This is what you need to know about my illness

Since my diagnosis a couple months ago, I’ve been thinking a lot about what I would most want people in my life to understand about my toxic mold illness. Throughout my life I’ve always been “the sick one,” and I suspect a lot of people are going to identify with that label. That’s meant I’ve heard more than my share of the things people say when they really can’t understand what’s going on.

It’s not their fault.

If I had been missing a limb most of my life, most of the people around me could have totally understood in some small way. “Damn, Sher. It sucks that you don’t have a right arm. I can look at you and immediately put myself in your position and empathize about what that might be like.”

This toxic mold illness is a silent monster and so I get that it’s harder for people to understand.

Today I am talking directly to them… the people who are okay and healthy and can’t figure out what’s really going on with me.

Dear Darlings,

First of all, I’m not mad. I have no right to be. How can you understand how I’m really feeling when I look pretty “normal” and the words I use to describe what’s happening are so vague?  If you are important enough to me that I care what you think, it’s my responsibility to bring you into this with me, show you what it feels like, and teach you how best to help me.

That’s what I’m doing now. If after reading this you have questions, I’m happy to answer them. You matter to me and I know I matter to you. Talking about this makes sense, and I love that you are willing to do that with me.

This is what it feels like to have a toxic mold illness. | www.ToxicMoldIllness.com

I am fatigued.

I’m not “tired, ” nor am I “sleepy.” When you say things like, “you’re tired again,” or, “you should go to bed early and get more rest,” it’s hurtful. That implies there is some action I could easily take to resolve how I’m feeling and that I wasn’t even intelligent enough to figure it out until you mentioned it.

Imagine that you are lying on the floor of your bedroom when someone walks in and finds you there. The person who finds you mistakenly believes you are dead, and so they call a long, dark van that scoops you up and takes you to the morgue. Although you’re alive in your body, you can’t cry out to let someone know you’re not dead.

Lying on a cold, steel table, you realize that a tube has just been inserted into the bottom of your foot, a machine has been turned on, and you can very slowly feel the blood leaving your body. You feel heavy and empty and even if you wanted to run away you no longer have the energy to sit up. You’re dying now, but instead of a dramatic, lightening bolt experience, it’s slow and quiet and you have to lie there alone as it happens, unable to stop it.

THAT is what my fatigue feels like. Every day. It’s important you hear that. That is my life every single day. It never goes away. I am always on the table and the silent embalmer is always doing his job. It is, by far, the worst part of my illness.

I am always incredibly heavy and weighted down, and whatever it is inside me that makes me, “Me,” is being emptied. I have to think about any steps I want or need to take and decide whether the fatigue I’m going to experience is worth what is on the other end. I don’t have to do anything to cause it. It’s just always there. Rest doesn’t help. Sleep doesn’t help. And, if you tell me that I simply need to get up and exercise in order to feel better, you should know that I can’t.

Of course I want to. Of course I know I need to. I can’t. I physically cannot take one more step than is necessary because once I do, I will not recover and my body will not restore.  I will remain diminished. When you go for a walk your body will restore. Mine will not.

The fatigue dictates my life, what I can do, what I will do, and how I respond to the people in my life. I often think at night that if my house were to go up in flames I would pray that either adrenalin would kick in or someone would carry me out because I would be unable to make it to safety on my own.

The fatigue is the thing that makes me think I have no reason to live sometimes.

I’m in pain.

It doesn’t stop. Sometimes it’s a livable pain and sometimes it’s a pain that makes me think I would do anything to make it stop. If you’ve ever had the honest-to-God, high-fever, freezing-shaking, flu… you understand what my pain feels like. It’s deep in my muscles and I can’t get relief for more than a little while.

I’m stiff.

It feels like someone has put a form of cement in my joints. Nothing bends easily. Sometimes my joints are sore to the touch, and other times it’s all internal. Driving is a challenge because it’s so hard to turn my neck to look for oncoming traffic. Stairs are a nightmare. Getting up and down from chairs is awful.

I forget things.

I will repeat myself and I will ask you to repeat yourself. I’m sorry. I know it’s a pain in the ass to try and have a conversation with me that is remotely enjoyable, but I’m trying. Please don’t get frustrated with me and remind me that you have already told me something three times.

I do weird shit.

If you see me clawing at my arms until they bleed, it’s because the nerve endings can make them feel like fire ants are walking on my bone. It’s an itch that is below the surface and it hurts.

Things that smell normal to you can smell foul to me. I may ask that you not eat that delicious sausage while I’m in the room because I’m made nauseous by the aroma. I may tell you I smell something rotten in the house, even though no one can smell it but me.

