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Life Hacks for Traveling When Chronically Ill

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Traveling can be exhausting under the best circumstances, but it is particularly difficult when you have postural orthostatic tachycardia syndrome (POTS), fibromyalgia, mast cell activation syndrome, chronic fatigue syndrome, myalgic encephalomyletis, or a variety of other chronic illnesses. Here are some tips that might make your journey a litter easier.

General Tips:

1. Pack your regular medication in their original bottles (if flying) or your pillbox.

2. Take a few extra pills for each medication, just in case.

3. Be sure to fill prescriptions before you leave – don’t count on being able to get the medication when you arrive at your destination.

4. Pack salty snacks and water bottles. Be sure that you stay hydrated!

5. Wear loose, comfortable clothes for your travel days.

6. Ask for help when needed. Don’t be shy!

7. Be prepared in the case of a medical emergency.

  • Find the nearest hospital and urgent care center to your destination.
  • Keep a list of their medications and emergency contacts nearby.
  • Double check that you have your insurance card.
  • Carry a card with information about your illness. Include all allergies in this list.

1. Consider a hotel with a restaurant or room service in case you have a flare while you are staying there. Eating in the hotel can save precious energy.

2. A refrigerator in your room can be helpful for food, drink, and medication storage.

3. When making hotel reservations, it may be helpful to ask for a room near the elevator and on a lower floor. This can be useful in case there is an emergency that requires you to take the stairs and allows the hotel staff to help you faster.

4. The Americans with Disabilities Act (ADA) states that all public accommodations in the United States must comply with basic non-discrimination policies. Hotels must provide:

  • Barrier free rooms and bathrooms
  • Barrier free access both inside and outside of the building
  • Hotels often have rooms designated for people with disabilities who need these accommodations, so call ahead! You can request:
    • Raised toilet seats
    • Grab bars
    • Tub chairs
    • Walk-in showers

Special Considerations When Flying:

1. Contact your airline prior to your departure date and ask for wheelchair assistance, if needed. They can take you from the curb through security and to your boarding gate. You can also have them transport you between gates for connecting flights. This saves energy for the more enjoyable parts of your trip. If you are traveling with someone, they can stay with you through security.

2. Request a bulkhead seat to give you more room to elevate your legs.

3. Consider boarding the plane last and leaving the plane last to minimize time spent standing.

4. Pack all medications in your carry-on bag in their original containers to avoid losing your medicine if your bags are lost.

5. Buy water to mix with electrolyte drink in an airport store after you pass through security. Individually sealed powder packs of Propel, Gatorade, or other electrolyte drinks are great for this!

6. While waiting in the terminal, prop your feet up on your carry-on luggage to decrease blood pooling and fatigue.

7. Move your legs, feet and ankles while seated on the plane to prevent blood pooling.

8. Wear compression stockings to promote blood flow.

9. Travel with a cotton scarf that you can use as a mask if you encounter strong odors in the terminal or on the airplane.

10. Be sure to properly declare and handle all health-related medications, liquids, machines, canes, etc. when flying. The Transportation Security Administration can inform you and help you know what you need to do to travel by airplane. Visit http://www.tsa.gov/

11. Consider buying insurance for the trip.

  • Trip cancellation insurance: covers the cost of your trip if you are too sick to travel.
  • Travel health insurance: if you are traveling in another country, this insurance is a good idea to cover potential doctor bills or hospital stays.
  • Medical evacuation insurance: cover the cost of transportation to a high-quality hospital in an emergency. This is especially important if you are traveling in rural areas.

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Thinkstock Image By: vonEisenstein

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What It's Really Like to Stay in Bed All Day Because of My Pain

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Have you ever been told that you’re lucky to be able to spend so much time in bed? Or had the accusation of, “I wish I could do nothing but just lie around all day,” or the more passive aggressive equivalent, “I’d love to be able to stay in bed all day,” levelled at you?

For many people, the idea of spending a whole day lazying around, must seem like heaven on earth. It’s not for me, because I hate my bed.

It is not as others might think – holiday of daytime TV, gossiping on the phone and lounging luxuriously in comfort. It’s painful, soul destroying and lonely.

But this wasn’t always so.

