Today is definitely one of those days where everything just feels slightly inclined to sadness. Everyone’s blog entries seem low, it’s grey outside and I for one feel like a left out soul. Mr F’s off at band practice and I’m sitting here. Like I do everyday. The fatigue is absolutely kicking my ass from this week but there’s a real difference between being sleepy and being exhausted. Sleep helps one but not the other. I could really use some caffeine right about now but since Mr F isn’t here I’m pretty much stuck with things in this room (the kitchen is downstairs and I cannot manage the stairs even on the best of days). And unless I munch on coffee grounds, I’m out of luck caffeine wise. I absolutely hate that because of this week’s craziness I have to cut back on next week. And that because I have to cut back next week, I totally want to go do lots of stuff today. Only I’m not up to it.

Friday Sky

Sometimes I get very sad about being sick. It’s not fun or what I wanted or expected and the worst thing (for me) is that I’m not mentally depressed. I suffered from depression when I was at university and the difference really is night and day. Being depressed I couldn’t mentally get up enough ooomph to do anything. Being sick I am mentally ready to go do a million things but my body won’t cooperate. I spent my entire life taking my healthy, working body for granted. And now I don’t have it. And that makes me angry and very, very sad.

I hate being sick. I hate being unable to make my own food, to drive, to just get up and go do stuff. I hate being pushed around in a wheelchair when I’d rather be running. I hate having to completely cover up if I’m going to be in the sun instead of lying under it and soaking up the rays. I hate always being thirsty, I hate having dry, painful eyes. I hate hurting for no reason. I hate fatigue with every fiber of my being. I hate that there is no cure, I hate that I am staring down the barrel of the rest of my life being like this (or worse). I hate that I had to give up lots of dreams and plans and hopes. I hate that everything changed and that I can’t control any of it. I really hate that I can’t control any of it. I hate that I can’t force myself through the pain and fatigue to just do it anyway. I hate that people don’t want to or cannot understand that I don’t like this one single bit. I hate it.

But I have a choice, don’t I? Something I can control. It’s called pacing. Don’t do too much today in the hopes that come Thursday when I have a dentist appointment I’ll be able to function well enough to get there. Rest when I am fatigued as opposed to trying to ignore it and then blacking out or falling down and hurting myself worse (which I did lots before I learned that brick wall fatigue in the face means stop now or else). Don’t spend all my time and energy chasing up everyone’s idea of the magic cure. Find what works to get even a smidgen of normal life back (like the wheelchair and medication that helps but does not heal) and deal with the waves of antagonism and lectures on giving up. Do you know there are some people in my life who are convinced that I like this way of living? Can you imagine? I sure can’t.

This is how I am feeling today. I hope you’re feeling boatloads better.