Three video segments featuring Sara (a.k.a. Single Gal with RA) were just posted under “What’s New” on WebMD RAtv – be sure to check them out!
My Invisible Pain – Working and living with RA in New York City is hard for Sara, especially when so many of her RA aches and pains are invisible to others.
City Living with RA – From walking to climbing stairs to carrying groceries on the subway, living with RA in the Big Apple is challenging.
Navigating the Dating Scene – Twenty something and living in the Big Apple, Sara has to decide when to tell potential boyfriends about her RA.
Hi. I’m Wren. “Rheuma” (ROY-ma) is the German word for rheumatoid arthritis. When I was diagnosed with the disease, I lived in Germany, so that’s what I got used to calling it. For me, it fits.
This blog is about rheuma and how it affects those of us who live with it every day. I’d like this to be a place where people who have it can talk to and support each other; a place where those who want to learn more can do so; and a place of quiet, warmth and peace, a haven away from the hustle-bustle of the world.
Be kind to yourself. Speak up. Remember you are your own best advocate.
Rheumatoid Arthritis Guy recently realized that he was one half of an unhealthy relationship. I used to think that everything was going just great…but I now know that this was not the case. So, I decided that the best thing for me was to bring an end to this relationship.
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!
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