Still finding it hard to come to terms with chronic pain
It's been over 5yrs since my diagnosis, 10yrs living with this thing but I'm still finding it difficult to understand the hows. How to live, work, enjoy life.
Each time I think I'm having a good streak or I'm making progress in comes the flares to knock me right back down again.
Every single day of my life is lived in pain but I try to cope. But days like today when I can't even go to work are the worst. I just lie there with stabbing pain, unable to think clearly with this f****** insane fatigue - what the h*** is that??? - and brain fog. I just want to run away from it all. To end it all.
I've worked so hard to make a life for myself. Did all the "right" things: studied, graduated, worked my way up, lived simply, traveled. But for what? I can barely work now. Leaving jobs I can't even get to has become the norm and I have no motivation. No desire and no more fight.
I can't travel like I used to. Flying and the high altitudes causes issues, making me feel like a have been beaten up the moment we land.
My immune system is non existent, so when f****** 'Greg' or 'Debbie' decide to come into work with a cold or flu, for showing up sake, I catch it but for me it's like I've entered the gates of h***. I'm out for at least a week and then the flares. I feel like a failure. I know that I shouldn't, I just do.
I'm exhausted. I'm tired of trying to live with this. It's unbearable. I may have to move because I can't afford to stay here with no steady work. Bills are piling up, savings disappearing. I stopped seeing friends. Just too hard to keep telling them I couldn't make it. I wanted to get a dog but you need energy for that. I stopped snowboarding too.
It takes me ages to get dressed. Showers used to be relaxing or wake me up now they're guaranteed to make me dizzy and drowsy. Clothes are uncomfortable against my skin so I spend a lifetime trying to find something comfortable to wear. I cry a lot but I smile more to cover up the s*** I'm going through.