because when I label my day as being bad, doing so leaves me feeling powerless in so many way. It will be just another bad day, and I will indeed feel like I am losing out on life.

But if I say that it is a challenging or a rough day, then I feel capable of doing something to change–as much as possible–the situation that I find myself in at any given moment. This allows me to accomplish what I pledged here on my blog when I first started writing so many years ago, which was that I would try to make my emotional well-being less dependent upon the absence or presence of pain in my body. (And which, I am proud to say, I have been quite successful in accomplishing, even as my rheumatoid arthritis continues to progress.)

When it comes to living with chronic pain, if I wait until the pain goes away before I permit myself to have a “good” day, then I might be waiting forever.

Which is why, no matter how much pain I’m in, no matter how much I am unable to move my body–without denying in any way, physically or emotionally, what is going on–I remind myself of two things:

1. This is my life.
2. Today is a good day.

Yes, I continue to get knocked down…I have no doubt though, of my ability to continue to pick myself back up.

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

Comments 15

  1. Tabatha Loving-Yager

    Thank you!

    I needed to hear this as I have recently been having “challenging” days, ever since I over did it preparing Thanksgiving Dinner. And no, I still haven’t fully recovered. Which is unusual as the last couple years it hasn’t taken me nearly this long to get back on my feet.

    But it is always great to hear your take on things and how you have learned over the past few years to deal with your challenges from this condition. I have only had it 5 years, but even though I am on a biologic, I still feel it progressing. I haven’t seen my Rheumy since July and I am afraid of what our next appointment might entail, considering I can’t take MTX due to liver reactions. I don’t know if I will be going to infusions next or what, but I do know that what I am doing now isn’t helping as well as it should be.

    But again, thank you for your wonderful insight which gives me hope and new dealing techniques, which are both priceless.

  2. Adrienne

    I am so sorry you are not feeling great. I like your mantra. I also like Grant me the serenity to accept the things I cannot change, The courage to change the things I can, And the wisdom to know the difference. I know it is the AA prayer but it also works with chronic diseases. Today I can’t do something, well maybe tomorrow I can, but don’t push it today because if I do I may not be able to do anything for three days. I hope you feel better soon.

  3. Tanya

    Attitude is everything with coping with this disease. Glad you are keeping a positive attitude and inspiring others todo the same. I am curious, what s your favorite dish to cook? I love to cook as well and many times my hands just don’t cooperate. I’ve learned to adapt but always looking for good recipes! Thinking of you and hoping tomorrow is a great day!

  4. JoJo

    Thank you for these wonderfully inspirational words. This is still relatively new to me and I am still awaiting official diagnosis whilst just entering my 6th week off work. I too find I can’t rise much before lunchtime and so far I have lamenting the ‘loss’ of the day. But I am slowly beginning to accept that simply it is not lost. It just starts a little later than everyone else’s does.That said, I was just lying here in bed trying to summon the energy to get out when I checked my Twitter feed and there you were with your words of wisdom and experience. Thank you Superhero.

  5. Patty Molinaro

    I love this “thought for the day.” You inspire me to have a good day. I love the idea of “challenging” myself to make it a good day, and love being able to read a new book while I’m in bed for the day. I also love my bed and being in my bedroom. I’ve worked over the years to make it a place to encourage me to feel good. I have photos of people who inspire me and a lovely framed “Amazing Grace” above the head of my bed, given to me by my sister. I am grateful for your support and the encouragement you give us all.

  6. Ruth Adonri

    Your site was recommended to me and the first thing I read is so inspirational and mirrors so many of the thoughts I have been having. I was only diagnosed 6 weeks ago and thought I could continue working! Just made things worse and so I am now off work and it is hard but your positivity and no wasted days, well it is great and thank you so much.

  7. Lene

    When I first listened to Mindfulness for Beginners, I was stunned speechless and almost brought to tears by 12 little words. Jon Kabat-Zinn mentioned how he starts out mindfulness stress reduction classes by telling the attendees “There is more right with you than there is wrong with you.” Powerful words. When you days present extra challenges, it can be hard to remember. The more you practice looking at your life through a different perspective, the easier it gets.

    Thanks for the reminder. I needed to hear this today.

  8. Linda

    Thanks for the wise words! I was diagnosed about a year ago and circumstances have pushed me to push on and
    Do more. This week I have been forced to take stress leave the doctor has given me two months! I know I have been pushing myself too hard for my entire life, I am ready to smell the roses and have been trying to find a way to do so since my seven year old was born. I think as I seem to be a bit of a slow learner in the take it easy stakes that Ra is the opportunity to get the balance right or else!
    I am so glad I stumbled accross your blog when I was looking for aromathearpy recipies for ra when this flare finally stopped me in my tracks!

  9. Annie

    Thanks for a great post. You are so right about not labeling the days as “bad”. And about being gentle with yourself on those challenging days. This is the hand we have been dealt and we must play it. Some days I can’t accomplish much beyond feeding myself, but like you I am think of the positive. There is so much more positive than negative, in spite of the pain. Thanks again.

  10. Sandra

    hi just stumbled on ur site.haven’t read much but u have brought tears to my eyes. after 10 yrs of pain ( I’m now 29) after test after test coming back clear, they r now sending me to a rheumatology department.its the only thing that makes sense now.its great to have support from this page n inspiration:) will read more later, off 2 wrk in the middle of a flare up. had to come home yesterday. wish me luck x

  11. julia

    Your attitude living with RA is uplifting to those of us who understand the pain. My lifestyle changed 6 months ago when I was diagnosed with RA. I’m 75 years old and was living a wonderful life of retirement enjoying gardening, painting, and my children and grandchildren. Now I unable to do most of my activities. The thing I hate most is not being able to keep my grandchildren. I can’t babysit them nor can I take them on special trips. My son brought my two year old granddaughter over for a visit. We were sitting on the sofa and I tried to stand up. I told her it was hard for grandmother to stand up. She stood up without saying a word and put her little palm up to help. I almost cried! It hard to except, but that’s life…

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