Wednesday, October 22, 2014

The wrinkle in my plans...

RSD can really throw a wrinkle in any plans you make.  A few weeks ago I was getting ready for our town wide yard sale.  I wanted to get rid of a bunch of baby stuff that I have held on to and four large garbage bags of stuffed animals.  I took a whole day going through our attic storage.  Another day was spent washing the old baby clothes, sorting into piles and folding.  I pulled out our old DVD collection and books that I don't have room for on my book shelf.  Then we had the stuff cluttering up our dinning room for almost a week!  I had the perfect plan.  I even researched how to price the items fairly.  I poured so much of my energy into this project.  However the wrinkle came in the form of one of my more intense RSD Flares.  Five days before the yard sale the flare started but I thought, "Okay, I have everything else prepared so I can take a few days to take care of myself and hopefully be well enough to do the yard sale.  I got this!"  This flare really kicked my butt.  I spent the first few days between bed and couch.  Gabe helped me with the simple chore of packing lunch boxes and Leo came home to put Lucas on the bus and get him off the bus.  By the time Saturday rolled around I was well enough to walk using a cane as long as I didn't have to stand for more than 5 minutes.  Fortunately, the yard sale was mostly rained out on Saturday so I only had a few hours outside and Gabriel was a big helper!  My in-laws came over near the end of the sale.  My sweet Mother in law walked into my messy kitchen and cleaned it up before I could stop her.  Leo brought home dinner and I ate with my leg propped up and wrapped in my heating pad.  The warmth of family uplifted my spirits because as much as I hate to admit it the flare was beating on my emotions.  I set up my tables again on Sunday.  I made enough sales to satisfy the effort but I did not get rid of enough stuff!  Then to add insult to injury I started a cold to accompany my flare up.  Perfect!

My flare up lasted 10 days.  Even though I still had my cold I felt like I was walking on a cloud just being able to walk without pain again!  My cold still has a lingering cough, damn mucus, but mostly I am just now feeling better.  All in all that means I have been unable to fully do "my job" for three weeks now.  Imagine how far behind you could be for the generalized house hold responsibilities; laundry washing folding putting away, cooking, dishes, dusting, vacuuming, floors, and basic organization.  Don't even get me started on email responses!  Today after my shower I realized we are all out of clean towels, and when I went into the kitchen I had to reach into the dishwasher for a clean coffee cup and spoon because there weren't any in the cupboards.  Needless to say my house needs a deep and thorough cleaning.  Yet, I hesitate to launch into this cleaning headfirst because it is raining out.  Why would the weather stop me from cleaning my house?  I know my body and I know my RSD.  Typical agitators are: Weather, Stress, Physical Fatigue, and soft injuries.  Any combination of these could trigger a flare especially when you factor in that I have just recently recovered from a flare.  Right now I am being cautious because at the end of next week is Halloween.  I cannot afford a flare up right now.  I have managed them in the past for Halloween but this year I believe is going to be a big year for trick or treating with Lucas.  He is finally at that stage when he knows what it is and is excited for it!  I am excited to take him house to house, and hear him say "Trick of Treat!  Thank you!"  Yes, I know this year he WILL be able to say those sweet words!  Then after his pumpkin bucket is full we will come home to hand out candy and see other kids in their costumes.  I do not want to sit on the sidelines this year and miss out on hearing him say "Trick or Treat!"  It is also a big year for Gabe.  He is at the age where he doesn't want his parents trick or treating with him, he wants to walk with his friends.
Do not get me wrong,  I want to have my house clean.  It is on my priority list!  I just have to be careful about how I go about it the chores that need to be done.  I have to take my time and not just plow through them as others would.  That is why I am taking the time out to write this blog post.  By sitting here and writing I am being proactive at pacing myself.  Before I sat down I unloaded the dishwasher, and re-stacked it.  Now I am ready to get back up just in time to get Lucas from the bus and finish cleaning the kitchen.  What is funny is that I will be cooking as soon as it is clean again, creating a fresh mess for later.   Such is life!  Tomorrow, I will conquer other household chores using the same slow paced process.  I figure my house will be back in order before Halloween!  As long as RSD doesn't wrinkle my plans again.  

Thursday, October 2, 2014

Boo Boo Leg

BooBoo Leg is how we refer to my bad leg with Lucas.  A few years ago we sat Gabe down and told him that Boo Boo Leg is really called RSD, Really Stupid Disease.  Both terms are fitting.

