Have you ever had a period where you thought you were going to die? Really, I mean die. The pain was so intense that you figured this was the ultimate/ Nothing could be worse? Then it got worse?
Its difficult to quantify the pain I experience with PCS. Many people have said to me ” nah it can’t be that bad” or “that’s all in your head”. They say this because they cannot fathom pain to the extent of which I speak.
Let me separate the pain into sections: back, legs, pelvis and periphery.
I have constant lower back pain. Interestingly enough I’ve had this issue for years before the PCS diagnosis. I always knew it was tied to my pelvic pain but couldn’t quite figure it out. I realize how acutely aware of the model and make of chairs I have become. I examine each chair as though it is on trial for murder and I am the prosecuting attorney. I know all about the slant of the chair back, the angle of the seat and arm rests, whether the two together will make a right angle and have the sitter upright or not. Most days I sit with a back rest to ensure that the angle at which I am sitting is one that causes least pain. When the back hurts sitting, standing, lying down…its all problematic.
My legs get weak and feel as though they are going to give out beneath me. There is a radiating pain through each leg that causes me sometimes to just stop walking or moving for fear of falling with the next step. This happens most often at work when I am moving from one point to another and most times in the afternoon. I literally stop and stand in one place; most times against a wall; and pretend to be looking at something so I don’t look totally weird just doing nothing.
The pelvic pain is akin to childbirth contractions. The difference is that I knew the contractions were for a time. I was not going to be in labour forever. Just as its near impossible to walk around as contractions intensify in labour, so its impossible for me to move when the pain intensifies. There is really no first day vs third or fourth day pain; its all the same. Cramps akin to contractions that cripple. Without some pretty strong meds I am confined to bed, need assistance with walking or moving. just lying there in a ball.
The periphery is everything else. The headaches, nausea, mental fog and confusion. Put all of the above together and most days I am of no use to myself or anyone else. The thought alone of doing is too much. My children look at me and say “mummy is ill again” or “mummy needs a break” and just go on about their day.
My doctor would usually ask me to rate from 1-10 with 10 being the worse. Actually he can look at me and see 10. That’s when my husband all but lifts me into the office. 8-9 I can walk in albeit slowly but still need the intravenous meds. Most days I am between 4 and 7, I can live at 5; there’s some pain and discomfort but it’s controllable with meds and not too many. The pain never goes below 3, so 3 for me is like 0. Its been this way for a long time now. I accept it…which is not necessarily a good thing…I guess…… but there’s a thin line between being resigned to a reality and being hopeless. Sometimes I am not sure which one it is .