Dispatches from the Abyss: Disability Loss and Grief

Coming to terms with losing pieces of yourself little by little, navigating the uncertainty of chronic illness and pain, letting go of dreams, reinventing them over and over with changes, realizing things you will never be able to do again, and the list keeps going and going. There is a lot of grief involved in becoming disabled. 

I have an autoimmune disease - psoriatic arthritis and frequent chronic pain flares, joint and mobility issues, and peripheral neuropathy. The inflammation and pain flares hit my hands and my lower back the worst. I have been under treatment for it for a couple years now, but we are having to do some changes to my treatment plan. I have other medical comorbidities as well in addition to being AuDHD with C-PTSD. 

I have been a huge Grey's Anatomy fan for a very long time. I love medical shows because I worked in hospital in my early 20s as a medical assistant in Orthopedics and Neurology. I remember most of my patients to this day and some have been dead for 30 years. There is comfort in medical shows. The hospital was my sanctuary when I was in an abusive relationship at the time. It was my safe place. 

The news of Eric Dane's passing from ALS yesterday is hitting me hard. Not only was he my favorite character on the show and a brilliant actor, but seeing how fast he deteriorated physically from ALS within 10 months from diagnosis to death is beyond the pale. 

I talk about being disabled a lot, but I don't really go into the day to day struggles and navigating my life as I lose bits and pieces of myself along the way. I have been having a particularly rough week, I had bilateral spinal cortisone epidurals on Monday and slept most of the evening that day. Tuesday was awful. I woke up with an acute, but mild spinal headache. They are more common after lumbar punctures, but they can occur after spinal procedures and epidurals. I was exhausted in bed all day.

I have been feeling off since then. The headache subsided, but I’ve been exhausted by the afternoon and my vision is really blurry more so than usual since then. I don’t normally have this many issues after my other cortisone injections in my SI joint. I am prioritizing my health over the business. I have no other choice. I woke up this morning with neuropathic pain, numbness in my right hand which has been a newer symptom over the past year. I am slowly making my way through the day as the pain waxes and wanes in my hands.