Right around the time that I was diagnosed with rheumatoid arthritis a few years ago, I had some of my first episodes of forced stillness. While my body stayed still, my mind was anything but. It felt trapped, and it wasn’t happy. It was doing everything possible to try to escape from the stillness.

While these episodes of this past month were much better (emotionally) than those of a few years, I realized that there was still much more that I could do in order to try to turn them into less traumatic experiences. During those moments, when I could not move or speak, I realized what was going on and my mind was relatively calm. It was afterward, once the ice seemed to melt away, that it felt more traumatic than ever. In a weird sort of way, the hours immediately after these episodes were more difficult to cope with than the actual episodes themselves.

So I looked at my meditation practice, and started to think of how many moments of complete stillness – physical and mental – that I have experienced while meditating. Sometimes these moments come during a session of dedicated meditation, while others come at the end of a yoga/pilates class while I am lying in corpse pose (savasana). The one thing that all of these different types of stillness have in common is that they are relaxing, refreshing, and renewing.

And in a way, they are “voluntary”. I decide when I want to enter into these moments of stillness.

I started to think…why not incorporate the best aspects from my moments of “voluntary” stillness into my moments of “forced” stillness. Better yet, why not remove the labels completely? Voluntary stillness. Forced stillness. What I am left with is just stillness. And as I have learned through my meditation and yoga practices, moments of stillness are often beautiful.

Sometimes, I will be able to decide when the stillness comes, and sometimes I won’t be able to decide when the stillness comes. When it does come, however, I will do my best to make it a pleasant experience. From now on, I will move into and enjoy the stillness, rather than fight against it.

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

When my body feels pain, I know that everything is okay.

What??? Okay, I know that the brain fog that results from chronic pain can sometimes send some really funky messages to my CPU, but my mind was as clear at the bright blue winter sky (High 60°, Low 29°) that surrounded the bus as it teetered along the edge of a deep ravine. (By the way, there is nothing like being a commuter in the Andes Mountains!)

My pain has always been a sign that something was wrong…how could it possibly become a sign that something was right?

{Pop-Up: Rheumatoid Arthritis Guy owns six pairs or shoes.}

And then it dawned on me. Yes, my immune system gets confused and attacks my own body. Yes, this causes (indescribable) levels of pain, and lots and lots of stiffness. Yes, from the point of view of a “normal” body, everything seems backwards and broken.

But from the point of view of my body, everything is working just as I have come to expect it to. My immune system gets confused and attacks my own body. This causes (indescribable) levels of pain, and lots and lots of stiffness.

When I feel the pain, I know that I am in my body.

{Pop-Up: Rheumatoid Arthritis Guy lives with chronic pain.}

I continue to familiarize myself with both my body and its pain.

While the pain itself hurts just as much (if not more!) than it used to, at least the idea of living with chronic pain is becoming a little more comforting and a little less painful…if such a thing can even be said.

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

“This is going to last a lifetime?”

This thought is always good for a few seconds (or minutes) of intense anxiety. When I frame my situation in these terms, it seems so impossible to deal with. So today, I decided to rewrite this thought. I turned it into “Sure, this will last a lifetime – but I only need to get through this moment. I have done so before, and I will continue to do so.”

As I continued to walk, I noticed that I was on the flat surface of the street and not on the neighboring concrete sidewalk. The small steps on each driveway curb were just too much for my ankles and knees to handle. Chances are, my crutches are going to come back out from the corner of the entryway to my house. (In the past I used to put them in a closet when they were not in use, but bringing them back out was that much more difficult.

“I feel like a failure.”

Okay, first of all, let me say that that I know that I am not a failure. But somehow, every time my crutches come back out of the closet/corner, I feel like I have failed. The fact that sometimes I cannot carry my own weight on my feet and legs – even though I completely understand the reason why – still feels like a shortcoming on my part.

I guess I’ll strike out that previous thought and replace it with “I will do what I need to do in order to take care of myself.” I’m still not completely convinced, though. Darn. I thought that I had finally worked through these feelings of failure.

Looking back at this moment of the day when all the above thoughts (and others) crossed my mind, I do recognize that I was able to remain calm. I experienced absolutely no feelings of anxiety or shortness of breath.

