13 Perfect Christmas Gifts for Chronic Illness Warriors

Happy HoliDAZE! Such a busy, happy, fast-paced time of year, when well person's often get exhausted from the todo's and festivities. For Me, Christmas is wonderful, joyous, but also a messy, difficult, anxiety-triggering, sleep-paralysis nightmare come true. I have severe Narcolepsy with Cataplexy, Sleep Paralysis, Hypnagogic Hallucinations, Fibromyalgia, Rheumatoid Arthritis, Depression and Anxiety, as well as Restless Legs Syndrome. Therefore, I am always in significant muscular pain, and often blindsided with a feeling of not sleeping for a whole week, often consciously paralyzed for an extended time during the week.

Most of our loved ones and the general public have no real understanding just how difficult and utterly exhausting simple life tasks are , as well as the spoon debt which skyrockets proportionately to holiday parties, decorating, seeing and chatting with people whom assume I'm not looking sick enough. I do love this time of year, this is the Christmas my Savannah is so excited about! The lights, the trees, the toys!~ She wears me out!

If I could get presents from Santa for being a good patient superhero advocate, I really want these awesome chronic-illness friendly Christmas/ anytime Gifts!

1.Nap Cave: a room exclusively dedicated to slumber/recharging our 'batteries' Complete with blankets, couches, hammocks, cots, sleeping bags, daybed, bed, air mattresses, etc. As well as blackout blinds, white noise player, eye masks, etc.

Sleepy American's Nap Cave

2. Daily Full Body Sports 2 hr. Massage session to lessen the severity of muscular rigidity, pain, cramps, tears,etc. My Fibromyalgia pain leaves me helplessly drowning in intense charlie horses in my legs, glutes, back, shoulders, neck, etc.

3. Comfortable and Fun sleepwear, PJ's, as most of us with invisible disabilities live ready for bed,I mean kick butt... at the drop of a hat! This Nightshirt is Sleepy American's favorite to fight negative mindsets and misconceptions regarding invisible disabilities....

4.  Inconspicuous hidden Private napping place. Options include a sleeping bag- stuffed bear disguise and  a nap pod~ The Tranquillity Pod

5. Top of the line electric pulse(pro tens units) massager with many replacement adhesive pads.

6. More and better sleep: restful, uninterrupted, with NO Sleep-paralysis nor Hypnagogic Hallucinations. A full week of 8hrs continuous normal sleep wake cycles. Now in Phase 3 Clinical Trials is concentrated Xyrem, a drug which currently makes patients take 2 or 3 doses a night. By Putting Sodium Oxybate in Micro Pump Form, Avadel Pharmaceuticals is getting me closer to a good normal nights sleep.

7. Jacuzzi or Spa to ease tight muscles and relieve pain.

8. Fulfillment and Self-actualization as Sleeper of the House, Sleepy American to become widely known as a champion expert patient advocate and activist for Invisible Disabilities and Rare Disease. Narcolepsy and Fibromyalgia took away so much so early in life, I never got the chance to fulfill my dreams of becoming a Psychologist.

9. A self-driving vehicle which runs on clean energy, solar, and operates using GPS. No more cabin-fever, bumming rides from dear ones, better self-esteem and productivity as a citizen. Independence, dignity regained. Safer roads, happier lives. Transportation to get things done and introspect on my life, pain, and missions, as I have not been able to drive since 2003.

10. To write a book about my incredible life journey: from starving without medications to Superhero, Sleepy American/Sleepy American Heroes! The energy,quite time and finances to make writing my story in it's entirety in one book a reality.

11. The ability to expertly draw and illustrate effortlessly. I can write, I can create music, I only wish I could drawn beautifully.

12. Brand new custom designed and made Sleepy American costume wardrobe for each day, occasion as I see fit. Some PJs, easy lounge wear. a few formal, business casual, etc

13. The Real Life ability to Empizize, using my superpower to transfer real memories and experiences with mere touch.  For our family and friends, strangers often have never ending supplies of unsolicited 'expert' advice, panacea
magic cures not based in medical findings and research, the Empizer instantly corrects their way of thinking making them experience your or another's real life symptoms, life experience, etc.

         Sleepy American EnLightengs Judgementals, Unsolicited Misguided Advice

My Heart Glows Today, because I Empathize

I wrote this a decade ago, just found it in my old discarded myspace archives.
 Find Comfort My Friend, from a Fellow PWN (Sister Spoonie)

Today my heart glows because I could help.

Dark in the night of our lives we walk alone,

But together, when we reach out for help,

An angel is there, someone who understands.

Tears of joy stream down my face, because she called.

When faced with chronic illness, we are terrified.

So many questions, so few who understand.

Does anyone out there Know what I am going through?

A smile glows in my heart today, because I could help.

Like a diamond, I feel the warm joy of feeling worthwhile.

The reason, the purpose of posting my story Online, Fulfilled.

Today is the day I can comfort and reassure a friend I have yet to meet.

When not knowing what’s going on with our body, the fear, the worry;

To find an understanding shoulder is not easy to find.

Others think you’re lazy, though the exhaustion attacks us...

Against our will, the cloak of sleepiness overwhelms....

We are trapped if we do not reach for answers.

My heart glows today, because Someone reached out for help.

Narcolepsy is no picnic, and without each other, terrifying.

No one knows you like another with Narcolepsy.

No one else can tell the jokes only we can laugh about.

Thank you, dear friend, for reaching out today.

I know I don’t have money, but understanding I am rich in.

I hope I could help you, and that you know...

Thank you for making my heart glow with joy.

Thank you for calling me,

 For Giving me the privilege of being there for you. I wro

Collaged Emotions

***A poem I wrote as part of the scrapbook I made as a wedding gift to my Mystery Machine friends Curtiss and Julie Cox. Was it 2003? 

Together, we are different eggs in the same basket.
Black and white we create shades of gray.
You can depend on me, no need to fret.
Our love is sure to never fade.

Memories of us fill my mind;
Emotions consume my soul.
I think of our future, though I also like to rewind.
You enhanced my life; Made me whole.

How delighted am I to have you to hold!
Amazed by your enchanting spirit;
Our lives together we shall mold.
Truly for me there is no better fit.