Is Less Really More?

Yesterday morning as the week started, I woke up with a mental list of emails that I needed to send out. When lunch time rolled around, and I still had not worked through my list of emails, I was somewhat startled. It’s taking me this long to do something that in the past wouldn’t even have registered on my list of thing to do?

Looking back at my morning, I wasn’t too surprised: after each message that I typed, I was tired, and needed a break. (On the plus side, I was giving myself these breaks.) While I recently installed Dragon NaturallySpeaking on my computer and have taken it for a couple of test drives, I still haven’t started using it on a regular basis.

A couple of months ago my good friend, fellow blogger, and Show Us Your Hands! co-director Lene Andersen gave me a great tip, in response to some comments I had made about how I always feel rushed when I leave the house. She told me to give myself “ridiculous” amounts of time to get ready whenever I needed to go out (and we’re not talking a matter of minutes, but of hours).

So right after yesterday’s lunch, I found myself preparing my shoulder bag by gathering all of the things I needed in one corner of my bedroom. I was starting to get ready, even though my physical therapy appointment was still three hours away. This ended up being a smart move on my part, because half an hour before I was scheduled to leave, my body started to shut down. Luckily, my shoulder bag was completely prepared with wallet, keys, cell phone, emergency meds, natural stress relievers, Nexus 7 tablet, and the list goes on an on. All I had to do was figure out how I to get my body from my house to my physical therapist’s office.

While I sat in the back of the taxi cab on the way to my PT session, I started to think about not only my day up to that point, but also about all of my days over the previous few weeks. I’ve noticed–how could I not?–that what I am able to do on any given day continues to decrease. Doing some of the simplest tasks takes twice as long as they once used to. Leaving the house requires a level of planning just below that which is required to have a U.S. President visit a local bookstore. Not only have I had to double the amount of time it takes to do something, I’ve also had to double the amount of time that is required to recover from doing something.

And no matter what thoughts I have in my mind, no matter the optimistic attitude that I continue to maintain during the roughest times, deep down inside, this truth sometimes feel like it is eating away at the essence of the person who I am.

Having admitted as much to myself–while still sitting in the back of the taxi (which is actually the location of some of my biggest breakthroughs)–I also told myself that it was okay to accept these feelings, but that I also needed to counter them…because if I didn’t, the weight of these emotions, of doing “less,” would become too much to bear.

So I started my search for the silver lining. What good could I possibly find from such a situation? I am typing less. I am leaving the house less. I am cooking in the kitchen less. I am even reading less, as the fatigue often seems to take over every time I lay down with a book. Less. Less. Less.

Then it hit me, as I thought not about the quantity of the things that I am doing, but about the quality of the things that I am doing.

Yes, I am doing less. But the “less” that I am now doing has so much more meaning that the “more” that I once used to be able to do. Every email counts, whether related to personal stuff, RA Guy, or Show Us Your Hands! counts. Every day’s exercise session–even though they may sometimes last no more than five or ten minutes–count, and I know as much because these stretches have already done wonders for my shoulders and my back. Every trip outside of my house counts, especially since I am usually going to see a doctor or my physical therapist. Every meal that I make, even though they are less frequent than ever before, counts, because I am doing what I love.

Everything that I am doing counts.

And what matters the most is not how much (or how little) I am doing. What matters the most is how I am doing it.

And I am realizing that when I really, truly love every tiny little aspect of what I am doing, all day long, that I am actually in a place that is so far ahead of what I was forced to leave behind.

Once the taxi stopped in front of my physical therapist’s office, I stepped out. I was in more pain than ever, and I had just accepted a whole new level of “limitations” that have entered my life, but I was smiling.

Most importantly, I was happy.

Because there is a beauty to be found in doing less…and I had just found it!

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

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A Day In The Life Of Coping With Chronic Illness

It’s been a rough week, but somehow I am still moving forward.

Even though the list of things that aren’t working quite like I might want them to continues to grow (my hips are locking up, my eyes constantly burn, my left knee is grinding, my hands are increasingly being pulled out of shape, my thigh muscles are a mess, and the list goes on and on), I find myself turning to what has helped me so much during previous crisis moments: focus on what is going right in my life. And just as easily, I find myself building another mental list; a list that motivates me to keep moving forward, no matter what is happening to my body.

For example, I have lost five pounds in the past two weeks. I continue to do fifteen minutes of gentle stretching and range-of-motion exercises, exercises that have already shown great results when it comes to problems in my shoulders, upper arms, and back. I am surrounded by supportive and caring people, both in my real life and in my online activities. I, along with a great team of directors, are in the midst of strategic planning for Show Us Your Hands!…and given the opportunity and the time, I could continue to add an infinite number of items to this list of things that are going right.

That said, dealing with a flare of this nature is still very challenging; so much so that even though I have no doubt that I will continue to get through each new day, I am feeling worn down. Like those of us who live with this know all too well, there is a certain point where no amount of rest will fully re-charge our batteries…we just have to learn to continue to make the best with what we’re given at any moment in time, whether is comes to the amount of energy we have or how much we are (or are not) able to move our bodies.

Yesterday afternoon, I started feeling somewhat startled. Over the past couple of years I’m never had much of an issue when it comes to connecting to the inspiration that resides within me. Now that I continue to face challenges that are both known (in what they are) and unknown (in their severity), I’m starting to find the exact opposite to be true…and while I know I need to allow myself the opportunity to experience this wide range of emotions, I also know that I cannot allow myself to enter into a backward slide towards the darkness, and towards the depression.

I found myself returning to my trusty three-point plan; a plan whose power belies its simplicity.

