Mono Mommy is how my husband or our friends jokingly refer to me sometimes. I have had mono twice. Actually, I will always have it in my body, but more about that later. I want to tell you about my two rounds of mono, how it effected my life, what we did to treat it, and how it could effect me in the future.
I first got mono several years ago when my kids were kindergarten/preschool ages. We were already homeschooling. I got a cold that just never went away. It lasted for over a month, I was preparing to be the maid of honor in my best friend’s wedding and we had just come back from a big vacation in Wisconsin, which is where we thought I got the cold.
I didn’t have time to go to the doctor before the wedding. I was so tired all the time and I was focusing on the wedding and homeschool. After the wedding I finally saw the doctor who told me I had mono and that it could last weeks or months and the only thing I could do for it was to rest. So I went home and rested. I was sick with mono, which caused the most horrible fatigue I had ever had, for 15 months.
During those 15 months there were whole weeks where I hardly ever left the couch and it felt like a jail cell I couldn’t get out of. I held onto walls or furniture when I walked. I lost all muscle definition and had a hard time holding my head up, especially in the car. My friend told me I walked like an 80 year old. My eyes closed while talking to people because it took too much energy to listen and keep my eyes open at the same time. We did school with me on the couch reading to the kids and them sitting on the floor around me.
Finally I got better. It was slow and I had many days where I overdid it and it took days to recover. But eventually I regained my previous energy levels for the most part and was starting to resume working out and jogging again, which was an activity I had just started enjoying before I got mono. And I sold that couch that had made me feel like a prisoner.
I was well for about a year or so. I had resumed previous activities and my husband was happy I could go places with him again. His friends and he had planned a float trip and he wanted me to come along. I had missed many float trips and activities while I had been sick, so even though I had a bad feeling about it, I let him talk me into it and we went.
I bet you can guess that something on this float trip caused my mono to come back. We went on the river, the water was down, we had to pull the raft, our friends got into a fight or something and refused or couldn’t help much respectively. By the end of the float I felt like I was going to die on that river if I didn’t get off it soon. I left the raft and our friends and walked to the end. My husband and I decided not to spend the night again with how awful I was feeling and when the raft and our friends finally arrived we told them we were going home.
We went back to the camping area and my husband started packing all of our stuff while I tried to re-hydrate. Luckily one of our friends had been a former EMT and realized I had the symptoms of going into heat stroke. They packed ice around my body and I think they saved me.
We knew it would take awhile for me to recover from being over heated. It is a major affront to your immune system and I had taken longer than most to get well from any kind of cold ever since the mono. But I was really ill. I couldn’t brush my hair, I slept all the time, my speech was blurred. I knew my mono had come back, but no one believed me at first. We finally went to the doctor and although he was skeptical of my idea at first, blood tests confirmed it. My mono was back, and I had shingles too, lovely. He gave me something to keep the shingles from breaking out since we caught it early and he sent me home saying there is nothing you can do for mono except wait and rest.
Well my first round of mono actively lasted for 15 months. My kids were older now and needed more instruction for homeschool and I was not willing to do nothing but rest this time. I knew I needed to actively help my body get well.
I was even worse than I had been the first time. My body hurt when I need to pee or have bowel movement. I had to be assisted to walk. My spleen was inflamed, which is the only truly dangerous possibility when it comes to mono, your spleen could burst. We had to buy a recliner, which I practically lived in. We started looking for ways to treat the mono.
We found a nutritional therapist. When I first went to her I needed help getting into the office or to stand up from a sitting position. I would fall asleep during the visits which involved laying down on a doctors table. My husband or my mother would drive me to all visits and come in with me. My memory was bad and my brain didn’t understand things very well so they would have to help me tell her my current symptoms and then tell me later what she had said because I forgot.
She treated me with all natural supplements which she tested with my body to see if it liked it or not. I don’t explain it well, all I can tell you is that a large amount of your immune system is in your skin. By holding the pills in my hand or putting them on my body she could tell by the resistance in my outstretched arm whether my body needed that and which parts of my body needed the most help. We fed the body the supplements it needed.
She also changed my diet drastically. I still follow this healthy diet today. I do not eat wheat, anything artificial, dairy or unnatural sugar. I don’t eat very much soy or natural sugar either and I limit myself on grains in general. I eat grass fed beef, chicken without antibiotics and free range eggs. I eat mostly organic produce. I got rid of my microwave and bought a convection/toaster oven instead to keep the radiation out of my food after I started realizing that I would fell worse after eating anything that came out of the microwave. I also stopped using any synthetic medicines or vitamins.
It took me over two years to recover from mono the second time. I still have days and even weeks where I am worn out. The mono is now dormant in my body but could come back whenever I have a distress to my immune system. I live life to the fullest because I never know when I might have another round of mono. I also rest regularly, watch my diet, and have an earlier bedtime. I rarely set an alarm clock and let my body sleep as long as it wants and I take naps when needed.
I am just stating to be able to jog very short distances and only occasionally. I have to be very careful when it comes to the heat, always staying very hydrated or not going out on hot days. Any straying from my diet causes extreme fatigue, stomach aches and poor health for days. Any cold or affront to my immune system is extreme on my body compared to others. I keep a cold for over a month, and a tick bite made me so sick that it set me back on recovery for months.
I am extremely sensitive to any chemical such as unnatural cleaners. I have had to change every product in our house to a completely natural one. In later posts I will tell you about the cleaning products, body products and other things I have found that I love and are safe for you and your family. I have learned so much about the things that we use daily that can eventually harm our health, and in later posts I will share what I have learned. Keep in mind that I am not a technical person. I rarely remember the exact name of a disease or chemical. I can only share my own thoughts, experiences and opinions in my own words.
You might wonder why I continue to keep my diet(which is expensive) and still continue to live in a non conventional way in reference to the products I will buy or allow in my home. I am still, and always will be living with the effects of mono. My immune system is permanently compromised. I have to give it the best in order to have semi normal health. I usually have some sort of pain every day, either from my shingles, muscle fatigue, headaches or random other things. I now have extreme allergies which I never had before mono.
I do have my life back though. I am actually glad I had mono in a way. I think it taught me and my husband to cherish each other even more. He had to take care of me almost completely while I was sick. We grew even closer together and now we really don’t like to be away from each other when we don’t have to. We rarely go to something without the other, which used to be a normal event. We love staying home and being together doing nothing just as much as going out. We both grew and evolved in so many ways during and after the mono that I am extremely thankful for.
My kids also had to take on more responsibility for the house and for their school work as a result of my mono. They are responsible, caring children and I think the mono had a part to play in that. Now that I’m well this means that I have kids that can work hard so that we have time to play hard! We love going places and doing things now that I’m well and can enjoy them again. My kids are happy to have a healthy mom again and we never take it for granted.
There is very little info out there about long term mono. And the causes of mono are actually being rethought as well the effects. Have you or someone you know experienced mono? I would love to hear your story.
P.S.-The picture that accompanies this post is on one of my bad days. I am drinking a vegan protein shake which is one of the few things I have the energy to make when I’m sick. Not one of the worst days, but one after I started to recover and had a set back. My husband would regularly ask me to send him a selfie so he could see how I was doing that day. I am pretty sure I deleted most of the pictures because I looked so awful and they made me feel depressed. If I find one though I will share it. I want to people who are going through similar things to know they are not alone.
I have looked through all of my pictures and can’t find one of those selfies. I only shared them with my husband I think. I want to also note that people who saw me during those days always mentioned how good I looked. I felt like death and those compliments made me feel like they thought I was faking or something. Remember, just because a person looks normal, doesn’t mean that’s how they feel.