This has been such a long and stressful time. My husband has been working two full time jobs, one paid and one that was unpaid for school. I’ve had a time trying to keep up with all the bills, keep up with the housework and raise our 4 year old pretty much alone. We have been at this since before our child was born. Of course my PsA flaired in the mist of all of this, because keeping up with this extreme pace wasn’t hard enough.
I feel like a old women living a young womens life, except my years do not match my declining health. I feel robbed and angry that my body struggles to keep up with the demands of my life.
That my hands hurt too much to tickle my son when he wants to play. That I worry about what effect having a sick mother will have on him. It’s no longer just about what I am missing out on, but what he is.
I’m selfishly bitter about being an artist who’s hands cannot create like they once did.
I’m angry there’s no cure, I’m angry the treatments have scary side effects. And I mad no one in my peer group can relate to me at all.
I find it ridiculous they really don’t know what causes this and that there are millions of so called “cures” involving restrictive diets and other stuff that I just can’t afford to stick to that make me feel like this is somehow my fault.
I’m mad I’ve spent in medical bills enough to take my child to Disney world 6 times this year already. I feel guilty all that hard earned money was spent on me and not him.
He wants to go see Mickey so bad and I always swore my children would have that kind of experience, but this illness demands too much, I can’t afford it.
It’s breaking me that when I talk about my physical pain and frustrations people shut me down, tune me out, ignore and change the topic, not because they don’t care but because it makes them feel as helpless as I do every day of my life.
How can I provide what my husband and child need when there are days I can’t even get my shirt on by myself.
Sometimes I really debate if the burden of my presence is worth the little I feel like I can offer them.
This all needs to be said, I can’t live alone with it anymore.
It’s actually a good day for me, and my husband is graduating, it’s over we have reached a new path and our heavy burden will now hopefully peel away layer by layer.
I have dreams of going to college myself, but I’m scared, what if my body worsens to the point I can’t maintain a job, will the stress of a 9-5 put the final weight that snaps me? Should I invest so much work and money in a body I can’t trust to function?
Struggling to do the mundane like a weak ancient women makes me wonder and doubt just how much I’m worth.
Sometimes I feel like if I’m being honest and realistic I’m just to much of a risky investment.
I’m sorry this is my first post, and I’m sorry it’s dark and angry, but that is what I need today, a place to say all the things I hide from the people I love.
I’m going to keep fighting for the postive, and keep hope in my heart, but today I need to voice how it hurts because my pretending all is well isn’t always okay.
Thank you.