Damned Disease

I’ve been in pain lately. Well, there’s always some, but we’re talking a different kind, a different quality of it. Quite loud. Pervasive. Distracting. There is too much pressure everywhere. Sitting quietly, not moving hurts. On the other hand, moving hurts, too, maybe even more than sitting still and not moving. Lying down hurts. Only when I knock myself unconscious with a large dose of drugs does it not hurt, but even then, sometimes the pain wakes me. This is the type of pain where really, all you can do is sit and whimper. Or if you do something, which if you’re me, you’ll be wont to do, as being both in pain and not getting anything done makes it worse. It’s the giving in to the blasted thing that I can’t handle and that’s symbolized by the decision to do nothing but be in pain and get through the day. That’s too close to giving up and giving up is not an option.

It all started early last week when I wasn't sitting right (cushion issue still hasn’t been solved. Verdammte shite). Nothing quite managed to fix what was going on and then I had a seating appointment where I moved in and out of my wheelchair more times than I can remember, wiggling around, trying to figure out the various cushion options were comfortable, sitting in the last adjusted seat for a couple of hours to see if "I could get used to it". And that's when I officially lost the battle, got so far behind the pain that there was no catching up.

Pain’s a funny thing really. The way it creeps into your bones, into your muscles, into every single part of you, oozing through every nook and every cranny it can possibly find, seeping through the walls of every cell, taking over. Permeating. Colouring every moment with a damp, gray heaviness that weighs you down, drags you under. And the longer it's there, the deeper you go and it doesn't take very long before it seems as if you have had that kind of pain, the life-stopping kind for as long as you can remember. That even though you know you felt pretty good 10 days ago, you can no longer remember what that felt like and there’s a big part of you that questions whether or not it ever happened. Maybe it was a dream.

I've had two doses of Humira so far, smaller doses to start with as I am very thenthitive and they worked like Enbrel did - instantaneously, miraculously. But since it was smaller doses, I wondered whether the recent change in the quality of the pain that snuck in this week, the way I started feeling soggy, was because my immune system had gotten the upper hand again. But I haven't been nauseous and usually, that’s the way it announces its presence, so I assumed that it was the way I sat, the effects of the storm we "enjoyed" yesterday (it's official, Rachel H., I've had enough) or maybe that the Accursed Neck Injury got provoked the other day. There are many reasons and maybe a combination of all of them made this happen.

And then it all became clear last night. When one of the knuckles on my left hand started swelling, reddening, getting warm. It started in my forefinger and 3 hours later, all of them were puffy. My instinct was right. It's the damned disease coming back. And whereas on one hand I am grateful that my immune system is apparently very strong and stubborn, on the other, I wish it would just shut the fuck up and stop reminding me that I have a disease. Stop rubbing my face in the fact that my life is not my own. That I am dependent. Not just in the sense that I need a crutch, so to speak, but that my life - my actual physical life, my daily life - depends on finding a medication that works, works for as long as I need it to work and that doesn't make the rest of me feel too shitty. Because I will feel shitty in various ways, but as long as it is manageable, as long as it doesn't outweigh the benefits, I'll have to live with it. And some days, that really pisses me off.

Somebody suggested that I have 'a good cry' and I think I want to. Maybe I even need to cry. But I can't. A long time ago, I learned the lesson well: crying doesn't change anything. Every time I feel like I want to give in to the tears, there is a cold little voice somewhere in the back of my head that says "what's the use?", the icy fact echoing mercilessly, cutting through the salty, soggy build-up, laserlike, cauterizing, drying the tears before they fall. And so I don't cry. Because that cold little voice is right. Crying will not help, crying will not make the pain go away. Crying, I fear, will only break the dam and the way I'm feeling right now, I don't know if I can stop once I let go. And when it doesn't help, the crying, it feels too much like giving in and I know - or at least I think I know - that I am holding it together just barely by pure willpower and letting go, letting the tears come, will be like giving up. And giving up is not an option.

I’m going to try to get an appointment this afternoon to get another shot ahead of schedule and if I can, know that the fluid in my knuckles will likely disappear, that the rest of me will simmer right down and the depression, the desperation will lift. And I resent that, too. That my mood, my capacity to cope is ruled by this disease, too.

Sometimes, I hate this damned disease.


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