This morning I became aware that I have redefined my pain scale without realizing it. I was texting with my best friend when she asked how I was feeling. I told her that I was thrilled that I was doing fairly well considering how intense my pain level was over the weekend. She replied with “so you are saying that your pain level is moderate to severe?” I was taken back for a moment for a couple of reasons. The first was that OH MY GOODNESS, SOMEONE UNDERSTANDS!!!! Those who do not suffer from daily pain have a hard time understanding how anyone could be thrilled to just have their pain level drop a notch or two. To have the person understanding this be my best friend was just icing on the cake, because life is so much more enjoyable when those closest to you understand this concept. Most people assume that if I am out of the house or seen in public on my feet, that I just hurt a little. That is not the case at all. If people knew the pain that I battle they would think I was crazy to ever leave my bed. I am thankful that I have people in my life that understand that I am pain no matter where I am at or what I am doing. It doesn’t matter if I am at church, the grocery store, the beach, or at Disneyland for my Disney Therapy, I am always in pain.
There was a time early on, when being out did mean I was only in a little pain. But as years went by and my pain increased, so did my tolerance. This doesn’t mean that my 7 on the scale feels like a 2, it just means that I have learned to exist and sometimes function at higher pain levels. This wasn’t a conscience choice. As my pain increased I had to find ways to function in some manner, the only real choice would be to give up and stop living.
The other thing that took me by surprise was the level of pain that I have come to accept as normal. My Fibro and Psoriatic Arthritis diagnosis’ were back to back, so I never had the time to feel what life would have been like with just one of those conditions. After less than a year of living with those pains, I began my battle with ovarian cysts, botched surgeries, and abdominal adhesions. The additional pain made me long for a life that ONLY had pain caused by Fibro and Psoriatic Arthritis. At the time I thought I was crazy. Who wishes of a life with any pain???!!!! A person who experiences spikes of unthinkable pain is who!!!! Now with the addition of MS symptoms, a tail bone issue, and degenerative disc disease, I am always thankful when I am only suffering from a handful of symptoms rather than all of them at once. I know the fact that none of my conditions are curable plays into this way of thinking. All I can hope for is a level that doesn’t drive me mad or completely incapacitate me.
Today’s exchange also made me aware that it has been a long time since I have complained or admitted that I was in pain when not experiencing an intense spike. Part of this was intentional. The less I complained the easier it was for me to mentally deal with it. And I am sure that others were or are just as thrilled as I am with not hearing me complain all the time. The problem with this is that to an outsider it would appear that I either downplay my pain or that I am not in constant pain, of course neither is true.
So the answer to my friend’s question, is yes, you are correct, my pain today is what others would consider moderate to severe and thank you for “getting it”. I love her and the others in my life that understand that when I say I am having a good day, it is understood that I am still in pain.
I may have given up on having a pain-free day, but I haven’t given up on experiencing a low pain day!
The Disabled Diva