Building a Home in the Middle

I am struggling these days to know what to feel.  My inner voice speaks to me that this is not a question that I can find an answer to, but that I need to recognize and accept the feelings that naturally exist, however, one thing that has definitely changed (developed?) within me since the first day of hearing the word “chronic” leave my doctor’s mouth, is this strange ability to bend, hold, and store my feelings and guide myself through each day as if I am a matador guiding them in the direction that I think is appropriate for that moment.  It is such a constant challenge, this tight rope act of balancing emotions without having any idea from moment to moment, day to day, where things will be.  All of us have unpredictable lives to some extent, but in general can usually make some sort of plan and expect that unless some rare, unforeseen circumstance creates an obstacle, that you will most likely be able at the lest wind up in the general direction of where you intended.  With chronic illness, you constantly have to re-route, re-think, or just surrender to what you can or can’t do in that moment.  This creates an interesting dynamic when it comes to emotion.

Often a morning of mine can look like this.  I wake up and I evaluate where I am, before I even open my eyes.  I coach myself to give the morning a try even if I feel horrible.  I start to get ready and realize that it’s not so bad after all!  Today’s gonna be one of my “good days”!  I start to plan for the day as I get my shower.  I am going to get ready, run errands, make a few phone calls, and then go to the park with my family.  It will be a good day.  I make a few calls, send a few texts and solidify my plans.  As I start to dry my hair, I begin to realize that the energy that I felt moments ago while I was taking my shower, is quickly converting into a feeling of fatigue.  I am struggling to continue to hold the brush and hair dryer because my arms are already so week and tired.  Disappointment immediately sets in.  I have already committed to myself, my client, my family, to be available to them, and in less than a 30 min period I see that I am in over my head and I need to rest.

This scenario can be played out in many different ways.  I can begin the day feeling horrible and cancel any commitments, knowing that I need to respect my limitations and get some rest, and then suddenly I can have a burst of energy and relief from my symptoms and a desire to participate.  This may go on for an hour, a few hours, a few weeks, a few minutes, it is always unpredictable and keeps me “living for the day”, which is great in theory, but when you are setting goals, and when you are dealing with people, sometimes you need to see a little further down the road.

I told my husband last night that I feel like I am driving in the fog.  I have a limited view of what is in front of me, and I honestly don’t even allow myself to strain to see past that anymore.  It hurts too much to put myself through the disappointment that comes from setting goals, or making commitments to myself or others in my life and to repeatedly feel like I am having them stripped from me.  Not to mention, this is also hard for friends and family as well.  When my family makes plans, they have learned to plan without me and if I am there that is great.  I have lost many friendships because of my need to have an “out” at any given moment when it comes to social plans.  It is tough.  People have to have some definition.

So, this week has actually, very honestly been a great week.  I feel pretty well, I have been able to get a lot accomplished, both personally, and in my work…. It is a good week.  But yesterday afternoon turmoil began within me when my youngest daughter got home from school and was settling down to watch a movie (which she is used to doing so that she and I can both have some afternoon downtime), and I announced to her that I would like to go swimming with her.  The confused and excited expression on her face both made me feel enthused and at the same time it shot a sharp emotional pain into my heart.  -You see, I can’t usually do things like this.  If I go to the pool, the heat tends to set me back for quite some time, and if I DO go I definitely don’t get in because the pain in my body always feels so intensely aggravated by the cold water.  As we were getting ready to go, she confirmed repeatedly that I was going to swim WITH her.  “Yes, mommy is going to swim too.” I would say, over and over and over again, feeling pleased with my choice and at the same time so sad that I had to reemphasize this so many times because she was afraid to believe me.  As we went to the pool, I commented on how cold the water was and how cold I felt.  She very quickly says “but don’t get out now please?”  She watched me so constantly and cautiously as we played together to make sure that I wasn’t going to get out and cut our time together short.  The time of connecting with my sweet girl was unbelievably precious and touching to me.  It made me realize again how much I miss this.  It made me long for more of this so strongly.  Of course, I always want to spend more time with my girls, but I have learned to compress those feelings and put them aside with the practical reminders to myself that I can only do what I can do… and in effort to not carry guilt around with me all of the time.

So here I am, in this good week, at home full of pain and tears.  I am so terrified of moving into this place emotionally and just absorbing and enjoying it, out of familiarity with how this typically goes.  This isn’t new territory to me.  I have had good weeks before, good months even, and I appreciate them so much, but as I begin to move into them as if they are a permanent place of residence, I put down roots, and brick by brick I build a stronger, more solid structure.  I add to my calendar, invest more deeply into my work, my relationships, and then… inevitably I get hit.  I remember so quickly that I am sick.  I had forgotten for a while.  That solid, beautiful structure that I was building now looks like giant, heavy, and intimidating work that has to be undone.  Those bricks represent progress at work, closer relationships, and appointments on the calendar, and each one translates into a number of phone calls that have to be made as I undo my commitments and explain that I have to push the pause button for an undetermined amount of time.  With each call that I make, with each sale that I lose, opportunity I walk by, and with each explanation that I give to my sweet girls, and devoted friends, it becomes more and more discouraging and painful.  And I feel that it’s possible that I got ahead of myself.  I jumped in too deep.  I tell myself that I need to learn from this, learn to keep an easier, less involved lifestyle…but… that’s very much the opposite of who I am, and I know that.

One foot in front of the other today I am walking on this thin rope that balances between the “sick me” and the me who is living life actively.  I am absolutely full of panic and fear to allow myself to settle into either side, so I am clinging to this rope desperately.  I know there are healthier ways, but I am a work in progress… and today this is what I’ve got.  I look out to my left into the beautiful view of this lovely lovely life full of smiles and cuddles and great conversations and a successful business woman providing for her family, and then I look over and see the view on the right.  It is so familiar, but so trying.  Even when I am there, I sincerely try to have a good attitude and positive outlook, but I never for a moment stop longing for the other side.  Is it possible to build a life in the middle?  Can I sit on the edge of a canyon and build a home there?  If I do, will anyone sit with me?  At least build a tent there for passing through?  At this moment that is all I am ready to do, and all I am hoping for.



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