Emergency Preparedness Plans for ME/CFS and FM Patients

Details

Last Updated: 24 November 2015 24 November 2015

Living in New England or other parts of the country where weather tends to be unpredictable and often severe, it is essential that people with chronic illnesses and health problems make it a habit to prepare themselves for emergencies. Most of these will be weather-related but difficult situations, like loss of electricity, heat and water can last longer than expected.

As patients with a chronic illness, being prepared as much as possible is key to reducing the stress that comes from lack of preparation. It is no secret that stress is not our friend, especially if you have Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) or Fibromyalgia (FM).

This article is a detailed outline of what to prepare for so you don't have to think. However, keep in mind that each individual person may have to personalize the list. And in no way does it cover absolutely everything. Feel free to add your particulars to the list.

Contact your county government's emergency information management office and see what they have to offer for planning resources.

If you use services from your state, county or city as a disabled person, such as meals-on-wheels or home aid, contact them and ask what services they provide in an emergency and see if they maintain a list of disabled people on which you can be put. In a disaster, this means someone would be looking for you.

What to keep in your car

For automobiles: there are some specific things to keep in the car either for emergencies or for inclement weather, especially when we start another unpredictable winter in New England:

• Your name, address, phone, work and home, emergency contact numbers and your physician's name, address and phone. You may want to include your date of birth—this can be a written list you keep on your person
• Window brush and/or scraper
• Bag of icemelt (cheap brands don't work as well)
• Roll of paper towels
• Small shovel— can have the fold up handle or be a child's plastic shovel
• Car cell phone charger, if you have a cell phone
• Flashlight with batteries and make sure it is in working order
• Portable radio with batteries
• Emergency lights
• A few plastic forks, spoons and knives, bendable straws
• Maps of the areas you travel the most
• An extra fleece coat or jacket because fleece keeps you warm
• Extra pair of gloves
• Warm hat
• A few bags of dried food that has a long shelf life
• Emergency blanket such as a sheet of mylar that is lightweight but can keep you warm. It might be a good idea to include one in the emergency kit for your home
• First aid kit comprising the following items:
  • Large sterile gauze pads
  • Paper tape in a wider size so it can be can into smaller pieces if necessary
  • Scissors (to cut clothes, gauze etc.)
  • Assortment of stiri-strips and band aids
  • Ace bandage
  • Aspirin
  • Face mask
  • Benadryl for itch and allergy relief
  • Non-latex gloves (preferably several pairs)
  • Pain medicine if you have extra
  • Something to make a tourniquet
  • Drinking water
  • Small but warm blanket
  • A tarp
  • Hand warmers that when snapped, heat up
  • Whistle—so people can find you

   

   

For your home or apartment

Depending on space, this may have to be adjusted. Plan on having at least a 3-day supply of food. As we have seen, outages can last for longer, so being prepared is important.

First, have a plan

• First and foremost have a plan with the residents of your home where to meet outside the home should you have to leave quickly (as in fire, etc). If children are involved, practice this plan

What to put in an emergency grab bag— documentation

• Emergency Grab Bag of Documentation comprising of important papers (ask yourself "if I had to start life over, what would I need?"). This should be done for each person in the household, including children and pets. Make copies of all important papers/bills/documentation and put them in the largest ziplock bag (waterproof) and keep them in an emergency grab area BEFORE you will need them.
  
  Information can be coordinated into groups. Check off as you go along.

Contact Lists

– Your name, address, phone, and date of birth
– A list of children's names, birth dates and if in school or daycare, the name, address, phone number and name of contact person and/or      principal at the facility in case of an emergency. Do this for each child. 
– If adult children, list them with names (especially if females are married) addresses, phone numbers and relationship.You may know this      information, but in an emergency, others may not.
– List of pets names, vets, medical history
– List of emergency contacts including names, addresses, phone numbers and emails
– List of relatives to be notified with their names, phone numbers and their relationship to you
– Do Not Call list—many patient's families are not understanding and in fact, cause additional stress. This is a time and place to list the            relatives/friends not to call
– Name, address and phone number of attorney
– Name, address, phone of financial advisor, if applicable
– Name, address, phone and contact name at the bank you use

