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.
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.
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.
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.