1. Accept everything exactly as it is right now.
2. Figure out where I want to be, and what I want to change.
3. Do *everything* possible within my control to get there.

And yesterday, at least, step three meant finding an outside story of support and inspiration that I could use to re-build some of those internal feeling that were starting to slip away.

One friend recommended Flying Without Wings: Personal Reflections on Being Disabled by Arnold Beisser. (Unfortunately this book is only available in print format, which means it will be some time before I can get my hands on it.) Another friend recommended Strong at the Broken Places: Voices of Illness, a Chorus of Hope by Richard M. Cohen. My search soon led me to another book by Mr. Cohen, Blindsided: Lifting a Life Above Illness: A Reluctant Memoir. I decided I would start there. (As an added bonus, this book is available in audio format!)

One of the most frequently received comments that I receive from readers of this blog is this: “When I read your words it feels like I am reading my own thoughts.” As I started listening to “Blindsided” yesterday afternoon, while sitting in the back of a taxi on my way to physical therapy, I could not help from thinking the exact same thing.

“I am not just a collection of muscles and nerves, the wiring that has short-circuited my dreams. Who I am, my very identity rests in my head. It is from that fortress, my command post, that my being takes shape. Citizens of sickness, those who suffer from their own assaults on body and spirit, know disappointment. Ours is a common siege. The battle to control our heads is every bit as important as combating the attacks on our bodies.

The psychological war with illness is fought on two fronts, on the battlefield of the mind and in the depths of the heart. Emotional strength must be learned. I am a better person for that struggle. Attitude is a weapon of choice, endlessly worked. The positive impulse must struggle to survive in a troubled mind. I skirmish with myself, in an effort to shield my eyes from the harsh sight of the diminished person I believe I see looking from the mirror.

Self-pity is poison. There is no time. I need a future and refuse to become a victim. Too often we become oblivious to our own prisons, taking the bars and high walls for granted. Sometimes we construct them ourselves, and the barbed wire goes up even higher. Too many of the limitations placed on us are an extension of our own timidity.”

In light of a disconcerting trend that I have noticed over the past few months, where some individuals feel the need to attack others (including myself) for choosing coping methods that are different from the ones they themselves use–an attitude that was clearly demonstrated in a message that I shared on my Facebook page last night–I found the next paragraph to be particularly poignant.

“…this book is not about sickness, but about the search for emotional health. This is not the answer, but only an answer. Coping is a personal art. There is no element of science in coping, no formula or objective standard for measuring proficiency. Coping is measured against only how you want to live and what you think works.”

Here’s hoping for the best of success for each and every one of us, when it comes to coping with the challenges that chronic illnesses introduces into our lives. Here’s hoping that we all continue to learn and grow, not only as individuals, but also as the wonderfully supportive community that we are.

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

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Using The Thought Process To Your Advantage

Yesterday I was reminded that even though my rheumatoid arthritis is in fact progressing, chances are that with the positive mindset and coping skills that I have developed over the past few years, it probably has not advanced as much as it might have otherwise done so.

I really liked this perspective. Usually, when we enter the unknown or the unquantifiable, I think we often have a tendency to adopt the worst-case scenario. The same thing often happens when we look at some of the more tangible aspects. Hence, “my RA is getting worse” instead of “my RA is not getting as bad was it could, it I weren’t making such a concerted effort to manage my efforts, get lots of rest, and follow-up with all of my medical appointments, no matter how tired or fatigued I might be at any point in time.”

During an office visit a few weeks ago, my rheumatologist started telling my partner what a great patient I was, thus invoking a certain amount of shyness and red cheeks on my part. My doctor mentioned how me surrounding myself with so many positive and supportive people via my blog and Facebook page, and how my continued efforts with Show Us Your Hands!, have given me a hopeful outlook on life–an outlook that is certainly not in the majority, when it comes to the chronic illness patients that he works with on a daily basis.

My rheumatologist then turned to me and said, “because the truth of the matter is that no matter how much I try to help you (and that was a specific you, not a general you), the one thing that is always going to help you the most is that mind of yours.”

This isn’t to say that both my doctor and I aren’t determined to find the medical option that provides me the most relief, and it wasn’t meant to imply that my disease is more psychological than physical. We also were not saying that my thoughts are going to magically fix what is going on with my body. His words were putting a voice to the one thought that has gotten me through (and continues to get me through) the absolute most challenging moments, which is: the mind is a powerful tool, and I *must* use it to my advantage.

So as I got absolutely thrashed last evening, with a flare that would be off of all my previous charts, I was pleasantly surprised with how I was not only totally aware of my thought process, but I actually managed to remain in control it…even as I continued to experience pain and emotions that were completely new to me.

As my body started to shut down, and as my entire world shrunk down to the six feet between the top of my head and the tip of my toes, my thought process went just like this:

I know exactly what is going on, and I know exactly what will happen over the next hour or two.

Everything is going to be okay. (Which quickly got rewritten to: Everything is okay.)

This is me. This is my body.

My mind tried to go back to some of its old tricks. An inside/outside voice started to tell me that my body was in too much pain and that I needed to find a way to escape my body.

I countered this immediately. I told myself that trying to run away from the pain would not help my situation any. I told myself that I would turn into, and embrace my pain…a pain completely unlike anything I had ever experienced before.

I found a point of equilibrium, a point where even though I had lost almost full use of my entire body, I was at peace.

And as if that wasn’t a big enough payoff, I then heard a voice telling me:

If you can embrace this level of pain, there will never be another level of pain that you will not be able to embrace.

This, I am pleased to share, is how I managed to emerge from my most challenging flare yet (oh, how many times have I said those words!?) feeling not weakened, but instead feeling more empowered than ever before.

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

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