You have accepted it.  After years of struggling to find a diagnosis, you’ve either received a diagnosis of “chronically shaky and tired” or “I dunno”.  You know for a FACT that there is and has been something very wrong with you for many, many years.  Years of walking into your physician’s office and the question “How are you today?” has become a rhetorical one that goes unanswered.  The doctor already knows you feel like a piece of shit on a stick.  And he sighs, looking up at you as if to say “what now”?  He is as powerless as you are.  But there is something in you that isn’t powerless.

It’s your power to adapt.  To change.  To become something completely different.  You started out in life looking forward to flying to Hawaii.  Then the plane landed in Holland.  You were stuck in Holland for life.  I mean, I have nothing against Holland.  It’s just that you have to learn a new language, culture, get used to the weather, transportation, and it most certainly isn’t Hawaii.

***

So, now that we are strapped for energy, friends, money, sunlight, and moonlight, here are some tips to help you and your illness in your long, long life journey together:

Showers:  don’t.  You will get out of the shower and all of your energy for the entire day will be gone.  Sink.  Fill it up with warm water.  One facecloth to wash, one facecloth to dry. Yes, your whole body.  You might need two to dry.  Yes, it’s just as effective and takes up 1/4 or less of the time and energy.  Razor, deodorant or antiperspirant or whatever you put in your pits.

Feet:  Sit on toilet when you have energy and soak them with a bowl and soap/products you have there all the time.  Soak feet.  Trim toenails.  If anyone makes fun of you for having toenails that are too long, kick them in the jaw.  That shit’s hard work and pedicures are for the rich.

***

Laundry:  MUST be outsourced unless you are fortunate enough to have washer/dryer inhouse.  Get somebody, a friend, a family member, next door neighbour, pay someone to do it.  I’ve done it all.  IF you have washer and dryer inhouse, have a bin of a certain size and NEVER let it get full before you wash the contents.

Ironing:  only to be used as a defensive weapon for intruders.

Underwear:  either wear it and do laundry or just don’t wear it at all.  I mean, you could just let your laundry pile up and buy new underwear every time you need it.  Same with clothes.  Now we’re getting into hoarder territory and we’ve got a whole new set of problems.  Whatever you do, do not let it get to this point.

***

Food:  I still struggle with this one.  I generally do not cook because Kelto has such a poor appetite.  So it’s just me.  A doctor recommended that I eat those “Hungry Man” dinners which is just fine.  People will be critical and say “no wonder she’s sick, all she eats are those TV dinners”.  You have two choices here.  You can kick them in the teeth, or, you can transfer the contents of the TV dinners into plastic containers so nobody asks any fucking questions.

Get your groceries delivered to you.  Get someone else to pick them up for you.  Same goes for prescription medication.  Places like Wal-Mart will suck your energy out as quickly as you might get sucked into a jet’s engine (does that happen?).  Anyways.  The person who picks up your meds at the pharmacy may be asked once in awhile how you, the phantom person, is getting along.

Personally, I highly recommend that if you are female and younger, marry a chef.  All of your problems solved right there.  A dishwasher is an absolute must.  Never, ever live in a place without a dishwasher.

***

Cleaning.  Live in a place WITH NO CARPET or stairs.  Vacuuming is SAVAGE and BRUTAL.  Get a broom and dustpan and a Swiffer Sweeper and you’re set.  Spring cleaning?  You’re fucking kidding me, right?  You can get someone to come in and clean for you.  I have done that a LOT and believe me it’s worth it.  And the smaller the place you live in, the cheaper it is.  Consider downgrading.  Like live in a boler camper or something.

NO lawn mowing.  NO outdoor plants.  Sunlight and sweating your ass off in the sunlight and exposure to every allergen known to man is NO garden party.  You cannot enjoy the results of your handiwork passed out on the lawn, intermittently looking up at the sky.

Pets:  get a CAT.  They take care of themselves and it is not that much work to clean the litterbox.  Get a domestic shorthair from the shelter.  They self-clean, and really who cares about shedding?  They are really great companions and worth the effort.  Dogs? NO.  Unless you’ve got someone else or a partner to walk the dog every day, don’t do it.  Walking a dog is like going on a marathon.  You come back nearly unconscious. Unless, of course, you already have a dog and the dog is therapeutic and helps you conserve energy.  Knock yourself out.

Transportation:  this is an issue totally up to you.  Driving  car while chronically fatigued, in pain, and depressed can be considerably distracting.  Going through stop signs lately?  Going through red lights?  Hit any small children?  Might be time to consider getting friends/family to do some driving for you.  Or pay people to do it for you.  I have also done this.  Not hit small children, that is.

GOING OUT/ENTERTAINMENT

Don’t.  This involves make-up, shaving your legs, energy expenditure which will cost you your entire weekend, and alcohol, which will just plain cost you.  I suggest getting to know your movie channel, renting movies from your local library, attending movie night at your local library, or just spending a night at your neighbors’ place.

This might take a bit of courage to step outside of your comfort zone, but these people and places do not require you to get all gussied up and tipsy in the traditional “going out” sense.  You are going to need ALL the friends you can possibly get.  And so are they.

***

As I write this, I cannot help but look back and wonder what Hawaii might have been like.  I love living vicariously through characters in movies.  That is why I watch so many.  But the truth is, a life less complicated with a few true friends is the life I have and is the life for me.

 

Advertisements