Tag Archives: advice

How to plan the best summer vacation despite your chronic illness

How to plan the best summer vacation despite your chronic illness

 

 

 

 

 

 

 

 

Does the thought of taking a summer vacation get you excited or does it send chills down your spine?  I loved traveling before I became chronically ill.  In addition to yearly Disneyland vacations, I loved exploring new areas in other states or within the ones that I lived in.  Weekend road trips without a destination were my favorites.

Soon after chronic pain became a part of my daily life I began to loathe traveling. It wasn’t that I didn’t want to go exploring, instead it became too painful. Not only did my excursions increase my pain while away, it would take weeks and sometimes months to recover from them once I returned home. Not wanting to spend most of my time recovering I opted to stop traveling.

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Packing for your Invisible Traveling Companions

Packing for your Invisible Traveling Companions

I may be able to escape my everyday life by going on vacation, but there is no escaping my chronic conditions. Other than making sure I packed my medication, I rarely gave my conditions any consideration or thought. This led to some disastrous getaways. Thankfully I began viewing my illnesses differently a few years ago and it has made for some wonderfully memorable trips.

Extra passengers

Finally accepting that I couldn’t escape my illnesses, I began thinking of them as extra passengers. I even named them: Fibro Fannie, Polly PsA, and Agatha Adhesion. This trio is with me wherever I go. It is much like traveling with my children. They get antsy, irritable, and have temper tantrums. Like when my children were young it is imperative that I bring along items to comfort and calm them.

*This post contains affiliate links. Meaning that at no additional cost to you, I earn a commission when a purchase is made from my links. The proceeds offset the expense of operating this blog and funds the giveaways in my Facebook groups. This post was originally written in 2016 and parts have been updated in 2019.

More than the bare necessities

Imagine taking a road trip with your little ones and bringing nothing with you to entertain them or to comfort them. In addition to bringing their favorite videos, coloring books, blankets, pillows, and/or stuffed animals I also brought items that they would need for accidents. I kept extra clothing and a first aid kit in an easy to access bag. Thankfully I rarely needed to open that bag, but I was prepared just in case.

When packing for a trip with my temperamental trio I go beyond the bare necessities of caring for them. Besides my medication I bring items that provide my body comfort. Having things like my heating pad or icepack in my hotel room makes getting through a surprise flare a better experience than if I hadn’t brought them. Being prepared for the worst has also made it possible to get through my flare faster than if I or my human traveling companions had to find a store to purchase what I needed after the fact.

 

Be prepared

Before you begin packing, think of all the items you use to comfort yourself throughout a flare and write them down. Next go through that list and check the items that you will be able to bring along. Even though you may not be able to bring everything, you can see if those items or services you use are available at your vacation destination. For example, you can’t bring along your masseuse, but you can book your stay at a hotel/resort that offers massages. My husband teases me about the amount of luggage I bring on our trips, but he understands the importance of packing for my conditions. Sometimes I never have to use any of the extra items packed and other times I have used them all.

Here are some of the items I bring on vacation in addition to my medication and Oska Pulse:

For my body: 

To entertain me if I end up having to spend time alone at the hotel:

These items do more than keep me occupied when awake for hours, but unable to go anywhere, they also serve as a distraction.

Instead of only focusing on all the fun things you want to do on your next getaway, take time to think of the worst tantrums that your invisible passengers could throw and plan accordingly.

Related posts: Unrealistic Vacation Expectations and Tips for Choosing a Vacation Destination

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

5 Best Practices for Safe Walking

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If you would have told me two years ago that I would be writing about walking, I would have laughed until I cried…… But that is exactly what I am doing!  Two years ago I was thrilled to be able to walk through the grocery store, walking for exercise or fun wasn’t on my radar yet.  But that isn’t what today’s post is about, click here to find out how I went from barely moving to running circles around my family and friends, today I am going to share to stay safe while walking.

*Disclosure: This post includes affiliate links. Meaning that at no additional cost to you, I receive a commission when you make a purchase through my links. The proceeds earned fund the giveaways I host in The Disabled Diva’s Fitness Buddies and Disneyability Group on Facebook.

