A few days ago, Rheumatoid Arthritis Guy canceled one of his regularly scheduled physical therapy sessions. (I had an appointment with my rheumatologist for the same date and time slot.)
When my feet flared big time the night before, I figured it would be best to call my physical therapist early the following morning and see if I could be squeezed into an alternative time slot. Luckily, I was told that they could accommodate me at 6pm. (My regular time is 3pm.)
When I showed up that evening, my physical therapist greeted me with a warm smile. When I had originally canceled, we decided that we would use my missed session as sort of trial run, where we were could see how my body reacted to four days with no PT treatments. Since I had to cancel my cancellation, it was obvious to both of us that any plans to reduce the frequency of my sessions were going to have to be postponed.
My physical therapist is a true unsung hero. (I think many people who enter this profession, by nature, have a caring heart and a healing mind.) While most of her patients are recovering from surgery, I am one of the few (if not only) patients going to physical therapy for a chronic illness like rheumatoid arthritis. During out sessions, she suggests things I can do to help when I am at home, and I take time to teach her a little more about the ins and outs of rheumatoid arthritis.
As we appraised this latest flare and came up with our action plan, I told her how bad things had gotten the night before, right around midnight. She told me that in the future, she would be more than happy to meet me at the clinic at any hour of the night for an “emergency” session – all she needed was thirty minute notice by phone. (I haven’t taken her up on that offer yet, but I have found a lot of comfort knowing that this option is available.)
My physical therapist asked me, with genuine concern, what options were available to me for immediate relief during my worst crisis moments. I told her that there are different medicines that can sometimes provide a limited amount of relief from the strongest flares, but that the results are often measured in days, not hours or minutes.
I told her that there was one things that recently has been providing me more immediate relief when I confront some of my most painful moments. It’s not a pill or other type of medicine that I have to take. It doesn’t require me to make any appointments ahead of time. It’s free. And the best part – I can do it in the comfort of my own house, at any time of the day.
It’s called mindfulness meditation.
I have multiple books and audio cd’s related to mindfulness based stress reduction authored by Jon Kabat-Zinn, who is the leading practitioner in this field. (www.mindfulnesstapes.com) I haven’t completed them yet, so I don’t want to write about them right now…but I do hope to share more in the near future, once I am finished.
There is another book/audio cd, though, which has been one of my greatest sources of speedy relief during the past few months.
“In Break Through Pain, meditation teacher Shinzen Young draws on his 20 years of scientific research on meditative states to create an easy, effective practice for pain relief. With him, listeners will learn how to: “Step outside” of pain as they learn to focus attention and awareness with meditation, and enjoy “breath pleasure,” a physiological tool to soothe the nervous system, improve circulation, boost energy, and promote overall healing, release anger, fear, or resentment negative emotions that actually amplify pain, and work with pain as an unexpected gateway to liberated states of experience, and much more.”
If you don’t have any experience with meditation, don’t be scared. No previous experience with meditation is required in order to benefit from this book/audio cd. When I started using these meditations a couple of years ago, I was wide awake and fully aware during the entire hour (approximately) that it takes to go through all the tracks.
When I listen to it now, though – even when my pain is at its worst – I enter a blissful meditative state, where I am neither awake nor asleep. When I return to full awareness, I often find that while the pain is still there, the absolute worst has indeed passed.
Track 1: How To Use This CD (3:13)
One of the best aspect of these meditations is that they need not all be used in sequential order. This introduction tells you which tracks you can jump to, depending upon which aspect of the pain you want to focus on.
Track 2: Emotional Reactions To Pain (9:38)
This mediation provides me relief within seconds. It is a simple, yet powerful exercise where you spend about ten minutes addressing the different emotional reactions that you might be experiencing as a result of the pain. It could be anger, sadness, impatience, and a wide range of other emotions. On more than one occasion, I have gone through the entire exercise with only one emotion on my mind: fear. Once I become aware of the emotions that I am dealing with, I have taken the first step that is needed to work through the pain.
Track 3: Free-Floating Within The Discomfort (18:59)
The title of this meditation says it all – the goal is to free-float through the pain. I often find that free-floating is much easier to do once I have released my emotions during the previous meditation. I often enter my most meditative and healing state during this meditation.
Track 4: Working With Local Intensity And Global Spread (11:23)
My worst flares often involve a large number of joints. It’s somewhat easy for me to get used to problems in a few joints, but when the whole body gets in on the dance it become a whole other challenge. This meditation has worked wonders when my whole body is in pain. By bouncing one’s attention back and forth between high-intensity points of pain and mid/low- intensity points of pain, it is actually possible for all of the pain points to taper our slightly. (I wouldn’t believe such a claim if I haven’t personally experienced it many times.)
