Message to the doubters (warning: strong language).

I’m happy to be alive today. I’m happy to not be in a hospital today. I’m happy to have the will to pull myself upright after about 24 hours of being horizontal and get this off my chest.

To anyone who thinks myalgic encephalomyelitis doesn’t exist because the TESTS don’t show anything wrong or some asshole somewhere couldn’t figure out what to call the thing that was happening to histrionic overworked ladies who couldn’t handle the pressures of modern society and decided it should be coined chronic fatigue syndrome, which would for evermore stigmatize the patients…. Fuck you.

Until you have what I have and until you go through what I go through, how dare you pass judgement or think you know better. What I have is killing me. It is ruining all quality of life and taking my family down with it. I’m not tired, I’m not in pain, I’m not depressed… I don’t have the words to describe this disease. I can say, with no emotion and complete clarity of mind, that I don’t want to live like this. That I’d rather die. Does that mean that I’m clinically depressed and suicidal? I don’t think so. It simply means that there might come a time in the future when I have to decide that I am either okay living this new way ~ very little moving, very few activities, very little interaction with people, probably not leaving my house much, probably never having a job that isn’t from home with flexible hours ~ and be happy with it, or decide that I can’t do it.

I was once very full of life. I was once energetic to the point of being annoying. I made my living in a very physical career with a dizzying amount of multitasking, responsibility, and challenge. So, how do I accept my new role? I don’t want to accept it if it means constant pain and management of symptoms. That’s not what I’m here for. I don’t know how to get there.

I have 100 symptoms, you’d laugh if I listed them, but, out of all of them, there is one problem that is very distinct, completely life-altering, and only seems to be talked about in the context of myalgic encephalomyelitis. If I have a “good” day and forget that I am sick and must strictly manage my energy and activity levels, I pay for it the next day with what feels like death. This is so real, so dire, so misunderstood.

Yesterday, as the day progressed, I became more and more incapacitated, immobile, had crushing pain and felt completely unstable. I am not exaggerating when I say my body felt like I had been in a terrible car crash. I was in pain from head to toe. Muscles I didn’t know existed were in pain. Internal muscles were in pain. My diaphragm was in pain, making my breathing heavy. I could barely turn my neck. This isn’t normal pain, though. This is inflamed, swollen, tender, red, throbbing pain. As if every muscle is infected. You touch me and I wince; I move and I groan. There were silent tears running down my face all day. My headache couldn’t be touched by over-the-counter pain meds, I continuously felt dizzy and feverish and faint. I checked my blood sugar and my blood pressure. I told my husband, I don’t know what’s going on, but we may have to go to a hospital this time. I hate hospitals, so that’s saying a lot. Every time I stood up, my heart raced. That’s a scary feeling so I google “tachycardia upon standing” and it comes up with “Postural Orthostatic Tachycardia Syndrome” (POTS) and, lo and behold, it is related to and often found in conjunction with chronic fatigue syndrome.

So the pain is fibromyalgia and the dizzines is low blood pressure and hypovolemia and the fainting is vasovagal syncope and the racing heart is POTS… I have reactive hypoglycemia, low blood pressure, autoimmune angioedema, anaphylaxis that nobody could ever find the cause of, asthma, constant sore throat, temperature problems (understatement of the century), no steel-trap brain anymore, IBS issues, hellish sleep problems and sweats….. AND NOBODY CAN GIVE ME A FUCKING DIAGNOSIS? Just based on the blood pressure/volume drops and the syncope that has landed me in the ER, somebody should be looking at an autonomic nervous system problem. Right?? Who does that? Cardiologist? Neurologist? I don’t even know.

But, you know what they’ll tell me? Eat salt, drink water, stand up slowly. I know because I can’t find a single doctor that wants to get to the root cause. And, honestly, I’m way more concerned that my body won’t allow me to go to the doctor and the dog park or else I’ll spend at least a day or two in crushing, indescribable, terrifying, paralysing pain.

Gratitude? I’m grateful that I’m alive and angry right now. The alternatives are no fun.

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12 thoughts on “Message to the doubters (warning: strong language).

  1. Curiosity says:

    You’ve described this very well. I can definitely relate to what you’re saying, here and in your other posts. I haven’t been able to read them all in detail today, but I certainly understand.

    I eat the not-fun-at-all diet too. 🙂 Though I’m branching out a little again now from time to time. I took a lot time to connect my sweats to overexertion. Same with the “fuzzy” feeling I get along my spine or up into my head when try to do too much mental stuff for too long (reading, computer, etc.). Seems so obvious in retrospect…

    And of course, I can relate to the core of anger at anyone who could dare to imply that this illness is somehow illegitimate. I try to console myself in how much they’re going to look like raving idiots when how serious it is finally gets recognized. I wouldn’t wish this illness on anybody. But every now and then, I’m tempted to wish it on them.

