This is an older post from my private blog that kinda encompasses how I feel today and the last few. There is a different aspect for today, but that's not for a public blog (much to private family matter) that I wish I could feel comfortable being exposed in talking about..maybe when it's resolved...
From September....
I feel so isolated anymore. I'm a prisoner of my own body and it's slowly stealing my mind and what's left of me. I feel like I'm a shell of who I used to be. I feel like this will never end and will only get worse. And the stupid part is, I'm right. It's not just a feeling, it's a fact. This monster in me just keeps taking over and the only hope I have is to slow it down because it can't be stopped. It will slowly kill me over the span of my life, and it will be the slowest and most painful death imaginable.
It's this stuff that reinforces my questions about a higher power. Some divine being that "tests" us. What's left to test? My faith? I have none. My strength? I am a strong person, I learned to be, but this is shaking even that. Being strong is exhausting. What's the point of this whole damn thing? Let those that love me and are around me see me struggle through each day and suffer? How is that fair to them? Hoping that this doesn't pass down to my child? This isn't the life I want for me, and especially not my child. I guess people could say that it will teach me what my limits are. But it's pretty sad that a lot of days my limit is actually rolling over in bed, but I have to somehow manage to get out of it and be a wife and mother, and even those - I fail at. Hell, I can't even manage to be a friend anymore, because I'm too exhausted by what's going on with me. Do you know how exhausting it is to keep on subject in a verbal conversation for more than a few minutes? Could you say I'm depressed, probably. Could you understand it if you thought about it, probably.
My husband is sooo far ahead of where he was a year ago. He still struggles now and again, but I can't expect him to be perfect. We both struggle with my illness. I live it day to day and he has to watch me "live it" day to day. I can't really imagine what it must be like. Let's use today as an example. We had an appointment at 1030 this morning, my husband starts working on waking me at about 845 so we can leave at 10. Notice I use the terms starts working on. It was about 945 when I could actually get my wits about me enough to get going. I have 15 minutes and a growingly impatient husband (not that he's displaying it, but he's a man that likes to be very early) I shuffle to get a yogurt container and work on eating that while I pull out clothes that would be okay for the day. I'm the the up side of my weight yo-yo so it's looking for stuff that doesn't make me look like I'm looking bad and choking down my pills. I'm finally ready to go at 10. I give him snippy directions that he ignores because he googled it to avoid me needing to do it because I'm *incredibly* absent-minded anymore. So he goes on his way..we get there and he realizes he got the time wrong and we rescheduled. We get back to the vehicle and I can barely get into it because it's too high (it's a temporary one) he offers to pick me up and put me in it since I have to lean way back into him because my hip doesn't allow my leg to go up that high very well or easily. I snap at him "NO!" and he snaps back, don't snap at me please. Well, I can't stand the thought of me losing my ability to do stuff on my own and I don't like him offering to do things like that. I want to ask. People probably think that I'm a bit stubborn and I should be appreciative of my husband. I am both, incredibly. Stubborn to a fault and I have an amazing man that I'm married to. I do have to say I didn't argue with him when he lifted me out of said vehicle.
It was all I could do to say somewhat coherent so I could make sure my son got in the door fine before we locked it up and I went to sleep until the eldest child got home from school. That's another incredibly helpful person. That kid can give us problems up and down, but when he knows I'm having a hard time - he steps right up to help out with the little one.
My most vulnerable moments are always when either a) my husband is physically far away from me or b) he's emotionally distant. The emotionally distant doesn't happen very often anymore at all. Right now, it's a matter of he's been gone from nearly 11 hours and is still on his way back home. He'll be doing the same thing tomorrow, but I'm having a really hard time right now and him working is just not working for me.
On top of the AS and on top of the Fibromyalgia and the insomnia and extreme fatigue, I now have a complex mass in my left ovary. It may be a bleeding cyst, but who knows what it is. I guess I'll find out more next week at my appointment. But one thing for sure it that it will require surgery. That is terrifying. My last surgery, the boob one - threw me into a nasty flare up for a few weeks not to mention that my arms hurt like hell because I guess they held me strapped down or something. This surgery seems more..invasive than a boob cut. Which means I may have to stop my meds for the AS which is a bad bad thing. This last development has officially pushed me over my limit. I can't do this anymore. And you know what? I have to, I don't have a choice not to. When you're a wife and mother, the choice is implicit, you gotta find your happy face and do it anyway. But it's trying, incredibly trying.
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