This is my journey from the very first symptoms of Multiple Sclerosis; 17 years of progressive disability, through the search for a cure to the angioplasty procedure for Chronic Cerebro-Spinal Venous Insufficiency that pulled me out of a wheelchair and into a second chance for life.There is no cure...but we have for the first time a chance for an enhanced quality of life.
Thursday, July 18, 2013
Stay hydrated”..RIGHT, leave me alone!
Drink even if you think you aren't thirsty: if you feel thirsty, it means you are already dehydrated and your body is trying to let you know. Of course PwMS may not get that message from the body to the brain, so keep a water bottle or wine skin attached to you, your bike, car etc.
Go to any CCSVI website and the words”keep hydrated” or “drink plenty of water” will be on every page or close to it. I use to think I was a little OCD about hydration until I met Daryl. Seriously, even many of us who have had the procedure are tired of hearing about it. The truth is that it is not simply a good idea, or necessary: it is critical that we stay hydrated. I am one of the lucky ones who can tell quickly when I become dehydrated. Some people have not been as fortunate. Feeling thirsty is a sign that you are not keeping ahead of the need for drink.
Due to my own severe heat intolerance I also have hyperhidrosis (profuse sweating). If you are picturing a large person with a dirty tee shirt and huge armpit sweat marks…you have the wrong picture. As long as I keep my core temperature under the red zone, I look like any other old lady on the smallish size. It takes much planning and cooling equipment, as well as an up to the minute means of weather information. An individual can be severely dehydrated, particularly in the summer, and not be aware of it until it becomes a medical emergency.. It doesn't matter if you are in constant A/C or not. People can sweat as much or more during as they do in the summer. It is quite possible to lose even more fluid during the winter months under all the flannel and knickers. Dehydration can and will be a catalyst for restenosis.
Walking in public places, church, meetings etc. can be embarrassing if you let it. I don't. My health is more important to me than the “drinks are not allowed” signs in many businesses. Try to bring your sippy cup into the theater and see what happens. They all have “no dogs allowed” signs also. Well there are exceptions to every rule. The ADA allows access to service animals who are trained and certified to accompany disabled people in grocery stores, airplanes or any other building or facility open to the public.The law also makes allowance for the disabled to have “handicapped only” parking spaces. Of course enforcing the law in both the above situations has been a nightmare for many of us. I have lifetime handicap license plates and 2 placards for cars in which I am a passenger. My service animal has all of her papers and certification on a laminated card I take with me everywhere she goes. (BTW in the US you don’t have to show any paperwork to anyone but it saves a lot of confrontation opportunities from ruining your day.)
So what do we do if we have to use other medically necessary non-traditional aids? You have options. You can explain quietly that you aren’t trying to stiff the theater for the price of a Coke. That rarely works. You can carry a large purse but eventually you have to take the bottle out and actually use it. You can appeal to their compassionate side and explain your situation. That works at least 10% of the time. You could also have your doctor sign a “medical necessity” form. That option works for me. Should this all be necessary? In a word,hell no! (Ok two words) But we all know the crap we have to put up with when it comes to the rights of people who are handicapped, disabled or otherwise not the “average” citizen; whoever that may be, I haven’t met one yet. What we are talking about here is not setting up a wet bar in the county courthouse. We are talking about an unobtrusive innocent container of water.
I have written 7 or 8 blogs about how to beat the heat from absolutely free to $1000.00 & up. Since I have to wear a cooling vest, sometimes even in winter, I do what I must. If I needed a portable oxygen tank, I wouldn’t be as concerned about etiquette as I would be about passing out from low O2 stats.
Heat intolerance may lead to heat exhaustion under severe circumstances. If you experience signs of heat exhaustion or heat stroke, you may need to seek emergency medical treatment. These symptoms include:
• Loss of consciousness
• Muscle cramps
• Body temperature of 104 F or higher
• Elevated heart rate
• Rapid breathing
Some doctors may tell you that is heat intolerance is merely an inconvenience. However MS induced heat intolerance can result in heat exhaustion and stroke just like anyone else out in the sun too long. We don’t have to be in a scorching desert; a warm room can do the trick. Heat stroke can be fatal.
If you have MS, heat intolerance can lead to problems with your vision. This can range from blurred vision to temporary loss of vision. An increase in body temperature amplifies the distortion of your body’s nerve signals in those with MS. This is referred to as Uhthoff’s phenomenon.
What to do?
Stay hydrated and keep cool.There are a myriad of different cooling methods.
A cooling vest with a liquid Cooling System has been proven to be the most effective, affordable portable personal solution to heat stress. This is not a vest you soak in water which becomes slimy, can't be worn under other clothing and doesn't perform well in high humidity. This is not a vest with packets of frozen liquid that are bulky, heavy and quickly lose their effectiveness. This is a vest that is lightweight, breathable and uses NASA-developed technology to cool you with chilled water circulated through a network of microtubing. It costs a little more, but it works much better. Cost: approximately $500.00
This is the system I use:
An ice vest with packets of frozen gel is much cheaper and fine for most people. An extra set of gel packs is very convenient. You can have one in the freezer a while using the other.