I might ask that you read things for me because the letters jump around and my eyesight is deteriorating so rapidly that I can’t see it. I also have difficulty processing and retaining information, so having you read it and explain it helps me.

I may be nauseous a lot because I have taken so much Ibuprofen and Tylenol that I have destroyed my stomach lining. Yes, I know a piece of bread is bad for me. I’m going to eat it anyway because it’s the only thing bland enough going down and soft enough coming up.

I fall down. I run into things.

I have bruises and bumps because I can simply walk across the floor and injure myself. I bob and weave like I’m drunk sometimes and parts of my body “go to sleep” so that I may not be able to tell where I’m planting my foot or where my arm is in relation to a piece of furniture. If you’ve had a limb fall asleep, you’ve experienced for a few moments what I feel virtually every day.

Sometimes it’s one spot on one leg. Sometimes it’s both arms. Sometimes it’s one side of my face. It doesn’t go away when I shake it or move it around, the way yours does. It comes on when it wants and it goes when it wants. The fear of it happening makes me cautious about being in public places alone.

I fake it.

That’s right. I fake the hell out of feeling okay very, VERY often. I smile. I go. I do the things I know need to be done. You ask how I am and I say fine. I pick up the little ones and hug them. I sit on the floor and play. I go shopping with you. I clean the house. I cook. I try to be who I want to be and who I know you want me to be.

But, when it’s all over and I manage to make it to the shower, I sob. I can cry in the shower because it’s a private place where no one can see me, and so I just break down and get it all out. I beg God and the universe and any kind of voodoo I can imagine to either help me or kill me because I know I can’t continue like this.

I feel unlovable.

Because I can’t do the things I want to do with you and for you, I find myself impossible to love. I don’t look like I once did. I don’t laugh as much as I once did. I groan and I moan and I’m no fun. I wouldn’t blame you for feeling like you just can’t muster up any affection for me. But, when you remind me that you’re in my life no matter what kind of life it is right now, there is no greater gift you give me. When I feel loved and supported and encouraged by you, I start to believe that maybe there IS hope… that maybe I CAN get better. Thank you for those moments. They sustain me.

I am embarrassed.

I walk like a very old person who has been bent and worn down by time and I pant like a wild animal when I take more than a few steps. My skin has a pallor you would probably see most often in hospice patients, my eyes are often yellowed and dull and my hair is falling out. I wear sweats more than anyone should ever wear sweats and my perfume is BenGay. It’s humiliating.

I know this is scary for you.

You care about me and facing the fact that something is wrong with me makes you feel like I am not a super-human who will never die. I’m breakable. I’m vulnerable. And, you don’t want that to be true. It’s okay. I’m scared, too. I know that my body is dying and no one believes me. I’m not being dramatic. I can feel it happening. I’m always afraid that I’m very near the end.

Things you say have the power to break my spirit.

Well, at least it’s not cancer.

You should go gluten-free.

Diffuse essential oils and you’ll be healed.

Take more vitamins.

Drink more water.

My co-worker has Fibromyalgia and she’s fine.

My co-worker has Chronic Fatigue Syndrome and she’s an attention-seeker.

Doctors are worthless.

You should accept this and learn to live with it.

You should force yourself to do things.

You should see a psychiatrist.

You are depressed and that’s why you feel so bad.

I know just how you feel because I’m tired to, but I have things I have to do so I get up and go do them.

When you say things like that to me, you may as well look me straight in the face and slap me. It would hurt less. The idea that someone I care about doesn’t believe me is horrible. It’s the same as calling me a liar. It’s the same as saying you don’t respect me because I’m not an honorable person.

If after reading this you aren’t convinced and you just can’t bring yourself to believe me, then be kind enough to at least be quiet about it. You don’t have to tell me. I know.

But, if you’ve read this and you can sit for a moment and imagine yourself in my place, you’ve given me a gift and I adore you for it. You can help me not by asking how I am, but by assuming I’m not okay and acting accordingly. Make my steps fewer and my journey easier where you are able, make me laugh when you can, and remind me that I’m worth loving. That’s all.

That’s all I need.

Love,

Sher/Mom/Meemaw

24 thoughts on “This is what you need to know about my illness”

  1. Thank you, for saying it so well. Especially, feeling like the life is being sucked out of me, and that I feel like I am dying. So sorry to hear that anyone else (you), feel this way also.

