… Epstein Barr Virus
I used to speak to someone quite regularly on the phone, and every time they asked how I was, I’d reply “I’m tired”. A response they didn’t really like, and complained about. “Why are you always tired?” they’d ask.
I never had an answer. I really wish I did, but I didn’t. “I work too hard”, “I have insomnia”, and the like didn’t seem to be satisfactory answers. And oddly, being tired all the time feels like a moral failing. When it’s really my body itself that is failing.
And then, last year I found out: I have Chronic Epstein Barr Virus (EBV). It explains everything. Okay, not everything, but a lot. Mostly why I’m tired all the time.
EBV is an invisible, autoimmune disease that very few people have heard of.
Most people have heard of its cousin, mono, also known as the “kissing disease”, which can leave you feeling very tired. Most people get over mono with rest, fluids, and tylenol.
Well, EBV also leaves you feeling very tired, and is characterized by crippling fatigue and general malaise. Even if you “get better”, the virus stays in your body. For. Life. And no, I have no idea where I got it.
Although there is yet no scientific study that links EBV with chronic fatigue syndrome (CFS), there seems to be some connection, and CFS also features a chronic lack of energy often associated with difficulty concentrating or generalized pain. So, although I haven’t been diagnosed with CFS, I may have that as well. Cuz, like, I’m tired all the time, I hurt all the time, and I have trouble concentrating. Also all the time.
Luckily, there are blood tests that show the existence of chronic EBV, and over a year’s worth of testing shows how bad I have it (date is when the bloodwork was done):
| normal | 4/6/15 | 7/1/15 | 11/16/15 | 1/13/16 | |
| EBV Nuclear AG (EBNA) | 0-18 | 480 | 363 | 299 | 444 |
| EBV Early Antigen IgG | 0-9 | 41.3 | 30.4 | 23.2 | 30.2 |
| EBV Capsid AG IgG | 0-18 | 127 | 154 | 114 | 128 |
No WONDER I’m so tired *all*. the. time.
(And I just realized I wrote this post without using my bullet tags {“What it feels like”, “What it is” and “Treatment”} for consistency. The editor in me has yelled at the writer in me, but the writer of this post is tired, and doesn’t want to re-write, so she’s leaving it.)
I have taken two rounds of an antiviral medication which did nothing. And some supplements that were supposed to help, but did nothing. Then, this year, I’ve had four intravenous treatments of Vitamin C. Next month, my doctor will tests my blood and see if it budged those numbers at all. (One can hope.)
If not? I’m totally not sure what’s next.
… empathy
One of the hardest things to deal with in this struggle with my health seems to be a lack of empathy on the part of people who aren’t sick, who haven’t struggled with depression et al, who have hunky-dory perfect lives.
They just don’t get it.
And in a way, I understand. It’s hard to show empathy toward someone when you need them to do something for you, and they don’t. Even if they can’t.
It’s hard to feel empathy for your ownself when once again you let people down because of something you just canNOT do.
And please note, empathy is NOT sympathy, though they are related.
According to ye ole google (I have any number of paper dictionaries I could check, but I’m too lazy), “sympathy” means: “feelings of pity and sorrow for someone else’s misfortune; understanding between people; common feeling.”
It also says “empathy” means: “the ability to understand and share the feelings of another; the capacity to place oneself in another’s position.” Or literally, walking a mile in their shoes. Or bare feet, if they don’t have shoes, or can’t wear them because the wearing of shoes hurts. This article on The Mighty discusses a poor girl who has that actual issue, who then got crap for the shoes she found that didn’t hurt.
So, you can be sympathetic and feel bad for someone, but it’s not the same as being empathetic and actually feeling what they feel.
And again, unless you have depression, or an #InvisibleIllness, you probably are sad that you friend has that problem, but you can’t really relate. You still get annoyed when they say they’re tired. And they probably don’t even tell you when they feel depressed, because you might as well be speaking in old Latin, as much as you understand.
As difficult as it is, I hope you cultivate empathy. You don’t have to walk in my shoes. Just don’t laugh or criticize or make me feel worse about myself when I’m limping.
I am really really surprised at how few entries there are for my Defect to Discworld giveaway that is in yesterday’s post! And entering is easy!!! Please hop by and enter to win one of three books. Pretty please?
