Tuesday, November 15, 2011

Perfectly Sick

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!!


Anonymous said...

Well, pretty lady, as always your openness and honesty is a blessing to read. I am so sorry you are having such a difficult time and feeling 'perfectly sick' but it is a blessing that you were able to attend the baby shower. You are truly an amazing woman and I am thankful that I can call you friend. I am keeping you in my prayers and you are always in my thoughts. I love you!

Theresa said...

Dear, sweet Alice. What would I do without you in my life? Thank you, thank you.

Anonymous said...

Oh dear one, you MUST treat yourself with the same respect you give others. I preach from the choir I tell you. I am a type A who has not yet learned ALL the limitations I must adhere to. I push the boundries then cry when it hurts quietly, privately. My husband continues to tell me he would be happier with a swept floor and no more if that was all I could do. Bless his heart and he means it.

since becoming ill, I too have difficulty putting sentences together, spelling errors all over... Now, I let it go. If someone is going to critique my words rather than read and share my thoughts as a whole, shame on THEM. I passed english lit with an A thank you... back when I was HEALTHY. Now, I adapt. I no longer go back and do over (except in my sewing/business-the customer wants perfection). I let it go for another day another moment.

I take in the little things which mean the most, lots of water, rest, naps if need be, washing my hair every other days... I have very thick irish indiana hair. WHOA... forget every day.

You just rest easy, taper slowly and be thankful for just TODAY. Hugs. Tammy

Theresa said...

Every laborious minute I put into writing that silly update was worth just hearing your words Tammy. Thank you. I'm so very weary of being sick, and finding myself in yet another round of grieving. Just when I thought the business over... When our lives are committed to making the best...living to the fullest, taking care of our families - expressing our pain comes slowly. Your words bring comfort. Thank you.

deb aka abcsofra said...

I do sick one hour at a time. With chronic illness that is how fast it can all change....in a heartbeat actually. And it has, and it does, and it will. I really believe that the toughest thing for people with chronic illness is learning to let go of expectations. This isn't to say we should give up on our hopes and dreams but rather that we shouldn't box ourselves into believing we can accomplish things in a certain time frame. Flexibility with time is my key to unlocking everything. It has taken me 13 years to learn to dance with ra and time. It is finally becoming a harmonious dance. Slow and laboring at times, faster and in tempo at others. I no longer constrain myself to time and I try to never, ever beat myself up over not finishing something. Take your time in being sick. Your body, your heart and even your soul will let you know when the time is right to move on. Feel better and I am truly sorry to see you having such a hard time of it lately.

Theresa said...

One hour at a time - no doubt! Having a good run of it has a tendency to give the illusion of control. Funny how that sneaks up on us. I think where I get most "unwilling" to accept things is in regards to my children. The look in their eyes when they see me declining just tares at my heart. I want nothing more than to answer their questions with only good. And it's not that they don't understand - they're good kids and have been around the block enough with all of this to know that life isn't always fair. They know the drill. But you know what - I don't WANT them to know the drill. Plain and simple. The mother in me wants nothing more than to run like the wind with them, hand in hand, throughout this crazy life.
But here I am, like it or not. And it's a good crazy life nonetheless. And I DO have so much to be thankful for. Just look at the beautiful circle of women that surrounds me... unbelievable. I thank you all, from the depths of my heart I thank you. Just so you know - I lay my head down on a very soft pillow just knowing you are there.

Anonymous said...

Hi, it's a blessing to read you. I wish to give you a big, big HUG !!

Theresa said...

Jazzcat......HUG accepted!!!