Finding Peace In The Pain

RA Guy Adventures of RA Guy 26 Comments

One of the most accommodating changes that I’ve made over the past year has been not making any commitments before 12 noon. If I’m doing fine, this means that I have a little more free time at the start of my day. During times like now, though, when moving in the morning lies somewhere between ‘very difficult’ and ‘just plain impossible,’ this means that I have one less item to stress out about, when I eventually get started on a rough day.

This morning, I woke up slightly earlier than I would have normally woken up (that is, if “early” can even be applied to 11:30 a.m.), had I let my sleep run its course. Not that I’m complaining, though. You see, every Sunday I am served brunch in bed. (I told you I wasn’t complaining!) As I woke up, and stuffed some pillows behind me in order to prop myself up into a semi-upright position, the first thing I noticed was how tired I was…and I’m not talking about ‘sleepy’ tired. Instead, I’m referring to an all-out, below-zero, tired. Oh, and the pain…I started to wonder if I’d even have the energy and the strength to feed myself.

Once I saw the pile of food in front of me, however, I somehow managed to find a few precious reserves of movement. (I guess that having eggs, potatoes, sausages, pancakes, a fruit smoothie, and a cup of coffee within arm’s reach can be a very motivating factor.) I made a beeline for the fruit juice: freshly blended papaya juice. Even when my energy levels are at their lowest, a big glass of papaya juice always seems to give me a noticeable power boost. After drinking two large glasses, though, I still didn’t feel a thing. That’s when I knew that I had best stay in bed and rest as long as possible, even if it meant not moving until mid-afternoon. (Which is exactly what happened.)

During those few hours, between eating brunch and finally waking up at 2:30 p.m., I didn’t even have enough energy to stay awake. I quickly drifted back to sleep. (An interesting side note: I’ve acclimated by now, as evidenced by the high hemoglobin concentration levels in all of my blood tests, but I live at such a high altitude, that the body’s digestive process actually slows down. First-time visitors are often stopped in their tracks–literally–after eating large meals, as their bodies struggle to power normal body functions, in addition to digestion.)

And as I slept, I sensed the pain. Yes, I was completely asleep…but just because I’m asleep doesn’t mean that the pain signals being sent to my brain come to a halt. So as I dreamed, I was just a little more aware of everything that was happening than might normally be usual. And in my dreams, I was at yoga class. Surprising, because I haven’t practiced yoga for quite a while now…but not too surprising, because I recently received an email from my former instructor. In this message, right after the greetings for the new year, she shared how she’s switched from practicing power yoga to practicing silent meditation on a regular basis.

And this, I guess, is where all of the pieces came together. (As I said, I’ve always been more aware of my dreams than most people…even more so when I’m sleeping with extreme pain.) In my dream, as I rolled out my yoga mat, I looked up at my instructor and told her that I was no longer able to participate in class, but that I was just going to observe. Was this okay? She told me that she understood…and then, she told me: “Even if it seems like the trees are being madly blown around by very strong winds, don’t ever forget: your little nest will always be at peace.”

And even though she has never told me such a thing, is sounds exactly like something that she would say. But, without getting too deep into the meaning of everything, I guess that I was really speaking to myself. And this is how, on one of my most challenging days in months, I woke up with a smile on my face, and with one tear running down my cheek.

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

Comments 26

  1. Maria

    wow – I loved this post, but the part about ‘no commitments before noon’ nearly made me cry in jealousy – I am struggling so badly right now and no way out

  2. Barbara

    Thank you for this entry–it really helped. I’m going through a super-low energy time right now myself–not to mention having spent 4 days this week in the hospital with problems around my other health issues (ileostomy as the end result of ulcerative colitis). I really like your idea of not committing to anything before noon, just in case, and I think I’m going to adopt it, too. 🙂

  3. Cherryl Robbins

    I’m sorry ur having a bad day. But breakfast in bed is awesome.. I’m jealous. Ur in my prayers. 🙂

  4. Kim

    Awesome.. This comes just at the right time, I’ve been able to find peace and make peace with this disease… It’s made all the difference in my life

  5. Jerry LaBathe

    The sermon at Church last night was about letting go of our worries. But since by nature I am not worried I applied it to my situation. Last week I let go of my RA and the pain, I gave it to the Lord! Then the sermon Saturday and I thanked him for what he does. Anyhow what got me to the point of giving it up was your post on welcoming the pain. I want to thank you and tell you to keep it up you are an inspiration to us all. I hope and pray that you feel better my friend!

