I have Multiple Sclerosis. Apparently, inquiring minds want to know, so I'm going to give you an expose on what having MS is like for me. Let me begin by saying that MS is a disease that is unique to each person who has it, so if you know other people who have been diagnosed, don't casually ask about their neurogenic bladder just because I tell you about mine. Here we go...
In late 2007/early 2008, I became excessively dizzy. This wasn't a vertigo kind of dizzy, or a drunk kind of dizzy. This was the type of dizzy that required me to be in a constant state of horizontal. This was the type of dizzy that only allowed for me to crawl to and from the toilet as my sole daily activity of living. I went to the doctor. I went to the neurologist. I went back to the doctor. I had blood drawn. I went to the doctor again. Finally, I got a sinus infection and went to the otorhinolaryngologist. The ENT noticed a nystagmus in my eye. Basically, on top of having my head spin like the kid on the Exorcist (minus the pea soup), my eyeball was bouncing every time I looked over to one side, trying to go back to center. ENT had me march 'in place' with my eyes closed. This was not easy for me to do at that moment. In fact, it was so difficult that when he had me open my eyes, I found I had turned 180 degrees during my march and was facing the opposite wall. He told me that I needed to have an MRI and that autoimmune diseases were often the culprit for such conditions. He was the first person to drop the 'multiple sclerosis' bomb on my ears (A bomb that was far more threatening than North Korea's current one). The MRI came back with white spots. See, scleroses are plaques that build up in the brain and spinal chord (the central nervous system, or CNS) so white spots in the brain are not a good sign. I then went back to the neurologist, who previously had thought nothing was wrong with me.
Neuro dude thought he was a god. He was still doubtful that I had anything wrong with me other than some sort of virus. He did, however, have me go in for another MRI. After waiting six months, I had yet another MRI. There were more white spots than on the first two, so I was sent for a spinal tap to confirm that I did have MS. I was diagnosed with Relapsing Remitting Multiple Sclerosis (yes, there are more aggressive kinds) in October 2008, shortly after becoming pregnant with my second son. Neuro dude was shocked that I took the news so well. I didn't cry, or even ask any questions. But I'm a pessimist, so I figured I had it long, long before the actual diagnosis. I had done a lot of reading, and the sudden symptoms I was having all seemed to fit. After the dizziness went away (of its own accord) I went to the Minnesota Zoo one day. During a long walk to see the outdoor animals, my left leg suddenly felt as if I had been caught by the mafia and fitted in a cement shoe prior to a watery finale. I was dragging my leg behind me by the time we got back to the building. People were staring. It was embarrassing. (I'm used to it now) This particular problem seemed to fit well with everything I had read on MS. I needed no further convincing.
When you're pregnant with MS, your symptoms usually go into remission. It's after you're done being pregnant that shit happens. The week I birthed my son, I also started injecting myself with glatimir acetate. It's a subcutaneous drug that is supposed to keep symptoms in remission more often/longer and slow down the progression of the disease. Other than the occasional extreme faux panic attack, there aren't many side effects to my particular injectable. On the downside, it's an injection that I have to take daily. Sometimes it bleeds. Sometimes it hurts like a mofo. Sometimes I get as bruised as a junkie. But mostly, it's not that bad. What's bad is the disease itself.
The biggest problem I face with MS is FATIGUE. I had mononucleosis in high school (from making out with a side dish while I had a boyfriend...karma). That was nothing compared to how I feel some days because of MS. Some days, if the house were burning down, I would only *consider* fleeing. Most likely, I would incinerate. That's how little energy I have sometimes. Today, for instance, I was so tired that after I took my firstborn to school (I probably shouldn't even have been operating a vehicle), I went back to bed and slept until noon. (It's very lucky that my kids like movies) Guess what? I'm still tired. In fact, I'm going to save this draft and go to bed now. I'll finish on another, less exhausted day.
Slightly less exhausted now, so we'll continue. The second biggest problem with my MS is the limping. I'm a gimp. I can't walk quickly anymore. And I often hobble or have difficult lifting my left foot. People stare. I don't care. I do think I might use a cane in the (possibly near) future. My legs sometimes give out on me completely. I won't be able to stand, or I'll just suddenly fall down. Doing that on the stair is my absolute favorite. Running is an impossibility. In fact, both my children know that running away from me is a cardinal sin in our family, and they will be severely punished when I finally get my hands on them again (Good thing they don't realize that they could just keep running and I'd never catch up). I miss going on long walks. I have always liked walking around outside. And hiking. I still do those things, but only when I am with someone else who can potentially fetch help or a car, if necessary.
Earlier in my dealing with MS, the next symptom would have been my top irker but it has gotten better over time through remissions and Kegel exercises. I have a neurogenic bladder. This means that my bladder never empties completely. Sometimes I feel like I have to pee, and I go sit on the toilet for five minutes waiting for the urine to come out, and when it does, there's almost nothing there. Then, ten seconds after I leave the bathroom, I urgently have to pee again. The urge is urgent. Self-explanatory? Nope. When I get the urge to urinate, I had better find a restroom within two minutes or I might have a puddle at my feet. Anytime I go anywhere new, my first order of business is to locate the toilet. I know that I will have to visit said throne at least once if I'm going to be in a particular location for an hour or more so I like to acquainted quickly.
While we're discussing the potty, let's talk about poop. It's my kids' favorite word, anyway. I am extremely constipated. I've always been a toilet clogger, but since my immune system started attacking my CNS (central nervous system), dropping a deuce has been more difficult than birthing a baby. I am not exaggerating. On the up side, I save money on toilet paper. Let me tell ya, when it's hard as a rock, there's nothin left behind (pun intended).
Now that we've gone TMI, I might as well talk about my battle with depression. Mental illness runs in my family. I have an anxiety disorder and chronic depression. I have been on an off pills for this since 2003, when I almost instantly regretted getting married (Turned out to be the best decision of my life, however). I have no been off of them since 2007, a few months after having my first, extremey colicky, child. You've probably noted that those events pre-date my MS diagnosis. Well, MS causes depression as well. It's unclear whether having an incurable, debilitating disease is the culprit for most MS patients, or whether the attack on the CNS is actually responsible. Either way, MS has worsened my depression (along with another major life event that happened around the same time...but that's a whole different story). I go through bouts of medication adjustment. Usually, when I start thinking about running my car off a bridge, I know it's time to up my dosage. Ya know? Nah. You probably don't. That's okay.
So those are my constant symptoms. I get other crazy things happenening every now and again, like numb or tingly body parts. Sometimes the veins in my thighs turn hyper-blue and bulge out weirdly. And I have actually shit my pants a time or two (I won't go into how humiliating or degrading that feels as a *young* adult). It's all related to the MS somehow. What a fun disease, eh? Hope that answered some of y'alls questions.
No comments:
Post a Comment