I have spasms a lot, I had one in the hospital while having my IVIG a couple of weeks ago. Thankfully, the nurse knew what to do and slowly massaged me back into feeling again. Today, I had a spasm which glued my forehead to the kitchen cupboard. Ha, it sounds funny, it looked funny, but it isn't really funny for me.
I knew I had a spasm coming, I get warning signs, dizziness, tingling, even a weird feeling in the pit of my stomach. Over the years, I've learned to interpret these as warning signs. I should sit down, rest, try and stop the attack with mindfulness. It sometimes works. I had no warning at the hospital because I'd fallen asleep and woken up in spasm, these cant be prevented unfortunately.
Today's spasm hit while I was cooking lunch. I'd managed to do lunch for everyone and was about to make my own when suddenly the pain in my legs became too intense and I just couldn't hold myself up. I didn't want to fall so I leant against the cupboard, my forehead was resting against the door. But then then spasm hit and I couldn't move. I couldn't lift my head from the door, when I tried it moved slightly and then went straight back like it was pulled by a magnet. I had no control over the rest of my body and my head was holding me up by being stuck to the cupboard. How weird it felt, and looked. Luckily there was family around an my wheelchair fetched. My husband, Graham, had issues trying to get me off the cupboard, my head didn't want to move. My body fell back into the chair, but then he couldn't get my legs to bend onto the foot rests. I was stiff and unbendable. I guess that's why it's called stiff person syndrome. The stiffness is very real. One day, it won't go away. one day it will spread to my organs and they will become stiff and stop working. That day can just wait, I'm not ready yet.
Trust me, there have been times when I've wanted to bang my head against the kitchen cupboard. But it's not the same when it's not a conscious decision and my body just wants to do it for me. Losing control of your body is a scary experience. I don't think I will ever really get used to it.
Then there is the pain. I can't even begin to explain how it feels but it hurts.
I need to get my brain to connect with the rest of my body again and the best way to do that is to move. But I can't move so I need someone to move me. This is not easy for me or for the person trying to move me, but it has to be done. Eventually, my brain reconnects and I'm able to move again. I'm left exhausted and in pain.
This is such a strange condition, with strange symptoms. Even stranger is that because it's so rare it's hard to find someone who feels the same. Yes, we may share some symptoms but everyone seems to be different. I woudln't wish this condition on my worst enemy. I'm so grateful that it's not genetic and I won't be passing it on to my family.
