Tuesday, March 13, 2012

MS.. Fatigue from doing nothing

My Tysabri infusion was rescheduled from last Wednesday to yesterday, which is why I didn't write anything in my blog due to being extremely tired afterwards.  Before the infusion I had an appointment with my neurologist to discuss how I had been feeling since starting on Tysabri, three months ago.  I don't think I've seen much of a difference in my MS, aside from getting incredibly annoying headaches on an almost daily basis which I mentioned to him.  I had already been taking Topamax (3 tablets in the morning) and he increased my dosage to 3 tablets in the a.m. and three tablets at bedtime.  We'll see if this diminishes the headaches.

When I arrived at my neurologist's yesterday afternoon, I became tremendously exhausted and had trouble making my way to the nurse's station to have my vitals checked.  And then came the almost half hour wait for my doctor to call me back to his office, which didn't help.  He mentioned that we were experiencing a drop in pressure that afternoon and asked if changes in the barometer affected me.  Yeah, absolutely!  Whether it drops or rises, when the barometer shifts my MS acts up on me and shows up in different ways.  Sometimes I can feel it in my hips and pelvis as they become very tight and then, all of a sudden, they have spontaneous spasms at the worst moments.  Other times I have pain from head to toe and can barely peel myself out of bed.  And then on other occasions I feel weak and tired and am not motivated to do a damn thing, other than feed my three girls and.. yeah, that's about it!
Non-MS people try to understand what it feels like to be fatigued, but it's not so simple to do.  We're not really "tired," we're exhausted for no damn reason at all except that we're conscious.  It would be easy to confuse us for being lazy but nothing could be further from the truth.  As for me, I haven't worked since around 2001, yet some days I feel as if I've worked a 10-hour shift, run 7 miles and am still expected to cook a 3 course dinner!  When in reality all I probably did all day was get up, went to the bathroom, fed my cats, made some coffee, had a bagel or oatmeal for breakfast (at 11am), took my daytime meds, went back to bed so I could do my physical therapy exercises for 10 whole minutes, then off to sit on my butt at the computer while watching television (or just listening to it) until 5pm, heated up a Lean Cuisine dinner, played with my cats while sitting on my butt (they have their own chairs close to me so I don't need to bend down), more computer time... and this is basically most of my days, only interrupted with doctor's appointments and occasional visitors.  And THIS is what exhausts me?  My parents, who are 69 and 70, have much more energy than I do and I find this rather pathetic but it's hardly my fault and they really do understand my limitations.

Life with MS is hardly an easy one and I've learned to adapt to it over the years but this doesn't mean I like it in the least.  My priorities are taking care of myself and my sweet little kitties and I've made peace with this.  They take me as I am and this is something that makes my life so much easier.  They don't care if I'm having a bad hair day (which, unfortunately, happens far more often than I'd like) or if I hurt too much to take a shower that day or if the litter box stays unclean one extra day.  They take me as I am.  Ahh, unconditional love!

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