Yes, Pain. Not discomfort. Not just a bit achy. Severe, unremitting, endless pain.
Pain prevents rheumatoid arthritis patients, or at least those with moderate to severe RA, from doing many simple daily tasks. Like doing up buttons. Like opening a jar. Like walking…
Sometimes I can physically do these things. It’s just that it hurts so incredibly much to do so, that I choose not to. But is that really a choice? Does this mean that I can’t do it, or does that mean that I just won’t?
It means I can’t. If the pain is so great as to prevent a person from doing something, they can’t do it. Period.
Should you do it? Hard to say. Some people subscribe to the ‘push through’ or ‘use it or lose it’ mentality. I do that when the pain is mild to moderate. I go ahead and do whatever I need to do that day, and I don’t usually complain. I don’t usually show it. No one around me would be able to tell that I am in considerable pain. Because RA pain is invisible, and of course pain itself is subjective.
I have said before I wish I glowed red or purple or some other colour when the pain is bad, so people have a finate way to guage what I am feeling. Inarguable evidence, because clearly my word is not good enough.
Not so that I can get sympathy.
So I can get some understanding.
So that people might realise why I am moving slowly. Or why I’m a bit quiet, or why I’m a bit down today. Or why I don’t want to spend hours shopping.
Or why I don’t like their big dog jumping all over me. Or why their child hitting me with a toy baseball bat is not at all funny. Why I can easily lose balance and fall…and why that landing will hurt me so much more than most people.
When the pain is severe, I rest. I don’t see it as a choice. It is not a choice. It is exactly what RA does – it takes choices away from you. Whatever needed doing that day can’t be done. It doesn’t matter if I am out of milk. I have to go without. My kids have to go without.
The pain is so all-encompassing that even when I am lying still, it remains. RA pain is not pain that happens on moving a joint, it is always there. It is never gone. Some days are better than others, but I always have joints that hurt to some degree.
When it is severe, I am incapacitated. Pain causes fatigue. Just dealing with pain day to day is exhausting. It’s like you’re using half of your brain power just to block out the pain. You are constantly doing things to try and shift the focus. Your brain is constantly engaged in that struggle.
When the pain is extreme, you can’t think of anything else. You can’t ‘take your mind off it’ …try to work on the computer. Or watch a movie. Or read a book. You can’t concentrate on anything. You can’t follow the plot. Your entire world is the small space around you, and you protect that zone. Even someone trying to give you a hug, or a reassuring squeeze of your hand can cause renewed agony. It’s well meant, but it can make things hurt worse.
I am not overstating the case.
The pain of a Rheumatoid (or other inflammatory) Arthritis flare is well acknowledged by the medical community as some of the worst pain there is. People ask me occasionally what does a Rheumatoid Arthritis flare feel like. This is what a flare feels like. Some people have flares every few weeks…or every few months. Some people feel like this every day. Some people with very mild RA have never felt this. But they live in fear that one day they will.
This is RA. Pain.
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