I let my Lupus anniversary slip by this year. It's officially been five years since my diagnosis. It's also been five years since the Pelvic Floor Dysfunction diagnosis. It's been four years since the Fibromyalgia diganosis, and three years since the Anti-MAG Peripheral Neuropathy and MGUS diagnoses.
As far as I'm aware, the Peripheral Neuropathy is the only illness that is technically progressive, meaning that it's supposed to get worse as time goes on. The others can go into remission, get better, get worse, stay the same, it's all fairly unknown and, outside of treatment and care, a matter of luck.
Well, I don't think I've had the best luck in the last few years. Two years ago, I had that major back spasm that left me a bit debilitated and using a cane to get myself up from the bed and from my seats. Physical therapy helped with the back, but I still have to use the cane for my worsening fatigue when climbing stairs and climbing hills and sometimes, when I'm tired enough, just for walking normally.
My rheumatologist thinks I might have Postural Orthostatic Tachycardia Syndrome (POTS). I think she might be right. My heart rate does jump up from sitting to standing or when doing even a small bit of exercise. This could be the thing that was leading me to visit all of those cardiologists, but for some reason they didn't diagnose it at the time. My rheumie is sending me to a new cardiologist who is an expert in POTS and also treats Lupus patients. I'm not sure what more they can do for me that I'm not already doing: eating more salt to get my blood pressure up and staying hydrated with a 50/50 water and Gatorade Zero mix. The appointment is in early September. We'll see what comes of it. I know there are drugs they can put you on to manage the POTS, but I honestly don't want to add another pill to the already extensive cocktail.
I now have dreams at night where I've forgotten my cane and I'm having a hard time getting around. Or I'm sick in the hospital. Or I'm in a lot of pain (usually because in real life I'm in a lot of pain). There's a quote in Salma Hayek's Frida Kahlo movie where Frida says, "I can't remember a time before the pain." I don't know if Frida actually said that, but I do know exactly what it means. I mean, I think I started having Lupus joint pain in my adolescence. I honestly don't remember much of my life without pain and fatigue. My constant response to "How are you?" in college was, "Tired."
And now, it's a lot worse. Two days ago, I started crying because I couldn't lift my arms easily when doing a seated side stretch during a "Spoonie Yoga" session I found on YouTube. I cried because I had a day of work ahead of me and although it was all from home, I was upset that I couldn't feel well enough to hold Zoom conversations. Actually, it wasn't just that. I was upset that I can never predict how I'm going to feel on any given day. I had been fine the day before. I've come to the realization that my "predictable" is to assume I will be unwell on any given day. And that's what really upsets me.
So, five years later, I've learned to live with the chronic illness. I've learned to adapt to it. I've even learned to dance with it, as painful as that can be sometimes. But I've also learned that even when getting used to it, there are days where it lets me down all over again. Even in a small moment of stretching out my arm. I think the mental and emotional part of all this is the hardest to get used to. It's a constant practice in grief. Grieving the old life before the illness, grieving the old life when the illness wasn't so bad, grieving the plans that can no longer happen, the future that won't be.
I usually try to end these posts on a positive note, but I think it's ok to let this one sit where it is. I am grieving and it is ok to grieve.
|In child's pose with a pillow while doing restorative yoga.|
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If you have a chronic illness, do you let yourself grieve? What do you do to help yourself with your grief? Feel free to share in the comments below.