Lupieliving

living with lupus, day by day, moment by moment

It is too hard to get up from bed because I have been tossing and turning all night from the pain, but I do.

It is too hard to walk because my muscles and joints are very stiff, but I do.

It is too hard to sit down on the toilet because I feel dizzy, but I do.

It is too hard to brush my teeth because my mouth hurts too much from multiple open canker sores, but I do. 

It is too hard to bend my head down to wash my face because of the pounding headache, but I do.

It is too hard to make myself coffee because I am too weak, but I do.

It is too hard to eat my toast because I am too nauseous, but I do.

It is too hard to take all my pills because my stomach hurts, but I do.

It is too hard to get dressed because my muscles ache, but I do.

It is too hard to wear my shoes because the nerves causes too much pain, but I do. 

It is too hard to go to my doctor’s appointment because walking is hard, but I do.

It is too hard to fill out all ththe medical forms because concentrating takes ten times the effort than it used to, but I do.

It is too hard to sit and wait for my appointment because of the numbness and tingling in my butt l, but I do.

It is too hard to explain and consult with the doctor because I cannot seem to convey all my symptoms, but I do.

It is too hard to stand and wait for the elevator and car back home because it feels like my head is spinning, but I do.

It is too hard to pick my son up after school because I feel like I have already climbed Mt. Everest, twice, but I do.

It is too hard to wait for my son outside his class because my legs feel like they are going to give out, but I do.

It is too hard to converse with other parents waiting for their kids because I feel like I’m so very sad inside, but I do.

It is too hard to carry my sons backpack because the joints in my fingers are in pain, but I do.

It is too hard for me to ask my son for some time to rest because he hasn’t seen me all day, but I do.

It is too hard for me to make dinner because my body feels like I’m carrying an extra 100 lbs, but I do.

It is too hard for me to hide how hard the day has been for me from my husband, but I do.

It is too hard for me to ask my husband to put our son to bed because I know he had a long day too, but I do.

It is too hard for me to change into my pajamas because my body has difficulty bending, but I do.

It is too hard for me to lie down to sleep because when the room gets silent and the light goes out, my pain gets louder, but I do. 

It is too hard for me to fall asleep because my muscles and bones feel like they are being kicked, punched, raked over, pinched, burned, electrocuted and pricked, but I do.

Then I wake up, even when it is too hard, and repeat the day, over and over again.  And this is a typically “good” day.  Many days, I have extreme fatigue, extreme pain or extreme illnesses thrown into the mix where I cannot even do the little things I set out to do.  When I have vomiting fits, or when I cannot even lift my head from fatigue, or where the pain is so intense that I’ll be coiled on the floor crying in pain. 

And I cry a lot, almost everyday.  Mostly alone.  I fight through each day, but sometimes, it all becomes too much.  This last week, I fell deep into depression and I felt too hopeless to even try to fight it out.  I don’t like staying in this unhappy place but my usual tricks to fuel me isn’t working.  Maybe a little more time…?!?! 



4 thoughts on “It is too hard

  1. Sun says:

    Linda I cannot begin to imagine what you are going through. You are a warrior my friend.

    I am amazed at your resilience, strength, and determination. It is simply amazing and awesome.

    As someone else wrote in your Facebook please know that everyone around you are rooting for you. I really hope I can do more than this for you… If there is please let me know. Speak again soon.

    Liked by 1 person

    1. Thank you, always such a comfort to me. From our 1L the night before the finals talk until now, always have the right words to make me smile.

      Like

  2. I’m sorry you are feeling hopeless. Please talk to your husband, loved ones, and doctor about how you are feeling. I’ve been there. Living with a chronic illness is hard. Having the support of loved ones is so important. I hope you feel better soon!

    Like

    1. Thank you — September has been a real struggle. Just starting to wiggle out of the dark place. Hate it there !!!

      Like

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