  6. Alice Adams

    I can relate! I use to be an early morning person but in the last few years it takes me about 2 hours to get moving. I miss those 6 AM morning workouts so much! I still haven’t made total peace with this disease but I keep trying. I hope you have a great day tom and your pain is under control! I love your posts! Sometimes it’s like you are reading my mind. Keep writing!

  7. Gillian Pidler

    What a fantastic post and very apt as today was the first day since the end of last year, probably Nov, that I got out my yoga mat! However instead of the hours practice I’d usually enjoy I did just half an hour of very gentle Shanti as both of my knees are screaming at me this morning.

    Since retiring 2 years ago at the grand age of 40, & since my youngest started school right behind our house, I have also adopted the ‘keep the mornings slow’ approach. Some mornings I accomplish more than others but every morning (unless I have an arranged day out or earlier apt), I take my shower and then sit for a good couple of hours while my pills kick in, I drink coffee & do my face and hair. Having this quiet time allows me to assess how my body is likely to behave on any given day and to decide what jobs I’ll be able to acheive. I hope that today is a better day pain wise RA Guy.

  8. Tammie

    I believe you are on the right track with giving yourself the gift of being intentional of a slow morning.
    I gave myself this gift last year. I have found it the best thing I could have done.
    Thank you for sharing your view of what RA is like!

  9. Terri Lynn

    Great post!!! I love your way of dealing with this unpredictable disease. I adapted the not before noon approach about six months ago and it works well for me. I have never been a good morning person and any appointments etc. are always made for the afternoons. This takes alot of pressure off me and allows me to gradually ease into the day. Many days I gladly go back to sleep. My body seems to need alot of sleep this winter so I am finally giving in and allowing it to happen. Thanks for sharing!

  10. Wayney

    The no commitments before noon is a good thing for many people with RA, unless they’re the rare case when their energy level is highest in the morning. I have NEVER been a morning person and a big reason why is my JRA. Mornings were so tough on me during my school years. In fact, I did go in late and if I recall correctly, it was in my IEP about it not being counted against me. It may not have been and the school was just really understanding knowing my situation. One of the benefits of a small school. I know we had things in middle and high school about giving me extra time between classes w/o being counted tardy and then me not participating in gym class.

    I have always tried keeping my appts late in the day. Either first thing after lunch, or the latest available appt. But I did that more for my mental clarity than my physical state being better. Although it was a great help on those days when morning stiffness went beyond the morning hours. I am more alert of an afternoon in general. There are rare days that I am not. But, I have always been a night person and have required little sleep, even as a baby my mom says I slept very little as compared to my siblings. Now, when a major flare hits, I go between sleeping 12-16 hrs and insomnia. I recently was awake 36 hrs after only about 4 hrs of sleep.
    Sadly, with a school age child, sometimes the no commitments before noon requires an exception. Schools like their students in early! I wish many times when I have to wake up early due to my son’s school activities, that I home-schooled him! He also would like that at times too since like both of his parents, he is a night person. When I was pregnant even, he was more active in the middle of the night. When he is not in school, he sometimes doesn’t go to sleep until the wee hours of the morning. It’s not like I am going to medicate a 9 yr old without a doc’s consent.

    Thank you for the great idea RA Guy!

  11. Christina

    I do the same thing with mornings now… before RA, just a year ago, I used to be up at 5:30 a.m. every day!

    Loved this dream post. Last night I suddenly found myself on a horse in my dreams. I was scared (I’ve only ridden a few times in my life), and I remember thinking, “What about my RA? How can I ride a horse?” Then I realized that being on a horse means being off my feet, and I could totally do it. Soon we were bounding around the fantastic Icelandic landscape… I remember my horse so clearly, and how he just flew across a glacial river and I felt no fear at all.

    I just ordered a mobility scooter, so that I can get out in nature again until my RA improves enough that I can walk more than a block at a time. So I think this was a dream about getting the scooter — which of course I resisted for a long time.

    Of course, an Icelandic horse is way more beautiful than a mobility scooter.

