Prompted to think of a four letter word which I might use to describe life with chronic illness, my mind kept returning to the word WORK.
Busy with work:
While blinded with optic neuritis 10 years ago, I managed to make every rehearsal and scheduled performance without missing a step. All except the one 'kiddie concert' I missed the Tuesday I visited three eye doctors (including my own optometrist, a retina specialist, and a neuro-opthalmologist). Although the high-dose oral prednisone caused my hands to swell up to twice their size, I don't recall cancelling any piano lessons. The MRI showed inflammation around the optic nerve but no brain lesions (so no MS). Perhaps I still felt invinsible although I couldn't see.
Unable to work:
Just over five years later, I was being diagnosed with MS. At first my neurologist called it transverse myelitis (and probable MS) while I was being infused with high-dose steroids. The following weeks I couldn't work, I couldn't sleep, I couldn't stay awake. I was a loopy lump on the couch who developed shingles just weeks later.
During twice weekly occupational therapy, I worked really hard to make my left hand come back to life. Some of my fingers had become useless and the strength of my grip was measured at one pound. That was a very long two months under the excellent care of a hand specialist.
When rheumatoid arthritis flared so extremely to cause carpal tunnel syndrome, I couldn't play the piano. I couldn't hold objects. I couldn't stand to touch anything. I had piano student moms who assured me that I could still teach although I couldn't demonstrate. Now how's that for trust and confidence? During this time, I was hardly playing my horn professionally.
Health is work:
Keeping up with the doctor's appointments, prescription refills, mental health, and symptom management is a full-time job in itself. Sometimes I simply don't want to schedule that next appointment or making another run to the pharmacy. Sometimes I want to pretend that I don't life with multiple chronic diseases.....but that is never possible.
After starting this blog, I discovered people online who accepted me as I am. The MS community has been most welcoming. Writing here has led to other opportunities to write about my chronic illnesses online where I can hopefully make other patients feel just as welcome.
So when asked about living with chronic illness, the word which comes to mind is WORK. Without work in some fashion, I wouldn't be happy. I wouldn't feel alive. Work is very much different than gainful employment and I hope that we all can find ways to 'work' which are satisfying.
Ask me tomorrow and the word might be something completely different. Such is the changing nature of living with a chronic illess. Always there, always the same, but always changing at the same time.