Do not wish to be anything but what you are, and try to be that perfectly.
-St. Francis de Sales
How are you perfectly sick? Honestly, I ask myself that question on days like today, weeks like this week, months like this month. I believe St. Francis with all of my heart, but it's not quite the perspective I like. I don't believe that if you read further on in his prayer you would come to something like..."unless what you are is not pleasing, then pray with all your might for something else." Not really sure that was what he was going for.
The truth is, these are difficult days. Tapering off the prednisone has been challenging. I feel as though I am to a point now where I have to continually and very carefully weigh out the benefits and risks to both getting off this medication as well as staying on. There is a point at which suffering is indication of something worse going on, not just adapting to a higher level of tolerance.Which, for a past marathon runner, can be a dangerous level to judge by. I have appointments next week that hopefully will help me with these decisions.
For now...it's a rough road. It's interesting to me, I posted the picture on the right to Facebook this past week and got all sorts of really wonderful comments. (thank you!!) I was extremely fortunate to be able to attend my oldest daughter's first baby shower (where the picture was taken). The very first grandchild! I wanted nothing more than to just be there with her, and as the day would have it, I managed through the entire event. It was the only time I left our home all week. Getting outside is becoming progressively more difficult. And let me tell you, I was beyond exhausted and on the verge of "giving up" all day. I see that in my face, but I'm not so sure anyone else does. That's what I hope for at least.
You can't tell, yet, that I am losing my hair. I spent my entire life wishing for less hair, especially when I was a teenager. The few times I dared to get a perm, it ended up costing me hundreds of dollars, literally! That's how it goes when they have to open five boxes to get the job done. Two hair dressers still could not cut down on the time...or the tip! Today I am thankful for that overabundance. It's giving me a few more days. I've resorted to washing it only every other day, and have to do so in a laundry tub with a garbage can next to me. I pull handfuls out at a time. I'm no longer able to wear it down as it ends up everywhere. This loss is especially tough. I guess they all are.
Since becoming sick, my world has become pretty narrow. I'm okay with that. I actually have adapted to it well and have found a certain comfort in it. It's a balance I've gotten fairly good at. Some of the ways in which I find that balance are in my ability to read, meditate and write. Things I really struggled to find time to do when I was healthy are now the cherished moments that make up my days. When I get sick like I am right now, cognitive difficulties have a significant impact on my ability to do all three of these things. Combine that with extreme fatigue, pain, nausea, diarrhea and headaches and quite often these things are not possible at all. Even writing this post today I find it difficult to spell, put sentences together and comprehend things I have already written.
So where does that leave me? How, dear Francis, am I to be perfectly sick? First of all, just admitting it to you, the reader, is a start. Sitting in front of this computer screen for hours on end, trying to make the best of things, trying to come up with some really great message, trying to be something other than what I currently am, is not going to do either of us any good. Step one, be honest.
Step two, be kind. I'm making a promise to you to be kind to myself. Which means letting go of some of my unrealistic expectations. The ones that might have been possible two months ago, but now are just making me more sick. Part of that will mean letting go of the idea I have in my head of meeting Theresa's blog post quota for the week. Another part will mean giving more responsibility to my family and friends. I've decided that instead of comparing myself to the past me or attempting to meet some expectation of the future me, I will give today what is today's. If that means rest, then it's time to rest. Period.
And lastly, just be. I told a friend the other day that I actually do better (I was speaking in regards to my emotional and spiritual health) the more sick I am. That's actually one of the gifts of having lupus for me. Illness has a way of reminding us that we are not the ones in control and in doing so, has a way of honing life down to the most important. When I am on the upward swing - well, that's when the old me kicks in and I start taking things for granted, moving too fast, missing out on the present. So for now, it's time to just be. And if that is sick, then may I do it perfectly.
Some good news! The Maple Floor Project is complete!! I have my living room back and the bedroom, closet and hallway are all put back in order. What a labor of love, thank you dear husband of mine! We are already breathing easier and sleeping better. Here are a few pictures of the finished product...
(After Thanksgiving this Pergo laminate ("fake wood") will be moved down to Emma's bedroom and Dave will be putting maple in the living room as well!!)
I am thank-FULL!!