Crappy last few days. Crappy week really. Some days it seems like I can’t get any more tired. How can I be more tired than this? When it feels like all my energy goes to keeping my eyes open. To say that I am not good at allowing others to take care of me would be a rather large understatement. I see myself as a care giver. It is one of the only things I feel like I am any good at. When I cannot do it for myself, much less other people I get out of sorts. A few years ago when I broke my ankle and spent a number of weeks in a cast I was very angry. And upset. I cried a lot. I didn’t know what to do. That situation was different from this. Physically other than my leg I was fine and it was so irritating that it restricted me so much. Having basic sanitation taken away from you sucks. I couldn’t bathe normally and going to the bathroom wasn’t an easy task. And it all happened in a finger snap when my knee gave out. I didn’t even know I had hurt my ankle at first. Thought it maybe got a little twisted when I fell. Nope, busted. Damn. This whole situation is different and in some ways the same. I don’t know that I am any better patient this time around. Better prepared maybe, sort of.
I don’t think that anyone can ever really be prepared for the nasty C word to come out of their doctor’s mouth. Cancer. I knew, that it wasn’t a good sign that day when the Doctor himself got on the phone. Nurses and secretaries and interns can tell you that the results were normal. Maybe that’s part of why they make the big bucks, Doctors. Cause they don’t get to walk away from the hard stuff. They have to steel themselves through the tears and whatever else and try to get you to hear the, “yes but, this is what we’re going to do. Or this is where we go from here.” Once I cried my first and maybe second bought of tears that day, I had to do that. Calling my friends and family to give that news sucked almost as much as hearing it myself. Knowing that I caused people I love to cry that night was awful. And it’s not like there was anything I could do about it. There’s no good way to soften that blow. So many people. The first reaction is then, “ok what’s the plan. Or is there a plan? Or at least you have a plan now.”
There is a list of phrases that I would like to recommend that you don’t say to anyone frankly but specifically to anyone dealing with illness:
#1 At least it’s not ________
#2 It could be worse.
Worse than what? Oh I could have a shittier thing destroying my world right now? Gee that never occurred to me.
# 3 If you’re going to have cancer, this is the kind you want.
Cause I had so much choice in the matter. Not to mention, no! No one wants any kind! Every person who said this to me was mentally punched in the face.
#4 My family member/co worker/ etc has/had a similar/the same condition and they’re fine now.
This one happened a lot. And out of all of the things people said only 3 times was it actually my same condition. And those people actually had helpful, useful things to say because they didn’t offer me it’ll all be ok platitudes.
#5 You will/you need to just kick its ass or the alternative calm version which is “it’ll all be ok”
These are attempts at being encouraging or supportive. These bothered me because you can’t guarantee for me that it’ll all be ok, I really wish you could. And the ass kicking one pissed me off repeatedly because firstly no one ever said I wasn’t going to fight and fight hard, this is my life we are talking about here. But, that being said there’s no ass to be kicked. It’s sort of more like preparing for a battle but it’s going on inside your body. It’s a scary and complicated process, which brings me to the last phrase (at current), which is
#6 At least you have a plan now/ you know what to expect
What? Having a care plan is a tenuous process that involves a lot of testing and waiting and balls being dropped and fragile dr ego and bullshit I have recently discovered. You must be your number one advocate.
You know what to expect. No one knows what to expect from any kind of sickness or illness like this. No amount of reading or talking to people could prepare me for this. I looked up being hypo because I knew that I would have to be as part of the treatment. My wife looked into it. We have a number of friends and family who are medical professionals who put considerable time and effort into helping and researching and finding out whatever I wanted or needed to know. Nothing prepared me for this level of exhaustion effort. There are good days and bad days just like with most things but right now, I am struggling through brain fog to spell words right and trying to beat the exhaustion that is making my hands go slower and slower. Earlier this evening I broke. I cried all over my wife’s shirt because I’m just so frustrated and tired. And yeah I knew this was coming but there is only so much planning you can do for when exhaustion meets depression and illness in a huge trifecta of crap. I am lucky. I am not a lone. There is literally someone here to hold my hand if I need it. Today I did. I feel like the fog has stolen my point away again as it has done so in the past and probably will again. Planning and coping I guess. We do all we can. But you fight, the exhaustion, the indifference, the everything because it’s my life.