Pain After Doing Things, But Seems Like I'll Never Learn

I was in bed for the last few days and thought I may be feeling better that I wanted to do something.
I felt fine, I thought of making pasta, I used the manual pasta maker (Kev got me from Dec. 2005) instead of the electric pasta maker, it felt more authentic. I made Puttanesca for it's sauce. I used these ingredients:
4 anchovies
6 cloves garlic
1 (28 oz)canned tomatoes, preferably Di Napoli
2 T good olive oil
1 cup chopped calamata olives
1/2 t kosher salt
1/2 t fresh ground pepper
1/2 t dried pepper flakes
I made pasta using 2 cups of flour.

Gosh, it was goood! After dinner I tried to clean the kitchen like I want it to be but as soon as I got upstairs, I felt exteme pain and numbness with shooting pain from my lower back down to the back of my legs, excruciating burning pain.Whatever it is I would just rest and say, at least i did it, like i always tell myself after paying for what I had done. Now it's time to rest, it maybe another few days again, but so be it! It has been a part of my life for a while now.

Fear of losing the use of extremeties

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!!