All in Health
“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.
Living with a chronic disease, it can be hard some days to find something to be Thankful for. Some days it feels like friends are slowly drifting away as I stayed curled up in my bed. The hardest part about living with a chronic disease is not the pain, you learn to live with the pain. It's explaining what you're going through to people who don't understand. It's taken friends and family seeing me at my worst to truly understand what is happening to me. They may not understand it, and their reactions may not be what those of us with a chronic illness expect, but we have to remember they are trying their hardest to understand that they’ve never experienced.
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.
March is National Blood Clot Awareness Month... I know I know every month there is some sort of awareness month and what good does awareness do, most people know about cancer, but with blood clots, it's a little different. I almost died from a blood clot. There are signs and symptoms everyone should know to protect themselves, because the one thing I've learned, blood clots do not discriminate.
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 will always remember September 27th, 2010 like it was yesterday. It was the day I should have died.
It's not simple to say that most days I don't recognize me. This is not what I asked for, this disease, but sometimes life just slips in through a back door and carves out a person who isn't anything like you remember. If I'm honest, I would give it all back for a chance to start over and re-write my story for the girl that I once knew.
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.
