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Tag: ankylosing spondylitis
Why? No Answer
I’m not doing anything different or special. I’ve been thinking for a few weeks and trying to decide on a lot of things. I’ve been in intense pain and my doctor can only say that it must be a flare-up of my ankylosing spondylitis. So I was started on a long course of steroids and methorexate was added back to my med regimen weekly right before the prednisone. Then it was time for my next injection and I now have a cold virus, too. When it rains it truly pours because my depression is just crashing down further and further. I really didn’t want to even write anymore. I spent #WSPD2017 underneath a mask just hoping I could not only convince myself that things are better, but to hope something I say might help someone else. I know nothing I say helps me because I don’t believe myself. I don’t believe IN myself, I suppose. I’m nothing more than a lonely, depressed, lost and insufficient woman. Yeah, pity party, right?
No.
It’s a way to vent without personal backlash. A way to just as I was accused in the past- “air my dirty laundry.” Well, I don’t care anymore. I don’t intellectually care, in a way, about most things. I just feel everything. I don’t want to feel anymore. I don’t want the haunting thoughts I have nor the distorted, disgusting nightmares. I’m so sick and tired of my obsessive thoughts, so much so that I want to smash a brick into my brain. Then there’s everyone. Everyone else that I have to constantly think about. It’s funny when I feel entirely alone yet I’m constantly ‘sticking around’ to soothe everyone else by being alive. I exist, and that’s enough. Why would being dead be any different if no one knows that I do exist now? It’s a quiet, safe notion in their heads. I’m breathing because it makes everyone else feel safe and comfortable. Who is on the selfish side of this war?
I have to live in my head. It’s the current safe place I have. I can listen to myself. I don’t bother saying much to anyone anymore and when I do it just becomes a chaotic and desperate attempt to keep myself alive. Not the other person I’m talking to; it’s me trying desperately to save myself. A best friend is not really a best friend; there are always limits. A family is not family as there are limits there, too. The only place that there are no limits, no boundaries and no shame or guilt, no pain mentally or physically and no grief, is with our Lord.
I don’t fear death. I’ve been well exposed to it, however, I’m afraid of the process by which becomes death. If it were easy there would be no second thought. So, as a mother, I have a terrifying consistent thought about my daughter. It doesn’t matter that she’s an adult. What matters is that I don’t want her to get this deep into the hole, where there is just no climbing out anymore. The dirt just pours in the more I cling to the sides and try to climb out. Buried alive. It doesn’t matter whose grave because it becomes mine. I only pray over and over she really is more like my mother.
I don’t think anything more I say will change anything in my mind and Lord knows I’m not helping a single person out there. My intention was to connect to those lost inside as well and maybe they would know there are others that feel certain ways, but are there? I’m certainly the one searching and honestly I can’t find a soul out there that is even slightly like me. I want to be unique, I know I am unique, but to be alone in my thoughts is such a dangerous place to be. If I can’t open up with my therapist or my doctor and can’t get medication to help, then it’s my own fault I suffer. I just can’t do it. I made the mistake several times of opening up to friends, an ex-husband and several others. Depression to the depths I feel just chases everyone away. I am avoided or feel no comfort. People run out of things to say and sometimes I just need physical touch. A hug, a stroke of my hair or a kiss on the forehead, a hand holding mine, but as helpless as those people in my life feel/felt, they have no idea how helpless I am. And hopeless. I have no human touch and no human connection. Sure, that’s my doing. This emptiness is never filled.
I’m sick and tired of being sick. Depression, pain, physical pain, sadness, grief, distortion, obsession; it’s all making me even more mad than how I started. When is enough, enough? This entire world is more than I can take. My patience with myself is worn completely thin. My patience is tired of its patience. What the hell am I doing? What the hell am I sitting here typing this for? Maybe I just don’t want this anymore.
An Epic Burnout
Another night when the monster creeps into my head before trying to sleep. A wait until the sleeping pill kicks in, because the insomnia and that monster will keep me up to fill my head with dangerous thoughts and commands; sometimes for days with an hour of rest here and there.
I know life was never meant to be easy but I never knew just how hard it would be. I’ve been on this earth for over 35 years and I still haven’t accepted anything. One day I’m ready to give it all I’ve got and no holding back, but that night or the next day I’m exhausted. Not only mentally but physically. I totally understand others’ reasons for giving up. Those of us with AS, with depression, with chronic pain, no matter the source. I try everything to satisfy that horrible darkness and pain but it always wins and I’m tired of losing. Yes, I’m a sore loser.
How, how does one survive and embrace their life that was dealt? How do you survive AS, depression, your own mind and body? This is all just rhetoric that I’ll never have an answer to. I’m one who tries to find answers, I search and search. I never stop with anything until I get the answer. If it doesn’t have an answer it torments me endlessly. I delve into books and lose the world, yes, even non-fiction, which is my favorite.
I want out. I want a way out of my Spondylitis, my depression, my bpd, and my fibromyalgia. My spoons are extinct. I don’t know if I’ve had one that I lose and randomly get back.
I go to Jesus for comfort. He always listens, but sometimes I can’t see the answers and that’s my fault. He’s what keeps me going. I want more than anything to be with Him. I wish He’d send me another vision, dream, because it’s a release I can’t describe. Pure peace, and not any kind you can get here. A feeling that finally someone really does understand and has seen my entire thoughts from the womb. It’s not pity I ever feel from His soft eyes. I don’t want pity. No, it’s just unrelenting joy. Dropping to your knees without warning joy, and no tears, good or bad, because I just didn’t have that emotion. I just felt extreme longing to touch His feet- to be near Him. It was terrifying yet a sense of love and wanting nothing but to stay in His presence.
Show me again, please. The world of sin is killing me. I need the reinforcement to keep going. That I need to remember the great journeys on my way to my real home. Please defend my life, I beg of you.
If I didn’t have ankylosing spondylitis, depression, pain, anxiety, fibro, insomnia, delayed sleep phase, pure chronic unrelenting pain, having a borderline personality where everything is black or white yet I express grey areas, would I survive that or would I lose focus in a different way? (Again all rhetorical,) No one but God knows.
I’m tired, so, so tired. There’s no other word I can use right now. I’m beaten down. Just the thoughts where ‘it’ wants me to drop dead.
Maybe someday I’ll give it what it wants. I’ve always tried. Lord knows I try everyday. I’m just waiting for the way out and eventually it will happen and I’ll find it. Instead of running down an endless dark hall, maybe there will be pure light ahead.
Fight to keep going, fight to die, fight to keep trying and again fighting to give up. I’m definitely exhausted mentally and physically. So tonight, before I fall asleep, I fight to protect me from myself. Delayed sleep phase is so consuming and debilitating to my life to top the rest. When I just want to shut my eyes early and give that day up. Hoping for something different if the sun comes up.
Locked In My Head 