Track 5: Breath Pleasure (9:58)
This is a more traditional breathing based meditation. When all of the meditations are done in sequential order, this one helps to slowly transition your mind and body as it begins to transition back to a state of full awareness.
Track 6: Winding Up (6:58)
All exercises, mental or physical, need a cooling down period. This final meditation wraps up the full session.
My aim is to start practicing these meditations on a more regular basis, and not just wait to do them during moments of crisis. If anyone else has been helped by meditation, please do share your suggestions and experiences.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
Helly lives with juvenile idiopathic arthritis, and just started blogging this past week. Be sure to take a look at this new RA blog, and don’t forget to send Helly some sunshine as she is currently two weeks post op from hip replacement surgery!
If this is your first time hearing about PFAM, let me explain that the goal is to build connections within the community of people who blog about illness, disease, and disability. This includes doctors, nurses, caregivers, even policy wonks – but especially patients.
My goal in organizing this carnival is to give blogging patients – many of whom focus on a specific disease – a chance to reach out to a broader audience. I recognize that blogging can be an important way to talk and think about a diagnosis. But I also think we as patients ought to engage other patients with different diseases, to explore what we have in common as people with illness. The more we’re able to engage and communicate with one another, the better off we’ll all be.
Be sure to check out this inaugural edition of Patients for a Moment, which presents a collection of thirteen blog posts. Each post provides a different perspective on illness, disease, and disability.
Rhuematoid Arthritis Guy loves sports championships.
Granted, I don’t watch the NBA finals anymore. (I just don’t have the time to watch so many games…) But I did follow this recent series on twitter…does that count?
And the truth is, for me baseball has never progressed much beyond a sunny afternoon outing to the ballpark – hotdogs, peanuts, and all. (San Francisco has such a beautiful park right next to the bay, no? I used to work right across the street from there…extended lunch break anyone?)
But if we talk about the Superbowl, I’m there! I certainly enjoy any excuse that allows me to make my homemade buffalo wings, kick back, and enjoy the game. The commercials are usually overhyped, so I really don’t look forward to them as much as some people might. The halftime shows are often entertaining. (Speaking of hype, remember the whole Janet Jackson “controversy”?) But in the end, it’s all about the game – and watching an exciting game is much more important to me than having “my team” win.
My only gripe, probably due to the fact that I have lived outside of the U.S. for many years, is the title of “World Champion” that is given to the winner of the Superbowl. (I think “National Champion” would be much more appropriate.)
The places I have lived in outside of the U.S. are Europe and South America. Being surrounded by what many people consider to be THE worldwide sport, it should come as no surprise that I am now a big fan of soccer. Already, excitement is growing for the 2010 World Cup in South Africa as national teams from around the world compete in qualifying rounds.
There’s nothing better than hearing that long drawn out “gooooooooool” as one team scores. No matter what is going on, everything comes to a standstill whenever this word is uttered. I was outside Milan during the 1990 World Cup, and every time Italy played, the city shut down completely, work day or not. Once I made the mistake of going to a restaurant in Buenos Aires as Boca Juniors played. It only took about two hours for my food to be served, as everyone working in the restaurant was glued to the television for the entire duration of the game.
So as I start get excited about the World Cup matches that are going to be taking place a year from now, I turn my attention to something in my more immediate future: my near-term goals.
For a large part of my life, I have gone from one goal to another. Some accomplishments took days, whereas others took years. Some of my goals are complete (go to college, go to graduate school) and others are still a work in progress (yoga, lifestyle changes). Some are still completely untouched (have kids). Some goals are financial (slowly becoming less important), and others are spiritual (slowly becoming more important). The one thing all of these goals have in common is that I have often used them to measure both where I am coming from and where I am going to.
Talking about goals brings up one of my more personal challenges of living with rheumatoid arthritis. As my entire world continues to turn upside down, the whole notion of moving from milepost to milepost is no longer as simple as it used to be. (Heck, I don’t even know anymore if taking physical steps tomorrow is going to be easy or hard.)
For the past three weeks I have been telling myself: “Next week, I will reach a point where I can walk without my crutches.” As each new week arrived, I realized that I had not yet reached this point. In one regard I have indeed progressed, because in the past I would have pushed my crutches aside whether I was ready to or not. (I guess that I was most concerned with the appearance of progress.) Even as I do the right thing by continuing to use my crutches, I do feel the disappointment of not having met my goals as expected.
