So to go out for one night or several nights can be a big thing for me! I try to make it look easy for others but people have no idea what it takes to go out. For one night on the town I have to plan when I took my meds during that day which means I pray someone told me more than one day in advance we were going out. If not it means I may be taking an extra mestinon to get by so I do not have flare up of my symptoms while we are out. I also take longer to get ready and do not want to deplete that energy reserve I have at the beginning of the day. So I have to plan to find a quick and easy hairstyle, clothing option, and sometimes cute wedges or low heels (high heels are no longer my friends as they over exert my legs to the max). I can only wear high heels for like an hour now before I am so fatigued that I cramping for about 7-10 days.
Then if I decide to drink while we are out sometimes I feel as if my symptoms are exacerbated, LOL. When you drink and have MG you feel like you are slurring, double vision, a bit of weakness, dizziness, balance issues, and some weakness (which can all naturally happen when drinking too much) but I only had like a few drinks well below my old maximum, LOL.
When I plan to go out or travel for more than one night or day it gets more complicated. I have to make sure I have plenty of medication for the trip, my suction machine in case somehow I get choked up (which is super rare but has happened), and plenty of clothing options for me as I find that weather and temperature affect me greatly. When I am extremely hot or cold I have severe flare ups of my condition starting with weakness and that weakness causes issues with walking and swallowing and sometimes breathing. So having the right type of clothing is critical for comfort. I carry water everywhere I go and I protect myself from the sun at all times. I still enjoy fishing, swimming, and running but I have to be much more cognizant of how my body responds to the weather now and cannot push so hard when I am outdoors. I swell really bad in the heat and this is not fun or healthy. This inflammation is a direct response to what I am doing to my body. You have to listen to your body. So I hydrate and cool off and remember I do these things for fun and luckily have friends and family who understand and help me modify my activities so that we can all enjoy them.
However, planning for me has not changed that much for me though since I am a very organized person. I have an excel spreadsheet that I keep saved and update for each trip based on what is needed. There is one for fall/winter and spring/ summer, LOL.
On a more serious note though…this did bring up a good question for me? Because I only really had weakness issues with my legs in extreme weather (over 95 degrees and under 20 degrees) was it worth talking to the doctor about it? The answer was yes. walking long distances in this weather was too much for me in some places and so I asked for a handicap placard for those occasions. Though I only use it if I feel I need it because I am too prideful to use it if I don’t need it I will use it if I feel it is necessary no matter who is around. You do not have to report it to your job and it does not state that you are unable to do your job within the scope of the abilities of your job. It does not cost much (in North Carolina only $5.00 per card). Your doctor has to sign off on it and you can get a temporary one or a permanent one for 5 years. Below is more information on it:
Do not use MG as a reason to sit at home and be a hermit! Go out and have fun! If you need help write me, and ask questions for free, talk to someone professionally (though I do have a psych degree it’s a masters in psych. so feel free to look higher up the chain if you like), talk to your doctor, talk to your friends and family, but get moving! Remember it’s ok to cry and have a few days to be upset but then you have to get up and move on!