Tag Archives: Chronic Life

My New Year’s Wish For You!

 

 

 

 

 

 

As we begin a new chapter in our lives, I want to share my wish for you.

My wish is quite simple, yet at the same time most complicated.

In a nutshell, my wish is for you to make chronic pain your bitch!

I want you to take control over your life and health.  To work with your illnesses and around your limitations. To live a wonderful life despite being chronically ill.  I wish that you would let go of what is holding you back, this includes the fear of trying something new. I want you to love your life as much as I love mine.

To do it, you will need some tools!

Here are a few blog posts to help you start 2019 on the right foot:

Say Goodbye to 2018

Twelve ways to improve your chronic life

Resolutions without plans are just words

Chronic Attitude

An Extra Fabulous New Year

2018 Will Be a Fabulous Year If… (Still relevant today)

Ten simple resolutions

And last but not least, be motivated, inspired, and encouraged to take charge of your life in my eBook Make Pain Your Bitch: How to Dominate Your Chronic Life

 

 

 

 

 

 

 

 

 

 

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

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

A picture is worth a thousand words

A picture is worth a thousand words

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I am sure you have heard the phrase “A picture is worth a thousand words”, but not all of those words are a true reflection of the picture.  Those of us who suffer from one or more chronic illnesses are often unfairly criticized and judged.  If we are happy, we are accused of being”high” or not as ill as we claim to be.  If we are sad, we are accused of being depressed.  If we are experiencing a period of pain that keeps us from leaving the house, we are told that we need to get out.  When we do get out those same people doubt the severity of our conditions.  If we don’t share our story we are accused of hiding something.  Those who only share the hardships of living with a chronic illness are accused of being attention seekers and those who only share their good moments are accused of not being sick at all.  Then there are people like Yolanda Hadid from RHOBH (Real Housewives of Beverly Hills) that share both, the good and the bad, that really drives people crazy.

I recently watched season 6 of RHOBH on Hulu.  First I want to applaud Yolanda for having the courage to share her battle with Lyme Disease with viewers.  She doesn’t need the money, she could have easily declined to continue filming, but instead she made an invisible illness visible to the whole world. For this she is a chronic hero in my book.  The behavior of her so called friends could be blamed on the producers creating drama, but the sad truth is that their shameful behavior is exactly what most of us with a chronic illness face everyday of our lives. Her “friends” not only doubted her diagnosis, they also discounted the severity of her condition.  She was accused of having Munchausen syndrome (a condition in which someone fakes an illness for attention).  Some said she was probably just depressed.  Others couldn’t understand how she could be as sick as she claimed when she would post pictures of herself on vacation or having lunch with friends, and this my friends is the subject of this post.

Her “friends” said that her Instagram posts were confusing.  They didn’t understand how she could post a picture of receiving a treatment one day and then one of her smiling and enjoying life the next.  Instead of talking to her they chose to gossip about her all season long.  They assumed that the happy pictures represented a healthy moment.  I can understand why they would as typically when an otherwise healthy person becomes ill, they aren’t out enjoying life until they are healed.  But waiting is not an option for the chronically ill.  For those unaware, chronic means long lasting-without end.  We must embrace every moment of joy or life that we possibly can, otherwise we would never live at all.  Unlike most people we are not going to get better in 6 weeks, 7 months, or in 8 years.  And in most cases our conditions will only get worse as time goes by.  The chronically ill live different lives compared to our healthy friends and family.  The amount of time we spend outside of our bedrooms, houses, or doctor’s office is minimal.  Every outing comes with a price tag.  The payment for enjoying the simplest of normalcy includes a spike in physical pain, fatigue, guilt, remorse, and more.  Increased pain and fatigue result in spending more time in bed.  We feel guilty when the fallout of a simple moment like when having lunch with friends causes us to cancel other plans.  Sometimes our pain is so intense after an outing that we regret ever leaving the house at all.