I have been careful to not define a specific recovery point. I tell myself that what is important is to continue moving forward, even if I do have to take many steps back during the process. It would be nice to reach a point where my rheumatoid arthritis is in remission, but I am would rather not set myself up for feelings of defeat if this does not happen. I want to stay positive, while acknowledging that there will be negatives.
As I write this, I ask myself once again what “moving forward” means. My head fills with visions of pain-free days and joints that aren’t constantly popping. Being able to leave the house without crutches or a cane seems like an accomplishment. No longer having days where I have to remain within a short distance of the bathroom would be nice. But maybe, still, I am expecting too much.
So as I settle on what “moving forward” means to me, I end up with this: Taking care of myself as much as possible – body, mind, and soul. By this definition, I have been moving forward over the past couple of months.
It is easy to think that I deserve certain rewards for taking care of myself – such as walking without crutches in a week, or finally waking up one day without pain. After all, I have grown up with the belief that for every case of illness there will always be an achievable state of good health – as long as we take care of ourselves. (Get well soon!) I now know that when dealing with chronic illness, this is not always the case.
But maybe I should focus a little less on what I expect my rewards to look like. And in doing so, I just might be able to finally see the many true and unexpected rewards that will no doubt come my way.
I now commit to live each day to its fullest, no matter what comes my way.
As I add this to my list of my personal goals, I find comfort in knowing that I need not rush to put a check mark in front of it and consider it done. As long as it remains open, it will serve as a constant reminder of what I need to do – each and every day.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
When Rheumatoid Arthritis Guy was a little kid, he loved board games. Board games ruled, even with their lost parts and all! The cardboard boxes that squished under the weight of air were a classic (leading to even more lost parts, as the stack of board games fell over anytime you tried to pull one out).
Don’t forget that this the 1970’s, back when “video game” referred to either Pong or some small hand held device with about six red LEDs and and an audio device that could produce nothing other than really annoying beeps. (I had hockey and my brother had football, but except for the lines painted on the screen they were exactly the same.)
Some of the board games required lots of skill, whereas others were won based purely upon luck and the roll of the die. There was never a thing as spending “too much time”, playing board games. This was partly based upon the fact that whenever you lost a game, you immediately changed the rules to “two out of three”.
One of my favorite board games was so full of suspense, yet so simple. Chutes and Ladders. (Some people may know it as Snakes and Ladders.) In order to win, you needed only to be the first person to reach the last square. Along the way you could land on a ladder, which allowed you to climb up and gain spaces. You could also land on a chute, which forced you to slide down and lose spaces. Rarely was getting from start to finish a linear process, instead you continually went up and down along the way.
As I look back on this game, I being to realize what a wonderful metaphor it is for living with rheumatoid arthritis. I haven’t been sharing too many details of the day to day progression of my RA, but lust let me say that there have been lots of ups and there have been lots of downs. (Luckily, the ups have outnumbered the downs.)
In the past, I often used to get discouraged whenever my “recovery” was not a steady straight line of improvement. Whenever I woke up and it felt like things had (once again) taken a turn for the worse, I just wanted to give up and throw in the towel.
During these past two months, however, I can’t say that I have particularly enjoyed the flares that continue to pop up – but I have definitely learned to make the most out of them. If I’m sliding down, I might as well throw my head back and enjoy the breeze as it passes through my hair. (By the way, I’ve yet to experience any hair loss from my meds…yes!!!)
Once I get to the bottom, I will have ample opportunity to get back on my feet and climb back up the ladder.
Three steps forward and two steps back can sometimes seem like a strange way to move forward, especially in this modern world that is so fascinated with “efficiency”. I’d rather think of it, though, as going up and down chutes and ladders. After all, who didn’t enjoy coasting down the slide on the playground when they were a little kid?
(On a personal note, I’ve had lots of experience falling down slides. Once of my earliest home videos – 8mm back then – shows me cautiously climbing up the backyard slide. I was so young I was still in diapers. I reach the top and stand up with pride. The video stops suddenly, and when it starts again I’m lying on the grass crying my head off. I had just taken one of my first major tumbles!)
As long as I don’t hit that one mega-long slide that everyone was always afraid of in Chutes and Ladders, everything will be okay. But if my luck does happen to send me down this chute, I won’t forget that amongst all the ladders on the board, there was also that mega-tall ladder!
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!