A Holiday Guide for the Chronically Ill…

“It’s the Most Wonderful Time of the Year”, or so the song says.  A season where friends and family come together and share meals, presents, and time together.  We anticipate it to look like a Hallmark Christmas Special.  A happy family traveling with a car full of packages while the kids are behaving the back seat.  The anticipation builds as the car pulls into grandma’s driveway.  Suddenly everyone comes out smiling and hugging and spreading cheer all around.  It’s magical!

Don’t get me wrong, I LOVE Christmas and Thanksgiving! I love it like I love pizza, hot fudge cakes, and swiss cake rolls (none of which I am allowed to eat).  I love it so much I will decorate for Christmas before Thanksgiving arrives…gasp…yes I am one of those.  I love the true Spirit behind Christmas.  It is a special and holy time of year.  But I also love  the lights, excitement, and the anticipation on my nine years olds face.

Had I not experienced firsthand the deep struggle the Holidays bring for those with chronic illness, I would never truly understand the frustration, uncertainties, and even sadness one can feel during this time.  I have spent Thanksgiving in the ER and Christmas in bed (except to watch to kids open gifts).  One year I was determined to make it home in time to be with my children on Christmas morning.  I purchased their gifts from my hospital bed(Amazon Prime gives me life).  And after 17 long days in the hospital, I made it home in time to be with my family.  I was sick and extremely weak, but I was there.

You see every action or step a POTSIE takes steals a portion of their already depleted energy.  Getting out of bed can pose numerous problems on any day of the week.  Whether they have tremors, or dizziness, or weakness, etc., simply getting out of bed is a challenge.  Then after taking meds in hopes to calm down the symptoms, it is shower time.  Seems easy enough. Except it’s not.  For a Potsie it is the equivalent of fasting for a day without any food or water,  spinning in circles ten times, and then trying to wash our hair and body.  Most require a shower chair for safety purposes.   After showering, it’s nearly certain there will be a time of rest.  Calming down the autonomic nervous system and waiting for the symptoms to pass can take time.  A great amount of energy is lost during this process.  Finally, after getting ready, more meds are required for traveling.  We easily become car sick and begin experiencing worsening neurological symptoms.

So once we arrive at our destination, our bodies are completely confused.  The room is spinning.  The voices seem so loud around us.  The lights on the tree are making our eyes blurry and our headache worse.  We won’t complain.  We suffer in silence because we desperately want to be in the moment with our loved ones.  We know our bodies will begin to break down in a few hours.  But we grab the time we are given and cling to it, enjoying each moment possible.

Do you know how many mothers (myself included) who carry a whopping load of guilt during the holidays?  We can’t go and do the activities we once did with our children.  We try to make new traditions.  Ones that involve a sofa, chair, and 13 bottles of water.  We try to make it to our children’s Christmas plays, recitals, etc, and sometimes we just cannot tolerate it.  Our hearts break every time we hear our child ask why we could not attend their event.

Other POTSIES have found themselves isolated from their families because of this illness.  For them, it is a cruel reminder they do not have a strong support system. Many have lost their jobs and struggle greatly with finances.  It’s real life for us.  These problems are the norm and not the exception unfortunately.   It’s our daily reality.   We fight for quality of life each day we wake up.

Even though I physically am not personally prepared for this holiday season, my heart is beyond excited I will be spending it with my family and not in an ER.  I have more things to be thankful for than I could possibly list.  I love the true meaning of Christmas and that never changes no matter my circumstance.  I can see beauty in these ashes.  I can see life in this desert.  But that doesn’t mean that I don’t have moments of sadness and helplessness.  It doesn’t mean I don’t need the love and support of my friends and family.

I have said it before, and I will say it again…I am one of the most blessed chronically ill gals ever.  I have the most amazing support system and I will never take that for granted.  But I will speak up for those who feel they have no voice. I will share my heartaches and grief in hopes others can see that although our bodies do not function properly, our desires are very much the same.  We want more than anything to enjoy these precious moments with you.  We may need a little extra grace this time of year, but our heart’s desire is to make memories, be in the moment, and enjoy the time we can with those we love.

 

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