1. Be aware!

This practice covers several areas.  The first being preventing personal attacks.  Try to walk in daylight hours or on well lit streets.  I recommend carrying mace/pepper spray, a stun gun, or at the very least a rape whistle/alarm.  Know your route and identify possible escape routes by pulling up and studying the area on Google Maps.
Shady people aren’t the only things you need to be on alert for.  As I learned two weeks ago, pinecones are evil! Seriously though, watch for debris on your walking path. While you may not have much of a chance of slipping on a banana peel, your odds of tripping on uneven pavement, rocks, pinecones, bottles, cans, trash, leaves are high.  When walking at night use a flashlight to see hazards before you step on them!

2. Make yourself visible

If you are walking between dusk and dawn, you need to make sure that people are going to see you.  I don’t care how much or little traffic your walking route experiences, all it takes is for one driver not to see you and boom! So do yourself and those that love you a favor and dress in bright neon or white clothing.  Not willing to give up your dark workout clothing? Then wear a reflective vest or arm/ankle bands.

3. Go inside!

When the air quality is less than desirable or if the streets/sidewalks are wet or icy, walk indoors!  You don’t have to join a gym or purchase a treadmill, you can walk your local mall for free!  Other options, although you won’t be able to walk fast, are to visit a local museum, art gallery, or indoor flea market.  If weather conditions make it unsafe to drive, walk in your house! Walk in place on a mini trampoline, in front of your TV, or just walk from room to room.  Best part of walking at home is knowing that if you get too tired you can sit down and rest.
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Mini Trampolines and Treadmills make working out at home a breeze!

4. Make it a group activity

If possible, get yourself a walking buddy! You could get together with a group of friends or neighbors and turn your exercise time into a fitness happy hour! If you must walk alone, bring your dog. They are great at fending off strangers. Even small neurotic chihuahuas provide protection. Don’t have a dog? Ask to walk your neighbor’s. Having someone else to be accountable to will get you out the door regularly.  Walking with someone always motivates me to push harder than if no one was watching.

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5. Track your steps

 If you are like me, you may have a tendency to overromanticize your physical accomplishments if you don’t have proof of what you did staring you in the face.  There have been times when I thought I racked up thousands and thousands of steps, only to later discover that I barely accomplished a small percentage of what I thought I had.  Tracking steps makes you aware of what you are really capable of.  When dealing with chronic pain, this knowledge can help you plan future outings.  If an event is going to require more walking than you typically do in a day, you will know whether to cancel or bring along a mobility aid.  When you track your steps and chronic pain, you will find a range that will become a warning for you to stop before running yourself into the ground.  This will decrease the number of days you spend recovering from pushing yourself too hard.

 

 

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Choices That Reflect Acceptance of a Chronic Illness

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Have you accepted your chronic illness? I mean really accepted it??!! Because, if you haven’t, you are most likely making your life harder than it has to be and increasing your pain in the process.

“Accepting a diagnosis is what puts us in charge. Yes, our illnesses are the reasons for having to make changes to how we do things, but we are the ones who decide what we are willing to do in order to decrease or limit our pain. If my spine is throbbing, I can either choose to use a wheelchair or walk. If I choose to walk, I am guaranteed to send my pain level through the roof and sentence myself to days or weeks in bed. I may still increase my pain level if I choose to use a wheelchair or motorized shopping cart; however it will be less than if I hadn’t used them. When we decide to put our need of a lower pain level above our belief that we have to do things like we used to, we WIN.”

~Quote from Make Pain Your Bitch: How to Dominate Your Chronic Life

The choices you make on a daily basis reflect whether you accept your illness or not.  You can fool yourself, but I can see if you really have accepted your illness.  If you refuse to make modifications to how you do things, schedule your agenda, and care for your body, you haven’t accepted that your chronic illness is incurable.  If you choose to stay home rather than use a wheelchair or rollator, you haven’t accepted your illness.  If you insist on keeping the same type of schedule that you did before becoming ill, you have not accepted your disease.  If you refuse to make dietary changes, you haven’t accepted that you have an illness that could benefit from those changes.

Acceptance is reflected when someone doesn’t throw a fit every time they have to make modifications or eat differently than they did before.  It is evident when they don’t allow the use of a mobility aid to tarnish an outing.  Acceptance is visible when the person isn’t constantly running themselves into the ground.