So instead of feeling bad about the reappearance of these thoughts, I think I’ll celebrate the fact that I was able to work through them the best I could.

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

When I came to, a few hours later, I was in so much pain that I was unable to move. All I wanted to do was roll over in order to take the weight off my left shoulder – which was in extreme pain – but I was unable to muster the energy to do so. I tried calling out for help, but I couldn’t even do that. (Yes, sometimes the pain gets so bad that I cannot even talk.)

So I laid there, eyes wide open, unable to move and unable to speak. All I could think was I that hoped someone decided to walk into the bedroom right at that moment. I realized that I was not panicking. I knew exactly what was going on, as I have been through this many times before.

Within 5-10 minutes of being awake, I was finally able to move. I rolled over, got out of bed, and went on with my day.

Right before I went to sleep last night, I looked back on my day, and begin to question my feelings about what had happened. Everything felt a little too “matter of fact” to me. Shouldn’t I be more upset about what I happened? Shouldn’t I be scared about this happening again?

I decided to listen to an excellent guided meditation that I often use in order to help me understand my emotional reactions to pain. (It is, in fact, called “Emotional Reactions to Pain” and is available on Break Through Pain – a resource that I highly recommend.)

I followed the cues to label my emotions moment by moment. Every time I’ve done this meditation before, my emotions were very easy to recognize and label: anger, fear, sadness, or helplessness. This time around, I honestly could not feel any emotion – and it wasn’t as if I was blocking my emotions, either.

What the heck is going on? What is wrong with me? Have I become emotionally numb to my pain?

And them, a few minutes towards the end of the meditation, I heard some words that I had never paid attention to before. (Even though I had listened to it hundreds of times, I was always too busy processing all of my emotions that were evoked by the first half of the guided meditation.)

“When there are no reactions to the discomfort, consciously enjoy the restfulness. No emotional reactions means little sense of a suffering self. It means the physical body can be left to its own resources. It knows what to do with pain.”

And with that, I realized that everything was indeed okay.

I rolled over and went to sleep.

I wasn’t sad. I wasn’t angry. I wasn’t scared.

I was at peace…and it felt good, no matter how much pain I was in.

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

The break was great. I won’t be able to fit everything into today’s post, but I am sure that I will share more details in the coming days. As usual, I did not get to do nearly as many things that I had hoped to accomplish with my extra time. But I am okay with this – it was one more instance in which I could practice being rather than doing. For me, this is a big accomplishment.

As I continue to learn throughout my journey with rheumatoid arthritis, some of my biggest successes are often the most intangible ones – those moments when I am able to look into myself, and learn something new about the person who I am. Those moments when I can look around myself, and see the beauty of an older couple in the car next to me, laughing with one another, while stopped at a red light. Those moments when instead of waiting anxiously for my computer to boot – those seconds really seem to stretch out into minutes sometimes – I can go serve myself a cup of tea, and start my work on a note of calmness.

And while I was on break, I also got some time to reflect on my private versus public life. As with any good superhero, my true identity does continue to remain a secret…but this has not stopped me from sharing some of the most intimate details of my life with rheumatoid arthritis on a regular basis. (Actually, this has probably allowed me to be much more candid than I would have otherwise been.)

I have had no regrets about sharing the ups and downs, in’s and out’s of my life. I must admit, however, that I do sometimes fall into the outside/inside game.

Outside…as in: What will others think about what I write? How might sharing my story help others dealing with the same issues?

Inside…as in: What will I think about what I write, no matter what others might think. How will putting my thoughts down into words help me process these thoughts, and my feelings?

Whether readers of this blog notice this struggle at times, I do not know. It is not always present, but it does pop up every now and then.

Case in point: a few weeks ago, I wrote about the happiness I felt about starting to substitute teach. The thought of how others might react did cross my mind. Having worked for some of the largest technology companies, and with two Ivy League degrees tucked into my belt (and the corresponding student loans to prove it!), what could possibly be so exciting about substitute teaching on a part time basis?

But to me, that day meant so much. While I was still learning to juggle my rheumatoid arthritis with other commitments, I proved to myself that I could still accomplish a lot – even while in the midst of a major flare. I also looked at what I was doing from a new perspective: I might not be making the big bucks that I was previously used to, but I was gaining more insight into the inspiring world of education.

