Post Mono Life - tips and tricks

I do remember the days of pre-mono. They were really, really good. I didn't have any of these frickity, frick, frick issues with food or weight stability.

Everything changed. I had painful joints for 5 solid years. I threw everything UP against the wall in the beginning including vitamins, herbs and Chinese medicine along with my regular medical professionals. Chronic Fatigue was considered blowing more smoke and just buffalo'ing yourself. No one took it seriously so eventually you just quit talking about it and sux everything up on your own.

It wasn't until the last couple of days that I've even allowed myself to think about, @moonangel12.



Diabetes Risk Increases with Exposure to Epstein-Barr Virus
Researchers uncover genetic link involving b cells that suggest an increased risk of developing at least seven identified autoimmune disorders, including diabetes, following a person's infection with the Epstein-Barr virus.
Written by Lynne K Schneider PhD

It won't let me post the link.

My siblings managed to avoid it. I was in quarantine back then, too. Sigh. They don't have any of the issues I've had with blood glucose and all of the rest of it.

https://uhs.berkeley.edu/sites/default/files/Mononucleosis.pdf

https://medlineplus.gov/infectiousmononucleosis.html

Do you have any idea why we don't hear much about it anymore?

I've found that sitting on the couch at the speed of zero makes a mess out of everything. I keep moving and rolling. I try to hike every single day during these warmer summer months. During the winter, I shovel a lorra lorra snow, snowshoe, swim as much as I can, run UP and down the stairs almost every single day. I just keep moving with housework , irrigation and chores for the critters in the evenings, too. Binge watching TV this winter didn't help me out one iota.

There are nights that I can't sleep because my joints start to ache but inactivity makes it worse. I try not to rely on Aleve gels but there are days that I have to. Pain is the precursor to change. I had to get that weight off to preserve my joints. It helped my blood glucose levels, too.

It's a total cluster. You know. You know.

Something very helpful is the Spoon Theory.
https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

I had posted that my life can be separated into "Before Mono" and "After Mono."
I got Mono in college and was sick for over 6 weeks. I was never skinny, but after mono I was exhausted all the time and gained 100lb within a year. I kept that 100lb through 4 very tiring pregnancies, the last of which got me gestational diabetes that I managed to control with a low-carb diet and a pill, which didn't leave for 6 months after the birth and only left after going keto. My A1c finally went down. After my doc told me that I was cured of the diabetes, I went back to eating the old way (wayyyyyy too much) and regained the 40lb I'd lost. Years later after a diabetes scare where my mom almost died from complications, I went keto again, lost the weight, and I've kept it off since 2015.

But within 20lb of goal weight, I got my second life-bomb, Sjogren's. Life has gotten even more complicated, which is easier to navigate since I got the weight off, but intermittent fatigue is still there, joined by intermittent joint pain, fibro, and all the super fun Sjogren's symptoms of dry mouth and apocalyptic dry-eye hell. So now I also have "Before Sjogren's" and "After Sjogren's, too." Figuring out that mess was a long drawn out ordeal. In the end, I don't have enough abnormalness in my blood to get a formal diagnosis. The rheumatologist talks about my Sjogren's but Sicca Syndrome is in the chart. Which matters not one bit with Sjogren's since they don't have anything for it anyway other than to try a lot of meds that may or may not work after trialing them for about 6 months. None of them are cheap. I did try hydroxychloroquine a couple years ago. It just gave me liver spots and weird migraines that radiated down my spine and into my joints causing more joint pain and fibro symptoms. Completely the opposite goal here! So I'm on no prescrips now, just a lot of chewing gum, much eyedrops and eye ointments, and naproxen when my joints get stupid. I sleep poorly and never feel rested after I do sleep. At 2 in the afternoon, I can tell you what time it is. I get so fatigued it's like I'm trying to swim through molasses. The only solution to that seems to be to start my workout before then so the crash is put off until later. When I usually get slammed with fatigue again and then end up with Raynaud's symptoms.

I too have thrown everything up against the wall: vitamins, a million herbs, despair. None of it was useful in any way, unless the goal was to waste money or get really depressed. I've just learned to embrace the normal things I do have, create normalness that I don't already have, and do the best I can with the rest.

I do everything on my own terms. I give myself permission to do my own thinking. I'm a product of my raising and deeply imprinted by my family and elders. I've stopped editing myself trying to make others happy. I'm through with all of that unhappy horsesheet.

They caught all of the wild children
And put them in the zoo
They made them do sums
And wear sensible shoes
They put them to bed
At the wrong time of day
And made them sit still
When they wanted to play
They scrubbed them with soap
And made them eat peas
They made them behave
Say Pardon and Please
The took all their wisdom
And wildness away

That's why there are none
In the forests today

Jeanne Willis
Wild Child


All of you are wise beyond your years. Thanks for allowing me to even think about any of this.

I haven't thought about this in awhile either, y'know. At some point you have to figure out how to keep living, b/c that's all there is to be done. I started frequenting a Sjogren's forum in the beginning, but I stopped b/c my life isn't Sjogren's. I have to live with it, sure, but I was getting so depressed b/c really there is no hope but what you carve for yourself, so I decided to figure out how to live IN SPITE OF IT.

Ugh. It's the witching hour, after 2pm and here I am messing around instead of doing my workout...feeling so much yuck. But I'm going to get off this silly computer, have a snack, and then get the workout done as best I can.

Interesting to see this posted here, i started thinking about this after reading the following article. https://www.bbc.com/future/article/20200622-the-long-term-effects-of-covid-19-infection.

At the age of 19 I got sick for around 3 months. I was too tired to eat, sweating through the night. The weight fell off my 5"7 frame until I weighed under 100lbs. Then one day the coughing and the sweating went and all i could feel was hungry and tired. I ate ravenously, everything. And slept. I remember falling asleep in lectures, napping in the afternoon, my hair falling out. By the summer I had gained over 30lbs, so i pushed myself, cut down my food... bring on years of eating disorders. At some point over a yer later they did a viral check and found out I'd had Epstein Barr (which now makes total sense).

10 years later as I suffer severely with IBS, the discomfort is so bad sometimes I want to cry. I had years of issues maintaining my blood sugar, waking up panicky and starving in the night. I get tired easily, need 9 hours of sleep, have brain fog and have to factor in "rest time" into my day. My hormonal cycle never recovered. I have suffered from depression and binge eating. Socialising is tiring, I have lost friends. Sometimes I ache all over, often I feel cold to the core. Yet apart from Epstein Barr over 10 years ago they can find nothing. I'd give anything to feel "normal" again. Its the "Before" and "After" nobody wants.

The advice that has helped the most has been. "You have to accept that you are limited. Accept that you cannot do things the same as others. You must be kind to yourself, help yourself". I spent years fighting, now I try and work with my body, within my capability to do the things I want.