Hoping For Light to Get Me Through the Dark
I feel fragile.
It doesn’t take much to set me off both physically and mentally right now, and I know it’s because of my progressing AxSpA.
My condition seems to have negatively progressed over the recent months and all I can do is wait.
I will be ready to go out the door and suddenly I will feel so poorly that I can’t stand up anymore. Just go on without me. Even though I really want to be a part of whatever the day has to offer, I go back to bed.
Easy tasks feel impossible
On the worst days, standing for 20 minutes to do the dishes seems like the most difficult task in the world and I struggle to get it done. I’m often soaked in sweat when I finish, even though it’s a simple, mundane task.
The brain fog drives me crazy. Some days I’m barely functional.
Typically, I’m a very detail-oriented person. Quick-witted, attentive to the world around me, my brain going a million miles an hour. Traits I take pride in and attribute to the success I have.
Over the past few months, this has shifted. It’s one of the signs I’ve developed that I’m having a bad day.
I can be in the middle of making dinner and the next moment have no idea why I’m standing in the kitchen, staring down at whatever it is I’m preparing, unable to process the next steps.
For someone with good coordination, I’ve become clumsy. I drop things out of the blue, I knock things over, I make a mess trying to cook or clean – how ironic.
It is absolutely infuriating
I know it’s out of my control, caused by a disease. I don’t get to decide when flares occur, but that doesn’t make it any less frustrating.
The smallest things can set me off. When I’m in a flare, in complete frustration, I can feel like the wind gusting in my face or the sun beating down on my skin is a personal taunt from the universe and it aggravates me.
Can you imagine, getting angry at the wind?
Often the most trivial things make me want to blow a fuse, but deep down I’m just angry at an uncontrollable part of myself.
The lack of control is what I find the most frustrating.
Three to six months is the timeline I must wait to know if my current medication will work or not. Only six weeks have passed. Some days I feel improvements, but not enough to quell the frustration. It is a hurry up and wait process, a trial and error process, and it’s mostly been error thus far.
Hope is all I’m left with
I hope this medication will be the one that works. I hope I can find a sense of myself soon. I hope the good times start to outshine the bad times soon.
I get through by focusing on the positives. I’m not worried about losing the roof over my head nor the food on my table, for which I’m grateful. It’s frustrating but it could be worse. Perspective and gratitude help me get through the worst times.
Though I may feel fragile right now, it’s going to take a lot more than this to break me.
Does reading AxSpA patient stories help you in your journey?