    Thanks for your dream image. I like the nest metaphor. In fact, just remembered finding a nest in my dream, a nest high in a tree…

  12. Lyn Burnstine

    And to Maria and Wayney, especially. It will get easier. I didn’t have JRA, but I did raise 3 kids while dealing with RA for 55 years, and at times, it was so difficult. I remember the summer that I was in a major flare and my son had to be driven to driver’s ed every morning. Since my husband had left us and my older daughter had moved on with her life, I was the only driver around and had to do it no matter how my wrists screamed with pain. Now at 79 and retired for 17 years, I don’t have to go anywhere I don’t want and can sleep as late as I want. Hallelujah!

  13. Sandi

    Your life must me modeled after mine. I had to leave a job as an entertainment writer at a state daily newspaper in 2006 because I was so sick, but I never showed up until about 1 p.m., and I’d work late. However, when the fatigue hit, nothing could get me out of bed. I was well known for going to bed Friday night and sleeping until noon Monday.

    I’m sorry you’ve had to arrange your life that way. In our painful club, it’s funny — almost gallows humor — that we all tell receptionists “afternoons are always better.”

    One more thing. Are there times you’d like to go to a rehab center and talk to pain pill addicts about what that high is like? I surely don’t know. When we take pills, our pain is eased. They get high. I’d like them to see the faces of the people they affect with their behavior. What they do makes it harder for us to get the medicine we need to even try for a semi-normal life.

    Thanks for letting me vent. Appreciate it.

    Take care.

  14. Lori Rogers

    I am currently waiting a diagnosis. I got a referral to a rhuematologist (where i had a job interview,lol) back in Oct. and keep getting the run around about getting an appointment. Reading about you has made me fell not so alone and helps me know that what I’m going through is ‘normal”. thank you for all the insight to RA. I wish you more good days than bad. 🙂

  15. Michele

    Especially touching post this time. I get up at about 6:30 because the pain and stiffness won’t let me sleep longer than that and have to have hubby help me into the bathroom. But I don’t schedule anything before 10:00am except on emergency basis. Still working on the acceptance thing.

    Lori-hang in there. You are not alone, you are not crazy, you are not a whiny baby. Just keep going until you find the right rheumy.

  16. Fran P Willingham

    So sorry for your intense pain, it is so weird that others can look at us at times & say, “What’s your problem? Take an advil” Little do they know, it is just like depression, mine does not show on the outside, but hurts like -ell on the inside. Being in PAIN can cause Depression to be so much worse and Depression can cause RA and Fibromyalgia to be so much worse. Thank you for sharing and Prayers for better days to come.

  17. Cathy

    Thank you for sharing. I’ve just very recently received my diagnoses and have to admit I’m a little scared. It started so suddenly and every day is worse. Almost hate to go to sleep, not that I’ve been sleeping good, for fear of how I will feel tomorrow. Haven’t started any real RA meds, go to the dr again Monday and am sure hoping for something.

  18. Jennifer

    I so agree with the ‘no commitments before noon’ rule. I have Ankylosing Spondylitis, with inflammatory arthritis in pretty much every joint in my body, jaw to toes. Slow mornings are the only way I can create a life that looks even somewhat normal.

  19. Linda P.

    Cathy, we’re all sorry that you’ve joined us in this journey, but you’ll find much information and comfort on this site and others.

  20. HayWire0831

    I’m with Maria. I’m so jealous. I am struggling with extreme fatigue right now, but I am also, currently, the sole breadwinner in the family (my hubby’s unemployed at present) and I’m also in a job I DESPISE, so being forced to go to a job like this every day doesn’t help my condition. I’m struggling with fatigue so bad right now that I’m actually going to talk to my Rheumy about it next week. I also just started back to school so I can make sure I do something I’m passionate about for the rest of my life instead of being here. Thank god I still have my hubby and son to support me or else I don’t know where I’d be. Like Maria, I have no way out at present, so it’s a bit frustrating. Oh yeah, I would also like brunch in bed please. Thank you very much!

  21. Lene

    this is going to stick in my head for a while. It’s something to tuck away and pull out when things get hard enough that the only way forward is to surrender. Your post reminded me that surrender isn’t the same as giving up. And that feeling safe is not dependent on what happens in your body.

    I admire your ability to set boundaries and to let your ability for the day dictate what you do. I’ve gotten a bit better at listening to my body’s pain messages, but I still tend to ignore alerts of low energy. Maybe that’s why I’m so tired all the time? Thanks for reminding me that there is another way.

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