      1. Thank you for sharing your story, and all the information. God Bless you ! I, have been surviving for years now, with a diagnosis of Fibro. & S’jorgrn’s syndrome & several other illnesses.. My, Ryumy, says, the S’jorgrn’s, is about the same, as having, Lupus. My, daughter, who’s only in her thirties, has been diagnosed with, Lupus, S’jorgrn’s, along with a list of other daises that, causes her, to stay sick all the time, as well. Most days, I’m unable to get up & do much of anything, & she, pushes to do the things that must be done, because, she also has an 8 yr. old son and, he’s her main reason to keep fighting, to move.. All the things you have written about, (your, life), also describes , my life. Everyday, I, get worse & worse. Many days, (most of my days) I, honestly believe I’m dying, & many days, I, almost wish, I, would. To, have whatever, is happening to me, to my very being, isn’t living, but, existing. The, CFS, the Chronic pain, numbness, stiffness, forgetfulness, as well as feeling, completely, hopeless, helpless & useless. There are days, I, know that I’m dying, & some that I, almost wish I would ! I’m blessed, in the fact that my family, tries their best to understand what I’m going through, (although, I, never, want them to gain complete understanding, because that would mean that they all are fighting to live with the same thing’s, as, I do. Anyway, I’m loosing my thought pattern (so, I’m having a hard time, finishing my comments.) If, there’s even a remote possibility, that, I, might be suffering from, some type of mold, & not from all the other diseases I’ve been told I have, then, I, would be most grateful, for any info. you can offer, on how, I, should go about demanding further test, to find out. Like, you wrote, my, life, depends on getting answers, & the correct ones. For, both myself & my daughter’s (I, have 2, that have been diagnosed with, Fibro. and all these other illness. THANK YOU SO MUCH, FOR DOING ALL YOU CAN TO HELP OTHERS, FIND OUT THE TRUTH.
        Sue McClanahan Dentici.. P.S. I, hope what I’ve written, makes sense.. My, thoughts strayed while I was writing, & I’m not sure, I, even stayed on topic.

  2. Thank You for posting this I was diagnosed with Fibromyalgia a few years back but the more I read about the mycotoxin and toxic mold illness I have began to wonder. I have more of the symptoms for it than Fibromyalgia. I have said many many times I just wish someone would understand how I feel. Yes it is hurtful when someone looks at you and says ” you just need to get up and move “a body in motion stays in motion”, but when it hurts to move that is the last thing you want to do.

    1. Would chemo or radiation help like the cancer patients ? I am so sorry u and Cathy Brown have to go through this. I pray for u both. I’m around Cathy allot so I see what yall go through. U both r my heroes bc u endure so much yet keep on keeping on

    2. My hope is that you’ll get tested, Debbie. If it’s not toxic mold, then at least you’ll know. Thinking of you. xo

    1. I’m living in new construction, but I’m not really convinced there is no hidden mold here. I’m researching that aspect of that now.

  3. You did a great job on this, thanks for sharing. Sounds all too familiar. I completely understand the drop dead fatigue and the weighed down feeling. It’s one of those things that someone could not possibly understand unless they have personally been through it themselves. How do you you get tested for toxic mold? Is this something typically covered by insurance? I have Lyme and at least 5 coinfections. That’s when things start to get get tricky. But I’ve always suspected something else was involved.

    XOXO, peace, love, and happiness to come

    1. Thank you, Courtney. My test was via Realtime Lab. Click “Get Tested” at the top of this site and the info is all there. xo

  4. Thank you for being so honest and raw with your writings. When I read this, it made me feel like I AM NOT CRAZY nor am I alone. You sharing your story has given me the will power to keep trying to find an answer to why I feel the way I do. Thank you Sher! Thank you for keeping it real!

  5. Sometimes I hurt so bad and am so exhausted that I feel like I have to force myself to breath. I sorry there are others that are also in so much pain, but I am grateful to have people who understand and accept! So glad I found your website!!

  6. Thank you Sher. I understand completely what you are saying. I do not experience yet the severe pain although I do have times when it is worse, nor do I experience the nausea or disorientation but I completely identify with the heaviness and fatigue that is hard to shake and I have chronic sinus issues that seem always on the verge of flaring up. I manage to keep my true infections to a minimum now with nasal rinses, being mindful of what I eat and essential oils, but I never feel like I am “over” it. My mother was diagnosed with CFC and fibromalgia but I have resisted being diagnosed as such even though I have often considered myself as having the same thing. She also has been diagnosed with depression and I tend that way as well, but again I manage it the best I can with nutrition and natural alternatives to the medications. Fatigue has been my companion since I was an adolescent I am now nearing 40 and you are right about sleep It doesn’t matter if I sleep for 5 hours or 10 I don’t feel good when I wake up and I have to literally force myself out of bed. A day time nap will turn me into a brick stuck on my bed for hours, but sometimes I just can’t not take that nap. Sometimes exercise helps sometimes and sometimes exercise makes me feel like I’ve been run over by a bus. I believe that my root problem is then same as yours only not yet as severe. I intend to get tested as soon as I can. The people around me are supportive and I don’t often encounter the hurtful things said to me, but I do wonder sometimes if those aren’t’ the things they are thinking. By far the most critical voice is the voice in my head. I sometimes can’t help but feel lazy and worthless, especially when I end up relying on my 11 year old daughter to take care of things because I just can’t get out of bed. I wish you well on your journey and wholeness. Here is to all of us finding health and happiness again.