As a child, my bed was the source of many wondrous adventures and a space in which to contemplate the confusion of a world I didn’t yet understand. As a pre-teen, it was the place where I had my first magical kiss. When I became a young adult, I couldn’t wait to get home and bury myself beneath the soft fabric of my eiderdown after a particularly heavy night of partying. And as a fully fledged, paid-up member of the grown up society, it was my haven from a hard day’s work…as well as a place for all manner of lascivious and lewd behavior. Ah, good times.

When motherhood came a-knockin’, it became, once again, the prime location of wondrous adventures where stories were told, secrets revealed and where talks of hopes and dreams where met with laughter and amazement.

But now, it is my prison.

Being bed-ridden is not something that I ever foresaw in my future. Those nights of longing for five more minutes, or wishing that I could while away the weekend in deep slumber, are no more.

Today I cried. I left my room in order to wash a few dishes after my son had graciously served me dinner in bed and I went to retrieve the clothes that had been slowly fermenting in the washing machine for over 12 hours. And it hurt.

Just climbing out of bed proved to be a job in itself. As my feet landed on the floor, my body felt so weighed down, it was as if I was about to become absorbed into the carpet. It took all my strength and effort to land one foot in front of the other as gravity played it’s game of trying to keep me firmly rooted to the spot.

But I managed to climb down the 13 steps in my usual crab-like manner, ever fearful of falling, and then I could go no further. I slumped into the nearest chair and there I sat and wept. I wept because of the pain. I wept at my inability to perform even the simplest of tasks. I wept at my lack of energy. I wept because I physically couldn’t move any more. I wept as my son came downstairs, washed the dishes and took the clothes out of the washing machine without being told to do so. And I wept because I felt like a pathetic excuse for a mother as I let guilt consume me. Lastly, I wept because I knew that soon, I would have to return to my bed. My prison.

Sitting hurts, standing more so, but because my bed has a memory foam mattress that moulds itself to the shape of my body, it is the only place where I can get some pain relief.

Every activity that I do, is succeeded by a place on that bed. If there is shopping to be done, appointments to be met and functions to attend, then my spell in that bed could last a whole week or longer.

A week in bed. That would have sounded so good when I was who I used to be. So yeah, I hate my bed, because as the world outside continues to turn, I remain laid up and enfolded in the one thing that eases any physical pain. The mental pain it causes however, hurts much more than the ones that wrack my body, and the derisive comments that suggest that I should be grateful for my predicament, even more so.

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Ideas for Enjoying Spring Break With a Chronic Illness

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Although trips to the beach aren’t necessarily out of the question, those of use with chronic illnesses often have to do spring break a little different than our friends.

Here are some tips on how to not feel ashamed of your spring break spent resting, and here are some fun ideas that are chronic illness friendly activities.

My favorite thing to start with is a list of fun things to do that require less energy. I likely won’t do all the things on the list, but it gives me a starting point for when I do feel up to an “adventure.”

Here are some things on my list:

  1. Cuddle with my cat
  2. Watercolor from bed
  3. Eat crepes (Preferably find a place that delivers crepes.)
  4. Have a backyard picnic
  5. Order fabrics online and learn how to sew (Ambitious, right?)
  6. Find a cool thrift store item
  7. Enjoy my coffee scented candle while wearing fuzzy socks
  8. Knit a head band
  9. Read a book

That is just to name a few!

Once you’ve done this, you have little things to look forward to as well as possible answers to the pesky spring break question. Then, when someone asks what you are doing for spring break, you can name any one of those things with confidence and not feel like your spring break is any less than anyone else’s. I may end up just doing one of these things, but it is a great strategy to stay positive and be ready for the moments where you feel up to doing an activity.

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Republicans Just Released Their Obamacare Replacement Plan

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On Monday, House Republicans released their Obamacare replacement plan.

According to the Associated Press, the Republican plan will cover 20 million less people than currently covered the Affordable Care Act (ACA). The new plan will also replace income-based subsidies and replace them with age-based subsidies, meaning a 25-year-old making $30,000 a year could receive a lower subsidy than billionaire Bill Gates.

Keeping to the Affordable Care Act, the Republican plan will keep children on their parents’ insurance until they turn 26. Patients with preexisting conditions will be afforded some protections such as lifting lifetime caps on care.

The Medicaid expansion set forth by Obamacare would continue under the plan until 2020. After that, states receiving additional funding would lose all expanded funds.