$35.00 & up
Bandana cost: $10.00
Evaporative gardening hat: cost: $20.00
Make your own cooling vest:
Cooling neck wrap
One yard of 36″ wide tan cotton muslin will make 9 neck coolers. “Magic Crystals” are the watering crystals you put in the soil of your potted plants. “Moisture Plus” and “Soil Moist” are two brand names. It is NOT vermiculite or perlite! These tiny beads absorb up to 100 times their weight in water, and swell with the water a then give it off slowly to the plants, or to a hot neck in our case. They can be found in the garden department of discount stores, or garden centers. One package will make MANY neck-coolers.
Cut the muslin into 4″ wide strips (by 36″ long). Fold lengthwise and sew across the short (selvage) end, and down the long side, using a fairly short stitch length. Leave the other end open. Turn the tube right-side out. A pencil makes this step fast and easy. Press flat.
To contain the crystals in the middle section of the neck cooler, sew a line across the tube about 10″ from the stitched end. Spoon just 1/4 teaspoon of crystals into the open end and make sure that they slide down to your sewn line. Sew another crosswise seam about 15″ from the first seam, to contain the crystals. Finally, just stitch the open end closed.
(NOTE: since crystals vary in size by manufacturer, make ONE neck cooler as a sample first, soak it for 10 to 12 minutes, to determine the correct amount of crystals to use. The fully expanded crystals should fill the tube, and not burst the seam! The tube must be able to BEND enough to be tied around the neck!)
One note of caution: You will be tempted to add more crystals, thinking that more is better. However, these crystals swell A LOT. (1/8 tsp swells to about 1/3 cup of gelatinous balls).
Soak the collars in water for 8-12 minutes until they swell and then tie them on, The crystals eventually wear out and will not absorb as much water. However, they should last a month or two.
To use your neck cooler, soak the middle of the cooler in water until the crystals in the middle bulge. The first soaking may take as long as ten minutes before the crystals absorb as much water as they are capable of. You can then tie the neck cooler around your neck. The crystals will slowly give up their absorbed water and the evaporation of the water should cool you for hours. The neck cooler can be re-soaked and used again and again. It should last about two months before the crystals lose their ability to absorb water.
Get a cheap spray bottle - fill it with water, adjust it to fine mist and spray it on your exposed skin for an instant chill-zing cooling effect.
Keep the back of your neck in shade (wear a cap backwards, or raise your collar) or put a wet handkerchief on the back of the neck. The sensor for our body temperature control system is in this area, and so with this method you can make the rest of your body think that you are "cool".
Place or tie an icepack behind your head.
Wet all your hair, or just all along the hairline in a pinch. The evaporation of the water will cool your head (though it may make your hair a bit frizzy if it's curly!).
Wear a bandana with water soaked in it and put it on your head. Or you can relive the 80'
Water misting fan. These portable devices are battery operated so you can take them with you wherever you go. As you mist and fan yourself, the water is evaporated on your skin, giving you an instant cooling sensation.
Soak a t-shirt in the sink, wring it out and put it on. Sit in a lawn chair (or other chair that lets air through to you) in front of a fan. Re-wet as it dries. Use lukewarm water for this so you don't "shock" your system with cold water.
Wear a short sleeved shirt and put water on the sleeves only. If there is a breeze or fan blowing on you, you can actually get cold! Use a squirt bottle, the sink or hose if outside to keep your sleeves wet. If you are outside and wearing long pants and you put water on your legs, the water will cool your legs. Long skirts are also good for this. Just sprinkle the hemline with water.
Run cold water over your wrists for 10 seconds on each hand. This will reduce your temperature for roughly an hour.
Soak your feet in a bucket of cold water. The body radiates heat from the hands, feet, face and ears, so cooling any of these will efficiently cool the body. Kids wading pools are great for adults feet too.
Fill your bathtub with cool water and get in. Once you are used to the temperature, let some water out and refill with cold water. Keep doing this until you are sufficiently cold. Your body will stay cool for a long time after you get out. For a fast cool-down, add ice!
Wear nothing. (or as we say at our house, “ run around nakie” .If you're in a situation where you can go without clothes, this can be the most comfortable and natural way to stay cool.
Wear next-to-nothing. Put on a swimsuit, or wear your underwear at home.
Wear summer clothing. Wear loosely-woven natural fabrics (cotton, silk, linen) rather than polyester, rayon, or other artificial fibers (with the possible exception of performance fabrics).
Wear light colors. Darker colors will absorb the sun's heat and stay warmer longer than light or white clothing, which reflects light and heat. Wear natural summer clothing.