So I put my outside hesitation aside, and went forward with my inside motivations. When I returned home that afternoon, I was heartened to see my comments queue filled with many, many messages of encouragement and support.

On that day, I realized that this blog really is a two-way street. I used to feel like it was me on one side, and you the reader on the other side…with the obvious feedback through comments and email. But I was wrong. It is not about outside versus inside. Private versus public. This blog, at least to me, is about all of the above.

It is about all of us.

All of us living with rheumatoid arthritis and other autoimmune illnesses – either directly or indirectly. (I speak from experience when I say that this disease is sometimes harder on those around me, than it is on me.)

All of us who deal with the fear that naturally arises when our bodies just don’t seem to work…and who continue to look for ways in which our minds and souls can pick up the slack.

All of us who silently cry when we see a loved one struggle to get out of bed in the morning. (And who just might cry out loud, when no one is looking.)

All of us who continue to work so that others may better understand the illnesses with which we live…while at the same time constantly trying to figure out these illnesses for ourselves on a daily basis.

While my break during the past few days did give me a much needed energy boost, the sentiments expressed above are what will provide me with the true motivation to continue blogging for what is hopefully a long time to come.

I’m glad to be back.

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

Arthritis Ireland have won the award for the ‘Best Patient Education Project’ at the recent Irish Healthcare Awards 2009 for its ‘Coping With Emotions’ booklet.

In response to the findings of a survey on the impact of arthritis on people’s emotions, Arthritis Ireland has produced a new booklet called ‘Coping With Emotions’ that offers support and guidance on dealing with these emotions.

This booklet is available by contacting Arthritis Ireland on LoCall 1890 252 846 or can be downloaded here.

Read More: http://www.arthritisireland.ie/news/newsItem.php?id=71

I just downloaded a copy of this booklet and it looks excellent. Thanks, Arthritis Ireland!

As hard as it might be, I continue to try to accept my disease into my life and into myself, as fully as I can. A few years ago I was quite unable to even consider this level of acceptance when it came to my rheumatoid arthritis…at that time, accepting the progressive and chronic nature of my rheumatoid arthritis meant throwing in the towel and giving up hope. During this time, I felt like I only had two choices: accept my illness and lose hope, or fight against my illness and retain hope.

It’s funny what time alone can teach us at times. At the moment, I find myself at a point that I previously thought was impossible. I am working to accept my illness, and retain hope. It is not always easy, but by doing so I am moving to a place that feels good for me.

At the end of last week, I started reading a book that summed up quite well the thoughts and emotions that I am feeling at the moment. (Okay, I am still on the first Chapter…but the Introduction is one that you will definitely not want to skip!). The book is Dancing with Life: Buddhist Insights for Finding Meaning and Joy in the Face of Suffering by Phillip Moffitt.

This is just a sampling of what this book has to offer:

You Can Find Freedom From Your Suffering

Why do you suffer? Is there a purpose to your pain? What about the amount of suffering you experience – is it fair, based on some understandable system of cause and effect, or is it simply arbitrary? Can you effect how much you suffer? If so, how?

For thousands of years, questions such as these have confounded human beings trying to make sense of the seemingly random and unfair distribution of gain and loss, joy and unhappiness in every person’s life. All people are united in their common desire for happiness and their common experience of suffering. As you grow from childhood to adulthood, you inevitably experience life’s difficulties, whether it is through physical limitations of illness, emotional anguish, fear or disappointment, loss or separation from a loved one, or the anxiety and stress surrounding all your wants and needs. No one is spared.

In a sense, then, you are already an expert on suffering. You remember it from your past, and you easily recognize it in yourself and others. You have an array of skills for averting it when possible and surviving it when it is unpreventable. But do you have a conscious relationship with your suffering? Do you use it to enrich your life? Or is it merely something you try to avoid? When you suffer, do you experience it as a failure, an embarrassment, something shameful? If so, how much of your life is unacceptable or alien to you because it contains suffering?

This past Friday I experienced one of my worst flares, during which time the pain I felt was absolutely everywhere. My mind was going wild as it tried to look for an escape from the pain and suffering – there was no place to go! As I wrote a few days ago, I decided to envision my pain as a warm blanket that was wrapped around me. As soon as I did so, the spell broke. The pain was still there, but my mind was finally at a certain level of peace…I was starting to accept this pain on a conscious level, as hard as that might be.