Republicans have not provided details as to how they will pay for this new plan, since it removes the mandates requiring people to buy insurance or pay a fee, noting, “We are still discussing details, but we are committed to repealing Obamacare and replacing it with fiscally responsible policies that restore the free market and protect taxpayers.”

Other healthcare funding measures set forth by Obamacare such as increased taxes for higher earners and insurers would end as of 2018.

Voting on the 123-page plan will begin on Wednesday.

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To the Trump Administration, From a Chronically Ill Teen

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When Betsy Devos took office, as a student, an advocate for disability and a disabled person, I was crushed. Rather than seeing someone who is supposed to defend my rights and my education, I saw someone whose goal was the opposite. I believe this woman is planning to leave us students with disabilities in the dust, eliminate accommodations, and just see how we do.

Without my accommodations, I cannot function well in a mainstream classroom. I may not appear to be very ill, but without access to the elevator, extended time on tests, and the ability to have more absences than normal, I would not be able to succeed in school. I would constantly be called down to the Dean’s office about absences, I would be passing out every time I took the stairs, and most importantly I would be unable to keep up in my honors classes. I worked hard to be in these classes. I pushed myself all of middle school to get to where I am right now, and I do not deserve to have that taken away from me just because I became sick last January.

I deserve to feel safe in my own classroom. I deserve to feel safe in my own school. I deserve to feel safe in my own country. Unfortunately, right now I do not feel safe in my own country. I feel personally victimized as an American with a disability, and I do not know what my future holds with the Trump administration. I don’t know if I will lose my 504 plan, I don’t know if I will watch my friends die as they lose their insurance, and I do not know if my future will become even more unclear than it already is.

Time will give me the answers to these questions that haunt me in my sleep, the questions that keep me up at night. Currently, I have no idea what these next four years hold. I may be perfectly safe and not realize it, but I may also lose everything. The hardest part about this wait is not the lack of knowledge, but the fact that the Trump administration is doing nothing to reassure the largest minority in America that we will be kept safe. So many children have a 504 plan or IEP and need individualized care to keep up in school. These needs of so many children are why the Obama administration administered the “no child left behind” plan, but the Trump administration seems to be promoting the “every child left behind” plan. I am not saying that the Obama administration was anywhere near perfect, but under President Obama there was so much less left to fate. People with disabilities could feel more secure in their futures.

I am not only an American with a disability, but I am an American who spends great amounts of time working with people with intellectual and developmental disabilities. They are some of the greatest people I have ever met. The special education classroom is a light in my life — I know I can always walk in to find great joy. Yes, these children, my friends, may need extra help just like I do, but that does not mean they cannot thrive or they don’t deserve to thrive. Those of us with disabilities deserve to be able to speak out, keep up in school, and be active members in society.

To the Trump administration: please protect your largest minority. Protect the people living in constant pain and fear. Do not repeal the preexisting condition clause. Do not defund special education. Most importantly, do make us feel safe. To the Congress voting on upcoming issues: please vote to preserve my rights as a disabled American. Vote to replace the ACA with a good alternative. Vote to keep funding for those of us with 504 plans and IEPs. Vote to keep me thriving. Vote to save my life.

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

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22 Things People With Chronic Illness Don't Admit to Their Healthy Friends

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It’s not always easy to talk about your illness with healthy friends. Will friends who don’t know what chronic pain and fatigue feel like understand when you tell them about your latest flare? Will they offer “cures” and advice they’re sure would help, but won’t? Or will they listen with the caring ear you hoped for? When you have an illness that doesn’t “go away,” people don’t always understand, and there’s so much that often goes unsaid.

It’s time for healthy individuals to recognize what’s really going on with their friends living with chronic illnesses and understand how their support (or lack of it) affects their friends. So, we asked our Mighty community to share what they don’t admit to their healthy friends. If you’re reading this because you know someone with a chronic illness, remember this: Even if your chronically ill friend is smiling and “doesn’t look sick,” they may still be dealing with difficult symptoms and feelings. Don’t forget to reach out and show them you still care.

Here’s what the community told us:

1. “Please don’t stop inviting me places, even if you know I can’t go. The social isolation hurts more than the pain most of the time.”

2. “I wish people visited more. I wish people would just ask me how I’m feeling every once in awhile. It wouldn’t kill them and would make my days brighter… it would make me feel like I matter when I often feel I don’t.”

3. “I always get frustrated when someone complains on and on about a headache or virus and then I get mad at myself for not being more understanding.”

