Living with AS

February 10, 2022

Nothing special about waking up today, like most days I woke up in a mood and that mood is not a pleasant one. Having ankylosing spondylitis is no pleasure cruise. Everyday is a challenge physically, mentally and spiritually.

Today I woke up cranky, stiff and for a lack of a better terminology feeling rusted. I always walk around with a chip on my shoulder due to the amount of pain I hide daily from the world. I do not want to be one of those people who take out their frustrations on everyone else, I know those people. They are the worst. It's not anyone's fault I live in pain 24/7 or that I have troubles with moving too much or not enough or that I can barely write this post without my hands hurting. I alone must bare this burden, not my girlfriend, not my kids, not my family or my co-workers. So, why should everyone be forced to suffer because of a hereditary disease I didn't want, ask for or do anything to deserve... they shouldn't.

This is one of my daily issues, trying to maintain my pain so I don't take away from others pain and problems or worse... add to their's. Other people go through pain too. I know this and that is why I try to maintain my composer with every person I encounter. I put on a false bravado daily and literally no one is the wiser, on rare occasions I have even tricked myself briefly.

Other days all it takes is someone not driving correctly (to me) or a piece of trash in my yard that isn't mine and I can't help but yell or thrash my hands about like a mad man. This isn't me. I hate that side of me, I really do. I have lost so much due to my illnesses, jobs, relationships, my kids, and slowly my sanity. Apparently having A.S. means having depression and other uncontrollable mental issues. I know if my body felt better I could become healthier mentally. Getting help is another issue, I have been trying for years to get SSDI and I keep getting the shaft.

Every day is a struggle to get up and move, to eat, to shower, to do the basic things that a "normal" person takes for granted daily. I won't lie, I do have resentment towards everyone with healthy bodies that complain about little aches and pains when I am a walking body of pain. But, then again there are others out there in much worse conditions and illnesses than mine. This makes me feel like a big baby when I complain about my issues and pains. I constantly struggle daily with happy and unhappy thoughts and ride an emotional roller coaster dozens of times a day. I am less than half the man I once was and that eats away at me everyday as well. Yet, I continue trying to live a life worth living, each day is tougher than than the last one.

I use natural medicines, exercise daily and I have been working on my dieting. There are some doctors that claim to be specialist in this area but they offer literally NO ANSWERS OR SOLUTIONS. They shoot in the dark and start patients off drugs and dieting, that doesn't work, they shoot again... this is not an effective way to heal people. Never has been, never will be. Yet, it's normal practice in today's society. Most my doctors don't like me because I correct them on what I know from living with this disease. This has only hurt me as doctors DO NOT like contradiction to their word or ways. Even if I had an oil can I will always be rusted and breaking down daily, more and more until I am gone. My future is lined with pain and agony and I still can't get assistance due to me having the ability to walk enough and breathe. I know people who work, have SSDI and have much less severe illnesses than I do.

Time to go to my job that I must do to pay child support, bills, buy food, get gas, pay rent... you know. The stuff we must do to exist in a world that only values money over life.

I just want to salvage whats left of my life so I can have some quality to it.