Every day is different when you have a spinal cord injury (SCI). I am not a gambler, but I know Russian roulette wouldn’t be a game that I would choose to play. But ever since I got my spinal cord injury, I spin the wheel daily and hope to not lose. Today I lost.
I woke up at 5:25 this morning with a gurgly stomach. Having stomach pains while in bed, creates a lot of anxiety. I can’t just throw the sheets back and run to the toilet.I require David (my caregiver, my best friend and sometimes my super hero) to help transfer me from my bed to the rolling commode and then to the toilet. The anxiety doesn’t go away until I’m over the toilet, which takes maybe 10 minutes.Then again at 8:50, David to the rescue again. This is how my morning started today.
After finally relaxing from my early wake up call, I started to feel the sharp pains from my lymph nodes in my armpits and around my breasts. I’ve been dealing with my lymph nodes filling up for a while now and have been working with my physical therapist on ways to release them. I have never heard of the need to release lymph nodes before, but because I don’t move my arms and core all the time, my lymph nodes fill up. This is something that was not taught in spinal cord injury school.
Mid-day, my legs start to feel prickly. I like to believe it means I’m getting feeling back, so I focus hard on one leg and use the energy I have in that leg to move it. With how hard I try I am shocked that my leg doesn’t move. I try the other leg, and do the same, same result. The prickliness in my legs feel like after your leg falls asleep and then it starts waking up, you know that feeling, that’s what it feels like.im told it is nerves. Many SCI patients struggle for life trying to minimize the pain, I am still in the “hopeful phase” that it means good.As I lay in bed continuing to feel other pain in my back, and my chest, I can’t help but cry.
AD started to weave itself throughout the day. Remember what AD is? Autonomic dysreflexia.(read my first blog). The chills, the headache and sweating.
THIS is my life. Pain, fear, unpredictability.Those who have hope tell me it gets better – but those people aren’t me. Those people didn’t just experience the above. I have far more bad days than good. When days like this happen, I think of all the things I can’t do. My mental health is what tears me down. The negative thoughts that play over and over on repeat. I scream “it’s not fair”, I scream and plead a lot. No one can help me when I get in this state of mind.
I had plans today. To hang out with my friend Kimberly. We were going to go to Mall of America and grab lunch. I lost on the wheel today.
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