10 Steps to Accommodate Illness and Disabilities During Holidays

No, if and or buts. It sucks being sick on or around the holidays. From bummed out grumbles, to out-right fits of anger. Is there a way for them to still be worth celebrating? Or not?

Well, I guess we could just give up and feel sorry for ourselves, or apologize to everyone around us for it, and concede to misery. It certainly is easy enough just to crawl away in a corner of self-pity and denounce the holiday itself. Or, we can create some strategy to ensure some amount of joy and fun are part of the holiday experience.

Now to be fair. There are some illnesses the greatest gift you can give loved ones is to stay far away—very far away. Those would be the highly contagious ones such as influenza, whooping cough, VRS, strep throat, even some severe common colds. For the young, elderly and medically fragile, any of those can be dangerous. To learn more about the flu click here. If you have not had your flu shot make it a priority and get it now. The easiest way to find a location is by visiting VaccineFinder.com. Getting the shot before holiday gatherings will greatly reduce your chances of picking it up while traveling through crowded malls, airports, and long train rides. Close quarters with confined air allows for easier means of transmission of contagions especially this time of year.

Some chronic illnesses and those undergoing long-term treatments may very well be something to work around rather than give up hope of any participation or enjoyment. But it does take some planning, assistance from others and an inward willingness to look at the challenges differently. Travel takes on a different meaning if you must carry oxygen tanks, portable infusion pumps or need the use of mobility support equipment. Even a broken ankle throws automatic frustrations into a short outing.

Now I am not viewing this suggestion with rose colored glasses. I myself am disabled with several physical ailments (past injury-blah, blah enough about me). If the entire family is going backcountry downhill skiing, taking a wheelchair-bound member presents an obvious challenge. Mothers recovering from childbirth have the added pressure of needing to protect a newborn while also wanting to share their new baby with family.

No matter the condition, it is important to consult your treating physician or medical provider that now is a good time to take on a challenging travel or celebration schedule. Assuming the all clear is given, let’s move on to how the festivities can include you. And if your blessed enough to be without illness, or physical challenges, how you can assist others who are.

 


10 Ways to Still to Participate During the Holidays When Ill or Sick

(geared towards the chronically ill)

#1 – Be honest about the challenge. If you know you have some private things you manage and don’t ever share them. Keeping that up in unfamiliar surrounds, more intimates spaces, or less controllable environments might be highly problematic to impossible. An active phase of allergic colitis takes on a whole new fear if visiting a home with only one restroom. Perhaps you use a personal catheter, have a colostomy bag, or a surgical drain. Sharing that information with a trusted friend or family member can be the difference in pulling off the trip or staying home alone, isolated from companionship. Hey, we all need to do this anyway. Even when things are great.

#2- Ask the host (family/friend) to secure a place you can use to handle an urgent medical/embarrassing need privately. Most people I find are more than willing to accommodate such personal needs provided space is available. This is also comforting and useful information to have to help guide the ultimate decision to go. Breastfeeding privacy is regularly honored, so making space to empty a colostomy bag should be just as acceptable. Take the opportunity to teach that person a little bit about your condition. I learned that many had no idea so much went into the littlest outing with my boys who are both medically at risk and suffer from intellectual disabilities from brain injuries.

#3- Plan the travel route/manner well in advance. This should include travel insurance to cover sudden health emergencies. 

Between the three of us in my family, we have me, a spinal cord injury, oldest who has nerve damage from regular spinal taps, and youngest, with scoliosis. On top of our other conditions, these are the most likely to create pain while seated or riding in a car.

I do my best to avoid using roads with difficult lanes due to constructions or ill repair. Just five minutes down a rough road puts all of us in such pain the trip is already over. So if unavoidable things are necessary, some advance pain medications, heating pads and massagers, and a place to immediately rest once arriving are potential ways for us to cope.

Now there are many times traveling is unlikely. A 10-hour drive would be debilitating to me especially. I would almost need 3 days of resting my back to recover before joining the party and absolutely before turning around to return home. So leaving ahead of traffic, breaking the trip into two days and staying a bit longer are potential solutions.

Now back to the honesty part. I would not do this for just holiday time. The impact would be crisis inducing and need a lengthy rebound. But for a medical treatment or in advance of a residential transplant, those are circumstances that drain becomes reasonable. Or start planning even further in advance and save for plane tickets, cutting travel time to a bare minimum.

Include travel insurance for those pricey tickets as well. It will give you the peace of mind you can be refunded or get home faster if suddenly needed. In fact, my father even purchases insurance if traveling to us. We are still the likely ones to enter a crisis and be suddenly unavailable for visiting. Be sure to know the specific details of your insurance coverage terms.

#4-Ask your host/family to prepare some items you can’t carry or travel easily with. I have had my tens unit confiscated at airports. Dr’s letters and explanations to a poorly trained or educated gate guard can be useless. Packing up an expensive rolling walker or wheelchair, and paying extra freight, may put the price tag over budget. Someone can have a temporary walker, wheelchair and the like, available for use when you arrive at your destination. If you receive Medicare, I recommend starting here to learn about accessing durable medical equipment and rentals. You can also educate yourself on the best options for choosing walkers at the Mayo Clinic website.