  7. This is so me. The countdown is on, 4 days until I see the mold doctor. I’m trying to hold on but I’m so sick now. I love what you wrote above, it’s me. Because of you I started looking down this avenue of mold and I thank you so very much. No one else knew what to do anymore for me. You are doing a wonderful service for all of us. Please don’t stop.

  8. OMG!!! I say through my tears, as I read your letter, I want to sent this letter to everyone I know except the love of my life!!! I was a very healthy person until 13 years ago, I was diagnosed with FM and CFS, but I too felt as you did!!! I still am dying bit by bit and wish daily that it would hurry and get it over with, as I am at my breaking point!!!! I’m not suicidal but I just can’t go on like this!!! My Doctors know how I feel but are at a loss as to how to help me anymore!!! I also have put on close to 150lbs since my diagnosis which now leaves me with obesity as well. I feel like i am 90 years old and I can barely move!! So along with all the hurtful statements you listed (I too, have had to hear), I get the obesity statements as well. – “lose wieght maybe you’ll get better”, or “Hey! remember when you were skinny, you weren’t sick then, what does that tell you!” I can so relate and if I wrote my own letter it would be very much the same as yours!!!! Thanks for sharing, and I feel your pain!! Yuanitta

  9. After seeing something of yours on Facebook tonight for the first time, I read (or rather I stumbled through reading) part of the article to my wonderful husband. He wants me to call my doctor Monday and see what I need to do tp get tested. A year ago I cried in a rhumatologist’S office telling him that I hurt and my legs were going numb and it hurt. His response, “you act like you are dieing, it is only fibromyalgia. You should be glad that the tests for lupus and other tests came back negative. Fibromyalgia doesn’t get worse, it won’t kill you.” But the thing is, I have been told for years it is finromyalgia… That hasn’t changed, but the pain has gotten worse, more things seem to go wrong with my body all the time. I have fallen so many times that my primary doctor gave me a permanent disabled tag for my car at 37. He knows something is wrong. He has me going to other specialists for individual issues, but it seems nothing really helps. And like others, this letter sounds like what I would write….

    Thank you,
    Deb

  10. I’ve been sick for a year now, and the only explanation I’ve ever been given is fibromyalgia. Doctors that I’ve seen are completely baffled., as if nothing is wrong with me, even though I can’t even walk up the street. I walk like 90 your old man. My question is, what was the source of mold contamination that Miss Bailey encountered to give her this disease? I only ask because I’m trying to figure out my own situation.

  11. Your article now has me baffled. Can I hope one more time? I had given up. I am 68 and have had fibromyalgia and now chronic conditions. But the same comments you made I have had since I was 43 years old. It is a living nightmare, but like the others, I want to live. This has sucked the life out of me and cheated me of many good years. I too have felt 90 years old. My friends awed at that and commented they have never felt better. And again I wonder why I can’t. Now they pity me. I don’t know which has been worse for me. The pity, or all of the suggestions of losing weight, exercise, diet, more sleep at night, try something to take your mind off of it, get a hobby. And all you mentioned, it was like me talking. I have for many, many years had mind fog. Anxiety has set in. Pain in joints. You name it, I feel it. And again, to the “T” of everything you mentioned. I do feel myself slipping away. I hate all of this. And it’s not because I’m old. I have felt this way especially since my 40’s. I just about gave up. I am praying there is something that can be treated and I can renew a bit of the youth I lost. How I would love to walk the neighborhood, ride a bike. I have fallen so much I have a bad leg. But just maybe it would be better. Oh gosh, I’m getting tested! Thank you for sharing. I was almost convinced I was mentally thinking these things…..almost. I have hope. Thank you.

    1. Don’t ever give up Christine. Two years ago, I really thought I was going to die. My child and I were so sick. I’m feeling great today. It was two years of absolute Hell. But you can get through it.

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