Rheumatoid Arthritis: Why Don’t They Understand What I Am Going Through?

By Cathy, contributor at HealthCentral.

For many of us with rheumatoid arthritis or other autoimmune diseases, we know the ups and downs of a relationship with disease. We know that we may struggle to get out of bed alone and then later in the day feel fine. We know that we may jump out of bed but two hours later rheumatoid arthritis has taken over and we struggle to get ourselves into our car. We may have wonderful plans with our family and friends and find that our bodies have been flaring for several days and we have to say “no” again to a fun outing. These ups and downs in our relationship with rheumatoid arthritis often make it difficult for us to understand, but also make it extremely difficult for those around us to understand. “How can you say that you can’t lift your purse by yourself when earlier this morning you worked out?” It is confusing to both ourselves and those around us.

In an effort to understand what is happening to our own bodies, I think we often spend a lot of time trying to make those around us understand what is happening to our bodies too. Although I do think it is important for our family, friends and even our coworkers to understand what is happening to our bodies, I think the problem occurs when we set expectations for those around us in how to understand our disease and how to respond to our disease. In our own confusion with disease we often set up expectations for those around us that are impossible to achieve.

Read More: http://www.healthcentral.com/rheumatoid-arthritis/c/311516/149335/don

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Finding Peace In The Pain

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!


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