Tuesday afternoon my leg burst into pain.  Sometimes it is just that easy.  One minute I am fine and the next my leg is filled with flames of ice where I cannot bear any weight.  Maybe God did shine a little light that morning because I prepared dinner first thing in the morning, Chili!  The chili was already simmering on the stove when my pain came back.  Lucas was already home from school so I didn't have to worry about limping outside to get him from the bus.  I sent Leo a text and when his work day was done he came home to take care of me.  I kept my position on the couch while Leo fixed my bowl of chili and I talked him through how to fix Gabe's bowl of chili (half rice, half chili, sprinkle sugar on top to lessen the spice and no cheese!)  After dinner Leo gave Lucas his bath while I stayed on the couch.
Wednesday my leg was not any better.  It was a half day of school and I already planned on keeping Lucas home.  We had plans but my leg changed them, still it was easier to keep Lucas home than to get him ready and on the bus when I would have only a few hours till I had to get him off the bus.  Gabe went to school, it was Student Council Election Day and he was running for Treasurer.  He had a great speech prepared and little things to pass around.  I am so proud of him.  Gabe did not win.  Lucas stayed in his pajama shirt all day with the addition of jeans being put on.   I stayed on the couch.  I fixed the boys breakfast but Leo brought me my breakfast and lunch.  Leo fixed Lucas' lunch and when Gabe came home he fixed his own lunch.  I stayed on the couch.  The only times I got off the couch were to help Lucas in the bathroom.  Yesterday I was "one with the couch".   Gabe made jokes about me being a couch potato!  When Lucas fell asleep on the couch I called Leo and he came to carry him up to my bed so I could go up to rest too.  Yes, I spent all day on the couch yet I was tired, needing to lay down in bed.  Being in severe pain is hard work on the body.  I laid down watching tv for a few minutes then turned it off to sleep, I napped for about two hours.  There was that moment, right at waking where you are still sort of sleeping, that I did not feel pain.  In one second my body caught up with my mind I felt the full force of pain and even though I woke with the need to pee I didn't want to move.  I understood, putting my feet on the floor will cause even more pain, standing up would cause more and then the issue with limping 20 feet to the bathroom.  At that moment going to the bathroom was more trouble than it was worth.  So, I laid in bed and turned the tv back on.  I needed a little more bravery before I could deal with getting out of bed.  Last night Leo served me breakfast in bed and took care of the kids even though they kept visiting me.  My kids are awesome!  They cannot get enough of me.  Gabe laid in bed watching TV with me while Lucas kept coming in trying to get me to play with him.  That is what is great about this family I have, I have their full support and love.  I usually don't let the pain keep me down but too often these flares have a habit of knocking me down.  I missed choir practice last night.  I could have pulled out my cane, pull my hair into a ponytail, put on some loose fitting clothes and swallow back some pain so that I could sing but Leo could see that it would be too much effort knowing I was better off resting to give my body a chance to recover from this latest flare.  Leo made the call for me and allowed me to become the hermit.

Today is tough.  I have a responsibility tonight.  It is Back to School Night for Lucas' school and as a room parent I have a meeting afterward to discuss responsibilities.  My heart doesn't want me to miss it.  My leg on the other hand is barely better than yesterday.  I have an inward battle with myself.  How can I go to this meeting when Leo had to get Lucas dressed and on the bus this morning?  How can I go to the meeting knowing that I am spending the morning on the couch?  Plus, there is the issue with my vanity.  If I were to go the only way I would be able to walk is to use my cane and while I have come to grips with using one I still do not prefer it.  It always produces questions and concerns.  Since RSD/CRPS is not a household name nor easily explained away it becomes difficult for those that know me without needing a walking aid.  Still, I want to go!  It might seem absurd to most people.  Back to School Night and being a Room Parent are parts of my life that are about ME, not Marti Ann with RSD/CRPS.  It might seem absurd but in my mind not going tonight feels like I am letting RSD/CRPS win a battle.  Leo was not happy.  He rightly believes that I should miss it because it would be too much on my body.  During a flare it is often best to just rest.  I also have a big weekend coming up.  We are already registered for the Town Yard Sale and I will need to be on my feet most of Saturday.  On Saturday I will not be able to be a Couch Mommy.  I need to decide if going tonight will hurt me more than soothe my ego and if it will have an affect on how I will feel come Saturday morning.  What you might not expect is that this little decision could have such a large affect on how long my flare lasts.  Who knew that going out of the house for a few hours could have a large affect on your health?  My wonderful and amazing husband has now offered to attend Back to School Night for me.

Leo and I make a great team.  I honestly don't know what I would do without him.  He gets me which is what makes us work so well.  He works his butt off all day and still finds it in him to come home and pick up the pieces that my body forces me to drop.  I might have machine parts inside of me but I think he might be more Machine than even me!  Dishes might still be sitting in the sink and we might eat more takeout or leftovers but when my leg is hurting Leo takes over so that I can rest.  He will work 10 hours or more on a week day and then come home, clean the house, take care of the kids, take care of me and still be awesome.  I am a lucky woman!  I cannot complain about my life.  I can complain about my pain and how it complicates my life but I am still a very happy woman.  I am a happy woman but the pain does a number on my emotional status.  I am constantly worried about Gabriel, he does not cope well with my pain anymore.  His age has given him awareness that he has a Mommy who is not healthy.  I worry about Lucas and if I am doing enough for him.  I worry about Leo and if he is doing too much without a support system for himself.  I worry about allowing myself to fall into a pit of despair.  Hey, it is not that easy living with constant burning pain that feels like your leg is filled with ice and the slightest touch feels like agony.  I never know how long a flare will last.  I made a vow years ago to not let the pain drag me into the deep dark hole again but there are days and circumstances that make it harder.  What keeps my head above the water are three men whose lives revolve around me.  If you only get three wishes in life then I have already received mine; Leo, Gabriel and Lucas.  Three amazing men who make my life blessed.