The week before Christmas was crummy. I was cold and sore and my mind was fuzzy. My skin burned and my neck was hivey. I lay awake all night, my brain humming faintly. As sunlight crept into my bedroom, I burrowed deep under my covers and slept through the daylight. I woke to darkness, feeling slow and sloppy, dripping with sweat.

Two days before Christmas Eve, I drove my car to get my hair done. I didn’t feel well. I knew I would have a reaction that day, but I was hoping I could delay its onset until I finished my errands and made it home. I couldn’t. In the middle of my appointment, I called around until I found someone who could pick me up and drive my car home. I diluted and pushed IV Benadryl in the middle of a salon while rich housewives cast sideways glances.

The ride home was the setting for my personal favorite type of mast cell reaction, in which I’m uncomfortable in my own body, so exhausted that I am falling asleep, and unable to find the right words to express what I want to communicate. I collapsed into my bed and slept for hours, the heavy and dreamless sleep your body produces when it is too exhausted for imagination.

It has been less than two weeks since I wrote a post about how much better I was feeling. I couldn’t even get out of bed.

This disease has stripped away all the meaningless noise surrounding me. All my whimsical desires are gone. I don’t have any dreams left, except the very big ones. But how can I do something extraordinary when I can’t even stay awake?

In my mind, there are no limits. I can wake up every day. I can eat normal food. I can walk with stars. The limits are in my body. I strain against them, stiff and cold, like iron bars.

The Saturday after Christmas I developed sudden, mysterious and massively painful back pain. I spent most of the next week in bed. These crashes feel harder than they used to. Every time I land on my knees, the scrapes sting longer, scar deeper.

It has been two weeks since Christmas. This week I went into the office four days, a feat I haven’t achieved in almost a year. I have had a big week. I cooked meals and did work and organized medical stuff. I watched documentaries and did laundry. I started the enormous task of organizing my life for the weeks after surgery during which I will be largely unable to participate. I have slept every night this week and woken around 7am. I am tired and sore but it’s manageable.

I can’t know how I will feel in two weeks. This constant inconstancy is so hard.

3 Responses

  1. Dani January 10, 2015 / 12:06 am

    Hugs and support to you.

  2. Judie January 10, 2015 / 9:09 am

    Big Hug Lisa,
    You contribute so much to the mast cell community, I am sorry you are having a bad spell. I too am in pain most days, although things are better and I am on less meds with the xeljanz, the reality of the day to day living with this disease as well as secondary RA and EDs is humbling. I try to cherish the good days, one of the big frustrations is I always know the proverbial shoe is going to drop and I will have a setback from a reaction I just don’t know when or where. I do feel understanding and having an accurate diagnosis of what is going on in my body is helpful but nonetheless it can be very frustrating. My symptoms have improved in general which I am thankful for BUT when I have reactions they seem more intense then they used to be. Yesterday I took a walk in my neighborhood as I always feel better in general when I move this body only to later having full body pain in my muscles, spine and neck, I push on bc next time I will have zero negative reaction and I feel better when I exercise. Today my neck is painful, all from a walk!
    Let us know when you have surgery and after so we don’t worry of your absence.

  3. Lucy January 10, 2015 / 2:39 pm

    Thank you once again for verbalizing how this feels and normalizing this very abnormal disease for me. Acceptance is the key for me, but some times I have a hard time recognizing that that is what I must do. I to live vicariously through all my planning and goal setting, only to find that I accomplished a tenth of what I used to at the end of a day. I feel as though I have faded from the career and life I used to have. I still dream of being a water color painter and writing children’s books, but mostly I end up cuddling on the couch with my little dog Lola while I pace my self through house work, meal planning and trips to the vegetable isle and doctors offices. I appreciate all or you communications.
    Happy New Year!
    Keep supporting us all with you informative letters, I look forward to reading them.

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