Legal Documents

– Copy of your social security card
– If disabled, disability papers whether social security disability, long term disability or supplemental disability insurance information
– Copy of the last year's tax return (needed to apply for loans and verify qualifications for income-based assistance etc.)
– Acceptable proof of citizenship for individuals not born in the United States (http://uscis.gov/graphics/formsfee/forms)
– Legal copy of will and power of attorney documents
– Copy of birth certificate, adoption papers, military discharge notice, marriage certificate, divorce decree or other legal documents
– Mortgage or homeowner papers with account numbers and phone numbers and amount paid
– Property tax statement
– Utility company statements (these may be needed for federal help)
– If a renter, have a copy of your lease with pertinent phone numbers, and management office name and number, if appropriate

Financial Information

– Should you have any investments including retirement (manyME/ CFS patients are dirt poor) a list of said investments as well as the            name, address and phone number of your financial planner or investment advisor
– Employer information and a copy of pay stub
– Bank names, addresses, phone numbers and account numbers with balance information
– Title or loan papers for automobile with bank name and account and phone numbers
– Charge card and debit card names, account numbers and phone numbers to call, and date of last payment with amount

Insurance Information

– Insurance information such as company name, phone number, agent's name and account number for home
– Insurance information such as company name, phone number, agent's name and account number for apartment
– Insurance information such as company name, phone number, agent's name and account number for car
– Insurance information such as company name, phone number, agent's name and account number for healthcare
– If you have any other type of insurance, include this information as well

Medical Information

– A list with names, addresses, specialty and phone numbers for all your physicians
– A list of all medications including over the counter drugs you take, along with dosages, MARK THIS LIST WITH A RED CHECKMARK to            facilitate finding it faster
– Medical history list—this can be an outline of surgeries, diagnosis and allergies. MARK THIS LIST WITH A RED CHECKMARK to facilitate          finding it faster
– Copy of your latest eyeglass prescription
– Copy of name, serial number and information of any medical assist devices in use
– Name, phone number and address of your pharmacy
– If applicable, hospital name and number with patient account numbers (you can always get another plastic card)
– For each child, duplicate the above list and ADD vaccination record
– For pets, include their veterinarian's name, address and phone number with vaccination papers and any medical issues if applicable

General Information

– Computer list of passwords (needs to be kept up to date) in a hard copy. You can back it up on a flash drive.
– Any computer files that are important can be put on a flash drive
– If you are a veteran, obtain copies of your Military DD214

Checklist of supplies that you should have readily available

Food and Kitchen Supplies:

• A number of foil pans
• A metal frame used to hold the pans (used for cooking)
• Several cans of sterno for cooking
• Manual can opener, preferably the type that uncrimps the can and leaves no sharp edges or food contamination
• Bottle opener
• Flame lighter
• Several books of matches or a box of kitchen matches (they are longer than books of matches) kept in a dry, waterproof container or a sealed plastic bag
• Box of zip-lock freezer bags in quart and gallon size—if possible, try to have the 2 ½ gallon size (made by Hefty brand)
• Heavy duty aluminum foil
• Canned food or dried food has a longer shelf life. Items such as tuna fish, cereal and black beans and items such as nutella do not need to be heated. Nutella is a chocolate spread that does not need refrigeration and can be found in the grocery store near the peanut butter. Spread on rice cakes, English muffins or toast, it is breakfast. Canned soup is also a good storage item. There are a number of single serving items which would eliminate the issue of what to do with leftovers. Fruit and pudding items such as applesauce, fruit cocktail, pineapple, chocolate pudding etc., come in either small cans or single serving sizes and do not need refrigeration. Various nuts have nutritional value and can be easily stored. Milk is available in either the dried variety, or boxed style. One variety is called Parmalat, which is an ultra pasteurized 100% cow's milk, and can be stored on a shelf for up to 6 months. There is always the peanut butter staple. Food bars are another item that can be stored. They tend to be a bit expensive, but can give you a boost when you really need it. Pay attention to expiration dates on everything including the water. Replace as necessary, or no later than 6 months. Label and date all food as you bring it in. If storing dried food such as cereal, pasta, or nuts, store in a plastic air-tight container to avoid rodent or insect issues
• Reusable cold compresses—if you keep several of these in various sizes in your freezer, other than the medical use, they come in handy if you need to toss them into the cooler.
• A cooler. The old fashion hard shell type works well (also works as additional seating) but the newer soft sided ones with the thermal insulated lining will keep things cold for a very long time. If a storm hits, and you lose electricity, throw the perishables into the cooler. You can use snow inside the cooler if you don't have enough ice. Should you lose electricity, do not repeatedly open your freezer or refrigerator door. Take out what goes into a cooler and then keep the door closed. Things could last 2-3 days this way. When cleaning out after the fact, if in doubt, throw it out.
• If you are diabetic or have other medical/nutritional needs, then it is important and necessary that you plan and make proper preparations ahead of time.
• Paper plates, plastic cups, forks, spoons and knives and napkins
• Mess kit
• Cooking utensils
• Small camp stove or gas grill used outside the home (also fuel for use)
• Several gallons of commercially filled water jugs per person and pet per day. If you fill containers yourself, make sure they are sanitized and use a food-grade container which can be found at camping supply stores. The Centers for Disease Control and Prevention (CDC) recommends at least one gallon per day but that is for drinking water only, not cleaning or bathing. If there is room to store 2 weeks worth of supplies, it is a good idea to do so.
• Fire extinguisher should be kept near or in the kitchen
  

