Daily Life...Through The Eyes Of A Disease


Awakening in the morning, I rise slowly from my bed.

Bones are stiff, joints swollen and aches are everywhere.

They fight me every step of the way.

My first stop, the cabinet in the kitchen where my meds are stored. I open up the correct day(S M T W T F S), the little pile of pills await me.

My first ritual of every single morning.

Looking around, things need doing.(Housework doesn't understand that I hurt)

I move around haltingly through each chore, deciding just how much I can take. What can be put off...

By mid-morning, I am weary as though sleep never came the night before(sometimes...it doesn't)

I take some needed time to relax with favorite pastimes.

Reading, writing, time on the comp. Seems I am always researching this disease on the comp, learning and sharing all I can so I am informed and others will understand.

Nearing noon, there's hungry kids calling. Mostly the older one's fend for themselves during the day, but my youngest, my daughter, who's 8, still needs her mommy for lots of things. How do you explain to an 8 year old how exhausted and tired I constantly am? How do you tell her how bad I hurt without scaring her? ('Sorry Sarah....Mommy can't get down on the floor to play with you today.")

Afternoon brings heavy eyes and its time to take my daily nap. Lying down, book in hand, for reading is always a necessity before I rest(My relaxation), I try to rejuvinate a little. Dozing off to sleep, its never really 'restful', as the anxiety attacks always come then.

With every noise. Every sound. Doors, kids, phone, lawnmowers. Awakening me with a start. Heart pounding, insides shaking and short of breath.

Happens every time, but fear of becoming 'hooked' on my Xanax keeps me from taking more than the one I take at night, (even though my perscription is for 2.)

It's a 'catch 22'.

Arising again, bones still stiff, joints still swollen and still aches everywhere, I trudge through the rest of the afternoon.

There's always things to be picked up, counters to be wiped, laundry to be washed and folded. Pain be damned!! It must be done!! And believe me...folding those clothes is painful and tiring!

Some chores fall to the wayside regardless. I just don't have the energy to continue on.

Its amazing how things that get taken for granted become such agonizing tasks. Like brushing my own hair or my daughter's hair. Forget trying to braid my long hair...my arms don't have the strength to see me through the long braid it would take. A pony tail is a small effort!

Usually there's the ever present headaches and sharp chest pains that torment throughout the day. Not to mention the ever growing list of other aches and syndromes that follow me everywhere!

I go at a pace set by my disease. Mapped out by Lupus. It tells me when I can start and finish. What I can and can't do. But I know my limitations.

And then there's the worsening cognitive problems I am having. Think its hard remembering where your keys are? Try having to remember how to spell the word K E Y! Try having to remember quickly what a key is! Try writing things down and look back to realize you spelled words you know well, backwards and/or mixed up! Or even better when your words come out of your mouth mixed up! I call it my dyslexic talking! Its frustrating to a person who is never at a loss for words, especially a person who writes as I do, to struggle to remember the names of everyday items or words you always use! What good is a poet without her words?

I know we all do that...have those 'Now where did I put that?' moments...but I have them constantly throughout my days! Important papers are forever 'missing'...but not really...they aren't missing...I just can't remember where I put them only a little while before!!! 'Didn't I take that meat out to defrost for supper this morning?' Yes, I may have...but then again, I may have put it back thinking...'Now what is that doing out?' 'I could swear that appointment was today! Look!! I wrote it right here on the calen....oops...'

Yet....amazingly, I have my days where poems still flow from my mind, rapidly! Only NOW I know I better write my ideas down quickly before I completely forget them and they are lost deep somewhere in my Lupus mind.

Soon its time to prepare dinner. I struggle through the cutting, carving, slicing, peeling, mixing. My hands hurt so much through such tasks! A simple thing like mixing a meatloaf brings tears to my eyes. And NOT because of the onions I just painfully diced either. But from Raynauds Syndrome (another disease I get to enjoy thanks to Lupus)

The unbearable coldness of mixing that meat together turns my fingers patriotic. Red, white, then blue. Oh the pain that causes me!! The ice-cold numbing pain!! I keep the hot water running so I can keep warming them up under scorching hot water through the process! But the coldness in my hands is so severe, the water feels only warm to me. Its the same torture when I make meatballs. Now they are things I rarely make and only do so because my family loves them so much.

Cold irritates Raynauds the most. Even reaching into the freezer or grabbing a handful of ice causes instant pain!

A trip through the refrigerated and frozen sections of the supermarket is agony!

And let's not forget the fact that if I do go to the supermarket, I have to be driven there by my husband or my son as I am not allowed to drive due to medications and eye problems due to Sjogren's Syndrome(yes, yet another disease brought to you by Lupus!)

My eyes are so sensitve to lights! Headlights cause instant excruciating pain , headaches and the need to shield my eyes! (Guess I wouldn't make a safe driver if my eyes were tightly closed and my head were pounding).

So...after that painful trip to the supermarket that I had to be driven to and now have severe pain in my leg from walking through the store, due to nerve damge in my right one (Yup...you guessed it...from Lupus)the trip home is an event in itself becoming a painful ordeal dealing with oncoming headlights or streetlights! Hubby is always saying..."Its ok to look now."

Then I have the fun of putting all the cold and frozen stuff in the fridge and freezer! Why is it that I seem to be the only one in this house that can manage to make room for everything in there!?

Anyways...some people with Raynauds need to wear gloves for such tasks and trips to the store. I refuse to! Same as I refuse to wear hats and long sleeves no matter the season or temperature! The sun is now my enemy. It is the enemy of all Lupus patients. It causes the disease to 'flare up', or can cause severe blistering sunburns.

I am also supposed to wear sunscreen whenever I go out, all year long too. Do I?...NO. And YES, its stupid, I know, just as its stupid that I smoke!!

I think somewhere in my mind its a defiance agaist Lupus. A defiance that could kill me.

But...the smoking will end soon. It HAS to ("Quit or die." I was told by a doc recently) I had quit...for 10 years...then started again last year in the spring...(oh the irony...I just paused to light up!) Take that Lupus!

Back to my day...

By evening I can do no more. And yet somedays I push myself to do things that aren't even necessary yet! More stubbornness...more defiance...

Hubby is home now and we usually go off to our room. He watches TV, I read or write. We talk, we share, I cry, he holds me and on nights my battered body is 'up to it'...we love. (I won't even try to tell how badly I hurt after those nights....)

Evenings also bring the second medication ritual of the day...my night time dose. THAT daily reminder box (S M T W T F S) sits on my night stand next to my bed.

Later on, when my eyes can read no more from the burning, my hands can no longer write from the cramps and numbness, my mind can no longer think over the headache, I take yet 2 more pills...my bedtime dose. One for pain and the one to help me sleep through the night.

As I lie there waiting for sleep to come, every pain seems apparant and I find myself taking my 'mental inventory' of just how many things hurt!

Eventually, I do doze off. Many times with tears in my eyes as the pains are just too great by the end of the day.

The suffering too much.

I toss and turn in my sleep and my husband tells me I even moan in pain while I sleep.( I know it must be pain and not some wonderful dream cause I wouldn't even have the strength for that in my sleep!)

All too soon, morning comes and with it the vicious cycle begins again....

I rise slowly from my bed.

Bones are stiff, joints swollen and aches are everywhere.

They fight me every step of the way.

Just another day in the life the life of my disease....

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