All tagged Psoriatic Arthritis
“It honestly never occurred to me that I’d go to bed sick one night and wake up ill for the rest of my life.”
It’s easy to speak from the other side of struggle, but it’s really tough to speak from the middle of it.
Being alone in a moment of struggle and feeling all of your emotions can get really heavy, all you can do sometimes is sit in your emotions, soak them in, and bathe in your vulnerability.
Fatigue is my most frustrating symptom, even more so than pain! Does lethargy come on as a side effect of the medications I take? Or is it just my immune system trying really, really hard? I'm pretty positive it is the ladder. I was diagnosed at 19 and now I'm 32, that's roughly six and a half years I've spent sleeping. There are a lot of things I could have accomplished in that time.
Pain comes in all forms. The small twinge, a bit of soreness, the random pain that we live with everyday. Then there is the kind of pain you just can't ignore, a level of pain so great that it blocks out everything else, makes the rest of your world fade away until all we can think about is how much we hurt, how we manage our pain is up to us. We anesthetize, ride it out, embrace it, ignore it, and for some of us the best way to manage pain is to just push through it. That's what most of us are doing, pushing through it. But let's advocate for ourselves and find someone to help us through it so we're not alone in this.
I feel like I've lost myself along the way of this 13 year journey with Arthritis. My diagnosis has changed, my pain has changed and so has my support system. I'm definitely not the person I was when I was diagnosed. What I have learned though in these past 13 years, is what not to say to me. Even if you have the exact same condition I have, it doesn't mean that what works for you will work for me. There is no cure, that's why it's called chronic. It never fully goes away. I've compiled a list of thing you should know about someone with a chronic illness. This list is pretty specific to me, but I'm sure a lot of it applies to others.
I often talk about being a spoonie and I've had people ask me what it is. It is actually something those of us with a chronic illness call The Spoon Theory.