Thursday, September 19, 2013

Well, you look great!

When I try to talk about my difficulties, I sometimes hear "Well, you look great!" Thank you. I appreciate that I can accomplish not looking as horrible as I feel. Really, I do. And I know that is probably what people mean, but it also makes me feel like you don't believe me. I think there is an underlying assumption that if someone looks good, she must not feel that bad. In the interest of being better understood, here is why I "look great:"

-I am a creative person, a particular type: a dancer. My body doesn't work, so I am a very, very stifled artist. Picking an outfit provides a moment of artistic expression that I can afford.

-Getting dressed is not strenuous and, at this point, most of the people in my family recognize that a grown woman deserves 5-10 minutes of "peace" (AKA screaming at the bottom of the stairs behind the gate asking "WHEN ARE YOU COMING DOWN!) to clothe herself.

-Trapping everyone in a carseat and then sitting in the driver's seat to put on some makeup for 3 minutes helps me to recover from the extreme exertion required for me to get everyone out the door. And, I like to wear makeup.

-And finally, looking like I feel good can help me to enjoy the time I have to be out and about. I'm still extroverted, but being this sick for this long has made me a raw nerve. I have to get out and reenergize. I need all the energy I can get, but I don't know when I may start crying or when some uncomfortable encounter will wear me out for the rest of the day- sometimes the week. Putting on a veneer does help to hide the crumbling that may be going on underneath. Some days, I just want to feel like things are normal and not crumbling and not have to talk about it.  But if I reach out to say to someone that things are hard, I hope to be received as if I look like the death warmed over that I feel like.

I'm sure I am not the only chronically ill person who thinks this way and deals with this. Think about how much pregnant women love to be told how comfortable they look... right? (NOT that pregnancy is an illness. Best not to get me started on that.)

Hello, I'm Jessica. I am a sick person.

It's like wearing a lead apron all the time.
It's like my muscles are made of clay that is either cold and stiff or hot and melty.
It's like the body aches you get with a bad fever- all the time.
It's like being the pheasant in "Pheasant under Glass." I think.
It's like I have to make myself take another breath. It doesn't just happen automatically.
It's like my heart is going to leap out of my chest, but then completely stops for a few beats.
It's like I can't quite remember what I was supposed to be doing in a room, so I have to go back 2 or 3 steps to start over.
It's like that tiredness that you get in the first trimester but it never goes away- going on 3 years.
It's like I just don't have enough air.
It's like I'm going to pass out.
It's like I'm raging with anger or frustration even though nothing has happened.
It's like
It's like
It's like

These are all things I have said a LOT in the last year. Explaining my symptoms became a mental challenge. These are just descriptions of a few of my symptoms. There are several others. The overall effect of it all is that I am tired in a way that I truly believe few people have regularly been. I have been in nearly constant pain for about year- definitely for the last 6 months. The scariest stuff- the tachycardia, difficulty breathing and presyncope or fainting (I know so many new words!), are mostly under control now. They only happen about once a week to two weeks- sometimes more if I'm having a really bad couple of days.

If I thought there was any value to it, I could go back and review the whole history of it. But that is a mental and emotional challenge that I am not up for. I will say, though, that if you read about any of the following issues and feel like you may be suffering from one or more of them, please contact me, and we could talk more. Coping is very challenging for all of these, and I would love to be a support. My list at the moment is this:

Hashimoto's Thyroiditis
Chronic Disease Anemia (took a lot of testing to conclude this)
Fibromyalgia (I like to think of this one as a "working title" since it really just means "you hurt; it's real; we don't know why.")

Functionally, these things make it very difficult to be a mother of 3 children ages 21 mos to 5 years. I get dizzy from bending over or crouching. That right there is enough to make most days a bummer. I get sick and tingly from walking up any kind of incline, and that's without carrying anyone or pushing a stroller. I have trouble sleeping (in the 4-6 hours of solid opportunity I get each night when all three kids are asleep) because of the pain in my arms and legs, ringing in my ears, or vivid dreams.

