a few weeks ago, joe & hodges (reference: the couple i went to france with, and practically my second set of parents) could tell i was getting cagey- i really needed to get away for awhile. change of scenery, all that jazz. the trip (aka meg's snowbird vacation) was fantastic- i couldn't have asked for better hosts and hostesses. everyone went out of their way to ensure i was comfortable, and were so understanding of the limitations my fatigue puts on activities. i was reminded of how much i miss my friends and the familiarity/comfort that can bring.
as far as the air travel itself, i was pleasantly surprised at the assistance of airline and airport personnel. i was originally hesitant about the trip mainly b/c of the anxiety of literally getting to the airplane. you know how massive airports can be- the gate for your next flight is practically in another state. the entire airport should have its own zip code! and then there's the staring, which i still struggle with. yes, i am young, walk slowly and sometimes awkwardly, and have a bright blue cane. and yes, i will use it to bat you over the head. but compassion from others can sometimes surprise you- during every flight, people helped me with my luggage, my coat and cane, and maneuvering down those tiny aisles. i even had a brush with fame- twice! (but that's a whole other story, for another time. i already have too much to blog about today.)
my health on the other hand, was not as cooperative. the travel itself wore me out (as it can anyone who travels in the chaos of holiday airfare) and required frequent naps throughout the day. but my speech continued to worsen over the course of the week. i have had problems with my speech off and on for the past 8 or 9 months, but people can understand what i am saying. however this time, the slurring and mispronunciation of words was so pronounced, that it was extremely difficult for others to make out my statements. i kept thinking it would go away, it would lessen- maybe i needed a nap. but that evening, when it still hadn't lessened, i started to get scared. by this point, my tremors/shaking had increased as well- i couldn't put my earrings in, button my jeans, sign my name, turn the pages on a book. my legs joined in on the act also- they were shaking at a level of intensity i had never experienced.
and then, i had my first fall. yes, we've all fallen before- off our bikes, off a porch, out of a car (jk). we've all tripped over a brick or missed a step. i've had times of such weakness that i stumbled or slammed into a wall. but never outright fallen. i had decided to take a shower while hodges was out running errands (right away- bad idea- someone should always be home) and fell out of the shower. no, seriously, OUT OF the shower. i landed on my back, on the hard tiles of the bathroom floor, and could still feel my legs trembling. i remember thinking "okay meg, you had your first fall. now that's over with." i guess i got carried away with my independence- being able to travel alone, etc. so the shower was a bad decision, and i learned my lesson, even tho it's a blow to my ego.
i emailed my MS nurse practitioner, telling her about the situation, and how concerned i was. she called my cell phone later that day, and asked me what was going on. the speech impediment was blatantly obvious, as i struggled throughout the conversation to share my symptoms. she blew me off. her exact quote was (in a snippy tone) "what do you expect me to do about this? you're in north carolina." i was speechless (which worked out well since i couldn't talk anyway)- these were major flares, and she's telling me to "rest"? are you kidding? then she said that the slurred speech wasn't due to my MS (ok, i'm not even a doctor, and i know that 40% of MS patients experience this during the course of their disease).
the conversation went downhill from there- she refused to attach importance to my situation, and i was left frustrated and a bit hopeless. i tried not to cry- i wasn't successful in that attempt but at least i held out until after i hung up the phone. there i was, away from home, experiencing some of the worst MS symptoms of my entire history with this disease, and completely alone. of course literally speaking, i wasn't alone, and that isn't meant to take away the comfort that hodges was offering. but who else was i to turn to? it was hard not to feel a bit hopeless. my internist told me once that it can be a very lonely thing, to be a patient. i don't think i really knew what that meant until last week. and boy, did i feel alone. i felt alone, let down, brushed off, crushed. this may sound extreme to some of you, but the entire situation was extreme. i try my best to downplay my symptoms, and even when something new pops up, i at least attempt to stay rational. but i was really scared. for my body to react in the way it did, terrified me. i had no control over anything- it was like my body was a foreign object that i was operating without the manual. i practically needed help to guide my eating utensils!
(update: my internist was out of town during this fiasco, but when my she returned, she was extremely concerned about what was going on. she actually had me to come today to discuss it. so, end result is that i got medical attention, but after the fact.)
by the end of the trip (i flew home monday afternoon), things had begun to look up. my slurring had decreased, and the tremors/shaking were under control. (at least enough to get on the plane.) i don't know why everything lessened (just like i don't know why it began), but the whole experience left me completely exhausted, both mentally and physically. i had so much to think about- i kept replaying the scenes in my head, over and over again. is this going to happen again? will it be worse? did i do something to bring it on? will it occur more frequently? more intensely? how can i stop this? how can i work on my slurred speech? what is going to happen?
as this week came/went, i tried to not let the flare consume my mind as much as it had been, which left me time to think about the trip in a different perspective. like how great it was for mySELF, my soul, my mind, to get away from things for a bit.
how comforting was is to have a 4 hour morning coffee session in my pajamas and sleep with my favorite large boned tabby, mr. jack. how funny it was to watch beau do his happy crazy dog routine of howling and whimpering over anything or anyone that he finds exciting, and watch really bad movies with daniel (not to mention the one i put elle and patty through). how refreshing it was to drink cheerwine again (elle had a bottle waiting in the car!) and frequent a few of joe & hodges' favorite restaurants (where of course he knew the owners- duh, this is joe we're talking about). how indulgent it was to eat mrs. blaine's scrumptious butter ball cookies (jean- the container is already gone!!) and experience hodges' impeccable meals (mere- i was even given a cooking lesson! i helped make a
delicious, and edible!, black bean pumpkin soup- we'll see if the cooking lessons stick). how normal it was to show joe how to download his photos, drive around to look at christmas lights (btw, the neighborhoods in greensboro had these gorgeous balls of xmas lites hanging from the trees- if someone knows how the hell they get them up there, i am dying to know), and take afternoon naps that the whole household participates in. what it boils down to is that the trip made me feel normal for a bit.in fact, joe & hodges have invited me to come down every 2 months to be "normal"! and know what? i'm going to try and take them up on the offer! i'll practically be one of those snowbirds that disappear from yoga class starting January to head down to FL in their RVs (but without the RV and not a senior citizen). it will be some much needed "me" time, a feeling of independence and progress.
what happened during this trip could (and probably will) happen again, but this time, i'll know what i am dealing with, and be a little more prepared. and by more prepared, what i really mean is less scared. oh- and i'll know not to call my nurse practitioner for any sympathy! hah hah.
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