But something I hadn’t thought about while filming, editing, or when I set live was that right now I was in a situation where I was feeling decidedly unpositive about an area of my life I had mentioned a few times in the video: my health. I have been fighting off a gargantuan flare, it’s dragged on weeks. Everytime it looks like I’m turning a corner it seems to have been merely an illusion or maybe a bad prank, whatever way you want to look at it this past bit has been hard. Real hard. Where the chemotherapy, while not fun, didn’t seem un-doable, despite the rollercoater it made my week ofside effects, better health, and then receding health as the end of the ‘chemo week’ approached. But I could feel things improving and it made it easier to tolerate. I was keeping my eyes on the horizon and it made it seem all the more bearable to endure that in the moment.
However as the weeks have been dragging on, where my symptoms seem to barely abate before the next wave of this disease trying to ‘get’ me, my weekly injection has been something I have been dreading more and more. In the throws of all this it’s easy to forget that not that long ago things were looking a lot brighter. That seems to be the thing about bad things (at least in my life), it makes it easy to forget that things were once good. And the longer things tend to drag on the easier it is to feel that.
When the comments started showing up with people saying they were happy I was feeling better I wanted to kick myself. It was probably not what I needed today. The last 48 hours or so have been ridiculous here and it has left me feeling pretty down about the whole situation, very alone, and feeling like I don’t know how I am going to manage this indefinitly. Of course right now I only need to manage it for today, or this week, and then as the week progresses next week, etc. The reminder that I had been feeling so much better felt like a neon sign telling me I was never going to get out of this hole (or what sometimes feels like a hole). But as I started trying to decide how to deal with today, I realized how nice it felt that the comments that were there were people saying they were happy I was doing better, and trying to reinforce the (even small) positives I had mentioned. It’s nice to feel that. So much of this week I felt like just screaming into the abyss, or rather posting on twitter just how crap I felt, how crap this whole situation is. But I knew that would still never give me what I was needing, as there isn’t a number or an amount of sympathy or platitudes that are going to fill the space that my ill health has left in my life. It’s lovely to have people to commiserate with at times but I knew it wasn’t going to help me the way it seems to some and it didn’t seem worth the potential worry to others. But sometimes it’s difficult to not want people to tell you it’s ok that it’s hard and tell you they’re thinking of you. For although it is just words sometimes it makes those tough days a bit easier when you feel like you are a bit less alone in it all.
In my head I know there is a way forward through this. In my head I know I am better off to have the chemo in my life than be without it. It’s just hard when it doesn’t feel that way anymore... at least not at this moment. The weeks the chemo isn’t working well enough are the hardest weeks to do the chemo and yet decidedly the last week I can let up or get distracted when it comes to managing my illness. For anyone who has read this far. Thanks. I hope you are having a great weekend and next week is even better (for all of us)
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