Off Subject: Epstein-Barr Virus & What it’s like to live with it

Explaining to people that you have a chronic illness is hard. At least when you have Epstein-Barr. You’re not in the hospital. You’re not always home sick. You don’t show signs of it outwardly. Internally, you’re suffering.  When you tell someone, “I can’t workout today – I need a rest day for my illness.” all they really hear is, “I need a rest day.” and respond with, “Oh yes, rest days are important. I need one too.”  And yes, they are when exercising but with Epstein-Barr (EBV), they are crucial.

I find it difficult to explain to people exactly what I go through. I try to say, “It is like having never-ending mono” and that seems to help but they know that everyone gets over mono and so why wouldn’t I? I try to explain the tiredness but it makes me sound lazy. So here is my attempt at explaining what it is like (and then we’ll get back to hiking stuff). (If you want a very medical way of looking at it, click here)

When you first get sick with EBV and don’t know it – you wonder why you’re feeling so bad one day, but fine the next. You go two weeks and then, BAM, the symptoms are back. You go to the Doctor but by the time the appointment comes, you feel fine. So they send you home. The next week, you feel bad again and call back. They’ll run some blood tests and you’ll get the call: “You have some antibodies that show EBV. Just rest a couple of weeks and you’ll be fine.”  I have what? EBV? What the heck is that and all I have to do is rest?

That’s when Google helps out. You start Googling everything for EBV. You read how it turns into Chronic Fatigue Syndrome, Lupus, and other auto-immune diseases. You read how people with Chronic EBV have a much higher rate of getting cancer (the lymphoma kind). And you wonder why the doctor didn’t explain any of this. You do the required resting for two weeks. And you think, “Great! I’ll be fine!”

Nope, never should have done that workout. You get back from that workout, lay down on your bed fully clothed, sweaty, and pass out. And naps aren’t your thing. You can’t nap during the day unless it is on a perfect couch with maybe sports in the background. But now you can nap. And you wake up feeling like you’ve been hit by a truck. Not the pain part – the part where all you want to do is lay back down, not move, and not talk. This goes on for a few days. Finally, you rest and you do a small workout and you feel okay.

The symptoms go away and life goes back to normal. What are the symptoms? Well, for me they were a weird cough – kind of like the cough you get when you blow up too many balloons and your lungs need air. And you feel achy like you have the flu but know you don’t. Some people get a very bad sore throat. Others do feel like they have the flu but they don’t. You have an overwhelming feeling of tiredness. And sure, a lot of people feel tired but this isn’t that kind of tired. This is a tiredness where you, at times, feel paralyzed. You can’t move. You can’t get out of bed. Your limbs feel like dead weight. And it can be scary.

Have you ever attempted to pick up a large sack of potatoes? And when you go to pick it up, it just sits there. You can’t seem to budge it. Imagine how the potatoes feel. They know someone is trying to pick them up but they, themselves, feel so heavy. They can’t move themselves. They are just laying there. That’s how it feels when you’re tired from EBV. Your limbs want to move. You want to get up out of bed. And you can’t. And you want to cry and often you do. Because no one understands and no one can help and everyone thinks they are tired in the same way as you. The result is they think you’re lazy or a drama queen. I’m not. I swear. I want to be active all the time. I want to hike and run and workout and do Spartan Races and just keep going. And I can’t. And it sucks.

Of course, doctors won’t often believe you. I went back to my doctor after having having it come bad really bad in February of 2015. He suggested I get a sleep study because there’s no way I could still have the EBV and it just sounded like I was sleep deprived. Eventually, I went and got that done (that’s a whole other story and I’ll never get another one). I was told I had mild sleep apnea – barely more than what an average person has. It clearly wasn’t that. So now I suffer one my own and won’t ever go back to the doctor for it.

I get asked a lot what I can do for it. Nothing. I do try to take mega doses of Vitamin C as it helps with the immune system. When I have a lingering case of EBV I start downing 5,000-10,000 MG of Vit C and it does help. Others have their own ways of pumping up their immune system – everyone is different.

So how does it affect me normally? Normally, I’m ok. I workout 4-5 days a week. I take my rest days and I try to eat healthy. I can go long stretches where I feel fine. But it seems I then will have about a month (so far it always seems like February) where I’m just feeling bad. I don’t get the symptoms that I got right at first (the flu-like things) but I get the tiredness. And it doesn’t do any good to tell anyone I’m tired because they say, “Me too!” I’m sorry but my tiredness is not your tiredness. It isn’t the same. When I say I am tired it means I may wake up in the morning unable to move. I will lay there, my limbs feeling like they are on fire (kind of like after a hard workout), not able to move and just want to sleep. This is after 8-10 hours of sleep. Or I will go outside and shovel and then have to come in, shower, and then just crash. Yes, I know you feel that way too. It is hard to explain but it isn’t the same. I will feel like I have to crash for 2-3 days after that.

As I sit here and type this, my body is shaking. I didn’t even workout yesterday. I slept 7 hours. I didn’t workout on Tuesday (it is Thursday) either. My last workout was on Monday and it was very hard. Normally, I’d recover but I haven’t yet. That’s because the virus is attacking my good cells. And it brings me down. I am supposed to workout today but I am not sure if I can. I’ll probably push myself to do it because I need to but I’m afraid of how I’ll feel afterwards.

All I can do is sit here and hope my body stops shaking, my head stops feeling heavy, and that I’ll be able to workout later. I’ll go home, down some Vit C, go to my son’s presentation at school and go home and sleep. I’ll wake up tomorrow hoping to feel “normal” and be able to function.

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About Jennifer G

Nature lover. Being outside keeps me sane and balanced.

Posted on February 18, 2016, in Off-Topic and tagged , , , , , . Bookmark the permalink. 2 Comments.

  1. I’m sorry you have to deal with that, but I admire how you still keep pushing yourself to workout when you can and let yourself rest when you need it. You sound like a stong person. Keep up the fight!

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