Haven’t posted for a minute. I’ve been having a bit of a flare. Fatigue is a relentless thing. Pain is more than usual with bursts of time where I get that ‘Oh dear, this is not good’ feeling. The one that starts with a central ache that blossoms into a burning that reaches through your body; tentacles with spikes on the end. Radiating to my back, upward and out to my very edges. Anchoring and squeezing in. I can feel it gripping, settling for the long stay. Something so silly as standing in line to buy zip food storage bags I later realised we didn’t need. Grey and washed out, cold sweat, panic and dread. This is breaking into my every day boring things. I behaved like nothing’s wrong for the strangers at the store and my kids who are old enough to be mortified.
The sinking feeling when I remember how long it took to be rid of this pain before. I toughed it out without pain help and became bent inside. Pain became normal and warm and comfortable. The before times, before I was broken, when pain was really pain, suffering seen clearly by my minds eye, it took years of uncontrolled agony to become broken. I wonder if I can do it again. Pain unmanaged is the current fad the well impose upon the ill. Once I got my mind right-ish about pain I promised myself I would never suffer for the title of good, compliant patient. But its been a difficult, tentative relationship that I like to play off as resolved.
I keep behaving as though I’ve recovered from the last Urgent Care turned ER stay. I am concerned. I’ve lived in uncomfortable remission. Waiting for the other shoe to drop. Enjoying not having to take Crohn’s meds, trying to savor the health I feel like hoarding, if only I could.
I’m due to see my GI. I want to go. I don’t want to go. It’s complicated.
And so I’m kind to myself. I treated myself to a long overdue hair cut. Talking to my hairdresser about the book she’s reading and the sewing class she’s taking was refreshing and lovely. I’m re evaluating my life. Assessing what I’m doing to make sure my long term goals are on track. Decluttering to reduce stress. Staying invested in advocacy by learning new ways to share.