Not out of mind

[mdlbear]

So here we are, in the middle of National Invisible Chronic Illness Awareness Week. I first became aware of this two years ago, and kept putting off posting. I'm not, after all, disabled -- you wouldn't know to look at me that I have multiple chronic illnesses. That I'm limited. Most of my limits aren't physical, but that doesn't mean they aren't there.

"Out of sight, out of mind"? Not so much.

So let's get the obvious physical problems out of the way first. The biggest one is sleep apnea. Hence the "facehugger" userpic -- I sleep with a CPAP. With it, I can get a halfway-decent night's sleep. Without it, I snore loudly, wake up tired, and have a greatly increased risk of heart attack or stroke. I like my facehugger, even though it's annoying and takes up a lot of space in my carry-on luggage. I worry about the power going out, though. (Yes, I have a UPS for it. Thanks for asking.)

The other one is Celiac disease. Also known as "gluten sensitivity". "People with milder coeliac disease may have symptoms that are much more subtle and occur in other organs rather than the bowel itself. It is also possible to have coeliac disease without any symptoms whatsoever. Many adults with subtle disease only have fatigue or anaemia." Yeah. That.

If I eat wheat, rye, or barley I only get a little bit of intestinal pain. What I get is mostly more depression.

One of the two mental illnesses I have is called dysthymia. It's not the same as major depression -- you can think of it as chronic, minor depression. With emphasis on the chronic part. I literally can't remember when it started. Can't remember when feeling "ok" didn't mean feeling noticably better than usual. I do remember reading a post where someone talked about "reaching out for joy" and not having any idea what she was talking about. I still don't, really.

I'm taking an antidepressant now, and it's worth the side effects, but it's not a "cure" -- all it does is move my baseline up a little, so that "ok" is normal and "good" isn't too unusual.

The other thing the antidepressant does for me is give me a little more "cope". I can usually deal with setbacks and stress without falling apart or becoming paralyzed and unable to function. Usually.

The other one is alexithymia. That's the one that's really hard for me to describe, because what it means is that I find my emotions hard for me to describe. Usually, they're hard for me even to notice. I can sometimes notice that I'm happy if I can catch myself smiling. If I'm shaking, it may take me hours -- or days -- to figure out where I was because I was afraid, angry, relieved, happy, or just hungry.

Maybe it ties in with the disthymia -- it's probably hard to learn to recognize emotions when your range mostly goes between "blah" to "ok". Maybe it ties in with being easily overloaded, so that I learned to block emotions rather than being overwhelmed by them. I'm still working on it.

So... there you have it. Nothing that rates me a good parking spot, or a reserved seat on the bus. I could walk for five miles any time I wanted to. But I don't usually want to -- that's how disthymia limits me. Walking feels "good" for some definition of the word, but I don't know that definition, so I don't have a good way to remember how it makes me feel. That's how alexithymia limits me. I could go on.

But I won't. I think I'll stop here. I'd go have a beer, but it's made from barley.

Comments

[jcbemis.livejournal.com]

glass of wine? sake?

[mdlbear]

Of course! Or gin, or Scotch -- distillation removes the gluten. I had a glass of gin before dinner, as a matter of fact.

Although alcohol is a depressant, so I have to be a bit careful there.

[jcbemis.livejournal.com]

I was just staying in the same vein as the beer you mentioned {hug}

[mdlbear]

:) ((((hug))))

Yeah, beer is really about the only alcoholic beverage I have to avoid.

[judifilksign.livejournal.com]

Feeling a little down, all of the time, sounds wearying. Reading you say that not knowing what "reaching out for joy" means stabs me a little in the heart.

I think you must be right when your alexithymia is related to the limited arc of your affect because of the dysthymia.

I remember reading that people's brains are not able to process ideas about things for which they do not have words. (For example, men cannot tell the difference between the five shades of white a woman presents to them, unless he is clued in on the designer color names that go with them: "eggshell, ecru, pearl, mist," and "off-white,") When you learn the words for the experiences and ideas, you can wrest for their meaning and connection to you. (This is how therapy can help, giving us words for ourselves to process with ourselves how we feel.)

[mdlbear]

Hmm. The two therapists I've had haven't been much help; this may very well be because I don't have the words to describe what I think is wrong. Let alone know whether it's fixable.

I guess it must be something like being colorblind. I just have this feeling that something is missing, but can't get a handle on what it is. And if there's a way to work on it, nobody's told me what it might be.

[itskoi.livejournal.com]

**Hugs**

I have now been refined to IBS, lactose intolerance, chronic depression, occasional anxiety, tree nut allergy, and deafness in one ear but that's not invisible as I wear a hearing aid. No dysthimia.

Dysthima really sucks. I think (no offence) it is worse than a major or even moderate/minor depressive episode because at least with those you know that most likely it will peak, and then come back to normal with medical help. Dysthimia is more like a constant sore that gets picked open every day before it can heal properly isn't it?

Raise your glass to. . .the fall leaves yet to come.

[mdlbear]

Hmm. I'd say it's more like a dull ache that's been going on for so long that you forget it's even there; you only notice it on the few days when it goes away temporarily, or flares up so badly that you can't move. I have lower-back problems, too. I hadn't thought to compare them, but they're a lot closer than I'd like.

It's certainly worse than a moderate depressive episode. Major; I don't know. In a major depressive episode the blackness just blots out everything else, and it doesn't seem like it's ever going to end. You're right about it really sucking, though.