Making Spoonie Life Fun

When you have a chronic illness there are a lot of things that may seem weird to some.  The two of us have some things kept in our room that may seem odd to outsiders.  These include but are not limited to medications, wigs/wig heads, braces and various other medical devices.  Of course, we do not find these items to be weird, but we know that they are not “normal.”

The Pulse Ox Game
FUN FACT Nemo just bought a pulse ox monitor (it’s purple) and it has created a fun and exciting new game.  You see, there are times when we get really bored and we really do not want to do homework (ex. now).  That created the always fun and exciting pulse ox game.  

HOW TO: Have Nemo put on the monitor and play one of the following modes

MODES:
CHALLENGE MODE: see if taking deep breaths can raise oxygen--the goal is to get oxygen above 93
ACTIVITY MODE: see the greatest distance in “normal” in heart rate and oxygen while performing daily tasks (Best/High score is 81(oxygen) and 121(heartrate))
RELAXATION MODE: see if when relaxing or lying down if the numbers appear “normal” (Best/High score is 96(oxygen))

Hide the Wig Head
FUN FACT we have a wig head in the room because Tremors wears wigs from time to time.  This wig head lives on one of our shelves with the face towards the wall.  Naturally, this can cause a problem when people who are not familiar with the wig head (named Grace) see it on the shelf.  It is a fun way to freak out people if you let them find it on their own, and is also a conversation starter.

HOW TO: Hide the wig head in random places and wait to see how long it takes for people to find it.   

Friendship Bracelets
FUN FACT we have friendship bracelets, but they are medical bracelets.  When most people hear the word friendship bracelet, they think of cute, matching bracelets worn between friends.  We have bracelets that have bands you can change and our medical information printed on them.  We change the band colors and of course that means that we do occasionally have days where we match (this includes planned and unplanned matching).

Medication Boxes
FUN FACT medication bottles can take up A LOT of room and don’t exactly make your dresser look cute.  Naturally, this caused the creation of having pill boxes that can hide the mess (most days) and are something that do not look super medical.  Nemo’s box has stripes and Tremor’s has polka dots.  It’s the little things.  

Appointment Scheduling
FUN FACT we see A LOT of different doctors and go to A LOT of different clinics.  This means that scheduling these appointments can take a lot of time and energy.  Personally, we have the problem of calling when the receptionist (or whoever is in charge of the phone) is on break.  This of course leads to laughter and frustration when it is time to set up appointments.

HOW TO: Pick up phone, put on speaker and place bets on if you will get a response.

DIY
FUN FACT Nemo is the Queen of DIY medical bracing.  You kind of have to when you dislocate a lot.  There have been countless hours making braces out of materials in the room.  There are days when DIY doesn’t mean making cute or crafty projects, but instead means making splints and braces for dislocated body parts.

HOW TO: If a dislocation has occurred, see if there is a way to help/fix and then see what is in the room.

MODES:
LATE NIGHT: How fast/how creative can Nemo get making the DIY device(s) after 11pm
SPEED ROUND: How fast/creative can Nemo get when on the way to class or another engagement
PARTNER: With 2+ people how fast/creative do the devices get made
MULTIPLE: With multiple dislocations how fast/creative do the devices get made
**Rounds can be put together for added difficulty**

When living with a chronic illness, your life changes and you have to learn how to adapt.  For the two of us, that means that we try to live a life where we can laugh.  When there are days that you can barely get out of bed, or are feeling so sick that you want to curl up in a ball.  Those are the days that you need to laugh more than ever.  We know that we are not “normal” college students.  We know that what happens in our room (our bubble) is not typical in any way, shape, or form.  There are medical devices, and we know that we need them.  


WE BELIEVE IN YOU!

-Nemo and Tremors

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