Cover yourself up. Covering up may actually keep you cooler, especially if the heat is low in humidity. In the scorching temperatures of the Middle Eastern deserts, traditional cultures wear clothing covering from head to toe. By protecting your skin from the sun beating down, you'll also shade your skin. Be sure your clothing is made of natural fabrics and loose-fitting.
Lie on the floor. Warm air rises (since it's less dense than cooler air) so it's layered on top of the downward moving cooler air, which sinks lower. If you're in a house, for example, stay lower than the warm air. Make your way to the basement or lower level. It will be coolest near the floor on the ground level.
Snorkeling system. Take a glass and fill it almost to the brim with ice cubes. Hold it up to your mouth and blow gently into the cup. The ice causes the air you are blowing into the cup to cool down drastically, and since the air only has one way out of the cup (the hole which should now be aiming right at your face) the cold air is forced out over your skin.
To put the "snorkeling system" to more efficient use, point a fan into a square of four cups filled with ice water and ice cubes. The cooler air in the cups have no where to go but out. Each night, refreeze the cubes and open the windows instead.
Sit in the shade. Find a shaded area and set up a water misting system that connects to an ordinary garden hose that can be found at home improvement stores. Sit there and let the mist cool you off.
Avoid peak sunlight hours. Take a cue from people in extremely hot climates and avoid going out between 10 a.m. and 3p.m., when the sun's rays are hottest. You'll also avoid a sunburn this way.
Close your blinds. Shutting your blinds and curtains during the day will help block the sun's heat. As soon as the sun hits your building in the morning, close all windows and keep exterior doors and windows closed throughout the hottest part of the day. Do this until night falls and it's cool enough to open the windows for the night.
Open the windows at night. Open selective windows so that cooler night air is blowing in throughout the evening. Leaving all interior doors open (including closets and kitchen cabinets) helps, too. If you leave them closed, they store the daytime heat and your house won't cool off as much at night.
Cool down your house with fans. Position a ceiling fan, an upstairs window fan or an attic fan to draw off the heat collected in upper rooms and push the heat outdoors. Set up your portable fan so that the fan sucks up cooler air from the floor below, and blows hot air upwards towards the ceiling.
Make a DIY air conditioner. Put a metal bowl of salted ice in front of a fan, and adjust the fan so that the air is blowing over the ice. Or, use one or more 2 liter bottles and fill them mostly full of (water - 70%) & (rock salt - 10%) (air - 20% for expansion) (the salt brings the temp of the frozen water down to a lower ºF), freeze them, then place them in a large bowl (to catch dripping condensation). Position a fan to blow on them. As the salty ice in the bottles melts, the air cools around them. The fan will blow that air at you. The water & salt in the bottles can be refrozen every night and used again repeatedly.
Turn off all heat sources. Don't use the stove or oven to eat. Eat cold food, or use the microwave. Incandescent light bulbs also create heat - switch to compact fluorescents or LEDs. Turn off your lamps and your computer when you're not using them. You should also turn off your TV since it gives off a lot of heat, as well as some plug-in power adapters.
Avoid steam. During the day, don't take a hot shower, wash dishes and clothes or cook until after dark. Make sure your pot lids are tight-fitting. Make sure the door gasket seals on your oven, washer and dishwasher are in good shape and have no breaks or rips.
Adjust your pilot light. If you have a gas stove with pilot lights, make sure they are set correctly. If they are set too high, they will produce excess heat.
Put smooth white fabrics over anything in your house that's fuzzy. For example, you could cover corduroy pillows with white satin pillowcases for summer, put linen slipcovers over wool sofas, or just throw white sheets over furniture. Light-colored fabric will reflect heat instead of absorbing it, and the smooth texture will give you an impression of coolness.
Okay what else?
Freeze a water bottle and keep it with you. Drink from it, or just put it on your skin.
In front of a fan (that is running) put a cup of ice. Stay in front of the fan and colder air will get to you.
Do not leave a fan on in an enclosed room when no one is present (unless it's an attic fan). A fan does not cool the air already in the room; in fact, it heats it. The fan's motor generates heat and even the circulating air creates a less significant amount of heat from friction. It just feels cooler when you are present because of natural moisture evaporation from the skin, which only cools your body if you are in the room. Save electricity and turn off all fans in enclosed rooms that are not occupied.
If your garage is under living areas of your home, leave your hot car outside to cool off before putting it in the garage.
If all else fails, go to the mall, library, church, movie theater or some other air-conditioned public building.
The early morning and evening are usually cooled down enough to enjoy your walk, run, hike, bike, gardening, or yard work.
During a heat wave, many towns and cities open up air-conditioned "cooling centers" in nearby schools and community centers, and will help you reach them. People with MS (or other medical conditions) can call their local government services for a list of cooling centers.