On my terms…

I can’t remember the last time I cleaned my apartment, did laundry from start to finish, and accomplished all the other mundane things one does to keep things in their lives organized, in one day.  I recall a time when I would get up at 5 a.m. to start my day.  By 8 a.m. when the rest of the world was just getting up and engaging in their day, I had put in my run for the day, cleaned house to a spotless shine, gotten my daughter up and ready for school, and was attired in my military uniform and out the door for a fulls days work.

That seems like such a long time ago. 

Now days, I do house-cleaning during commercials.  Yes, I realize that sounds odd, but I have found that if I clean during the commercials and rest during the show, I can get the dusting, vacuuming and such done in a day or two..or three.  Gone are the days of cleaning the house in one day.  They haven’t been around for a long time now.  I have had to learn to make many adjustments in my life in order to overcome the many obstacles I face as someone living with CFIDS/FMS.

Usually, I do laundry on Fridays.  Nothing else.  It takes me all day to do three (3) loads of laundry, fold it and put it away.  Sometimes, I have to split it up and do it in two days.  I hate when that happens, because I don’t like to leave things unfinished.

Washing and waxing the floors are done every two weeks or so.  Because of the bad weather we have had as of late in Tulsa, I haven’t cleaned them since Christmas.  The energy just hasn’t been there.

Vacuuming…now that is one thing I do not look forward to.  I have done everything I know to make it easier on myself, including purchasing one of those light-weight vacuum cleaners – you know the ones that weigh less than five pounds or something – and still, I struggle to vacuum.  The pushing and pulling action of vacuuming is so energy depleting I just cannot accomplish it in one step anymore.   That one task has now been delegated to commercials.  I do it for a few minutes and then rest for 5-10 minutes and then start over, until the room is done.

Dishes…well, that’s another one.  I don’t know what it is about doing dishes, but I seem to only have one time a day I can count on having enough energy to catch up on my dishes, and that is in the morning when I first get up.  Some days, I can keep up pretty well, but other days just find the dishes stacked in the sink until the next morning.

Showers are another mundane thing that gets tossed to the side when my energy levels are depleted.  I have been known to go without a shower for 2 or three days.  Really.  I remember being in the hospital several years ago when I was suffering from seizures.  I hadn’t showered in like a week.  The doctors tried to put it down to depression!  I remember thinking,

you have several seizures in a day, on top of having CFIDS/FMS, and tell me that showering will be a top priority.  I think not.

I now type on my laptop instead of writing out my thoughts with a pen.  Within minutes of writing with a pen my hands become very painful and tired.  My hand-writing starts to mimic that of a two year old before long.  I have found I can do more on my laptop with less stress on my hands than doing it the old fashioned way.  So, that too  was another adjustment I had to make in order to survive.

Then there is Memory.  I will bet you all the money I make in a year, anyone who has CFIDS struggles with memory.  A few years ago, I discovered if I alphabetize my spices, even on a rough, cognitive day, I could find them.  I carried that philosophy into my closet by color-coding my hangers or sorting everything by type.  Anyone who knows me knows that if they ask where something is, I can tell you what closet, what shelf, and what side.  I have had to do that, or I can’t locate anything.

I have had all sorts of things disappear: money, silverware, cell phones, clothes, all sorts of things.  If I don’t put it back right away in its allocated spot, it is just gone.  I have come to the conclusion that I must be throwing things away or something, but I don’t really know.  I just know if they don’t go back in their exact spot, I loose them or can’t recall where I put them.

I even had to change the way I do my grocery shopping.  I do it once a month.  It takes me anywhere from 2-4 hours plus the 30 minutes or so to put it all away, and then I am done.  I can’t even bear to think of having to do that more than once a month.  Planning my menus, figuring the budget, shopping, carrying it up, and putting it away…exhausting…the kind that lands you in bed exhausting.  I hate grocery shopping now.  I think grocery shopping is the number one ‘energy-sucking-on-steroids’ task I accomplish each month.  If I could afford to hire a cook, that would be the first thing she would take over.

Learning to live with CFIDS/FMS means that I have had to make enormous adjustments in my life.   Some small and small large.  I wish I could say it has been an easy transition, but that would not be the truth.  I often wonder if the reason Type A personality-type individuals get this illness more often than not, is because we have this innate tenacity that won’t let us give up.  We will try and try until we figure out some other way to accomplish our goals.

I am always stunned at what those who suffer with these chronic illnesses are able to accomplish.  It is quite amazing.  I wonder if we would be able to do all we do if it weren’t for the fact that we were type-A’s?

For me personally, I have found that I must make these adjustments, every day, if I want to make room for the rest of my life.  Otherwise, I would expend all my energy taking care of those mundane tasks and my life would just pass me by.  I refuse to allow that to happen.  This is my life, and I may not get to have it my way, but I will have it on me terms.

Determined to continue forward,