    Liked by 1 person

  2. […] we’ll walk around the block and have a lengthy, animated discussion …and then he can watch what happens the next day. He’ll be able to see how I curl up in a ball weeping from pain, unable to […]

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  3. […] This time last year, I COULD. NOT. GET. WARM. I rarely progress to the point of “bricked” anymore: where I hit a wall and I am grey, ashen, can’t move, can’t speak, […]

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  4. […] a host of other symptoms. Six months later, I had to leave my job and, three months after that, I became housebound. Symptoms have shifted and changed: Pain and sleep dysfunction became my biggest concern, the […]

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  5. Reblogged this on Rag and Bone Shop of the Heart and commented:

    Throw back Thursday. 3 years ago I was having an okay, if emotional, day. I met with my bosses to let them know I couldn’t go back to work, browsed a few shops next door for cards and then went to the dog park with my boys. I remember what I was wearing that day and the last photo I took that last time I went to the park: I was backlit by the sun, my shadow on the pebbles in the water as my dogs splashed around. I was listening to Radiohead and was so grateful for the warmth that day, so grateful for the energy to do these things. Since that day I have been housebound. It crippled me. It knocked me down so far, I never quite got up again. I haven’t met friends again, browsed shops or gone to the dog park alone again…

    Reading this blog post back makes me so sad. I really couldn’t believe that something this life-altering could happen to a person without any explanation or good medical advice. I couldn’t fathom living one more day, let alone a lifetime, with the pain and sickness. I wanted to die and, even though I disguised it with anger in this post, I got a lot of concerned messages from my family and back-peddled quickly, so they wouldn’t worry: “I’m okay. I’m okay. I’m a fighter…”

    But the truth is I wanted to die every day over the next 16 months of relentless symptoms and the only thing that got me through was my mother and a few friends who were able to hear my desperation. Many people couldn’t hear it, it was too painful for them. But a few listened and didn’t say, “No, that’s not an option. Stop talking that way.” A few understood and reassured me that it was a totally rational response to my situation. And *for me* that made all the difference. To talk about it, to know I wouldn’t be alone with those thoughts or, if the time came, that end game. “It’s an option, but not an option right now,” my friend said. “Put it in your back pocket and keep it there. You need to try everything before you take it out and look at it again.” She saved me that day.

    September is Suicide Prevention Awareness Month. Reach out. Whether you are suffering or you suspect someone is, reach out.

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  6. kneillbc says:

    Liz, Im so sorry yourehaving a shitty time right now. Me too. People are often surprised when I say, “Well, or the other option.” I don’t say it to strangers, but to friends I do. Anybody who has a chronic illness as severely as we do has considered the suicide option. If they say they haven’t they’re either lying or in denial. It’s completely normal to, at times, think ‘I cant live like this.’ I love what your friend said, that it’s an option, but not for today. I am still convinced that I can have some recovery, enough to at least be able to have friends over for coffee, and to do a bit of painting. Know that you arent alone, and that for today, the fight is worth it.
    Hugs,
    Karen.

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  7. Nick Boehm says:

    You have to kill the microbes in your body. You got contaminated. Get your blood work done with a dark field microscope so you can see whats swimming in your blood. I would use thirty drops of MMS in a hot bath every night for the next six months. Then mix MMS with DMSO and rub it in on the difficult areas. When you get brave do and enema with MMS ten drops and some DMSO. The bugs should start running out of you. If you eyes sting for two days they are coming out of your tears. Rashes, burning urine are just good sign they are dying. No sugar, no sugar. Cleanse, Cleanse, Cleanse and Research, Research and Research. Google is your best friend right now. Good Luck, N. I won’t even comment on whats in vaccines…

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  8. Nick Boehm says:

    Oh, by the way this is just my opinion. What I would use for myself. I am not prescribing in anyway. You must do the research and figure out what works for you. This has been my path and it worked. N

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  9. Jennifer Thompson says:

    You should consider seeking a doctor such as Dr. Betsy Hendricks in Conway Arkansas, or other alternative doctors who tests for heavy metals, oxidative stress, etc. Here is an example of things implemented that help:  Methyl-B12 and other methylation therapies
     vitamins and minerals
     Transdermal glutathione
     Casein-free, gluten-free diet
     Chelation (removal of toxic metals)
     Metallothionein-Promotion therapy
     N-Acetylcysteine and alpha-lipoic acid  Therapies to combat yeast overgrowth  Antibacterials and antifungals
     Decoppering protocols
     Amino acid supplements
     Digestive enzymes
     Secretin
     Hyperbaric oxygen therapy

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  10. cathypogo says:

    Make sure one of those heavy metals tests includes Gadolinium, as Jennifer suggested! Gadolinium is the POISON that is in MRI contrast made by Bayer, sealed into our bodies by GE machine magnets! I have high amounts of this in me after 8 MRis with Magnevist and one with MultiHance! If you have EVER had an MRI with contrast, THIS is what the problem is and themore people who know the easier it will be to get a diagnosis. It is NOT only happening in this with kidney disease either, nor from the AMOUNT of MRI’s you get, I know of this in people who have only had one MRI with contrast!
    Hit me up on FB and I will let you know what tests to get, doctors order them and labs are done at Mayo medical labs, I tested POSITIVE twice so far! and have ahd none biopsies, it is IN MY SKIN and causing FIBROSIS. Check back your entire medical history and figure out how many you have had!
    check out http://www.gadoliniumtoxicity.com
    Cathy

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  11. Tina says:

    I love your story and love how open you are! I know exactly what you are going through. I was diagnosed with pots 3 years ago and also have severe pelvic congestion syndrome, nutcracker syndrome, severe spine issues, mid dermal elastylosis skin disease, pitting edema, dermatitis, hyperlipasemia, neuropathy ,cyclical vomiting syndrome, 2 types of kidney disease, migraines, slipped disks in my spine and a 2005 kidney tumor that came back unknown at 26 years old. I am rotting in my bed because I don’t have enough money to please kaiser and make them care to help or believe me. Whatever the underlining condition is, is killing me… I fucking hate drs and kaiser!!!!!!

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    • cathypogo says:

      Tina you might want to read my post about gadolinium toxicity if you have ever had an MRI with Gadolinium contrast, MANY are making the connection! Are you on FB? I am under my own name, Catherine Nichols Pogorzelski

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