The author goes on to talk about some of the writing of Buddha.

The path to happiness and a sense of well-being in this very life lies not in avoiding suffering but in using the conscious, embodied, direct experience of it as a vehicle to gain deep insight into the true nature of life and your own existence. Instead of being a reactionary slave to the inevitable pain, frustration, stress, and sorrow in your life, which the Buddha called duhhka, you can free your mind such that you have a sense of well-being even when dukkha is present, and you create the possibility of finding complete freedom. Why not dance with the constant vicissitudes of life in a manner that is joyful and liberated, rather than feeling like a victim or being flooded with fear and stress?

The Buddha discovered a path for finding freedom from dukkha, or suffering, which he called the Four Noble Truths. This set of attitudes and practices he prescribes doesn’t require you to create some new and improved version of you – one that you can only hope will someday emerge. You can take these steps as the “you” who exists right now – the one who gets lost, afraid, angry, and caught up in desire, despite good intentions. All that’s required is that you let go of your preconceived notions about suffering and open yourself to exploring the role that is plays in your life.

In one of my early blog posts on May 2nd of this year, I wrote: “So in closing, I pledge to work on making my feelings of personal well-being less dependent on the presence/absence of pain and mobility limitations in my body.” (Redefining Victory) All of the ups and downs during the almost half year since I made that pledge are on view here in this blog for everyone to see. I am not saying that being able to separate my mental well-being from my physical well-being was something that was quickly or easily achieved…but it was definitely possible.

But if you give yourself a chance to investigate your suffering more deeply, you will discover that being “with” your pain can lead to wisdom and happiness. The event or circumstance itself does not lose its unpleasant or unfortunate quality, but by going through it consciously you arrive at a peaceful and luminous state of mind. In this “enlightened” state, your mind experiences difficulty in a very different manner.

This past Sunday and Monday I had a recurrence of the extreme pain that I experienced on Friday. For the first time ever, I welcomed the pain when it exhibited its first signals. I prepared myself for what I needed to do to get through the pain. I laid down in bed and turned on some nice music. I spent hours dancing with my pain. As it worsened in my feet and lightened in my hands, I held a book and read. As it worsened in my hands and lightened in my feet, I watched some television. The pain was as strong as ever…but my experience of it was more peaceful that is has ever previously been.

So even though me and my rheumatoid arthritis are still stepping on each others toes every now and then, we will definitely continue this dance. Things can only get better.

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

Following my 4 a.m. wake-up call, the morning continued to get even worse. The pain continued to spread, and my joints got so stiff and painful (all of them, it seemed) that walking became extremely difficult. I wanted to just drop into bed and get away from it all…which I actually did, but after five minutes things just seemed to get worse, so I forced myself to get up and to go back at sit in my office chair.

I felt like I was losing control of my mind…I didn’t know what to do. The pain was so bad, and seemed to have come on so suddenly that once again I just seemed to forget about all of my previous coping tools. But little by little, I started figuring out what to to. I sent an email to my family members, asking them for prayers of support. I called my psychologist, and she scheduled some time for me to visit during the afternoon. I continued to move around – as difficult as it was – and even went outside to get a little sun and some fresh air.

And then when the pain continued to worsen, and my mind began to spiral into confusion, I decided that if I could not get away from this pain, as bad as it might be, that I might as well welcome it and -strange as it may sound – find comfort in it. I begin to envision my pain as a thick quilt that was wrapped around me. (You know, on those cold winter days when you wrap yourself with your warmest blanket, from around your ears all the way down to your feet.)

Once I did this, it didn’t seem as bad anymore. It actually felt better…and somewhat protective. (Odd, no?) The worst was not over, but at least I once again had control of my thoughts. I started looking forward to lunch. I spoke with my sister. I still could not see through to the end of my day, but I started thinking about activities that would get me through the day. Lunch. My afternoon session with my therapist. My evening class. Maybe a movie at home afterward.

I had lunch. I placed my wide-grip handle on my fork. I used my angled knife. I cut my own food and I fed myself. Things were looking up. I reminded myself that it was okay to use both hands to lift my glass of water. I had a warm cup of tea afterward…something that I was unable to lift only a few hours before. Things were looking up!

