There is nothing more disorienting than having your body fail you. When the skin and bone that has served you so well throughout your lifetime becomes the straps and bars of your own little prison you move outside yourself, gazing at your body and wondering how it is that it no longer fits.

For me, it was moving from endlessly energetic and strong to perpetually tired and weak. My previous sense of self was based on a cornerstone of health and strength. I could carry all the burdens, physical and non-physical, regardless of what they were because the well of energy inside me had no bottom. It was refilled magically like Mercury’s Pitcher. I never had to say no to anything I wanted to do, or anyone I wanted to help.

Needless to say it’s been a difficult transition.

I floated above my body for years, waiting for the health and strength to return to my limbs. Waiting for the invasion of illness to pass.

It hasn’t.

After all the specialists in the country examined me and shrugged with the calm recognition that there was little that could be done I realized this strange body with it’s aches and pains, it’s tiny pool of energy, and it’s punishing pain for overexertion was actually my forever home.

Ever since I’ve been trying to crawl back inside of it. I’ve been training myself to say no when I need to, when I think I need to, and when I think I maybe kind of need to. I have learning what experiences drain my energy and which don’t. For example, while I used to love large gatherings with lots of people they wear me out now. All the noise makes my head pound, all the conversations sap my energy, and all the scents trigger headaches. I have had to limit myself to a few such gatherings a year, and sit back and try not to be sad while I watch the pictures my friends post of all the events I couldn’t attend.

I can’t do the work I am trained to do. I spent hundreds of thousands of dollars on a degree, and thirteen years honing my skills, only to discover the stress of the career I’ve dreamed about forever is too much for my body to handle. I have had to recreate myself inside and out to find a way to occupy my time and contribute to the world without hurting myself.

I thought my body would eventually heal and I would once again feel like myself. Now I know the myself I need to feel like is a stranger. I have to get to know her better, welcome her in, accept her limitations, and allow myself to slip inside her sensitive skin and battered bones.

For she is me, and I am her.

It’s been a little over a month since my new diagnosis and I have been trying to remain active. Moving around is supposed to help me feel better but I think it’s just making me tired.

I’m ending my days so stiff I can’t even turn over onto my side without excruciating pain erupting all over my body. I start my days with a pounding headache, tight jaw, and aching hands and feet.

While I am moving around I feel okay but when I stop everything seizes up. I am pretty sure I actually turn to stone. Well, highly sensitized stone. I’m just not sure how to fix that part. I recognize that moving around makes me feel better but I am failing in finding a solution that keeps me moving all the time. Maybe I need some sort of robotic chair and bed system that moves my limbs around for me while I rest so the overall effect is that of always moving but I still get a chance to sleep and sit the fuck down.

Until I discover/invent such an apparatus I am stuck pulling myself up by the bootstraps each day and convincing myself that moving around all day is worth being rendered painfully immobile at night.