Posted by: E (The Third Glance) | February 1, 2012

Yep, it’s mono…

Yep, it’s mono…

I know, lovely, right? My body hates me. And I officially have mono. On the plus side this is happening now, and not in 3 months when I’m preparing for my comprehensive exams. On the minus side, there’s never a good time for this to happen. And no, I’m not feeling better. If anything I’m feeling worse, because I’ve been pushing myself to get these things done. I submitted my travel grant yesterday, and have a talk tomorrow at 2. Then I can really rest. And until then, I do battle. Hopefully I don’t completely crash and burn.

When I’m sick, my brain doesn’t work the way it should. All of the filters I’ve created over the years to help deal with too much sensory input and conversations and everything, basically break down. I lose all of my coping mechanisms. My ability to tolerate *everything* goes away. I have to wear very specific clothes (even more so than usual), and every little sound is an absolute assault. Every time anything touches my skin it goes crazy. I have a major need for deep compression. Like a human hug, except anything but that. I wish I had a hug machine or something. I don’t have anything that can provide the deep pressure I need. My whole body’s systems are out of whack and it’s so confusing. And the worst part is that even stimming can be painful and confusing and it doesn’t calm me down. Of course, when I get sick, it doesn’t usually go to this level. Usually my filters remain in some condition, and it’s not so extreme. I’m usually better able to function. But right now I’m barely able to do anything.

By far the worst thing for me, though, is that in addition to my appetite disappearing, I have lost all of the tolerance I have built up over the years to various foods that make me sensory-unhappy. I’ve managed to, as I grew older, devise ways to be able to eat foods I could never have tolerated as a child. I don’t love doing it, but I can, and that’s the important thing, because it adds variety to my diet, and allows me to branch out and eat things that taste good but that I can’t usually deal with the textures of. But right now, I’ve lost that ability completely. No appetite and no ability to force myself to eat, because the textures are so awful and just bad. I’ve even lost the ability to eat things I usually like, because textures and food are just so unhappy. Over the course of the last 2 weeks, I have lost 8 pounds. I currently weigh 90 pounds, and I’m 5’3. That is in no way healthy. And I have every desire to stop this trend before my organs shut down. I just can’t. deal. with. food. And even when I do get a little hungry, I stop being hungry at the thought of actually eating. Cooking, eating, and cleaning all require effort. Right now I’m in the “pick ½ of 1” stage. It is not a good place to be.

A couple of days ago, one of my twitter/bloggy friends Louise (who can be found @DelphDahling and at her *amazing* blog), who is a wonderful mother to an amazing autistic son, put up a tweet that said:

“5yr old shouts me upstairs: “MUM, I need to cuddle a human” After 1 minute of cuddling: “That’s enough human. You may go now. Thank you” :D”

I immediately recognized that as me, when I’m feeling yucky. I have a need of cuddling, but it’s too much at the same time. It is highly confusing. Her poor son came down with a really nasty stomach virus the next day. Poor kiddo, stomach viruses are the absolute WORST for me. I have a phobia of vomiting and haven’t had a stomach bug since 5th grade. I hope to continue this trend for the rest of my life by sheer force of will. Do any other spectrumites have the same reaction when they’re feeling sick? Need cuddling, but can’t deal with it? Or at least, need lots of tight, deep pressure that you can’t give yourself for sensory input, but can’t get it?

But at any rate, being this sick sucks. Hopefully in a few weeks it will start to abate itself. I know that with mono, the only thing to do is rest and not push it. Unfortunately I have to push right now. But hopefully after tomorrow I’ll be able to crash and do nothing for a few days. Wish me luck!

(And on the plus side, my professors are being very sympathetic… one responded with “I’m so sorry you have mono… that SUCKS!!!” – yes, a professor said that, complete with caps and exclamation points.)


  1. Being sick does indeed suck. I think some of the sensory issues you describe are common to the illness experience even in neurotypicals– having the flu, in particular, often leaves me unable to endure light, noise, almost anything touching my skin, and most food.

    As far as eating goes– if there is anything you can tolerate, eat it exclusively and don’t worry about trying for variety. Once when I was pregnant I lived for a week on nothing but pretzel sticks and raw oatmeal. I also have severe emetophobia (fear of vomiting), and I find that I’m less likely to feel queasy if there’s a little something in my stomach.

    And like I said– buy the food prepared if you can, and avoid the effort of cooking and cleaning. This is not the time to worry about money or being environmentally conscious.

    If you can’t tolerate food, at least focus on staying hydrated. Sweet drinks will give you enough calories to keep you from starving, and sports drinks and vitamin waters will help keep your biochemistry balanced. I speak from much experience here.

    “Boost” and similar drinks replace a meal pretty well. They may not taste great, but just hold your breath and swallow quickly. If the texture is a problem, try drinking through a straw so it doesn’t touch most of your mouth.

  2. I am so sorry you have mono and that eating has become so difficult.

    I think that queenlyzard has outstanding advice. The only thing I would add is to be mindful of lactose intolerance. Sometimes serious stomach issues can cause a flare up of lactose intolerance in someone who never had it before. My husband and bestfriend have both had problems with this.

    With regards to cuddling–I totally get what you mean by wanting cuddle input but not being able to tolerate it. My loving husband and I have separate beds–I can only bear proximity/body heat for so long. I use a weighted blanket for input. When I feel ill, the blanket puts pressure on muscles and joints that ache, so the input is too intense and uncomfortable. I pile on afghans–they have weight without being hot.

    You have my sympathy. I wish you luck coping with so many things at one time.

  3. I am so sorry you are ill. i wish I could come cook and clean for you 🙂
    For my son we sometimes use large couch pillows to press down on his body for pressure without the touch, don’t know if you have someone you would be comfortable doing that for you. Also, full submersion in a full tub with just nose and mouth sticking out works for him for deep pressure and calm.

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