According to the medical minds of today, there are four types of multiple sclerosis. I am blessed to have the "Relapsing-Remitting" type. I have periods where my health and symptoms stay more or less the same, and I have periods where new symptoms may appear and/or old ones may worse and/or more damage to the CNS (central nervous system) may or may not be done. Sounds pretty uncertain and unpredictable, doesn't it?
So how do you know if you are having a "relapse" or as some prefer, an "exacerbation"? The general rule of thumb is if you have a new symptom (or worsening of old one) that lasts more than 48 hours, call your neurologist. That still doesn't mean anything...for certain (here we are, back to the color gray!!!) but it means it is worth taking a closer look.
So by Thursday (2 days after Xmas) when both feet have been numb, I am having new weakness in my hands and legs, the chest tightening is worse, my balance is waaay off and I am having dizzy spells (while stone cold sober!) for over 48 hours...I call the doctor. Turns out that if your body has recently fought off an infection or virus, MS gets really pissed off and acts like a rebellious teenager. The nurse was not surprised to learn I had a nasty chest cold less than 2 weeks ago and was now experiencing some trippy new/old symptoms. I am on watch until Monday. If things worsen or have not improved by then we will consider magic wonder-drugs to kick MS back into gear.
To further infuriate me, last night at 10pm and then AGAIN an hour ago the old right foot decides to mess with my head (or is it more accurately, my head messing with my foot? hmmm) I actually made Chris take my sock off so I could see for myself that my foot was not covered in fiery thumbtacks. I hoped that the visual would ease the pain. It did not. A double dose of anti-convulsants used for neuropathic pain did help.
So I sit here on Night Two of Burning Foot, still off-balance, dizzy spells abundant, still dropping things unless I really concentrate and use both hands and I wonder IS this a relapse? My MRI was so clean! I can't be getting worse already? It is too soon. My brain was so pretty on the scan. I wish my skull had a zipper and I could peek in and have a quick look...though, really what good would that do me? If I am getting worse then I am getting worse. I can't stop it. I can try my damndest to slow it down, but I can't stop it.
I can only do the best I can do today. And I really need to start recognizing my own limitations a little better. ONE major event per day is all I can do now. If tomorrow is my dear friend's birthday and I plan on being at her dinner party, then I can't go to Lenox on a shopping spree all day. Old Caroline could, perhaps, but my New Year's resolution needs to be letting her go and accepting that I am not Superwoman and this newly brain-lesioned body cannot do all the things I want it to do. And it really stinks and I hate it; but I also want to enjoy the things I DO get to do, which is still alot of amazing things with some pretty extraordinary people. So I have to take care of this immune-suppressed-jacked-up body of mine and be nicer to it and stop trying to make it something it is not. It reminds me all of a quote from Richard M. Cohen's book, who also has MS:
"We all need to appreciate ourselves for what we are and stop whining about what we are not. I grow weary of wishing so desperately for something else. Those concerns find no resolution. All I can do is what I can do. There are no cures out there, and there can be no illusions of health getting better. I do dream of living something better. There is peace of mind out there somewhere. That calm may take years to find, but its promise carries me beyond regions I otherwise would visit. To dream is to fly. Dreaming is rising above pain, believing that life will be better, no matter what the physician decrees."
And with that note I will make myself some herbal tea, perhaps draw a nice, not-too-hot bubble bath, listen to a favorite CD and be nice to my body in hopes it will return the favor tomorrow so that I may enjoy time with my friends.
However damaged and rebellious it may be, it is the only body I have. I need to appreciate it for the many things it allows me to do and try harder not to focus on its limitations.