4. “I’d love for them to learn even just the basics about my illness because it gets frustrating and depressing having to explain so often. It’s not a problem with everyone, and maybe it seems like a bigger deal than it is, but it would only take five minutes to get the basics and would show someone actually cares.”

5. “I regularly feel like a burden, and I desperately want to talk about it but am so fearful of sounding like a broken record. Chronic illness isn’t something I can just push to the back of my mind. It is always present and is painful in more ways than one.”

6. “Sometimes, I’m jealous of you because you don’t have to live with constant pain and severe fatigue. Sometimes I’m jealous because walking is so hard for me and easy for you. Sometimes I’m jealous because you can do activities with your kids and my health keeps me from doing those things with my kids.”

7. “While my disease is not life-threatening, it is life-encompassing. People rally around those with certain illnesses with endless support and encouragement, and often I wish I had just a bit of that. We are the forgotten because we have to keep pushing through day by day until it’s our normal.”

8. “My house is messy because I’m too sick to clean most of the time. That’s why I tend to be a hermit. I wouldn’t want someone to come over when my house looks a mess.”

9. “I try to go to work with a fake smile on my face because it’s easier than breaking down and crying because my body hurts so bad. And when I do call in sick, I feel so horrible to the point I should be going to the ER, yet I don’t. The next day I’m back at work with the same disgusting smile on my face to hide my pain, and everyone thinks I’m faking my illnesses because of the fake smile.”

10. “It has made me more empathetic and understanding because before this I never understood limits. It has made me stronger because I draw on inner resources I never knew I had. It has made me more interested in living every good day to its fullest because you have to fit more into a good day if you know bad days might be ahead. It has made me feel blessed because I have friends who care enough to be there. And it has made me love more because I want to give it all while I have the opportunity.”

11. “I usually feel terrible after, or even while, spending time together. I’m usually so wrecked from using all of my emotional energy that I’m down for at least a day or two after. I never tell my friends that because I don’t want them to get the wrong idea or feel guilty. A couple days of being down is worth it to spend time with them in my opinion.”

12. “I feel guilty I’m not more involved with their lives, that the days can blur together so much that I don’t realize how long it’s been since I talked to them. Luckily, I have very understanding people in my life, but I know not everyone has that.”

13. “I know they have good intentions when they try to relate by saying things like, ‘I’ve had a cold (or some other common, acute illness) so I know how you feel now,’ but it comes off as patronizing and offensive.”

14. “I don’t tell my friends how upsetting and embarrassing it can be constantly requesting that they slow down when walking because I can’t keep up at their pace and fall meters behind them. Or internally struggling because I am forced to keep up as best I can.”

15. “I have so many other problems on top of my autoimmune disease. I constantly worry I will develop a new symptom or a new illness that will take away more of my time and energy.”

16. “While they know my illnesses are bad, I don’t often show just how bad they can get. I don’t think they realize what an effort it is just to get out of bed is. Even if I go downstairs and rest on the sofa, that can still make me exhausted. When I’m able to hang out, that’s me on my absolutely best days.”

17. “I’m still me inside. I’m still fun. I’m still outgoing. It’s just hidden and marred by this invisible illness. Sometimes I go home and cry because I feel like I’m covered in a layer of pain. When I’m with them I smile and act normal because I secretly wish I was. I hope and pray one day it will go away. But secretly I don’t think it ever will. I appreciate all they do for me. And I hope they never leave.”

18. “There is no ‘look’ when it comes to having a chronic illness so stop before you assume. Talk to me as a person. My illnesses is part of who I am but not all of it. Get to know me, not my illness.”

19. “I wish they would still tell me about the problems/excitement in their lives. I don’t instigate conversations because I don’t have much to talk about, but I would love to hear about them!”

20. “Honestly, with my close friends, I don’t hide anything. It’s easier when you tell it all. Keep them aware. They want to know more. They want to help.”

21. “I spend so much time sitting on the couch watching Netflix (I can start and finish a whole show in two days). I go many days without a shower or changing my clothes or sometimes even brushing my teeth.”

22. “When I’m having a bad day, their voices hurt and their touch hurts. Yes, even whispers and kind hugs can make a TMJD migraine worse. I still love my friends, even when they make me flinch.”



22 Things People With Chronic Illness Don't Admit to Their Healthy Friends
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