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What bothers me the most about this confusion is that these women would most likely be singing a different tune if Yolanda had been diagnosed with a terminal condition.  If her doctors had said you only have a year left to live, those women would have been cheering her on and encouraging her to go out and grasp every moment of joy that she could.  They wouldn’t have told her to stay in bed and wait until she was healed before going on vacation.  They wouldn’t have suggested that she wasn’t dying when she chose to go out to lunch or spend time with her husband.  Even more annoying is that her “friends” opinions were solely based upon their perception of a picture. If they were to have spoken to her instead of gossiping, she could have shared what was really going on.  Instead of thinking that she must not be that sick if she was able to pose for picture with her mother on a yacht, they may have learned that the few minutes it took to stand and smile caused her to spend the rest of her day in bed.  Or that it took all of her strength to attempt appearing normal for her mom, even if was just for a moment.  Just because you see someone with a chronic illness smiling, it doesn’t mean that they aren’t in pain.  My pictures from Disneyland only tell a portion of the story.  Yes, I am enjoying that moment, but what you don’t see are my bowels being twisted and pulled in unnatural directions.  You don’t see my physical pain.  Most importantly you can’t see what happened afterwards.  You didn’t witness how I cried alone in the restroom because my body wanted to crawl back into bed while I just wanted to have one “normal” day with my family.

A picture may tell a thousand words, but those words are meaningless and often misguided if the person telling the story doesn’t have the whole story.  Instead of creating a distorted storyline for the picture, talk to the person.  The chronically ill should ever be discouraged from going out and enjoying life. My prayer this holiday season is that my chronically ill friends will enjoy the season and do what they can without worrying about their friends and family doubting their illness.

Wishing you a day filled with many reasons to smile,

The Disabled Diva

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Living with a body that doesn’t know how to forgive and forget

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One frustrating aspect of my chronic conditions is having a body that absorbs its surroundings, mainly sounds and vibrations.  I physically feel every beat of a drum, which sucks since my son is a drummer.  It’s a miracle I survived his days of Marching Band and Indoor Drumline. I never shared this with him at the time, but when he would practice at home I would lie in bed crying from the pain.  I never asked him to stop because I refused to let my conditions get in the way of my children’s passions.

Higher volumes produce a harder hitting punch.  My muscles and nerves may begin to spasm or twitch with the beat of the song.  Unfortunately this doesn’t end once the music does.  It will continue for hours, days, and sometimes weeks.  However music isn’t the only thing my body absorbs.  It has a vivid memory of all past physical trauma as well.  My muscles tense up and prepare for impact anytime someone hits their brakes quickly if I am a passenger, or if I hear the sound of a car engine revving up behind me.  But it isn’t just being in a car that reminds my body of past car accidents.  I have been in my house and heard car tires screech to a halt at a nearby intersection and had my muscles react in the same manner.  The abuse of my childhood also haunts my body.  While I have dealt with and come to terms those issues on a mental level, my body can’t forget the physical harm it received.  To this day my body reacts negatively when someone touches me without my permission or if I am unable to see that they are going to touch me.  What I mean by that is I am okay if someone is standing in front of me and goes to give me a hug or pat on the shoulder because I can see it coming, but not if they come up from behind.  I’ve improved, but there are still times when my body reacts faster than my brain which results with me hitting the other person.  It doesn’t matter who you are, if my body is the first to react I will hit you.  Because of this I try to sit with my back to a wall as much as possible.   BTW this is not a challenge for my family and friends; I really do not want to hit you.

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Living with a body that can’t seem to forgive and forget isn’t easy, but I have learned to make the best of it.  I refuse to let it stop me from living.  However, I am careful about what I expose myself to.  For example, although I love music, I can’t spend my days listening to it.  I’d never get any rest if I did.  This doesn’t mean I never listen to music; instead I limit how much I listen to.  Of course there are times that I can’t avoid sound or noises, like when I am at Disneyland.    I know that my sleep will be disrupted by the thumping of my muscles and nerves.   I prepare myself by making sure I have nothing scheduled for several days after arriving home.  After spending 3-5 days at Disneyland I am sure to clear my schedule for at least a week or two.

I am envious of people who can actually sit and relax when they are out to dinner or anywhere out of the house for that matter.  I envy them because I long for just one day when my body doesn’t react to every noise it hears or vibration it feels.

Do you have a body that doesn’t know how to relax or how to forgive and forget?  How do you handle your triggers?

Wishing you a day filled with gentle hugs and many reasons to smile,

The Disabled Diva

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