This morning I woke up in pain so bad I couldn’t move. Yesterday my body agreed with me. Today it rebelled against me. It’s a level of frustration I can’t always put into words. Sometimes I think it would be better if I was incapacitated all the time – at least I would know what to expect.

That’s all kinds of fucked up, isn’t it? To wish for an illness that was constant instead of one that comes and goes? They say I’m lucky to have the “good days,” but sometimes I wonder. Yeah, it’s nice to have good days, but they aren’t really good, they’re just days where I’m able to do most of what I want to do without too much pain. The problem is, the good days ALWAYS lead to what I call “punishment days.” The days like today when I am totally debilitated and all the plans I made to continue what I was doing on my good days are out the window, which makes me feel like a waste of oxygen.

At least if every day was a bad day I’d know what to expect. I could learn to adjust myself to the pain and limitations. Instead I spend my good days doing all the things I want to do, feeling like “hey, maybe it’ll last this time,” only to get the rug yanked from beneath me. I fall flat on my ass while every nerve and bone and muscle screams out for help. While my mind tells me I’m useless, to “buck up,” to get up and do things – it’s not that bad.

So not only do I spend my bad days physically immobilized; I also spend them feeling overwhelmingly guilty for it – and then projecting it onto my husband. Bless him, he takes it – and he takes care of me. It’s a terrible, terrifying feeling – uselessness. It takes away every last ounce of pride and dignity and leaves you in a pile of humiliation and doubt, tearful and tired and helpless.

I try to focus on the things I can still do when I’m in that state – but to be honest, some days there isn’t much I can do. The pain makes my vision jumpy and blurry – which then makes my headache worse and causes nausea, like seasickness – which then leaves me with only one option – doing nothing but sleeping. See? Useless.

Not every bad day is THAT level of bad. The intensity of the awfulness of the bad days is in direct correlation to the number of good days and the intensity of the things I did on those days. Could you imagine having to decide whether to spend the day walking around museums or a park, knowing the trade off will be a physical and mental depression so deep it could make your soul hurt? Welcome to my life. Living, anecdotal proof of the phrase “take the bad with the good.” Because every single good thing that requires me to be physically or mentally active in any way is followed by the infliction of pain by my body and mind. Everything has a punishment, a price. Every stitch of fun has time limit that ends with the inability to function for a period of time. Every. Single. Thing. There is no simple joy, because every joy, every passion, every action, every bit of living is not only temporary, as it is for everyone, but it’s also sin – a sin for which the penalty is gut-wrenching. Try, for one moment, to imagine how that feels.

It’s exhausting; so very exhausting. Down to the core. Down to the soul.

I don’t know how much longer I can do it.