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I'm chronically fatigued, and chronically nonsensical : )

Tuesday, November 10, 2009

A Little Unbroken

Tonight, I love my job.

Monday, November 9, 2009

Update 3: If it's not one thing, it's another. And if not, you're dead.

Ok, now just a general life update.

I don't remember if I said it in here, but I'm currently working as the High School Youth Group leader for my church, which is pretty awesome. Doesn't pay tons, but it pays enough that I can afford to do it. It's a very new challenge for me, so it's a lot of fun. Very very different than the college ministry that I'm used to, but I'm learning. My kids are pretty fantastic, and hopefully I'm provided them with something good enough for them to be taking something away from it. I don't feel that much older than my kids, but there is such a big difference, mostly just in understanding of the world. I keep trying to put myself back into my high school frame of mind. They are so...fresh, you know? I adore them. But it's a definite challenge. I'm also in charge of the new music group for our new Youth Mass (1st Sunday of each month). That is another challenge altogether because I can 1) sing, and 2) play a tiny bit of guitar. So trying to pull musicians and singers together is all kinds of difficult, because we are all very unexperienced--me at leading musicians, them at leading music for masses. But we are making progress!

Sooo...I work at church. And I'm taking a class at city. And I have no idea where my life is going. Every career path that I considered while doing my undergrad is now off the table. Due to recession/state budgety stuff, my back-up plans are pretty much off the table. I'm now considering back-up back up plans, but I don't even know if those are possible either. So I, Katie Robinson, Queens of Plans, have no plan at the moment. I shall simply wait and see where things go. (Well, not simply, but I'm not going to super stress is what I mean.) I know the Lord has plans for me, "plans to prosper [me] and not to harm [me], plans to give [me] hope and a future." I am not perishing; I am trying to weather this storm. So, we'll see where I come out on this one.

As far as the emotional repercussions of all of this goes ("this" being CFS/planlessness/all number of challenges), I'm going to say: its hard. It's really hard. Harder than I pretend that it is (even to myself). I think I'm still slightly in denial about all of this. I'm definitely past the denial where I felt like I didn't need to tell people about my CFS, but it's still not ingrained in me to think like it's there all of the time. I tend to make plans, and then have to say, "Wait! Maybe I can't do that." A friend of mine recently asked me to be in a movie for his class project, and I said, "sure," only hesitating about what I might be asked to do in this film. Only last night did I realize: I might not be able to actually do the filming when they need it, because that might be a relapse day. It's hard to be so unreliable, both for myself and other people. Frustrating. I try to limit my responsibilities so that I have less room to let people down, but even that is hard for me (it's hard to say no). It's also hard because I have to be very reliant on other people. I used to drive all over and visit people, but now I won't drive anywhere alone (around town is about all I trust myself with, and even then not always). I feel very limited. "I wish...to be free from my gilded cage." I guess this caged bird needs to practice her singing.

To be perfectly honest, Patrick is probably my saving grace. He always felt like a Godsend to me from the beginning, and I saw plenty of evidence of it before, but with this challenge, he is especially gracious. He makes me feel like I'm not sick. Not that he makes me feel better, persay--though, seriously, you can't deny the healing power of touch, especially bear hugs--but it's more that my sickness doesn't matter. There are a lot of things that I can't do and a lot of times that I can't do things that were already planned, and with Patrick, it's never an issue. He never appears to be disappointed with me when we have to change our plans to accommodate my weaknesses, and he's oh-so-so forgiving when my tiredness (or at least I'll attribute it to that : p) makes me a bit crabby (or majorly cranky, as the case may be), which is really helpful in making this bearable. But there's something else, and before I go here I'm going to say that you have to take this with a grain of salt. Patrick also doesn't put pressure on me to get better. Of course he wants me to get better and he chides me about taking my meds and using my oils, but when he asks me, "how are feeling today?" he never says, "I hope you feel better." And I absolutely love that about him. Here's where I'm in dicey territory, because now it appears that I'm not appreciative of well-wishes when that is entirely not the case. I do appreciate it. It's just hard sometimes too. Because right now I'm not better, and I'm not going to be better for awhile. We have to work with the Katie that we have for the moment, instead of always hoping for the better-feeling one. Hopefully I will feel better, but the reality of the situation is that it's possible I won't. So it's nice to have this one person at least who isn't super focused on me getting better immediately. While I know he'd like me to be the healthy version of me, he still loves the sick version of me. <3 And that is incredibly valuable to me. So please please please don't stop telling me that you hope I get better, because I need that support too, for sure for sure. Patrick just helps to take the pressure off a little bit, so that I still feel lovable/valuable as the lower-functioning Katie. : )

This is a weird age to have something like CFS. I have a few friends that like the only way that hang out is at clubs or bars or something...and that's nearly impossible for me. I can't really go hiking. The last time I went swimming I had a serious crash afterwards. My options just keep getting more and more limited in terms of hang out options. Which is why I hang out with like 5 people, because they are the ones that are used to and well adjusted to the "hanging out might mean watching a movie and taking a nap" reality of my life. I'm getting kind of lonely, though. I'm losing my schmoozablity. : ) It's ridiculous, but sometimes it's really hard for me to carry on a conversation with the people I'm sharing a meal with because I can't focus well enough on the conversation. I think I'm turning into an unintentional hermit. Or weird, quiet person who sits in the corner at parties. Either way.