I know, I know, you think that by doing those things you are changing your life and in turn giving into your disease….. But I’ve got news for you, your illness has already changed your life and no amount of fighting it will undo it! In my eBook Make Pain Your Bitch: How to Dominate Your Chronic Life, I explain why making modifications and changes are forms of winning, not losing.  I challenge you to examine your life and behavior so that you can make changes that will help you live passionately and purposefully.  If you enjoy feeling like crap, hanging out in the emergency room, begging for pain medication, or watching your friends and family move on in life while you remain at home, then keep doing what you are doing. However, if you want to start living and are open to living differently than you did before, click here to download my book NOW!

My experience and advice won’t cure you, but if you follow my advice your life will improve! How do I know?  Because I have been there!! I used to think that I was winning by not making changes.  I also spent a lot of time in the emergency room and at home alone……….

My life was nothing like it is today.  It took years of trying different things and making modifications to get where I am at now…… Was it easy? Hell NO!!! But it was and still is worth all the hard work.

What are you waiting for? Start making chronic pain your bitch today!

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This post contains affiliate links.  Meaning that at no additional cost to you, I receive a commission when you make a purchase through my links.  The proceeds fund the giveaways for my Facebook groups The Disabled Diva’s Fitness Buddies and Disneyability.

OSKA TRY Save $55 with code DIVA

 

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5 Tips That Will Make Trick or Treating With Chronic Pain Less Painful

5 Tips That Will Make Trick or Treating With Chronic Pain Less Painful

 

Halloween can be a frightful time, especially for the chronically ill.  We may not be afraid of ghosts and goblins, but we do fear the pain and fatigue that we will experience while and after we take our kids trick or treating.  When my daughter was a wee one, I feared not having the strength to walk the neighborhood with her or having my body give out before we arrived home.  I worried about how many days my body would need to recover afterwards.   Done fearing Halloween and the beating my body was in for, I made some changes.  Here are the changes that I made and how they can help you too!

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1. Use a mobility aid or drive

So what if you can’t walk your children around the neighborhood?  Use a mobility aid! Because it is Halloween, you can work a wheelchair or walker into your costume, or better yet use something different like a bike or have your family push you around in a wheelbarrow.  Don’t want to use a mobility aid and are worried about how far you will be able to walk? Take your car and park at the end of the streets you plan to visit.  This way if your body begins to wear out you will only have a short walk to your car and can get home without extra pain.

 

 

2. Choose a different venue

Walking around the neighborhood isn’t always the best option.  There are many reasons for this such as; uneven or lack of pavement or sidewalks, distance between homes, or having to go up and down hills.  By taking your children to a local church or community held event you will have less walking between stations where candy is being dispersed and a better chance of having a smooth or flat surface to move about on. Your vehicle will also be close by and many local events have areas for guests to sit and rest.

 

 

3. Give yourself options

Before my daughter outgrew the need to have her mommy take her trick or treating, I began giving myself options. Not knowing how we feel one day to the next makes it difficult to make plans.  There are some churches and community events that do not take place on Halloween evening.  I marked my calendar with the ones I thought my daughter would enjoy the most and committed to attending at least one.  We attended events on the days that I felt well enough to get my daughter dressed up and both of us out of the house.

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4. Rest

Don’t wait until a few days before Halloween to decorate or go costume shopping.  Part of pacing ourselves requires planning ahead.  Don’t listen to your abled bodied friends, it is okay to decorate for Halloween in September! Give your body and schedule a break by making sure you have time to rest before your outing as well as afterwards.

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5. Have a back-up plan

Prepare for the worst by finding a friend or relative who would be willing to take your children trick or treating.  I know you would rather be there to watch your children smile or hear them squeal when the receive their favorite candy, but sometimes we just have to accept the fact that we can’t be there.  Don’t worry, your children will still have plenty of smiles and squeals to share with you when they return home with stories of their adventure!

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How My Chronic Illness Turned Me into a Vampire

How My Chronic Illness Turned Me into a Vampire

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I used to think that I suffered from insomnia. However, insomnia or painsomnia, as many of us who suffer from chronic pain like to refer to it wasn’t to blame. Insomnia is not being able to sleep. Painsomnia is when pain prevents someone from sleeping. After an experiment I discovered that neither were really my problem.

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Five years ago I discovered that my body had its own opinion in regards to when sleeping was possible. Weather changes, mainly pressure from storm fronts or heatwaves are mostly to blame for my nights and days getting mixed up. I used to fight them by medicating heavier than I typically did, but that only made me feel worse when I woke up. Or I would just lie wide awake in bed all night long waiting to fall asleep. When I would finally fall asleep I didn’t make adjustments to get the hours I needed, instead I would force myself to wake up when I had planned. Since that wasn’t working I decided to start listening to my body and to give it what it wanted.

