The high water mark

I spent most of the latter half of May in bed. People woke me up take medication on schedule and I fed myself small meals periodically. I watched movies and TV and drifted in and out of sleep, pain killers and Benadryl making the world soft around the edges.

Every day, even as I felt myself healing, my strength and stamina waned. My legs felt weak when I stood up. I got winded walking around the block. Holding my head up felt difficult. All of the stamina I had built up before surgery was gone. All of my progress was undone.

I spend so much energy trying to get somewhere I’m never going to get – to this place of physical health where I can exercise and sleep at night and wake in the morning without bleary eyes and a pounding headache. I have been trying to reach this milestone since well before I knew I was sick.

I’m not even sure I know the closest I ever came. What is the highwater mark of this particular struggle? Was it the few weeks before my last birthday when I was sleeping at night and waking without an alarm? Or that really good day last September? The few weeks after my colostomy healed? I don’t know. I’m not sure there is a high water mark. Everything is relative.

Living with a sickness that causes regular setbacks – and requires treatments that sometimes do the same – is difficult. This halting start has become a sort of rhythm, the timing an inherent part of this experience. I’m never getting anywhere. I’m always getting it wrong. It feels like if I could do the right things in the right order that it would make a difference. `

But what if every time I started again, it didn’t mean that every time before was a failure? All those times before, all the moves in the wrong order, kept me alive and participating in the world. How wrong could they be? What if the high water mark of this struggle is just being alive?

Reversing the ostomy was the right move. I am noticeably less inflamed and my body is responding. I am having fewer reactions. I am eating without vomiting. The squishiness, the swelling weight is melting away so I can see the features beneath. I am still in pain, but I think I always will be.

I’m getting stronger. It’s slow, but it’s happening. I can walk for twenty minutes now, Astoria happily padding along beside me. I’m short of breath and sweaty when I’m done, but I can do it.

Maybe it’s time to stop blaming myself for all the times I had to start over. Maybe it’s time to see these setbacks as opportunities to understand my body and learn from it.

Maybe this is enough.


2 Responses

  1. Loren June 16, 2015 / 4:13 pm

    Mast cell diseases seem so baffling. I can understand your battle with making some progress only to have it seemingly all taken away.

    For me, I try to latch onto something that works and follow it until it doesn’t, until I’ve found a few things that work that I can stand on.

    I hope you continue to make progress, you’ve been a beacon for the mast cell community.

  2. Karen Neill June 17, 2015 / 5:58 pm

    What a lovely piece of writing, Lisa. I agree- maybe there isn’t anywhere else to get to- maybe this is the destination. I’ve discovered that my destination is actually quite lovely- it’s not where I expected to be, but it’s actually an ok place! It inst the prime camping spot that everybody wants, and that is advertised in the magazine, but it has it’s charms- it’s closer to the river, there are fewer bugs, and it’s a lot less noisy! Good for you for being so wise. I think serious and prolonged illness can force a person to appreciate what they do have, to look at their life and say ‘What is important to ME? What do I need? What do I really want?’. I’ve thought a lot lately about fighting my illness versus maximizing my life, given the parameters I’ve been dealt. It sounds like you’re having a similar revelation.
    I’m so glad that you are beginning to heal. All that work you put in before your surgery will pay off- it will make it SO much easier to get back into shape. Yes, you can loose a lot of muscle mass being bedridden- but if you have a lot more to begin with, you’re left with some. Take good care- such good news that your digestive system is handling it as well!

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