It is really easy to feel sorry for myself right now. I’m still in the middle of the trial-and-error phase of getting a treatment that works for psoriatic arthritis. My joints still hurt, though the pain is mostly managed. I’m exhausted. (I have to take an hour nap after showering, and can sleep 20 out of 24 hours if given the chance.) I’ll be waiting for months to get my medication right to really feel like myself again.
It would be quite simple to curl up in a fuzzy cocoon of memory foam and heating pads and let the world forget about me.
Navigating a New Current
Right now, what I’m doing is adjusting to a new pattern of life. I’m learning how to become a new version of myself. One that is a little less type A, a lot less anxious, less stressed. One who still enjoys and embraces life, but perhaps taking smaller bites, slower steps, and gentler movements.
The metaphor that I keep coming back to is a river. My old life was a swift current with some whitewater – the old Alicia had to paddle fiercely to stay afloat. But the river has turned a bend, and the riverbed is deep and rich with life here. The current is slower, deeper – it’s a new kind of flow. For the first few weeks of this illness, I was still paddling like crazy, which was both exhausting and futile. Now, I’m learning to slow down and be more mindful of this new pace and depth.
Eventually, I might have my old energy levels back, but for now, this is my reality. Even when my energy returns, stress and anxiety are triggers for future flares. I’ll need to adjust no matter what to prevent these crisis points in the years to come.
Embracing my Sensitivity
Loud noises, lots of interruptions, too many transitions between tasks, bright lights. These are things that hurt my head. They overwhelm me. I wrote about it once. I’m reaching out to occupational therapists about sensory diets. And I’m coming to terms with the fact that I’m a real-life Princess and the Pea.
As I learn to slow down, I also learn to soften up.
In my current fatigue, I tend to lay down a lot. But just laying down doesn’t cut it. because my hips hurt, or my ankles ache. I shore myself up with memory foam pillows of various shapes. Then I curl up under a heated electric throw, and sometimes have the heating pad going on my opposite half. The dog snuggles in. The cats curl up. And we drift on the pea-princess’s twenty mattresses.
There are international stories from India and other parts of Asia about women who are very sensitive – one woman was injured when a jasmine petal grazed her foot. The thing that is consistent among these stories is that this sensitivity is seen as a good thing. It’s a sign of refinement, of aristocracy, or in many cases of greater, deeper levels of compassion and depth of emotion.
I don’t think I’m a princess. But I am beginning to think that my sensitivity isn’t just the burden I’ve coped with for a long time. That maybe it has good to offer. I’m being more patient with myself and my preference for dark rooms. I’m accepting the floating layers of memory foam.
I know I need to reduce stress in my life. My sensitivity is a source of stress and anxiety if I’m not attentive to it. Time to stop dismissing that part of myself.
RSVP “NO” to the Pity Parties
I am doing my best to stay positive. I try not to complain. I don’t want to “suffer in silence” but I do believe that optimism is a healing agent in itself.
That’s why I wrote up my updated life well-lived list again. That’s why I’m writing this out now.
This autoimmune disease is going to change me drastically, and not at all. I think it’s got things to teach me, and I’m determined to learn them.