The pitfalls of hope

I wrote this in the middle of the night a few days ago. I wasn't going to post it, because usually things I write in the middle of the night are either incoherent or excessively maudlin, but I read over this tonight and it doesn't seem too bad! Feeling way more positive now either way. 

I am sad.

That seems like a stupid thing to start a post with. My goal has always been to make this a positive place. When I started this blog, I knew I was taking something that was my own personal journey and making it public. I don't think I could have put into words at the time why I wanted to do this. I think I had an idea that perhaps it would help other people, but also the idea that it would help me too. I've always been one of those people who narrates their own life inside their head - I say that like I know for sure that other people do this. I don't really. I guess I just assume that if shows like Scrubs and Grey's Anatomy are anything to go by, there are other people out there with a voice over inside their head trying to make poignant conclusions out of the random things that happen to them. Or at the very least conclusions, without the poignance.

Right now, it's the middle of the night. I got out my computer with the hope of putting my insomnia into productiveness by working on my latest novel project but instead I ended up writing this. Because I am sad and I am frustrated and in the middle of the night there aren't that many people you can say that to.

I read something on someone else's blog recently about how the author felt she may have exaggerated her illness, not to her doctors but to herself. I do this. I think we all do this. In the middle of the night, when the pain is bad, or if my body has become rebellious in some other way, I panic. I feel that this is the end. I have lost the use of that limb, and normal function will never return.

Tonight trying to open a jar of peanut butter, left me screaming in pain. I paced back and forth in the kitchen, clutching my hand and shaking, trying to fight back the nausea and tears the pain had induced. And then I cursed myself for being so melodramatic and laughed a little too, at how ridiculous it would all look if anyone were there to see it. Eventually I managed to open the jar with a pair of scissors, which made me feel a disproportionate amount pride at my own ingenuity.

This isn't why I'm sad. The pain in my wrist eventually eased, and I could laugh at my own panicked belief that it wouldn't. I thought of the icepacks in the freezer, the splint in my bedside drawer, and all the other back up plans that I have in place but that seem so far away in the moments I need them the most.

And I started to feel a little more positive. And I started to let my dark sense of humour construct the event into a funny story I could tell someone later if I chose.

Mostly I am fine with the way things are. I was going to say I hate the fact that I'm sick, but I don't know if that's accurate. Hating something takes energy and I'm not sure I even give it that. I manage being sick. Sometimes I panic. Sometimes I cry. Lots of times I laugh about it. And all in all it's okay.

And then something happens that give me hope, and that kind of messes things around for a while. Don't get me wrong, I have hope all the time. I have hope that I will achieve things despite my illness. I have hope that each day will be a happy one. I have hope that my life will be a good one, whatever it is that that means. But I don't have hope that my illnesses will get better.

To me, having hope that my illnesses will improve or go away means that I put my life on hold. Even if it's not what I intend to do, it's what happens. Why force myself to get out of bed and do something now, while I feel so ill, when I could wait until I am well and do it then? I have to have the belief that this won't get better, because I have to believe this is my life and live it like I'm not going to get another chance.

The reason that I am sad and frustrated is that recently I let the wrong kind of hope sneak in. Even though I tried not to, I let myself believe that in seeing the specialist and having some tests done, there might be an end to my stomach problems even if everything else stayed the same. This wasn't just a naive optimism on my part; at least I don't think it was. I knew very well the tests may not show anything - in fact, I had a strong suspicion they wouldn't. What gave me hope was the assurance from the specialist that even if the initial test showed nothing, there were steps we could take to improve things. Even if the end diagnosis was not one of "disease", but just of "dysfunction without known cause" there would still be a course of action to take.

It sounded so reassuring. I felt relief that I would have a direction at last. Even if it wasn't a cure, and the likelyhood was that it wouldn't be, I would at least know what I was supposed to be doing instead of just fumbling around hoping that I at least wasn't making things worse.

So the tests didn't show anything. I was prepared for that. But I wasn't prepared for the fact that I found this out in a letter, which I didn't totally understand, and did not include the promised plan of action. I wasn't prepared for the letter to talk about "part of the bigger picture" leaving me wondering if this was a reference to my medical issues which I didn't understand, or an pseudo-philosophical comment. I wasn't prepared for the fact that I actually don't know what happens now. And I wasn't prepared for the fact that all this not understanding makes me feel stupid and scared to ask.

This is where I'm at right now. Sad and frustrated. I should say, none of this is really a comment on the specialist in question. I do wish he had phoned me with the test results, as he said he would, rather than sending a letter. I don't think I would be this confused if I had had the opportunity to get clarification, but I would probably still be sad because I had let myself hope for that "better" and that was probably never going to happen.

I do know these feelings will get better. I know I will let go of that hope I was feeling, and I'll go back to feeling okay about how things are and not trying to force them into the picture of something I wish they were. I will laugh about this, and tell stories about this. I will go back to being okay about making my own decisions about how to try and treat my diseases, and stop hoping that someone else will tell me how to handle it.

Perhaps I will post this rant on my blog, or perhaps I won't because I will decide that it's all a bit overdramatic. Either way, writing it has helped me come to an internal-narrator conclusion worthy of Scrubs or Grey's. Maybe reading it would help someone else know that it's okay to not be positive 100% of the time. And that would be another conclusion in itself. For now I will sleep, and all going to plan I will wake tomorrow with the kind of hope that is good for me. The hope that tomorrow will be a happy day, and that I will have a good life. Illness or not.

Thanks for reading,

Little Miss Autoimmune.