I eventually made it through the rest of my day. The pain started to decrease. No, it didn’t go away completely, but instead returned to it’s previous “normal” level. All of a sudden, returning to just normal levels of chronic pain seems like a blessing.

Last night I slept well. I slept in late, in order to make up for the tiring and stressful previous 24 hours. Luckily it’s Saturday, so I can take it easy. Maybe read a book or catch some college football. My body has taken a beating and is still in recovery mode…but I’ll be nice to it, and I am sure that it will soon feel much better.

Here’s hoping that everyone has a wonderful weekend!

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

When I am going through a particularly difficult flare, my cone of focus becomes just a tad bit smaller. World news events are forgotten…which is sometimes a good thing because they can be so depressing at times. Being the eternal optimist, I recognize the good that results from my moments of mental fog, of forgetfulness, and of feeling that once again I am walking on the rim of the canyon that hovers above deep depression. What is the good result of the above items that are often considered to be elements that should remain outside of our lives? For me, these periods force me to turn inwards, to get to know myself a little better.

To use this most recent occurrence of pain and disability to move myself one step forward towards a better place, despite the fact that my body seems to be moving towards a worse place – if I continue to implement this as one of my guiding principles, I feel full of hope, ready to deal with any problem that life presents to me or with any disability that my body presents to me.

I have noticed that after dealing with a flare for a couple of weeks – normally around the time when in the past I used to feel like throwing in the towel and losing hope – I now feel the exact opposite. I feel like a wind (I don’t know where it comes from, to be honest) fills my sails and propels me forward to a place that I may not yet understand, but which I know is a positive and healing place for me at this point of my life. Normally, the first burst forward involves my emotions and my mental state of being, and then is followed by a similar burst forward in my physical condition.

This past weekend, I had that first burst – and a little bit of the second burst. Instead of filling my mind with thoughts such as “how long will this last?” or “I hope my excruciating pain does not come back”, I instead decided to use my clear mind to think about what I have just gone though once again, about what I have learned, and how I can take that next step forward which will help me next time I undoubtedly go through another rough period.

I found myself creating a list…a list of aspects of living with rheumatoid arthritis that are usually (at least for me) regarded as some of the most negative aspects of living with RA. Knowing that I have experienced them many times in the past, and that I will experience those many more times in the future, I thought it would be fun to see what positive and optimistic – yet realistic – spin I could place on these “challenges”.

So here goes…

The Unpredictability of Living with RA

Right now I am doing so-so, later this afternoon my wrist might be in so much pain that I can barely move it. Tomorrow I will have difficulty getting out of bed. The day after I will jump out of bed with no problems, right before the sun comes up.

One of the aspects of living with RA that has been most difficult for me to accept has been the unpredictability that arises when living with this chronic condition. Sometimes I feel like I should not make plans for the coming day or for the coming week, because I don’t know how I will feel once that moment arrives. Other times, I wish that I could just have all of my bad days grouped together and all of my good days grouped together…that way if I have a good morning, I will not start feeding myself thoughts of delusion such as “ahhh, the worst is over – finally!”

It’s a roller coaster ride, definitely…but the more I think about it, I have never had much of an aversion to the rote or to the mundane. The same things day in and day out…that’s sort of boring to me. I resigned from my corporate job when I was 29, after deciding that I wanted more adventure in my 30’s. The morning commute…sitting at a desk…attending meetings…emails…reports…deciding where to lunch…afternoon commute…and so on just did not sync with the person who I thought I was. Sure, the leap away from a high-paying job with good benefits was a little scary, but looking back I would not have done anything different.

So living with rheumatoid arthritis definitely brings a lot of uncertainty into my life, – but with it, it also brings adventure. So if I frame this as an adventure in which I am constantly learning, while never knowing what lies around the corner, I think I will begin to cope more easily with the continual up-and-down rollercoaster ride that living with rheumatoid arthritis seems to be. And in a way, this adventurous aspect of my illness certainly fits in nicely with the individual I have become during the last six years since living my corporate job.

The Oh-So Excruciating Pain

Okay, here’s a good one. The pain that sends constant messages of “don’t move” to my mind, the pain that clouds my emotions and makes me feel on edge, the pain that sometimes feels like it will NEVER get better much less go away.  What good can possibly come out of living with this type of pain?

