At times, I'm scared because I know that one of these days I will most likely become a quadreplegic. There's no getting around it. It's not about being negative, it's about being realistic. Unless I'm lucky enough to get stem cell transplantation, haha!Or a miracle from above!!!
I feel it, it's like having a broken body, from my waist down is numb and cold, feels like pulling,tugging the nerves in my back down to the back of my legs and it's too painful to bear even with a lot of medication. Each time I walk a certain distance, I suffer for days. The root of my arms, are so painful inside, it's excruciating. Each time I use my arm for something, the pain shoots to my neck and my head, combination of weakness, pulling, tugging the nerves and the pain, it's hard to explain. Right now, I have so much limitation as to the use of my arms. I know no one wants to listen to all these and no one even wants to try to understand. Not even my own parents. I know Kevin, my partner has always been understanding, but I don't want to bombard him with all of these. yes, I tell him how I feel but I feel bad after, I feel guilty so it's better for me to keep it to myself sometimes. With Syringomyelia,I know most of us sufferers have become good pretenders. Always pretending we're fine, although inside we're always in pain and what I hate is that when we start to talk about our pain, most people think we are just weak. Not knowing how strong we have become. I have heard things like, " Mind over matter", " Be positive" or "Haven't heard of anything like that". They have no idea what pain really is... But for now, tsk tsk, JUST KEEP SMILING, LOVE THE DAYS WHEN PAIN IS TOLERABLE. WE TREASURE THOSE MOMENTS!!
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