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I didn’t work outside of my home. There was no reason for me to be awake during certain hours of the day except for my wanting to keep a “normal” schedule. But it was that “normal” schedule that causing my exhaustion. Without an excuse I decided to begin an experiment. Instead of fighting my body I chose to work with it. This meant not forcing my body to go to bed or wake up before it was ready. It also meant accepting that there would be times when my “night’s” sleep would actually occur during the day.
When I began following its lead my body rewarded me with 6-10 hours of sleep at a time. During the hours that I was awake my brain wasn’t foggy nor did I feel sluggish. Once I accepted my natural sleep cycle I learned how to make the most of it. Instead of lying in bed waiting to fall asleep or trying to numb myself to sleep with medication I use those hours the same as I would if I were awake during the day. I use that time to cook for my family so they will have something to eat while I am sleeping the next day. I also use that time to work and catch up on household chores.

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Going to bed when the sun rises and waking up before sunset isn’t my first choice, but I’d rather live like a vampire several times a year than live everyday like a zombie. Thankfully the current heatwave in southern California is nearing an end and my sleep schedule will soon revert back to its regular pattern. But until then I will continue to soak up moon beams and be thankful that I can sleep, even if the hours aren’t ideal.

Do you suffer from insomnia or painsomnia?  Or could it be that you just haven’t discovered your sleep pattern?  To be clear I am not discounting or saying that insomnia and painsomnia isn’t real, because they are.  They just weren’t my problem.  For me it was truly an issue of not working with or around my illnesses.

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No matter when I sleep, Oska Pulse helps me achieve the restorative level of sleep needed to function.  Click here to visit Oska Wellness and use promo code DIVA to save $55 if you choose to give it a try.  Join Facebook group The Disabled Diva’s Alternative Chronic Pain Fighting Forum to learn more about this drug-free pain relief device and other alternative ways to combat pain from your chronic illness!

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Why taking a post trip vacation is necessary for my chronic body

Why taking a post trip vacation is necessary for my chronic body

By Cynthia

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My chronic life is unpredictable.  What knocks me down one week might not the next.  My energy level and physical ability varies on a daily basis.  The same is true while traveling, I never know how often I will be able to participate in activities or outings or if I will spend most of the trip in bed.  Nor do I know how much time my body is going to require to recover from each getaway.  For the average person going on vacation equates to escaping their regular schedule for a week or weekend and picking right back up where they left when they returned.  It’s a completely different ball game for the chronically ill.

Many of us are exhausted before we hop in the car or board our flights.  The time spent doing laundry, packing, and planning our excursions decreases and sometimes depletes our already limited energy supply. Then there is the trip itself.  No matter how relaxing of a getaway I plan, it is always tiring for my body because of the prep and traveling involved.  One thing that I can always count on is the fact that my body will require some amount of time to recover before I can resume my “normal” life.  There is no rhyme or reason for how much time is needed, sometimes I am back in action within a day and other times it takes days or weeks to recover.  Prior to learning how to vacation with my chronic illnesses in mind I would be knocked down for months afterwards.  You can learn more about the changes I have made to decrease my after vacation downtime by clicking here.

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Although I haven’t been able to eliminate the need of an after vacation holiday, I have found ways to make it easier on myself and others.  Instead of just clearing my calendar for the time spent away from home, I also clear it for the week following.  Sometimes I need less and sometimes I need more, but a week gives me time to see if I will need to extend my after holiday break.  By doing this I also reduce the stress and worry of needing my body to recover faster than it is ready to and decreases how often I cancel plans.  Planning a post trip break allows me to relax, address new pain, decrease pain that I made worse while away, and slowly adjust back to what my body considers normal.  I spend my post holiday downtime allowing my body to rest when it wants to; this may mean taking multiple naps or following an undesirable sleep schedule until my body gets back into its groove.  This time is also for replenishing my body of what I may have denied it while away.  I drink more water, eat healthier, and listen to its needs.  Long hot baths and a massage are musts for me!

Planning post trip recovery breaks has made my returns tolerable and pleasurable.  Do you plan an after vacation holiday or do you find yourself frustrated by trying to force your body into its normal routine?

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