Sunday, January 22, 2012

How things have been rolling

Happy end of the "snowpocalypse" to those who live in the western Washington region. It was pretty until the power went out and then well... No electric blanket makes for a super cranky Katyann. I am not a self heating person and generally require a lot of warmth to feel comfortable. Maggie maye was my stand in but I was thankful when the power returned because goll that dog can snore.

Things have been okay with me health wise. I have been having some small discoid issues along with the swelling now. Little round rashes are appearing here and there. As long as I do not turn into a Dalmatian like I did with my first period of skin involvement I will be fine. If I do... I guess I know what I will be for the next costume party I go to. The swelling in my feet and ankles has still been intense. It seems to get much worse as the day goes on and by nightfall I know once my shoes are off (if I can get them on in the first place) they will not be going on again that evening. Hair has been falling out everywhere, joints have been stiff, puffy eyes depending on the day. Just more of the same jazz. There has been an unpredictable cycle in the past week of okay/not okay than back to okay. I can be perfectly fine for a few hours and then take a nose dive. Especially with the pain... A couple nights ago I went to sleep feeling alright but woke up a few hours later in a tremendous amount of pain radiating through my entire body. Today I had a fair amount of pain in my spine and hands but I am getting better at tuning it out as best I can during the day. However at night when I slow down and settle my mind... The pain becomes a lot more noticeable. It's like being distracted while getting a shot, the shot doesn't seem as bad. Except for in this case it is a never ending full body stabbing.

In the winter months my raynauds tends to get worse. I wear woolen hiking socks, I exercise as best I can and try to keep warm. However with the swelling and poor circulation a bit of one of my toes has turned black. Permenantly so. Does it hurt? No. Does it look good? No. Does it concern me? Not really. This is all just part of living with raynauds and lupus. The most awful feeling I experience on a daily basis is when I take a shower and can feel my toes tingling. In my mind I know they are tingling because they are warming up and finally getting the proper circulation they need. At night I have been sleeping with my electric blanket on its highest setting and still have had troubles getting warm. Unless of course I am running a low grade fever, as I do sometimes and then even a sheet can be too warm.

My spoons have come and gone as they like. Some days they're around and then other days they go skiing. I have been getting some curious questions about how I delegate my spoons or how much a certain task takes. First off, I always have a running list of needs and wants. Needs always come before wants. For example: I need to take a shower, I want to sew. But I cannot do both today due to the number of spoons I have. What makes me mad and frustrated is when someone will spring a size able need on me (my mom is a master at this) and I already have all my spoons budgeted out for the day. In most cases I will do the sprung upon need for the other person but it comes at a cost of not completing another need that probably really did require some attention. If forewarned a day or two in advance about a desired need, I am able to plan and factor it into my spoon budget for the day. Making things go a lot smoother. Many people probably do not think in their heads "do I collect eggs or take a bath today?" in terms of energy, maybe time though. On my list of daily needs is eating, hygiene, feeding animals and medicating. Those are the most raw and primal things I pretty much need to do in a day. Sleeping is a zero spoon task. Second level needs might be dressing (lounge clothes) or brushing my hair. There has been many a day where I have not brushed my hair or gotten past being dressed in lounging clothes and I have exposed myself to the general public. Third level needs might be something like exercise or smiling. I know this sounds slightly Neolithic, but it is true. Then comes the spoon values for living through the day. Something like typing on the computer I can make one spoon last a very long time, where as that same spoon could be burnt in a matter of minutes by getting the mail. Generally the more mental or physical computing power it takes to do something, the more spoons it takes. A spoon is generally good for: eating a meal, doing a simple task (taking out trash, practing piano for 30 minutes, etc), typing on the computer for an hour, dressing/grooming, a shower, or sewing for 30 minutes. A two spoon task might include but is not limited to: toaster fires, tending to my flock of chickens, reading a book for a half hour, driving to and from school, a calm hang out time with a friend, singing, or doing laundry. There is generally one three spoon activity per day in my schedule. Three spoon activities include riding Cajun, running or going shopping/out and about. Four plus spoon activities are rare for me to participate in but on occasion something like running an event or going to the fair. Subtract spoons for stress, flares and pain. Generally my spoons are halved or less when any of the afore mentioned are in play. Basically my spoons are a very delicate balancing act where I feel like the circuse performer with the skinny little dowels which hold up spinning plates.

Inside I have this burning desire for control and stability in my life. The ability to do what I want, how I want and when I want. I am not talking about it in terms of "teenage liberation from parents death grip" type meaning. What I mean is to be able to get up and do what I want to do in the day without having lupus changing the schedule constantly. To be reliable and to feel in control of what is going on. To not have to "see how I am doing tomorrow and then I will get back to you.". With a crucial element of my life out of my control I feel like I am sliding away. Admittedly lupus does not have the steering wheel of my mind... Nor has it found the neutral gear for my body. But this whole changing all the time thing has been hard on me lately. Not that it hasn't always been hard but I feel worn thin in some places.

Many spoons, lots of hope and a peaceful week I wish you all. If you are wondering why I am up so late on a Sunday, the "not okay" pain thing took over a couple hours ago. Thankfully good drugs are at my disposal and I did choose to use them, so this is only a temporary time of great discomfort for me. Agape :)

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