Throwback for ME Awareness

To acknowledge the last day of M.E. Awareness Month, I am reposting an excerpt from my diary from three years ago. I had only been sick for four or five months, I had no idea what was going on and felt for sure it would kill me.

Muscles pumped full of lead ~ No. Heavier. Plutonium. Filled with liquid hot metal until they might burst. Heavier than anyone can imagine, aching, ready to strain, buckle, seize up. Ready to sprain with the slightest stretch, no tone, no strength. Climbing stairs is climbing Mount Everest. Slurred words, room spinning, head aching, chest tightening, heart leaping, entire body shaking, vibrating. Chills. Bone-chills. Shivering, unable to talk, nose going to fall off, can’t breathe, feet going to fall off, ice water running up and down my spine, head fogged over with frost, scalp taut, ears infected with cold, ice water spine, ice water spine.

Then, fever heat. Body on fire. Feet going to explode from the pooled blood, eyes burning, brain swollen. Spine and neck blistered with white-hot embers, waiting for bed to burst into flames. And the sweats come. Sweat running down my chest, pooling in my belly button. Sweat behind my knees, my lower back, above my top lip, in rivulets down the sides of my nose, my hair and the base of my skull drenched. And I’m shaking, reaching for water. I don’t want to die. My palms are sweating and my throat is sore and I’m so thirsty, but can barely drink. I have to go to the bathroom, but don’t think I can make it. I have crawled to the bathroom with concrete blocks tied to my arms and legs, while someone is spinning the room around me and zapping me with electrical current and blowing a dense fog ~ more like a smoke ~ into my ears and up my nose and down my throat, so I can’t breathe and I can’t think.

It feels like what I imagine encephalitis must feel like. Meningitis. Botulism. Typhoid. Consumption. It feels malarial, paralytic, neurotoxic. I just keep thinking, I don’t want to die.

Two hours ago, I was chatting on the phone to my mother. I was throwing a ball for my dogs. Without warning, I have to go to bed. It’s like a huge finger is pressing down on me and all I can do is go to the ground. If I try to get up, the whole hand holds me down. Huge hands holding me down so that every movement takes more energy and effort than it ever should or ever has before. I watch someone run up stairs on tv and my eyes tear up with desire and jealousy. All I want is to be able to stand for a while, laugh without noticing because it’s not a rare occurrence, talk with friends without my throat turning into sandpaper and my back seizing up and having to go straight to bed from the exertion. All I want is to sleep. Deeply. Without nightmares. And sit without pain, walk without breathlessness, feel light again, like those hands aren’t holding me down, like I could skip or twirl. All I want is strength, stamina, health. To live life without the fear of repercussions. To live life. To not die.

January 1st, 2014

This day last year, I said 2012 was the worst year of my life. I also stated emphatically that 2013 would look very different. And it did. But not in a good way. In 2012, I was still working for 5 months of the year. I got to spend 11 days with my soul sister, E., when she visited from Dublin. I was able to run errands, go to the dog park, talk on the phone, and see friends for 9 months of 2012. Unfortunately, that all went away. Now, I can safely say 2013 was the worst year of my life.

The details are too difficult and depressing to describe or dwell on, but neither will I paint a silver lining around this dark life. It has been unspeakably difficult, what didn’t kill me did not make me stronger, and I’m not grateful for the lessons I have learned since being sick. I am a sadder, scared-er, weaker, lonelier person and I’d give anything to go back to the ignorance and energy of healthier days.

However, I am much more aware of things I used to take for granted and I am more thankful than I’ve ever been: For every bird, tree, and arc of sunshine. For every single dollar that I saved before the abrupt halt of income. For every time a snort of laughter escapes me; every day that my legs hold me; and every book, film, song that distracts me. For every time someone vents to me about their life or asks for my opinion or feels they can use my muscle-wasted shoulder to cry on. For every time someone braves the thin ice of chronic illness to ask what life is like for us or see how I am feeling or offer to help, knowing full well they risk breaking through to the deep despair beneath.

Most of all, I am thankful for my family. My father, mother, brothers, sister, in-laws, friends, husband and dogs. (Oh, husband and dogs! I am alive today because of you! And I fight for tomorrow because of you.) Each day that they are healthy brings me solace and I experience stark, unfettered joy at every festive Facebook photo of holiday parties, restaurant dinners and energy-filled activities. So, keep singing, fishing, working, exercising and traveling, everyone! And I will live vicariously… Just, please, promise me that you do it with an eyes-wide-open acknowledgement of how short and fragile our journey is on this earth.

Here is my 2013 wrap up:

January: Was sorely disappointed at the Chronic Fatigue Clinic; saw first private doctor, tried cranio-sacral therapy.
February: Not much except stool and saliva tests.
March: Was sorely disappointed at second rheumatologist visit; saw second sleep doctor; had the 4 best days between September, 2012 and now; Zyrtec trial.
April: Got teeth cleaned; started seeing wonderful physical therapist; started the awful process of getting an oral appliance for sleep apnea which still hasn’t happened, almost 9 months later; Seriphos trial; started Chinese herbs.
May: New nephew R. was born; saw dermatologist; phophatidylserine trial; Nasonex trial; tried Tizanidine; turned 40; dear friend E.S. died far too young.
June: My mother and D. visited; saw cardiologist; tried valarian; started Unisom; Gabapentin trial; added rice back to my diet.
July: My father visited; stopped weekly therapy; stopped phone calls for the most part; stopped Chinese herbs.
August: Stopped eating soy, citrus; added lentils, garbanzo beans; tried Trazodone; stopped all vitamins and supplements; J. and Z. gave me a scooter: my ticket to some freedom.
September: My mother and brother, T. visited; abdominal pain started; husband’s family visited; celebrated 15th anniversary.
October: Brother A. visited; saw ENT doctor; saw “environmental” doctor; saw neurologist; had bad reaction to Unisom; tried Xanax; Zetonna trial; had hellish 2-week repercussions to autonomic testing.
November: Tried low-histamine diet for 5 weeks; methylation pathway, mycotoxin and adrenal tests; started vitamins again and Metagenics shakes; tried iv fluids and caused anaphylactoid reaction; another zyrtec trial; saw allergist; steps per day decreased below 700 and haven’t come back up.
December: New nephew G. was born; Christmas with sister; saw ophthalmologist; started juicing; tried Ativan.

Like last year, there were births, deaths, doctors, drugs, symptoms, setbacks and disappointments. And, like last year, what I see when I look at this is how lucky I am to have family that would travel across the city, country or ocean to visit me in my home and offer love and support, without judgement.

Happy new year to you all. 2014, please look different than 2013 ~ only in a good way.

Hubby sweeping in the new year, a family tradition. :)

Hubby sweeping in the new year, a family tradition. 🙂

Remember the little moments,

like this,

that were good.

Cheers.

~James Gandolfini in The Sopranos R.I.P.