K, I'm tired now. Nap time. Love you.

Update 2: Oh, Canada!

A few weeks ago, my mom and I went to Canada to take me to a wellness center to work with this woman that my parent's met last summer. It was pretty incredible. When I came back after a week with her, I felt more alive than I have in the past few years. Unfortunately I haven't been able to maintain that too well since I've been back, but I'm trying to get myself into good habits. Basically, Janet was helping me to figure out what I needed to work on, and how to do that.

The Plan:

1) Establish a disciplined sleep schedule (regular bed time and wake up time, even when I'm still tired). This has been a particular challenge. Let's just say, I'm working on it.
2) Eat properly/healthily, with a few smalls meals a day instead of 3 bigger ones. And there's a whole thing with alkaline and acidifying foods, but mostly I'll just say balancing foods well. This is still pretty challenging, but I would say that I'm definitely doing better on this one. More raw foods/veggies, WAY less things that you can just put in the microwave. I actually bought and cooked fish one day, that was a pretty big moment for me. Unfortunately, my "busy" schedule (cushy for other people, maybe, but pretty tough for me) makes it hard to plan out food and stuff well. But I'm trying. I'm currently boiling some rice that I'm going to have with a salmon patty, some veggies, and maybe some eggs. That sounds tasty!
3) Nutritional supplements to try to help me absorb enough nutrients, because at my current health state, I am not able to properly absorb business. I do pretty well on those, but I still don't always take them all everyday. But I'm do pretty well. : )
4) Oils (essential oils, blends mostly) to help my body have a chance to sort of "break the pattern" of CFS. Janet says that they help to change the frequency of my cells, to get them away from the frequency of CFS (or, a better way to visualize it maybe is that they help keep my cells from returning to their "muscle memory" positions of CFS). Maybe this sounds bogus, but they help a lot, so I'm just going to go with yes, that's what they are doing. When I was in Canada, Janet would give me an oil treatment every morning after our healthy breakfast, and I always felt AMAZING after those. I would have the energy to go out and see stuff with Mommy. Here, I have some of the oils, but I can't give myself an hour long oil treatment every morning, so it's not quite the same. Need to work on that too.

So, I have things to do, and I'm trying to incorporate them into my life in a way that actually works which has been the challenge, but I definitely know that they make a difference, and I am doing better than before I left. Also, Janet thinks that it might be possible with proper nutrition/supplementation for me to eventually get off of the Atenolol and my body might be able to do what it should again, so that I don't have to be on Atenolol for the rest of my life. I know that right now the Atenolol makes a really big difference for me, so I'm definitely not ready to try to go off of it anytime soon, but maybe after these next six months or something. We shall see.

Moral of this story: I am trying to develop good habits, and am having a bit of trouble actually playing that out. But I'm working on it. : )

Update 1: Table Tilt says "POTS!"

Today it is my goal to update this at least a bit. Let's see how this unfolds:

So almost two months ago now I had a table tilt test at St. Agnes. My cardiologist set it up to test for neurally mediated hypotension (NMH) and postural orthostatic tachycardia syndrome (POTS), hopefully one of which was what was causing a lot of my dizziness/wilting.

This is the test where the strap you to a table, and after lying down for about 20 minutes, raise you up to almost standing position for half an hour and watch what your heart rate and blood pressure do. Long story stort: due to the nature of hospitals and whathaveyou I was in the hospital for over 4 hours (scaring the crap out of Patrick and Tanya who went with me and were in the waiting room the whole time--and my mom who was calling Tanya for updates). I ended up lying down for over an hour, with 2 EKG's hooked up to me (in case one glitched). It was kinda of an awkward test, and I was getting pretty stressed out because my cardiologist kept saying, "everything looks fine," (which was not what I wanted because I wanted something we could treat!). But by "everything looks fine" he really meant "you don't have NMH, you have POTS" which doesn't show up until they put me back down again. So then they had to play with me and put me up and down again a few times to see what I did (but much shorter intervals) which was not super comfortable, but whatevs. But my prize: I left the test with a prescription!

So, I have POTS. Postural orthostatic tachycardia syndrome. It means that my heart rate is too high when I'm upright, and it's actually a nervous system problem, not a cardio problem. My autonomic nervous system doesn't read "upright" properly, and so make my heart rate all crazy. I'm on half a pill of Atenolol a day (and this are the tiniest pills ever, so it's hard to imagine that half of one does anything--but it totally does!) for the next six months, and then we'll re-eval. But it super super helps, meaning: I don't have to lay down everytime I eat something substantial, I can have a conversation with someone while standing up, I can sit through meetings/classes without feeling like I'm going to pass out if I stay in that chair one more minute. Basically: I don't feel like I'm going to pass out all the time anymore. Yay! I still have bad days, but the good days are a lot better. : )