SEE HOW THIS FEELS LIKE WHINING! I have a fear of being dramatic, so my urge at this point is to backpedal and acknowledge all my blessings. BUT, that is not what this post is supposed to be about, so let's try to keep going. When I first started counseling (for a period of depression and coping with chronic illness), I talked a lot about being afraid that I'm just overreacting. She said something that stuck with me and really helped. "It seems to me that the only way you are overreacting is to act like you are ok and not really sick." So, let's try to keep going. This post is about communicating my current state of affairs- the hard parts. ***I love my family and friends and God and I have a nice, safe place to live and good food and my kids are going to a great school and it's amazing and I love my church and people are kind to me!!!!*** Whew, OK. That feels better. Now let's try to keep going.

Sometimes I get flares of pain that are so bad I have to go to bed for up to two days before they are better. We have a new adjective, "POTSy," which means dizzy, disoriented, hot flashy, tingly, bone tired and heavy, and, on bad days, tachycardic and short of breath. I go to bed to recover from feeling POTSy 3-5 days a week- sometimes for just 1/2 an hour, sometimes for a whole day.

I do think we are doing a pretty good job managing it these days with a beta blocker, rest, and avoidance of exacerbating circumstances. Oh the exacerbating circumstances. If you have had some long standing axe to grind with me, please don't do it now. Relational stress is one of the most difficult things for me to cope with these days. The anemia is untouchable (PLEASE DON'T TELL ME TO TAKE IRON). My thyroid numbers are good thanks to taking two hormone replacement medications. The auto-immune disease part of it all is still raging. (PLEASE DON'T TELL ME TO GO GLUTEN FREE. I DID. DIDN'T WORK). I'm taking a medication to "calm the nervous system" to see if that will lessen the pain from fibromyalgia. Still waiting on that one, though I do think I sleep harder when I'm on it. An undeniable plus. I'm slowly working my way into a gentle exercise routine.

As you can see from my ALL CAPS above, I have tried a lot of things to treat these issues. I still am. But, there are some things I just can't control. No matter how well I eat and follow all the rules, I still am sick. I still do eat well and follow the rules. For anyone who is suffering from these things: it is probably not your fault. I have been so stressed by the concern that I'm just doing it all wrong and have made myself ill. NOT TRUE. Now, I do believe that it's possible that toxicity in my diet and environment could and probably have contributed to where I am now. Well, what are ya going to do about that? The best you can, that's what. I do want to do a juice fast and see where that gets me. Work in progress.

That paragraph brings me to one of the HUGE reasons I do not like to talk about all this. I do not need advice and a million questions from everyone. That is what I go to specialists (including a naturopath, several MDs, and a therapist) to get. If I had cancer, people may ask me about how it makes me feel, what my treatment options are, and what my prognosis is. Those kinds of questions, though somewhat tiresome after a while, are totally understandable. Advice, however, implies that I am doing something wrong. One of the hardest things about my stuff is that they are issues about which little is known. My endocrinologist says I'm ahead of my time. A study was done to evaluate the quality of life for POTS patients. The results felt very validating. Quality of life for someone suffering from POTS is about the same as a dialysis patient. I need acknowledgement about how burdensome it is. While there are some guidelines to follow, like avoiding alcohol*, heat, and too much strenuous activity, the leading researchers for the things I am dealing with do not advocate any other particular dietary restrictions or supplements. Believe me. I'm seeking advice. What I need is love and babying- not solutions from people with no experience and no qualifications. I say this not to hurt anyone or make you feel like you can't talk to me about this stuff; just please consider it well first. I know people mean very well. I have given plenty of unsolicited advice too, but this experience has taught me quite a bit.

*Side note
I could do a whole post on how much I miss bourbon, gin, and wine and all the times I've tried again to see if it will be ok. It isn't. POTSy every time! However, an OCCASIONAL beer seems to be just the thing.

There you have it. The deets. Have I mentioned I hate talking about it? But, this hopefully can give some good background information if I ever get to talking in more detail about how it all makes me think and feel. The psychological effects of it all have been the worst part. I have been deeply challenged to consider where my worth lies. I realized what an emphasis I place on utility. But, let this sink in, you are not worth what you can accomplish. That may be an important component for a lot of us, but it is not where worth lies. I'm still very actively struggling with this, so I don't have anything profound to write about it except this: Jesus loves me because he made me and saved me- not because I can compete on the mommy blogs, cook well and often, clean well and often, dress my children, dress myself, etc, etc, etc.

I'm trying to come up with some kind of closing, but everything about this post feels awkward. So that's just how we'll end it.


