yeah i know it's been a while...

Yeah so I know it’s been a while…I had a doctor’s appointment last Wednesday and I switched my meds so we’ll see how that goes…the idea is to lessen the exhaustion that I’ve had for the last month or two. But since they switched my headache med I’ve been having a headache it’s almost constant in the evenings and lessens during the day usually.
The deal with the other headache med is that it was practically knocking my out…and then I took a vitamin about three times and it made me feel like I was on drugs…everything was like whirring around me and I felt stuck…and I felt like I was going to fall over all the time and I’d rock back and forth and side to side without intending to. It was weird…it was like being on drugs but also being completely ‘with it’ the whole time…like experiencing the effects of drugs while completely conscious. I mean lately I’ve felt really spacey all the time but those times were different.
Anyways, so it’s really, really hard being at school while trying to regulate meds and deal with the side-effects at the same time. I feel like lately I’ve just kinda been going here and there to classes and meals…sometimes just to meals…and I’ve not really been there…I mean physically my body was there but mentally I’d never really woken up…like I was just doing things for the sake of doing them without really paying much attention or really even caring. I’ve felt that way before but it’s been quite a while and I never liked that feeling. I mean God didn’t put me here to just float around and get the job done so-to-speak…He put me here to live my life for Him and that’s been the problem in my life lately…I’ve more recently realized it but all of your normal people have other normal individuals to whom you can turn when you want a role model but who can I look to…not someone normal…I need someone who’s been through what I’ve been through whom I can identify with…someone who’s been living their life for Christ even during the constant pain and switching meds and all the other bothersome things that go along with fibromyalgia and Chiari malformation and syndromes like them. That’s what I need in order to really help me grow while feeling so smothered by all the things I go through that I feel like I can hardly breathe sometimes just because of how big a load I’m carrying. That’s why I’m posting this song…the lyrics are great…the message is clear…and I understand the feelings mentioned in it…maybe to a different degree or with a different perception but I understand them.

JJ Heller

Your Hands

I have unanswered prayers

I have trouble I wish wasn't there

And I have asked a thousand ways

That You would take my pain away

That You would take my pain away

I am trying to understand

How to walk this weary land

Make straight the paths that crooked lie

Oh Lord, before these feet of mine

Oh Lord, before these feet of mine

When my world is shaking

Heaven stands

When my heart is breaking

I never leave Your hands

When You walked upon the Earth

You healed the broken, lost, and hurt

I know You hate to see me cry

One day You will set all things right

Yea, one day You will set all things right

When my world is shaking

Heaven stands

When my heart is breaking

I never leave Your hands

Your hands

Your hands that shape the world

Are holding me, they hold me still

Your hands that shape the world

Are holding me, they hold me still

When my world is shaking

Heaven stands

When my heart is breaking

I never leave You when...

My world is shaking

Heaven stands

When my heart is breaking

I never leave...

I never leave Your hands

I’m pretty sure that I have asked a thousand ways for my pain to be taken away…I’ve been trying to understand a lot of things…my world has felt like it’s shaking for a long time…my heart has broken (not over boys, come on people that’s the last thing I’m worried about right now) my heart has broken when friends have hurt me or when I lost my dad or when God did things or allowed things that I just didn’t understand…but I like the part where it says “I know You hate to see me cry/One day You will set all things right.” That part is something I identify with because I hate seeing others cry but I cry myself to sleep all the time…but I really like how it says that God hates to see me cry and that He’ll fix things in His time. I wish I knew His timing better but I guess I’ll have to wait this out and see…He’ll clear up the confusion when the time is right. I can think of countless times when I’ve cried my heart out asking God why I have to go through this…why me…and I’ve asked why I had to lose my dad…why highschool has to be so awful for me…why other things have happened…and I’ve never gotten any answers yet but I’m gonna keep going as best I can and if I fall…well then that was planned too I guess. I feel right now like I’m really close to falling…like I really don’t have the strength left…like I’m too tired to keep going and somehow I wake up the next morning or afternoon and I’m still alive and kicking even though most days I don’t even know how. I’ve been so tired lately that going to one meal and then coming back wears me out…like I trip up and down the stairs is all I can take…and it’s not like they actually let us part close to the class buildings or anything like that…we have to walk what seems like 5 miles all uphill to get to class…and by the time I get there I’m so worn out that I can’t really pay attention in class which makes going to class seem pointless. And that’s why my roommate said to me tonight that she’s thought that I’ve seemed out-of-commission lately and tonight I was able to have a little bit of fun which was really good because as of lately it hasn’t been happening too much…mostly because fun is only fun if I don’t have to pay for it later and most people’s kind of fun hurts me a lot and doesn’t bother them at all…which is totally not even fair…but even beading which is something that one of my friends in Fort Wayne likes to do is something that I really can’t do much anymore because the beads are so small and I’m really super clumsy and I’ve even had trouble changing my earrings sometimes just because they’re small and my fingers are clumsy. And then there’s bowling which theoretically shouldn’t be that hard but my hands get tired/weak and voluntarily release the bowling ball whether or not I’m close enough to the lane and not necessarily in the right direction…this happened last spring and it only made sense to me finally tonight when I realized that now in the DC if my plate gets too heavy or if I’ve been standing holding it for a minute or two I sometimes almost drop it because my hands/all of me gets weak voluntarily and I can’t always force myself to not drop things because it all depends on how heavy they are. But all of these things have just been bothering me deep down inside for a really long time and I really just needed to get them out. But really there are a lot of things that I have trouble with anymore I can’t warm myself up very easily if I get cold or cool myself off easily if I get too warm…like walking around campus makes me sweat so I don’t get too cold but then I get so warm that I can hardly cool myself off again. I can’t do my laundry by myself…I can’t really drive myself places very much because my meds mess me up so much…I have to keep my meds in a weekly pill sorter type thingy or I’ll forget whether or not I took them…even simple things require way more energy that I’ll probably ever have ever again. And this even effects one of my childhood dreams and fibromyalgia and Chiari themselves can have bad effects and just all these things have been hitting me in the face so-to-speak lately and thus I’ve have a rather difficult last week and a half or so. If this doesn’t make sense it’s because it’s 2am and I have a bad headache again…and now I’m supposed to try to sleep…have you ever tried to sleep with a headache like this? I don’t think so! And don’t bother…anything touching your head will feel somewhat like a drill going into your head slowly with the whirring noise to help make it more realistic…sometimes I’ve even really thought that I heard a whirring noise but now I think it just seemed like the appropriate sound effect and popped into my head at the same time the headache did. Ok well I think now I really need to try to do my devotions and then try to sleep and hopefully my headache goes away by then…otherwise I might just go crazy. More updates to follow.