It is, of course, a biological necessity that we, as humans, forget physiscal pain. We can remember easily heartbreak. Also, mental and spiritual pain. But, not physical pain. We forget it so that the species can multiply. This is the victory for us. The victory that keeps our species afloat.
I have had very light and manageable symptoms for several consecutive months. Some fraction of this is due to action I have taken. The rest is out of my control.
Yesterday, I could barely walk and had to resort to using my wheelchair for the first time in about 3 months. The pain I felt seemed brand new, like I had never felt it before. Like something new must be wrong. This is the defeat. I am forced to remember that this pain is my NORMAL. I am guided by the Holy Spirit to thank God for the few months of relative relief and assured that I know how to carry this burden. Of course, I don't want to. But, that is neither here nor there. And so, I go through my day that day trying not to feel confused about what is occurring. My moments of clarity are just that, brief 5 second intervals every few hours where I can wonder what has happened to me today. But, the clarity is gone long before I can verbalize my distress over it. My brain is coated with a very thick layer of vanilla frosting. Impenetrable. I can't get through it to the info I know is there.
I'm relatively proud of myself about halfway through the day because I have not let the pain change my mood much. This really is a victory. And here is another defeat. Other people, people close to me who know about my health, ask why I'm in pain that day. As if the months of lighter symptoms mean a cure or some healing or something. As if I did something to bring on the layer of frosting on my brain. As if there is always going to be an explanation for every time I can't walk. It is incredibly frustrating and distressing to feel like I have to explain to others, who aren't living in pain, what is going on in my body. The simple facts are that medical science doesn't really know what is going on in my body, so how am I supposed to answer the WHY question? Yes, it is true that I do try very hard to control what I can control in my lifestlye, diet, associations, household chemicals, emotional support, etc. I try VERY hard to prevent symptoms from on-setting and especially from getting bad enough that I want to turn to tranquilizers to get through the rest of the day. But, I am not able to control all of what happens in me. And on days when I can barely think clearly enough to brush my own teeth, to have a relative say, why Marie, what's going on? is infuriating.
So, today, when symptoms are lessened a bit and I am thinking, I pray that the Lord helps me to inform folks that I have not brought this on myself and it is important not to imply such a thing, especially at a time when it would be so easy for me to turn to self-pity and depression. The things to be saying to me on those days are, you have gotten through so many of these days so beautifully. Let's say a quick prayer that tomorrow is a bit better for you. Anything like that. But, don't ask for an explanation. I don't have one and I don't know if I ever will. I'm not sure how to get this message out to them. I'm not sure they will even listen or care. But, it is a way for me to advocate for my own welfare, my self-care. I need to figure out how to help them know that just because I haven't complained for a few months does not mean I'm now well. I truly do try to make the most of every second that I feel relief from pain but, I should not be put in a position to explain myself when pain returns. JMHO. It's demoralizing.
Grateful to God that this too, will pass. A distressing situation. Sometimes constant pain seems like it would be preferable in that it would be easier for others to understand me. But I would never wish that, not on anyone. God understands me. My husband, too. A very small handful of others. That is enough.
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