This option is not always possible, but you won’t know till you ask.  Believe me, getting to your destination to find your child’s nebulizer was stolen, broken or removed is panic-inducing if unprepared. You might be surprised by how many others have one or access to one even though they rarely use it.

Air on the side of caution and once again, have those conversations up front. It’s enough of a hassle to travel with all the medications. There are things you can’t, shouldn’t or desire to share. It’s okay. In the same path, be straightforward if someone offers you a temporary tool that you are uncomfortable with, say no thanks.

My son’s nebulizers are special nearly silent ones that limit triggering migraines. An old or outdated, yet perfectly fine nebulizer is not a solution all the time. So a polite no thanks is all that’s needed. A huge explanation is not needed either.

If you get pressed just state its a bit too much to easily explain, or heck, do like I do, make a joke an tell them you are too much of an idiot to learn something brand new that quick. Blame it on the weirdo blog lady.

#5-Pack your medical information and keep it on you for each person with medical conditions. I can not stress this enough. Holidays are traditionally and predictably chaotic. From excitement to absolute panic from procrastinating, you can count on someone being innocently tuned out. Its a time of distractions, and stress. It’s not a good idea to leave things to the last minute.

Even if returning to a previously resided city. Medical providers do not always keep information where you might need it. The market is flooded with ways to transfer data about yourself. iTunes has some great apps that make it easier.

In addition, now is a good time to sign up with your medical systems/providers online charting systems. Not only can that be an easy way to have access to your medical information during an out-of-town crisis, but you might also even be able to do an eVisit with your established provider and get the treatment needed.

That service is only available through the online patient portal. So do it now. In some areas, you may have to be sent an activation code to begin using the system as desired. Sending a quick message through the email is also easier than being placed on hold forever.

Face it, explaining very complex medical conditions, that are chronic, is daunting at any emergency room. But if that happens, having a quick guide to your information such as an app or even written summary can be life-saving. Always consider what would happen if you suddenly can’t communicate yourself. It’s a scary thought, but more frightening if it happens without being prepared or preparing family.

#6- Have Medications Packed and Organized. This includes making sure they are well labeled. For many purposes having things labeled or carry a duplicate paper label can be a lifesaver. Many of us with chronic conditions requiring medications use pill organizers. The one risk is if they fall out, I know how each of my son’s 18 medications looks but no one else does.

Those paper labels placed on the bottle have a description of the pills inside. Should that happen and you are not able to explain it to someone suddenly needing to care for you, having that backup is important.

Now organizers are still great and provided they remain that way, someone can easily hand you the green twist cup labeled Sun. If they drop it, what now? I typically travel with a few extra pills of every medication in case a trip is delayed, one drops into the sink drain or gets lost etc (quick tip—dispense and take pills where dropped ones can be recovered without being contaminated).

Another solution and one I recently switched too is using a lockable pill dispenser. Always think about the ease of access and level of security. Arthritic fingers have special needs, just like homes with young children and pets. You can find some great options on Amazon. Here is a great example to consider. Keep it simple, however. There are complicated storage units that are automated and those typically create frustrations.

I do not bring the whole bottle for fear of losing the whole months supply all at once,  and having insurance not cover replacements. They rarely will without a fight. Along with prescription labels include those for over the counter items such as vitamins and supplements you depend on. Additional items such as inhaler spacers, tubing, masks, and other misc items all should be well organized so others can help retrieve them if needed.

#7- Deal with diet restriction ahead of time. Okay I know we all look forward to that extra helping of banana pudding. But Aunt Alice who is diabetic really needs not too. So if you are the host prepping for a party, take time to survey the needs of your guests coming. Aunt Alice would be thrilled to find out you went through the effort to make a more diabetic friendly dessert. Sugar-free products are aplenty, but pitfalls are everywhere.

Whether the diet restrictions come from disease or medication interactions, it’s a necessary evil to accommodate them. I can not consume high levels of sugar unless I want to spend the remaining time hostage in the restroom.

Grapefruit is a favorite but not an item my medications like. My boys are on vitamin K sensitive prescriptions so a nice steamed kale dish or southern prepared greens is a big ole NO!  I sound like a broken record here, but again, to the host, prep for your guests. You will gain tons of props for going the extra mile. Need a jumpstart. I love utilizing websites and fellow bloggers who keep lots of tasty options published. My favorite diabetic resource is DiabetesStrong.com

For guests, contact your host and let them know you would love to come and if there is any way to manage your needs. Now the truth is that is not always possible. But ask anyway. Maybe you can bring a dish to share for your host to try at the next party.

#8 Prep the environment- Now if you are the one hosting. Hopefully, you have done your due diligence and prepared for any guests with wheelchairs, walkers, or other physical limitations and challenges.