I’ve never heard of EBV. Thanks for sharing.
I think those who haven’t struggled with depression and who appear to have hunky-dory perfect lives, don’t actually have perfect lives. Some people are just good at keeping up appearances. They don’t want others to know what challenges/obstacles they face.
But I truly believe that you should never judge if you haven’t walked in somebody else’s shoes.
Writer In Transit
You’re right – no one’s life is perfect, and I didn’t meant to imply that. I just personally know people who have never had anything bad every happen to them, and so they don’t get those of us who have. Seriously – they had their education paid for, a car given to them, a house/furnishings picked out & paid for, their wedding covered, and a job pretty much handed to them. I have a difficult time not being jealous!
But you’re right – I haven’t walked in their shoes, so I have no idea what other obstacles they face. Thanks for calling me out on it.
Empathy is one of the best traits of human beings, and one we don’t always exercise.
@mirymom1 from
Balancing Act
“Exercise” is a good word for it. Another thing that if you don’t use, you lose.
Many times I have caught myself saying I’m sorry you feel crappy because what else can one say when someone tells you they feel ill, tired, etc. ? It’s kind of an automatic reply….and also meaningless (almost) and very unhelpful. So here’s what I have to say to you my dear Debbie. When you are tired, achy, etc. pay attention to your body. It is telling you to rest, It is telling you it has had enough. It is telling you enough for today….Put your feet up if they hurt, try to listen to your head and heart. Your body knows best. Do not feel guilty about taking as much R&R as you need, and then if you still need it take more! EPV is a horrible affliction and certainly nothing you asked for. One day this relentless illness may relent and exit stage left. It has been known to happen out of the blue. I truly wish this for you. Until such time I say do what you can and screw the things you can’t!!! Rest, rest, rest!!!!! Love you as always XOXOXO
Thanks for the great cheerleading, darling! “I’m sorry you feel crappy” is better than some of the other comments I’ve heard. At least it’s honest, and doesn’t try to fix it.
Listening to my body is hard… especially when I’d rather it shut up! LOL
And I am hopeful for a change…
Hugs to you, my dear friend!
Empathy is something that all of us must work at. Sometimes, we forget that not everyone is feeling great. Thanks for the good explanation of Epstein Barr Virus.
Visiting from the A to Z Blog Challenge.
Shalom,
Patricia @ EverythingMustChange
Thanks for visiting. And yes, empathy is a practice.
This is one I had not heard of, but I had a friend with ME – which I think is now CFS. I saw how sick he was. He described it as having permanent flu. He was told that if he didn’t do ANYTHING for about a year, he should recover, but if he carried on trying to work etc, he could extend it to 15 years! Not very helpful when he had 3 young children. But I did read an article around that time that said how it could be triggered by trauma to the brain of some kind (physical or mental was undefined). My friend had had menigitis that left him paralysed for a time down his left side, in his early 20s (he was in his 30s when he got ME). I wondered if the two were connected.
I am interested to know if the Vitamin C does anything.
Yes, I think ME and CFS are now one and the same. And yes, trauma can trigger such things, and autoimmune diseases are often interconnected. And since the body is a whole system, things that effect one part can cause bad things to happen in another part. (Yes, that’s my scientific language. Ha ha.)
I am interested to see if the I.V. treatments did anything too. Anecdotally, I did feel some better after the second treatment, but it didn’t stick around and I didn’t notice anything with the others. I won’t have my blood tested until end of next month, so I’ll have to report back then.
EBV…Go away. My BT is tired of having you!
Empathy….I have always thought this is something people have or don’t. It can also be very hard to have this because you take on other’s pain and emotions. Hope that you find more people that exhibit this.
Oh, so very very v e r y t i r e d. …..
I think some people are naturally empathetic and can feel what others’ feel more easily than others, but that empathy as a trait can be learned and nurtured. Thankfully, the majority of people – and my true friends, like you – do show empathy. Just not everyone.
E…..is for Excellent blog.
Aw, thanks!
My empathy is always ready to be taught by you <3
You are the definition of tenacity, dearheart.
Aaaw. Thank you for reading and commenting. <3