It’s been a crazy few days in Casa de Fabrizio. It all began on Monday evening when I completed my daily injection routine. It was tummy night and apparently I must have injected too close to my belly button. The good news is that I now have verifiable proof that there really are muscles in my pooch of a tummy! The bad news is that hit one of the muscles and my entire belly has been blacker than the inside of a boot for three days. And I haven’t been able to bend at the midsection, take a deep breath, laugh or twist without a not-so-gentle reminder of my mistake.
My tummy isn’t the only thing that’s black and blue; so is my ego. That’s because until Tuesday, I was certain I had a handle on this thing they call: M.S. I thought I had defined my new normal (my Sunshine Days) and had an idea of what the true Moonlight would be. But, once again, I’m back in the land of unanswered questions. I take that back. The questions can be answered, but again only with the response of “I don’t know.”
One of the toughest parts of daily life with M.S. (as I’ve said ad nauseum) is the unknowns. As I peruse several on-line M.S. communities, there isn’t a week that goes by where a patient doesn’t ask “Is this M.S. or is it something else?” Or a variation: “How do I know if this is a flare up or just ’regular’ symptoms”? Many other patients respond to the discussion threads, sharing their own experiences, then reminding the person who posed the question (a) that no two patients are the same and (b) to talk to their neurologist. Because I face these questions myself regularly, I’ve done some research. I certainly can’t call the doc each time I have a pain, a dizzy spell, or a tingle in my arm. But at the same time, I can’t drive myself nuts wondering if I’m in the middle of a relapse and should be seeking help. I’ve prepared a simple list of three ways I can try to determine what’s going on in my life — to measure and track things and to hopefully get a handle on what are M.S. symptoms vs. a relapse or “flare”. If you have M.S., perhaps these will be helpful to you, but I share these with the traditional caveat: No two patients are the same and be sure to share this with your neurologist (smile).
I’m starting with three words: New, Revisiting and Severity.
“New” is easy. If I wake up in the morning, or at some other point of the day, and out of nowhere I experience a brand new symptom (and it lasts for 48 straight hours), I’ll be calling my neurologist. Frankly, there are only a couple of symptoms on the massive list of M.S. issues that I haven’t yet experienced just once.
“Revisiting” is even easier. If I experience a symptom of M.S. and it goes away for an extended period of time and then unexpectedly returns, I’ll be calling my neurologist. I’ve decided this will be the one instance where I don’t wait the 48 hours. Here’s an example: when I was diagnosed in the hospital, I was suffering from serious vision issues. It took almost 14 days, but my vision is decent now. I have new glasses, I’m not seeing double and I’m able to move my eyes at almost the same level than before my diagnosis. If I wake up one morning and the vision problem is back, I might even be waiting in the lobby of my neurologist’s office when she arrives.
“Severity” — now this is where it becomes difficult. I kid you not, nor do I exaggerate, but I have experienced some level of symptoms every, single day since my official diagnosis. My husband said once, “I don’t get this. You never had burning and tingling before, then you get diagnosed and now every day you’re experiencing some sort of symptom.” Dare I say that perhaps I haven’t escaped the auspices of “hypochondria worries” after all? I don’t get it either — how one day I’m relatively fine, experiencing just “silent symptoms” and then the next day, I’m in the hospital, all hell breaks loose and then never goes away. Some days, my left arm might be numb or tingling off and on throughout the day. Other days, my feet may “fall asleep” and then will be miraculously fine, but my right hand jumps into the action and fails to grip anything. The symptoms come and go though. I may experience a variety of different symptoms each day, but no single symptom shows up and stays for 48 straight, interrupted hours. So — is this the new normal or am I in the middle of a relapse or a continuation of my previous attack? Guess what, folks: I DON’T KNOW.
For the last two days, my shins and feet (both of them) have been on fire. It’s this deep burning — not like a sunburn — just an “internal on fire” feeling. I don’t know how else to explain it. I would swear that if you touched my leg you could feel it, but you can’t. So, it’s been at least 48 hours, but the burning comes and goes. It was gone again this morning, and now it’s returned again. Should I be worried? I DON’T KNOW. Can you “get” my frustration here? I’ve also had two very stressful days in a row, so now I’m also charting my daily activities to see if overexertion, stress, or something else, may bring on certain symptoms. I’ve even gone so far as to move my little space heater that’s in my office away from legs. I know that heat can cause a flare of symptoms, so perhaps that’s part of the problem? Again: I DON’T KNOW.
But, at least I have a starting point here with New, Revisiting, and Severity. I can start to track, map and question things that might lead to a better answer than: I don’t know. One can only hope.
Before I go though, riddle me this my friends. How do I determine what IS and ISN’T M.S.? What I mean is that one of the biggest symptoms of a heart attack is a pain in the left arm, that goes down the arm, may tingle, may burn. Um, I experience that every day. So, how prey-tell, am I to know when I’m having an actual heart attack? (Not that I anticipate having one — Frank the Echo Man said my heart is beautiful. But, it could happen). How am I to know if I have a pinched nerve vs. thinking that I’m experiencing an M.S. symptom? How should I know if I’m having a stoke vs. just having Diplopia?
I think it’s time to throw my ego out the window, to admit that I may not ever completely understand the mysteries of my own brain, and take today to celebrate that yeah! I have at least one muscle in my tummy!