Household Supplies:

• If possible, a gas-run generator. This is only applicable to single households, and not appropriate for individual apartments. Propane gas can only be stored in a garage or outdoors, NOT inside a home
• Extra toilet paper
• Extra paper towels
• Dishwashing liquid and /or bar of soap
• A large bottle of unscented liquid chlorine bleach for sanitizing and disinfecting water, should it be necessary. To sanitize containers, use 1 teaspoon bleach to one quart of water
• Medicine dropper—when diluted nine parts water to one part bleach, bleach can be used as a disinfectant. Or in an emergency, you can use it to treat water by using 16 drops of regular household liquid bleach per gallon of water. Do not use scented, color safe or bleaches with added cleaners.
• A large plastic tub and pitcher
• Flashlights in several places and certainly on each floor in a house. Hand-cranked flashlights don't use batteries and are an option. Best to have both types on hand.
• Battery-run radio with earphones, and/or small speakers
• Extra batteries for flashlights and radio (the batteries last longer if kept in the fridge when there is no power outage)
• Extra blankets and perhaps sleeping bags for warmth
• If at all possible, invest in a fleece blanket
• First Aid kit, same as in your automobile
• Hand warmers which when snapped, they heat up. In an emergency, they can act as a heating pad
• Roll of duct tape
• Plastic sheeting for making a shelter
• Scissors
• Flameless candles are now battery run with small LED lights
• Garbage bags and ties for sanitation needs
• A box of moist towelettes (these tend to dry out so keep current)

Medical Supplies:

• Compile all the medicines you take plus any over the counter items in one place such as a small bag. Stay on top of refills so you don't run out of an important medication
• If children are involved, you will need their medications as well
• Items duplicated from the automobile first aid kit
• Services, devices, tools and techniques you use to live with a disability
• Medical needs such as canes, crutches and walkers should have a name tag on them with identification
• Extra eyeglasses and/or hearing aids
• Medical alert tags (that you are supposed to be wearing)
• A written list of your medications and description of your illness so if you are unable to speak in an emergency, the information is available. This can be kept in your wallet or purse. This is in addition to the same information in your Emergency Grab Bag
• If you use a motorized wheelchair, have a light weight manual chair available for emergencies. Know the size and weight of your wheelchair, in addition to whether or not it is collapsible, in case it has to be transported
• Personal hygiene products and feminine supplies
• Deodorant
• Toothbrush, toothpaste and mouth wash
• Baby's diapers and baby wipes
• Baby powder—not just for babies. If your hair gets oily, dust a bit of powder on your scalp and brush through. It absorbs oil
• Cotton balls or cotton pads

General Supplies:

