{"id":4698,"date":"2016-04-06T20:00:42","date_gmt":"2016-04-07T00:00:42","guid":{"rendered":"http:\/\/dsavannah.com\/blog\/?p=4698"},"modified":"2016-04-06T22:00:19","modified_gmt":"2016-04-07T02:00:19","slug":"2016-e-is-for","status":"publish","type":"post","link":"https:\/\/dsavannah.com\/blog\/index.php\/2016-e-is-for\/","title":{"rendered":"#dSavannahDefects – E is for…"},"content":{"rendered":"

\"E\"… Epstein Barr Virus
\n<\/strong><\/h2>\n

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.<\/p>\n

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<\/em> failing. When it’s really my body itself <\/em>that is failing.<\/p>\n

And then, last year I found out: I have Chronic Epstein Barr Virus<\/a><\/strong> (EBV). It explains\u00a0everything.<\/em> Okay, not everything, but a lot. Mostly why I’m tired all the time.<\/p>\n

\"dsavannah_defects_noballs\"EBV is an invisible, autoimmune disease<\/b><\/span> that very few people have heard of.<\/p>\n

Most people have heard of its cousin, mono<\/a>, also known as the “kissing disease”, which can leave you feeling very tired. Most people get over mono with rest, fluids, and tylenol.<\/p>\n

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.<\/p>\n

Although there is yet no scientific study that links EBV with chronic fatigue syndrome<\/a> (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.<\/p>\n

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):<\/p>\n\n\n\n\n\n\n
<\/th>\nnormal<\/strong><\/td>\n4\/6\/15<\/strong><\/td>\n7\/1\/15<\/strong><\/td>\n11\/16\/15<\/strong><\/td>\n1\/13\/16<\/strong><\/td>\n<\/tr>\n
EBV Nuclear AG (EBNA)<\/th>\n0-18<\/strong><\/td>\n480<\/td>\n363<\/td>\n299<\/td>\n444<\/td>\n<\/tr>\n
EBV Early Antigen IgG<\/th>\n0-9<\/strong><\/td>\n41.3<\/td>\n30.4<\/td>\n23.2<\/td>\n30.2<\/td>\n<\/tr>\n
EBV Capsid AG IgG<\/th>\n0-18<\/strong><\/td>\n127<\/td>\n154<\/td>\n114<\/td>\n128<\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n

No WONDER I’m so tired *all*. the. time.<\/p>\n

(And I just realized I wrote this post without using my bullet tags {“What it feels like”, “What it is” and “Treatment”}\u00a0 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.)<\/p>\n

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.\u00a0 Next month, my doctor will tests my blood and see if it budged those numbers at all. (One can hope.)<\/p>\n

If not? I’m totally not sure what’s next.<\/p>\n

… empathy<\/strong><\/h2>\n

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.<\/p>\n

They just don’t get it.<\/p>\n

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.<\/p>\n

It’s hard to feel empathy for your ownself when once again you let people down because of something you just canNOT do.<\/p>\n

And please note, empathy<\/em> is NOT sympathy<\/em>, <\/em>though they are related.<\/p>\n

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.”<\/p>\n

\"EmpathyIt also says “empathy” means: “the ability to understand and share the feelings of another; the capacity to place oneself in another’s position<\/span>.” 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\u00a0hurts. <\/em>This article on The Mighty<\/a> discusses a poor girl who has that actual issue, who then got crap for the shoes she found that didn’t hurt.<\/p>\n

So, you can be sym<\/em>pathetic and feel bad<\/em> for someone, but it’s not the same as being em<\/em>pathetic and actually feeling what they feel.<\/p>\n

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.<\/p>\n

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.<\/p>\n

\n

I am really really surprised at how few entries there are for my Defect to Discworld giveaway<\/a> that is in yesterday’s post!\u00a0 And entering is easy!!!\u00a0 Please hop by and enter to win one of three books. Pretty please?<\/p>\n","protected":false},"excerpt":{"rendered":"

… 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”. 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