This past week, we here in Portland enjoyed an unexpected bout of warm weather. More accurately: some enjoyed it. Others, suffered it.
MS is heat-reactive. This means that heat from any source (weather, fever, even thick clothing) can cause symptoms to exacerbate. Studies have shown that for many people with MS, just one degree can cause problems.
Now, not everyone with MS has a difficult time with heat; there are some who either have no problems with it or consider the problems negligable. I am not one of those people.
I thought I would take a moment to describe just what "heat-reactive" means in my life. I may add to this list as the summer rolls on:
*It means never turning on the heat in my bedroom, even in the winter.
*It means running the air conditioner nine months out of the year.
*It means never wearing a jacket if it's more than 60 degrees outside.
*It means no long-sleeved shirts, unless I'm sure wherever I plan to be is well air-conditioned.
*It means calling everywhere I go, before I go, to make sure it is, in fact, well air-conditioned.
*It means avoiding the places that aren't.
*It means horrible fatigue in the summer, even when I've had the air conditioner on. Somehow, my body knows when it's gotten warmer outdoors.
*It means wondering how my body knows when it's warmer outside but doesn't seem to know I need to go to the bathroom until it's an emergency.
*It means skipping trips to the zoo, the park and the swimming pool with my kids.
*It means feeling guilty because I have to.
*It means being sick to my stomach for months on end, and feeling like I never keep a meal down for longer than ten minutes.
*It means having increased difficulty with my memory, concentration and attention span.
*It means feeling like a prisoner in my own home all summer long.
*It means staying indoors on my birthday, which happens to be in July.
*It means having my food brought to me inside, while everyone else stays outside for a BBQ.
*It means taking a mister with me when I do go outside, and making sure it doesn't hit me in any embarassing, Fergie-from-the-Black-Eyed-Peas areas.
*It means having to choose between the discomfort of the heat or the discomfort of the cooling vest.
*It means having all those symptoms that were just minor irritants in the wintertime become major pains in the ass all summer long.
*It means taking a nap in the heat of the afternoon...because I simply have no other choice in the matter.
*It means making all appointments early in the morning, and hoping it doesn't get hot earlier than anticipated.
*It means bloating up and looking as if I've gained 15 pounds...all while not being able to keep down any food.
*It means drinking water all day, every day...and feeling like I'm dying of thirst if I go more than ten minutes without it.
*It means keeping a carafe on the nightstand and thinking, "My grandmother used to do the same thing."
*It means endless appointments to the doctor, when I should be inside.
*It means endless trips to the ER at night, when I should be inside.
*It means constantly cancelling appointments and plans, because the weather that was supposed to be "windy and partly cloudy" ended up being "hotter than a tin roof in Texas."
*It means being too tired and sick to keep those appointments and plans anyway.
*It means legs that are either too wobbly to walk without a cane, or hard as rocks from muscle spasms.
*It means being constantly worried that you'll end up throwing up a much-needed medicine, which will then make you sicker, causing you to throw up even more.
*It means actually being relieved when a pharmacist tells you, "Yes, we carry that medication in suppositories."
*It means wanting to smack the next person who says, "But you don't LOOK sick!"
*It means hoping they were telling the truth.
*It means not knowing what to say to people when the call and ask, "How are you doing?"
*It means having strangers assume you are drunk, thanks to trouble walking straight and slurry speech.
*It means wishing you were drunk, so you wouldn't care what the strangers thought.
*It means not thinking about getting drunk, because the last thing you need is a hangover.
*It means piercing headaches every single time you step outdoors.
*It means hating anyone who tells you on the phone, "Of course we have air conditioning!" but neglects to tell you that the owners of the place are too cheap to actually turn it on.
*It means always carring with you: a toothbrush, perfume, extra medicine, mints, bottled water, wet naps and extra underwear.
*It means hoping that no one will see the extra underwear and ask you why you are carrying it around with you.
*It means wishing that great outdoors concert was indoors, and then realizing how hot it would be inside a club with a million people right now.
*It means listening to people tell you how great medical marijuana is, when all you can think is, "The LAST thing I want is to be around something else that generates heat!"
*It means having to explain to every doctor, nurse, relative, friend and well-meaning passerby why you're so sick in the summer.
*It means having at least half of them not believe you.
*It means having the other half say, "Why don't you just eat an ice cream cone?"
or, "Wear white, it will keep the heat away."
*It means wishing white really did keep the heat away enough to matter.
*It means having people constantly tell you to move to a "colder climate," not realizing that while cold isn't as bad as hot...ice, wind and snow are not exactly friends to someone who has trouble walking.
*It means explaining to people that you DID move to a colder climate, and the heat still sucks.
*It means sitting at dinner tables and eating nothing.
*It means having to explain why putting a heating pad or hot water bottle on sore legs is only going to make matters worse.
*It means wishing they didn't.
*It means getting cabin fever in the summer when everyone else got over it in the spring.
*It means finding invitations to cookouts and parties on boats from your husband's co-workers in the trash, because he didn't want you to see them and feel bad.
*It means eating late at night, even though you know it's going to make you gain weight and despite the fact that you must now eat alone, because you're more likely to keep the food down then.
*It means keeping a lot of Lysol in the bathroom.
*It means always knowing where your cane is.
*It means forgetting everything else.
*It means appreciating winter more, and while everyone else is complaining about the rain...smiling and sighing in relief.
*It means knowing that you'll have to go through it all again next year.
*And most importantly, it's knowing who loves you and being glad they do...because with how grouchy you are in the summertime, if they didn't love you, they'd be history.