• Find out if you can subscribe to your town's emergency alert system. If so, list your cell phone number (provided it is charged and on) which means you'd get the alerts even if you are not home. Keep in mind cordless phones need electricity and only work with them plugged in. No electricity, no phone. It is a good idea to have at least one telephone that is wired
• Keep basic tools handy such as wrench, screwdriver and hammer handy in case of needing them to turn off water or gas lines, or building some sort of tenting.
• Create and keep posted a hardcopy (print off from computer, if that's where you keep information) of important contact information
• Keep handy a paper map of your local area. If everything is on your smart phone, computer or electrical device, and there is no power, then what?
• When severe weather or a snowstorm is forecast during the winter, have extra blankets at the ready, especially if outages are frequent. Invest in a simple zip-up sleeping bag that can handle low temp if blankets are not enough to keep you warm
• Invest in a set of thermal underwear-purchasing these items at the end of a selling season, often when they are greatly discounted, will save you money
• Keep a pad of paper, pen and pencil handy
• If you receive any governmental funds by mail, such as social security disability checks, consider arranging for direct deposit so as not to interrupt receipt of money. In a disaster or heavy snowstorm, mail can be delayed or stopped. Register for direct deposit at: www.GoDirect.org. You can also call your Social Security office to make arrangements
• For those who may not have a bank account, you can sign up for The Direct Express® prepaid debit card as a safe and easy alternative to paper checks. Call toll-free at (877) 212-9991 (phone), (866) 569-0447(TTY) or sign up online at: www.USDirectExpress.com
• If you depend on well water and a storm is forecast, fill your bathtub with water, along with several jugs of water—not for drinking, but to flush toilets
• If you have a baby or small child, make sure you have enough diapers, formula and supplies for them
• Try to keep some cash on hand in small bills ($10.00 or $20.00). In a power outage, the ATM's do not work. Put the money in an envelope and mark it "for emergency use only" and put it with important papers or your emergency grab bag
• If possible, keep a couple of small battery operated fans on hand. Purchase them on sale at the end of the summer selling season. If the electricity goes out in the summer, they could be a life saver
• Winter cleats such as Yaktrax that slip over your shoes or boots and keep you from slipping on ice. Such items can be found on the shopping channels, in the Walmart automotive section and possibly at Sears. This is a seasonal item so you will only find it in the winter selling season.

For folks whose lose power and have gas hot water heater and/or stove, it may be possible to light the pilot light on the hot water heater using a long handle butane lighter. Check with your manufacturer or a plumber. To light a gas stove pilot light, use the same type of lighter, turn on the gas slowly and light the pilot light on the stove. Do not put your face down into the stove to watch!

Snowstorms and hurricanes are common to our area. However, 2011 showed us we also have to be aware of tornadoes and earthquakes—2011 saw it all. Should the household have to be evacuated, for whatever reason, there are a few precautions CFS/FM patients, or any chronically ill person, should take. Since a timeline is not known for returning, the reasoning is better to be prepared and not need something, than need it and not be prepared.

In case of evacuation take-with items:

• Emergency Grab Bag of Documentation
• All your medicines in their bottles. Keeping them together in one spot helps the grab and go. For those who put out the medication in a weekly container, grab that container, but also take your bottles
• Computer and cables, flash drives of information
• Battery chargers for phone, computer, cameras, and if applicable medical devices which require batteries such as wheelchairs, hearing aids, etc.
• A complete change of clothing, extra tops for layering, underwear, long pants and socks and sturdy shoes
• If during the winter, take a warm coat, gloves, hat and scarves
• If in summer, take battery operated small fans
• Specific pillows, if needed
• Any medical devices that are used—i.e. cane, wheelchair
• Pets—if you have a pet, you will need to bring some food, snacks, leash, coat, medication if needed, etc., plus your pet. Your pet's medical information should be in your Emergency Grab Bag of Documentation kit
• If you have children and time allows, take some books, toys, crayons, paper, puzzles and games to keep the children entertained, as well as their favorite stuffed animal
• If you are in a shelter that has electricity, computer games or videos may be an option
• If you live alone, make a plan with support folks and/or friends and make sure someone you trust has an extra key to your place. Put their name and number in your Emergency Grab Bag of Documentation kit as a contact
• If you are a woman, then you know to grab your pocketbook, checkbook with checks and wallet
• Heating pad, if necessary along with an extension cord assuming there is electricity where you are going
• Any special foods you'll need
• Cash
• Identification such as a driver's license, medical insurance card, social security card, etc.

Although this looks like a long list, do a little at a time, and before you know it, it will be done. Start with the Emergency Grab Bag of Documentation, as that is probably the most important, next to your medications.

For additional generalized information, check out the following sources:

Information for how to deal with disasters and emergencies, as compiled by the CDC, Disaster Information for People With Chronic Conditions and Disabilities. 

A government website (sponsored by FEMA) offering a lot of valuable information for how to get ready for many weather-related emergencies such as Winter Weather survival.