Wednesday, September 18, 2013

Nobody Likes a Whiner

I hate whining. I frequently say, "Whining doesn't change my mind." Other quotes come to mind too. "Nobody likes a whiner."

I don't want to be a whiner. Of course, I was raised in a no-whining environment. Then, as a young ballet dancer, whining still had no place. There were often things to whine about- like bloody toes, kinked muscles, pinched nerves, sprained ankles, broken bones; but, honestly, most of the time we taped that stuff up, iced until the last minute, and got on with the show. If you whined about things, there was a ready solution- she's called an understudy! Self-care, while preached, was rarely practiced very well- if at all. "Grin and bear it" pretty well entrenched itself in my life philosophy.

Now let's add another layer. Bear with me because this is about to get theological, and I'm going to use a lot of Christianese. My heart has twisted some things around- it is, after all, "deceitful above all things." The twisting has gone something like this: If God is in control and has good plans for my life, then I should be able to make it through almost anything without despair. The twisting continues: being sad about how something turns out is simply discontent. And then more: I should be able to make it through anything with a fantastic attitude and ability to always keep my eye trained on God's transcendent plan. I absolutely believe that a lot of those previous few sentences is true. But it doesn't sound very grace-full, does it, to leave out some acknowledgement that things here can really suck.

It doesn't sound like what I say to ANYONE aside from myself. I tell people that God is sad about the tragic things that happen in the world. I tell them that it hurts him that they were abused; that is NOT how he wanted it to go. Yet, when it comes to my own baggage and issues and challenges, I imagine God looking down at me saying, like a parent with a bar of soap or bitter medicine, "this is for your own good." Now, God has said that he uses difficulties to test us and discipline us- and to do so out of love like a good father. He has also said that he has good plans for us- plans to give us hope and a future. He has said through Paul that we can consider our trials light and momentary compared to the riches in store. Paul also wrote that he learned the secret to being content in any and every circumstance and that some things are left as thorns in our sides to show the power of God. I took all that stuff to mean: YOU SHOULD BE ABLE TO DEAL, LADY! That's not what the Holy Spirit was going for, if I may be so bold as to say that. The whole reason we need the gospel (the GOOD news) is that there is, has been, and (not forever!) will be a whole steaming pile of BAD news. The only reason we can have any hope that any of these things God said are true is that he gave us Jesus (who means mercy, grace, and forgiveness to all who believe.)

Gosh, I didn't mean to get off on a tangent about Jesus and how wonderful he is, but that is just what happens when you believe he is the key to life, the universe, and everything.

Back to whining. When I take Jesus and total reliance on him out of the equation, even just on accident and without knowing, then the Bible's words on struggle and trouble change from being sweet encouragement to being impossibly high, burdensome standards. Honesty about struggle and trial become WHINING.

Then there's the fact that someone always has it worse. No one in my family is dying. None of my loved ones are wrongly imprisoned. I don't have any terminal diseases. (Chronic? well, only 4.. but we'll get to that... maybe). My husband has a great, well-paying job. He loves me, is faithful, and encourages me to pursue my interests and dreams.

This is the type of analysis I have been conducting on my life, heart, and history in order to answer these questions: Why am I so loathe to be needy? Why is it so hard to talk about how crappy things have been?

I am a people person. I used to be a bright, fun, cheery person. I was never anxious or anything remotely resembling depressed. I was textbook plucky. I know that my friends and family are all thinking, "awh, you still are!" But, people, you don't know the half of it. Unless of course you were in my life before about 2002, then, yeah, you probably know. But even with what happened in 2002 (see previous post), Brendan and I (and our children) have just completed the most difficult year of our lives to date. I feel like SUCH a different person standing on this side of it. Here's where knowing all that stuff about God and his plans is really beautiful. I can be confident that at my core, different as I may feel, good things are happening. He is going to be faithful to complete work in me. But, gosh, it is so hard getting used to this different skin. I need to finally write about it all. I just did a whole post on most of the reasons I don't want to. There are a few more too: it's tiring! it's difficult for me to think through! and I don't spend much time out of my bed unless it's kid awake time. It will be good to do it though. There's a lot of tangled stuff in my head that needs to get sorted, and I do want you to know what it's been like- what it is still like. Oh, how I want you to know.

I just had to purge all this first. Brendan is out of town, so maybe tomorrow I can get working on the meat of it all.

I'll try not to be too whiney ;)