But look beyond just those more visual obvious things. My boys are hypersensitive to sound. Well, it is ridiculous to expect a quiet party. What a total buzz kill, talk about ultimate party poopers. But, having someone dull a very loud doorbell that will chime all evening, or seclude a very noisy barking dog that will do so non-stop, maybe minor ways to help out.

For the patient, like my sons, having them wear noise reducing headphones to even noise blocking for a period is great. Creating a space away from constant loud noise is actually a huge bonus at any party. There are always people grateful for the break, but who would never tell you that personally.

For us, we make a habit of not sitting near stereo speakers, a doorbell box, slamming doors and other more obvious and avoidable areas. What we can not ask for nor expect is quiet. So prepping is good, planning is better. We also let people know we will come a bit early when crowds are smaller and leave well before the party is over so the loudest parts are not a problem.

Yes, we miss some of the best so-called-parts but the trade off is getting to share a portion especially when requiring things no one can provide. That is a true sadness for us as we are very isolated.

Truth-telling time. We rarely get to go to such venues at all. Our current life limits us so severely that many of these listed ways can’t apply. However, I actively seek when they can and utilize every opportunity to make things work.

To support your disabled, medically fragile and physically challenged family and friends, you can also gift your acceptance. Accept the manner they can participate and withhold being judgmental towards them. That is a very intimate hurt when behaving that way towards others. Remember the sick are not in control of the conditions either.

#9- Have an escape plan/emergency plan. Well, this is quite straightforward. When it hits the fan, you get really sick or suffer that dreaded crisis despite all the preparations activate your emergency plan. You have one right? Yes, great, you are ahead of the game already. No? Oh goodness, let’s get on it together right now!

  1. Have a list of emergency contacts
  2. Have a list of your doctors to call first or dial 911 if its that type of emergency
  3. Have an assigned driver. Sort of like a designated driver for alcohol-consuming adults. Make sure someone can get you home, to the doctor or ER if needed. Don’t “hope” someone will take action. Prep someone to take action and be confident they know just what to do without panic.
  4. Activate travel insurance so the rapid adjustment can be made. Whether it’s leaving for home early, or delaying it due to an unplanned hospital admission away from home.
  5. If your crisis subsides while still away from home. It is time to return. Everyone is drained by now. The fear, the supplies, and the energy have been used up, even if no one will confess it.

It’s unfair, but safest to go home. Outside of some type of new physical injury, surgery or similar. You can best handle recovery from home.

If you are the host and simply do not know what to do next. If your guest is able to converse ask. They should have an idea and can relieve you of the fears building in your mind. This is not an item of “hey you, hurry up and get out”, this is more of a supportive action to get that person where they can be their best.

If the situation uncovers a whole level of concerns previously hidden, it may be a shock. Such as, Aunt Alice fell and the doctor said she had an old fracture too, no one knew of. She may need to not go home alone or need a different situation once home. That is a much more complex issue and one needing lengthy addressing.

#10 Have and/or pack a sense of humor. This may not be something you have developed within yourself yet. Please consider working hard on it. I promise it makes enduring the hardships so much easier. Its possible to be both respectful towards yourself while easing the fears of others when those awkward “sick persons” moments pop up. Whether completely alone in your bedroom, struggling with a condition in an elevator or sitting at your workstation with 15 people looking at you. A healthy sense of humor may become the healthiest thing you got.

I was in the waiting room of my urologist (ah post childbirth joys), when a gentleman walked in and abruptly told the check-in clerk,” miss, I totally got a problem today, it seems I can’t hold my piss anymore.” She asked him if he had an appointment which he said no. And she began to ask if he could return the next day.

He replied, “lady unless you want me to piss all over the place you might want to call a doctor real quick”. By now he and I are balled up laughing while the clerk was clearly annoyed. Her fault because she also had not bothered to look up at him and see his catheter bag parts broke and he was literally pissing everywhere.

Finally, he lifted the part, dripping piss everywhere, and the lady changed to the brightest shade of red I think a human could turn. I did not attempt to withhold the most obnoxious laugh. I literally feared I would urinate on myself watching this whole thing go down.

The gentleman and I only briefly chatted as he was clearly having an emergency. When I was done I went to the elevator just to be greeted by him. The ride down was joyous, full of jokes back and forth and how stupid some healthcare workers are who are apparently never sick.

Benjamin was a 40-year retired fireman who had developed bladder cancer. He was winning both on the disease front and mental health front. A joy, and an honor to visit with him. We spoke of our disabilities and left each other feeling uplifted. Please do not cheat yourself these experiences. Humor is healing and bonding for sure.

There you go. A very long-winded list of ways to make sure you do everything you can to get out and enjoy the holiday fun, even if done differently than everyone else. For more information on how you can help your family member, get ideas and strategy for your personal struggles or receive personal support, reach out and contact us at info@angelsofouroctober.com

Did you find something useful here? Have a suggestion for our readers? Leave it in the comments below. We’d love to hear from you.

—Pamela Juers


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