Tuesday, March 31, 2009


I get certain feelings for different things. When a migraine is brewing, I get this funny feeling in my teeth to warn me. When I wake up and my teeth feel gritty and tingly, I know what is coming, and batten down the hatches, so to speak, in preparation of the impending doom that is looming over me. I make sure there is enough ibuprofen in the house, and check to make sure there are enough "comfort" foods to get me through it -- soups and other things that don't require a lot of heavy chewing. If these things are low, I have to get to the store ASAP to stock up before the migraine descends and hits me over the head like an evil anvil.

Even worse than migraines is the dreaded MS attack. I will gladly take a migraine over an MS attack. At least my migraines only last about 3 days and then all is well again. My attacks drag on and on and on, until I'm sure there is no light at the end of this too long tunnel. Right out of the gate my attacks were long: My first attack lasted about 6 weeks with the steroids. For 6 lllllloooooonnnnnnggggg weeks my vision was messed up to the point I felt trapped in a body without a thing to do, I couldn't read, couldn't watch TV, couldn't get on the computer, just had to sit and wait. It was also my first time with the ataxia and I had a hell of a time walking around anywhere. I stumbled and gimped around trying to do the things I normally do. Luckily I couldn't see anyone looking at me trying to figure out what was wrong with me, something that annoys me -- I prefer people just asking me outright instead of keeping their distance like I'm contagious.

When I'm getting attack-y (or attackie, or if you are really into cutesy things, attacki) I get this certain feeling that tells me, "Blindbeard, this is a real attack and there is not a pseudo thing about it." I'm not sure I can really put words to it, but I am going to try (try to hold your applause). The first thing I notice is that I start feeling this depressed, heavy mood wrapping around me and smothering all happy thoughts -- not that I get too many of those (there, I said it for you.) The negative thoughts about myself and this disease kick into overdrive. I start feeling like I'm less than human and a non-entity, someone who is not as worthy as those around me, even though I don't believe that about anyone else regardless of any disability they may have. I'm sure that is just the depression whispering into my crusty ear, and I'm dumb enough to listen.

Next is the fatigue that wipes me out and makes the couch my best friend, which is already my bestest buddy, but we become even closer and whisper our secrets to each other all day long. I only leave the couch to hunt and forage in the kitchen or grab some books and, my new favorite hobby, my highlighter pens to highlight the books until they resemble coloring books instead of the informative tomes they used to be. I nap for a good portion of the day, go to bed early and still sleep as much as ever. It doesn't matter if I take my anti-fatigue meds or not, I'm still just as tired. Trying to move my heavier-than-usual body is a chore and insures my continuing to mold my ass prints into the couch. We are moving mid-month and I hate that I will be no help at all. Even if I try to help, my family won't let me. All I get to do is it put away the little stuff and watch everyone else huff and puff (and try not to blow the house down) moving my crap. I know they are only banning me from helping out of love and concern for me, but it makes me feel worse about this whole having-MS-thing. It makes me feel like a burden on everyone around me and that is a feeling I hate with every fiber of my rotten being.

I'm feeling tried, depressed and like a huge burden, and all those feelings make me unfit for human consumption, so I must go before I disintegrate into the mushy pile of tired, depressed, burden-like crap that I am. What I really want to know is whether anyone else gets a certain feeling when they are getting attack-y, a feeling that makes you KNOW that this is a real attack coming on regardless of what any neurologist says about it.


Jen said...

I have such clear-cut attacks and remissions currently (who knows why?) that it's as though a switch has been turned on: stupifying fatigue, and the limbs turn into lead. It's almost like a barometer. Then the floor drops out from under me.

My attacks range from 6-12 weeks, with the steroids. When I had the 6th-nerve palsy in my left eye (double vision), I wasn't given any steroids because I was participating in a clinical trial, and that was part of the protocol. So 8 weeks of that and feeling pointless because others were driving me everywhere.

Steph said...

Before both of my major attacks I had this feeling that I really wasn't all there. I remember telling my mom that my body is moving fast and my mind was moving slow. It was like I was just zoned out the whole day before and when I did try to focus my mind was just lagging. Of course when I told my neurologist this he just kinda gave me the, yeah, sure uh-huh, if you say so look...



No set pattern here.

But, OF COURSE, I cannot resist making comment about your sense of depression/depressed mood just prior to onset of an exacerbation (it's my "thing", ya know?)...although I can't site any studies at the moment, in talking with various MD's and MSers and discussing OTHER neurological disorders as well, there DOES appear to be a descriptive psychological pattern that can occur just prior to onset of a relapse or manifestation of neurological disease, such as Parkinson's. Most believe the psychological phenomenon IS part of the physiological disorder itself and NOT the result of a mood/mental disorder (whew! aren't you glad to hear THAT?!?). Seriously...if you consider PMS in the same way, it is the rapid shift in hormone production that creates the shift in the female mental and cognitive functioning (i.e., irritability, tearfulness, suicidal ideations, fatigue, etc.)...low dose hormones serve to reduce or even eliminate PMS by providing stability of the levels.

"They" just haven't figured out yet WHAT it is in the brain that causes such shifts in MSer's (and other neuro diseases), BUT...the phenomenon IS real. So, I give you permission to consider your "depressed mood" as a symptom of your MS versus a symptom of MADNESS...fortunately (or unfortunately) you're NOT crazy (at least on THIS issue. LOL). And you certainly DO NOT have to like the mood, but maybe you can cut yourself some slack (like when fatigued...doesn't mean your a lazy ass hat!) around this issue?

Huh huh...I said "ass hat"...Huh huh.

@whiskey.xray.yoga.zulu said...

Thank gawd CHEESE is such a BRAIN. I always thought I was depressed ABOUT the attacks, but sometimes that's the first "sign" that one is coming. I mean, I may be surly, and a cynic, but I am not (typically) depressed. And when I am depressed, I feel guilty about it, and get more deressed. And then the attack really sinks in and gets nasty, and I feel MORE depressed and MORE guilt...

I'd like the extra large serving of "let's blame it on the disease" please.

Lisa Emrich said...


You're moving? Yikes, there's an extra serving of stress for ya.