First of all, living with this pain has taught me to learn to listen to my body. My body is sometime that I should respect at all times, and it not something that I should push around past its limits. While I was in college and early on in my professional career, my norm was to push my body hard…but all in the wrong way. I was not pushing it to exercise, or to explore a new diet, or to learn the benefits of rest and downtime. Instead, I was pushing it to produce…and produce…and produce even more (rest could always come later).

Having lived with chronic pain for years now, I have learned that rest comes now. I have also learned to shed myself of any negative attitude that I had previously associated with rest or down time. Often, the best thing that I can do for myself is to do absolutely nothing. During these moments, I give my body a chance to heal from the constant attack of rheumatoid arthritis. I allow my joints to rest. I allow myself to grow.

And since the pain is ever present, I am slowly learning to not be afraid of it. Instead, I am learning to walk toward it…to get to know it a little better. I am figuring out that while it seems like one monolithic mass hanging over me all the time, it is actually quite nuanced and complex. Oh I know, the thought of getting closer to the pain and not further away is both frightening and contradictory to the way in which I have previously related to it…but since it’s there, and since it’s a part of me – for better or for worse – I will once again take a leap into the unknown.  The more I identify with this pain, the more I incorporate it into my life and accept is as a part of my being, the better off I think I will be.

“This Will Never End”

So be it. Let it remain a process, and not a destination point. All too often, when I am going through a relatively good period where my symptoms are low to non-present, I slip back into my routine of the past: do too much, don’t take care of my diet, start slacking with my meds, don’t allow myself periods of mental rest, lower meditation and other helpful activities on my list of priorities, and so on. I continue to do this, even though the results are often the same. Things go back to the point where they were before I got “better”, or the even get worse. Then, I scold myself for not having yet learned this lesson.

Frequently in the past, the thought of “this will never end” has been one that got my heart-racing just a little bit faster, that pushed me over into an anxiety attack, or that fueled feelings of losing hope. Ask anybody close to me in my life, and they will tell you that I spoke these words often.

I have a right to speak these words I have no doubt…after all, rheumatoid arthritis is a chronic illness for which there is not yet a cure. I will continue to speak these words, as this is the reality of my situation. But rather then invoking them in order to heighten my fear, I will now work on using them as a reminder: a reminder that I need to continually take care of myself. I need to take care of myself not because I live with rheumatoid arthritis, but because this is what is good for me as a person.

And in this way, maybe I will finally learn and listen to the lesson of not overdoing things, no matter how good or how bad I am feeling.

The Dark Tunnels

The depression that returns, no matter how many advances I have made in living with rheumatoid arthritis. The fear that comes out of seeming nowhere, that often leaves me in tears. As I have written before, I used to consider these feelings as signs of failure…signs that I am not coping well with my chronic illness.

Well you know what? I now consider these feelings a sign of my success. I am accepting the effect that rheumatoid arthritis has on my body AND on my mind. I now know that these feelings go hand-in-hand with my flare. It doesn’t matter if my last flare was last week or last month or last year, when I go back into a flare I am going to experience many of the same emotions.

I used to think that in order to get better, that I needed to stop experiencing these emotions. I now know that in order to get better, what I need to do is recognize and accept these emotions when they are happening. This allows me to understand these feeling and react to them accordingly. Just as my body gives me signals of the distress it is feeling, so too does my mind. So my journeys through these tunnels have gotten less scary. I have come to accept them as a necessary part of the process of going through flares and living with rheumatoid arthritis…and I know that passing through these tunnels will indeed get me to a better place.

Deformities

Some of my deformities are “temporary”: my right wrist gets so swollen that anyone who looks at it can see that something is out of place. While these types of deformity might appear to be temporary at the moment, I make no pretense of the fact that every occurrence is indeed adding some permanent damage.

Some of my deformities are “permanent”: my pinky fingers on both hands are beginning to curve inwards, while the joints on my toes are visibly drifting from their proper location. When I do warrior pose during my yoga sessions, as I stretch out my arm and allow my gaze to float over the ends of my fingers, I notice that some fingers curve upwards while others curve downwards…sort of like I’m permanently pressing down on a couple of piano keys.

