Life with SPS is not easy nor for the faint of heart. It is something that teaches you to take every good moment and relish it, because you never know from one minute to the other how that day will go.
You get stiff, you walk like Frankenstein, the wind will freeze you (literally): sudden or annoying sounds will also do the same. And just when you think things can't get worse you learn that being wheeled across high places such as a walkway bridge in a hospital, or even the texture of the sidewalk can set you off and start the beginning of an episode.
You keep your handy "Seizure Bag" with the emergency meds handy and make sure anyone with you knows how to administer it. Sometimes the episodes happen so fast your arms and hands are frozen and next thing you know you look like you are throwing gang signs! LOL
And for the worst of the worst, you always carry on your person a medical bracelet, a folder with current med list, a doctor list, and things like medical POA, and all the legal docs that may apply to you such as a DNR etc....
I have been to the hospital 26 times in one year, (my insurance really disliked me that year), before we started to get this tampered down a bit. We have little victories here and there as we experiment with the treatments, but realize it is not in remmission. Everytime the treatments wear off we get to see the stage I am in (Advanced and Severe).
You go through the stages of mourning your old life and eventually learn acceptance.Thank God for my training and my earlier fitness or I may have never made it this far. I can handle the pain and know how to meditate to get through the panic that overwhelms you, (That open water training at Lake Boerne took care of that), vertigo in the middle of a lake tends to teach you how to breathe through it. LOL ...You must find the humor in it to some point.
You grab and hold onto every bit of hope you can.
Fortunately for me, Mac has offered a HUGE LIFELINE!
Attached is a short video of what happens and they last anywhere from 30 minutes to 7 hours so far. Warning it is not pleasant to watch...this is just 3 minutes of my life...
Don't pity me, there are always others that are worse. As Lt. Dan said in Forrest Gump to the storm, "You call this a storm you SOB, it's time for a showdown just you and me!", and Like him I can take it!