Tired

I wake up to throbbing, burning pain.  I’m stiff when I wake up; every joint feels swollen, every limb feels made of lead, and I’m not always steady on my feet.  I fumble for my cane, put on my bifocals, grab my water bottle and cell phone.  I try to carry as much as I can when I head upstairs since I don’t care to make multiple trips.  Heading up the stairs, I wonder if my legs will obey me and if I can avoid near-syncope.  One of my greatest fears is fainting while I’m on the staircase.  I lose my footing on the stairs often enough as it is. . .

I coffee up, trying to chase away the mental cobwebs that are never fully gone.  I take muscle relaxants, arthritis pills, pain meds.  I chase my three young children around the house, cleaning up their various shenanigans.  I wince every time I lift my 2-year-old onto the changing table.  I can’t lift my arms above my head without excruciating pain.  Come to think of it, I can’t do much of anything without wanting to cry.

I have fibromyalgia and a suspected autoimmune disease.  I’m weak, I tire easily, I’m light/sun-sensitive, and I am always in pain.  If I had to pinpoint its origin, it’s as though there’s a layer between muscle and bone, and that layer constantly feels like it’s on fire.

Sometimes it feels as though people don’t believe my pain exists.  Maybe it’s because they can’t see the problem, or that they just can’t understand the kind of chronic pain I have.  Truth is, sometimes I think I’m just crazy.  If I hadn’t seen the blood test results myself, many times, I might wonder too if what I have is really real.  I’m waiting on more blood tests to come back to see if they can pinpoint what makes me like this.

I fight so hard, take so many measures, take so many pills, just to feel the tiniest bit of relief.  When I do feel better, I often break down sobbing because it’s depressing to fight this hard to still feel so shitty, and think that that’s the best I can hope for most days.  There are more things I can’t do than I can, especially with my kids, and it makes me feel broken.  I feel broken, disabled, less than, unfixable.  I might feel better if I had a diagnosis, if I could point at something and say, “THIS is what’s wrong with me.”  Not knowing makes things worse.

I worry that I’m a burden: to my husband, for having someone so broken to take care of, that I can’t do more; to my children, like I’m cheating them out of having the kind of mother they deserve; even to my doctors, for being so difficult to diagnose.

I’ve seen a neurologist, who felt that my neurological symptoms are secondary to an underlying condition.  I’ve been to a rheumatologist, who believes my underlying condition is most probably an autoimmune disease, but doesn’t know which one.  My urologist, gynecologist, dermatologist, ophthalmologist, internist, and primary feel the same way.  Now, I’ve been referred to another rheumatologist.  If he comes to a dead-end with me too, I’ll be referred out of state.

For the most part, they’ve all said that one of two things could happen: I could get miraculously better, which they all agree is unlikely, or I could get worse enough for something to show up in my blood tests.  This leaves me praying every day that I either get the most unlikely miracle of good health, or that I get worse enough and raise the right antibodies to nail down which disease I have.  In the meantime, I bear the burden of depression, anxiety, panic attacks, insomnia, and constant, disabling, debilitating pain.

I know there are people who have conditions worse than mine, and I don’t want to take anything away from their own ordeals.  I write this because I need an outlet, because people have asked me to share, because it’s one of the only things I can still do.

Many of you are tired of hearing me complain.  Trust me when I say I’m more tired of it than you are.

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  1. {{{{{{{{{{{{{HUGA}}}}}}}}}}}}}
    I am so sorry that you are going through this. I have had to learn to live through chronic pain in my past. I pray that you will be given answers and relief.

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