When it comes to accepting my deformities that result from living with rheumatoid arthritis, I have come to accept that the hardest part is not accepting the deformities – temporary or permanent – that are already visible. Instead, it comes from accepting the deformities that might or might not take place in the future.

As it should be hard…it’s hard to accept something that does not yet exist. Recently, I have found myself thinking a lot about what might happen to my body down the road. Much like I am working on changing how I relate to “this will never end” I am also trying to change the way I relate to “what will happen to my body in the future?”

I no longer see this thought as one which provokes fear. Instead, I think of it as a way for preparing myself for something that has a certain probability of entering into my life since I live with RA. I don’t think I am being overly-optimistic (i.e. “I will not have any deformities beyond where I am at the moment”). Neither do I think that I am being overly-pessimistic (i.e. “I will lose the use of my hands and feet and require the use of a wheelchair”). Instead, I think I am preparing myself for whatever might happen. Sure I can’t cross that bridge until I get there…but if I at least start to think about it, hopefully I can be a little more ready to cross whatever hurdles might appear in my path

And in regards to the deformities that I described at the beginning of this section…I can’t say that I have fully accepted them. But, I have made this my goal.

*****

I definitely had a milestone weekend these past few days. These are my feeling at the moment. I look forward to returning to this post during my next flare.

This is my life.

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

Oh, don’t worry – I’m not talking about a divorce or about breaking up a close friendship. What I am talking about is my bed.

My bed, you might ask? All too often in the past, I have spent more time than is healthy in my bed. Having a laptop computer is part of the problem…why go to my desk when I can do everything straight from my bed? Now I would never judge someone who is spending a lot if time in bed because of rheumatoid arthritis. Sometimes it is indeed the easiest thing to do when every joint in the body is in excruciating pain. I have written many times in the past about spending lots of time in bed and trying to at least use a book or my iPod to get my thoughts away from worsening depression or feelings of hopelessness.

There is one thing I have learned recently, though, at this is when I am in bed I am not doing a lot of other things. I am not cooking, I am not taking a short walk, I am not going to class, I am not doing certain other things. In the past few weeks I have made an even stronger effort to return to some of the activities that I had stopped doing as my rheumatoid arthritis worsened in the past year. Initially it was a matter of overcoming my internal fears, but once I got “back on track” I did not second-guess my decision to become more active – physically and mentally. During the past week or so, as I have entered one of my worst periods on months, I have often found myself thinking that I should just stop everything I am doing and go to bed.

That said, I still do allow myself to go to bed when it’s necessary. If I need to take a one or two hour nap after lunch, I do so. But as soon as my nap is over, I get out of bed and return to other activities. During the past week, getting out of bed in the morning has been difficult if not impossible due to extreme morning stiffness in my hands and in my feet; but as soon as things are a little better – whether it’s 8:00 am or 10:30 am, I get out of bed and move on with my day.

This is a stark contrast to where I was just a couple of months ago. My bed became somewhat of an escape from the real world. It became a place where I could allow myself to believe that I was taking care of myself by spending the day in bed. It became a place where I would eat my lunch, where I would work on my computer, where I would read my books, and where I would watch some television.

Still, recognizing this habit and breaking it (I’m still in the process of breaking it, like I said I continue to deal with urges to return to past behavior of passing a lot of time in bed) did take quite some time. One weekend this past May – which was by far the worst RA period that I have had to day – remains in my mind because my biggest goal of the day was to get myself out of bed. I had not pretense at the time that I could do something like leave the house, in the condition in which I found myself, but if I at least got out of bed I was going to consider it to be a good day. I still remember getting myself out of bed – alone – and walking the thirty of so feet to my living room. Of course as soon as I got to the sofa I laid down again and immediately fell asleep…but at least I moved myself from one room to another.

The following afternoon, I found myself in a situation where I could not even cut my own food, lift a glass of water, or get out of bed. It was frightening, and it was definitely not a case of me wanting or not wanting to stay in bed…it was much more serious than that.

But even though I find myself facing more challenges in the recent days, they certainly do not compare to where I was in May. So as long as my urges to retreat and spend the day in bed continue to arise, I will continue to remind myself that my bed is there for nighttime sleep and for daytime naps. Otherwise, I have my desk, my sofa, my dining table, my patio, and many other more exciting and healthy places where I can spend my time during the day.

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