Multiple Sclerosis and Lupus victims affected by heat: what they should and should not do; how the world perceives them
©copyright 2003 by Bonita M. Quesinberry, R.C.
This writer recently learned how heat affects Multiple Sclerosis (MS) patients: a common symptom long associated with Lupus, an auto-immune disease causing degeneration of connective tissues—muscles, skin and vital organs—a patient's immune system contrarily treating his or her own body as if it were the bad guys. Other Lupus symptoms are sun sensitivity, flu-like illnesses—even outside flu season—weakening muscles including the heart, red facial blotching and early aging of skin tissue.
Additionally, a recent televised scientific documentary stated: "medical science is beginning to believe MS is comprised of more than one disease, often including Lupus and Fibromyalgia;" the latter of which doctors don't know what is or how to treat. Makes one wonder how they came up with a name for this malady.
As a victim of Lupus, MS and Fibromyalgia, as well as a host of other ailments including epilepsy, hypoglycemia, etc.—undiagnosed until early 30's; today 59—I was passing out due to Texas heat by age 8; as well as experiencing sun poisoning while other children merely got a little pink in fifteen minutes time. Doctors, then unaware of MS and Lupus, contributed this reaction to having been born in California; therefore never having acclimated to Texas weather: ridiculous diagnosis at best.
I did not then, nor do I now, perspire: a body's natural cooling system obviously on the blink. Whether or not this is related to Lupus and/or MS is uncertain. However, hot baths or showers in any season are of equal and dramatic affect: rendering the body quite weak and unable to do anything until it recovers: rest and cool air.
Alas, the outdoors and working in gardens are enjoyable pass times. Drinking a lot of lemon-lime Gatorade and keeping the head and upper garment drenched with water as well as working in shady areas help. Wide-brimmed hats are a must: only a few minutes of sun striking the top of the head results in feeling as though it literally is about to explode. Heat exhaustion or even stroke follows quickly together with severe migraine: the latter of which most MSers do not experience. At least, it is hoped they do not.
When younger, temperatures up to 85° were tolerable: barely. This decreased over the years until, today, outside temperature is determined solely on body behavior: fully aware when it begins to rise above 75°—the highest endured now. So, it's a good thing I now live in cooler Oregon and, until recently, Washington.
The best thing to do, when temperatures cause an MS body to spiral out of control, is to lie down in a cool room and remain as still as possible under a direct blowing fan with a cool cloth or ice pack on top the head: until external temperatures become more bearable. Also, avoid hot foods, neither light nor heavy: either of which cause a body to heat up even more from both the heat and its labour to process food. Raw fruits and vegetables with tap-cool water or juices are better. Ice water, on the other hand, can further shock an overheated system: setting off worse MS and/or Lupus episodes.
Anything negatively impacting MS and Lupus patients causes extremely unpleasant, and often very painful, MS and/or Lupus episodes to follow rather quickly: including over-exertion, stressful environments, arguments, eating the wrong foods, exposed to illnesses of others, and so forth.
Unfortunately, heat is another: including keeping a house too warm in winter months. For colder seasons, it is better to maintain a temp of 65 in the home. And, if victims live in or visit hot climates, summer becomes a nightmare of plans cancelled, promises broken, and/or leaving events early. As such, learn to do neither of the first two: instead of planning, be spontaneous based on how you feel at the moment; and, if a promise is given, do so with codicil: "Lord willing and this body cooperates."
As for leaving an excursion or gathering untimely, make sure friends and family understand beforehand: MS and Lupus episodes strike without any warning whatsoever. We might arise in the morning feeling really great, even think, "This is going to be a good day." Within an hour, we might feel as though a Mac truck ran us over and we didn't even see it coming.
Those who truly love us should accept: when we say we MUST go home, we absolutely must. Or, if we say we cannot do something, rest assured that we cannot. People never should chide or accuse of being a party-pooper or deliberately cause departure delay or insist on attendance.
Anyone who does or says those things, or worse, is self-serving and lacks any empathy whatsoever to the plight of MS and Lupus: in essence, they are neither friend nor family. And, one of the worst things anyone can say to victims of these diseases is, "But, you look the picture of health!" It comes across as an accusation of faking it. No one in his or her right mind would know how to feign MS, Lupus, or any other disease for that matter; nor would any sane person want to do so.
Besides, these maladies, for the most part, are internal. Of course, we might look very healthy, but we are dying inside as well as smiling through tremendous, often unrelenting, pain. Neither can pain be faked, especially pain a person never experienced: therefore, it even cannot be imagined—subtly referred to as psychosomatic.
The best victims can be, to self thus to others, is determined by two things: 1) knowing limits unique to each patient and staying within them, therefore holding up longer; and, 2) making sure friends, family and employers are fully informed about how MS and/or Lupus affects day-to-day capabilities and activities or lack thereof.
For the last 22 years of my career, I could work no more than 5 hours a day. So, I made it a point to be the best at what I did, therefore employers were more than willing to meet my special needs. That is, until it became increasingly obvious I no longer could hold up to 5 for 5: age 53. No matter what, we can live with these afflictions and be better for it—with the right attitude and care. Not only can we be better for it but also, in smiling through it all, someone else might become better through our cheerful suffering.
Enjoy your summer…at your pace and place.
©copyright 2003 by Bonita M. Quesinberry, R.C.
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To learn more about Ms. Quesinberry, visit Unicorn Haven