yesterday, which was the day that marked a month back at work, i hobbled to work awkwardly with a 3rd leg- my walking stick. it was quite a sight i think, to anyone who saw me in such an awkward combination of work clothes and a cane so frequently associated with the elderly in Singapore. the whole way to work, my heart was in my gut. i was ashamed and embarrassed. and it shouldn’t have been so. i was so utterly disgusted with myself, for being so weak, a pussy who cannot take pain.
but the reality is, i am in pain, and i am fucking sick of it. the walking stick was bought and has been in cold storage for a long time. 2-3 years i think. even though my knees, ankles, feet and toes are all involved in the RA disease progress, i have always been able to accept walking (and even dancing) with them flaring. but the hips? every single movement of the leg elicits pain, and it is excruciating. and lately, my piriformis muscle has been inflamed. my rheumy pointed that out to me. she didn’t tell me why it is. only said i needed to stretch and strengthen it. i have, but it still hurts. it’s the sacroiliac joints. the joints that have bothered me for so long, and has been ignored since the x-ray reports led the investigation into a cold trail. and now that i have been totally weaned off pregabalin, i am sinking in a sea of back pain. referred pain. whatever you call it.
when i finally got to my desk, i put the cane aside, and never looked at it with hope again. it helped me to take the weight off the hurting hip. but the physical relief wasn’t worth it. i am not ready to surrender just yet. or maybe i just refuse to admit that i can’t cope with a dysfunctional body, and a mind that refuses to accept that i am different.
i don’t know what to do. there isn’t a pill for everything. it’s been over 2 decades. no remission. repeated hepatotoxicity. functional deterioration. fuel for depression. yet i am not sick enough for more aggressive biologic agents. it’s not like i can afford them anyway. i want out. but there’s no escape. no reprieve. nothing. and i am all alone. they don’t get it.