Next year I will have had RSD for half of my life. For almost 22 years I have lived with intense, burning, freezing, zapping, aching, and nauseating pain 24/7/365. I have experienced insane swelling, lovely shades of red and purple appendages, protruding veins, mild seizures, muscle spams, Etch-A-Sketch Brain, and tremors. I have never known remission, like some of my fellow RSDers have. Apparently, I'm a lifer ... a 5-Star General in the war against pain, having never received the coveted demotion. I have been forced to prioritize on a level that very few can even fathom. Don't get me wrong, I am not thankful for the pain, nor the other side effects of the disease, but I am thankful for what RSD has taught me. I have learned to think ahead, to plan for the unexpected, to breathe, to be grateful for the little things, to use my imagination, and most importantly, I have learned to prioritize.
Picking my battles was never something I did when I was younger. Even in the first years of my RSD, I continued to do what I wanted when I wanted. I was 22, sue me. I also caused my RSD to spread, so I don't recommend that. I did more than my fair share of drugs, prescribed and otherwise. I was in so much pain that I did everything I could think of to go numb (to no avail), when what I should have been doing was practicing patience and acceptance ... and breathing. Absolutely nothing outside of a cure or remission will completely take the pain of RSD away. We are given medication to lessen the pain and make our lives a little more livable. And we are given free will as to how we handle the rest. I have made the conscious and mature decision to become a Battle Picker where my RSD is concerned and surprisingly, it has trickled over into the rest of my life. Factor in the Spoon Theory and I have every tool for living at my disposal.
"Patience" ... I can't do that right now, but if I lay low for a little while, I might be able to do it later.
"Acceptance" ... I used to be able to do that and now I can't. That doesn't mean that I can't find another way to do something similar. Even if doesn't bring me as much joy, there is still joy to be had.
"Breathing" ... If I hold my breath, I cut off my own circulation and the pain spike gets worse or spreads. If I continue to breathe thru the pain, the spike doesn't last as long.
By picking my battles and thinking in terms of "how many spoons do I have for today?" I can map out a day and sometimes even a week. But I have to be able to plan, to save, and to rest. I know my body well enough to know how much stress, physical and emotional, that I can tolerate at any given time. So ... as we enter into this season, I will begin making my Hollerday lists to reduce my emotional stress levels and plan for my physical ones. My spoons are always limited, so if Mom wants to go shopping, I need to have a couple stashed for her. If Houdini decides that he can afford the time and we can drive to Kansas for the Munchkins' birthday, I need to have spoons ready for that. The Bombshell and her fam will be here for Christmas, so I absolutely can not afford any more pain spikes or that will take spoons away from the Munchkins, and that is just unacceptable for me. Even if it means saying "no" to something fun that I want to do, I must always remember what the activities are for which I am saving my spoons. Hence the lists, because I don't trust my Etch-A-Sketch Brain to remember everything. (ie: a night of dancing with the Fun Folk or <look at list> Small Business Saturday shopping with Mom? I can't do both, so which is more important? DUH!! Mom!!)
I have faith that I will honor my priorities, painbedamed. I have faith that I will take extra care when devising my lists this year because I am also dealing with a sprained knee, so my spoons are even more limited. I have faith that I will do the majority of my shopping on Cyber Monday because being a pinball in a crowd of insane shoppers on Black Friday is only a recipe for more pain spikes and flares. I have faith that I will get to see most of my fave Twigs (the name I've given the extended family) on Thursday and that is always a hoot and a half. I have faith that these are the things on which I will focus today, instead of the screaming pain in my knee and the freezing vice flare that it's causing in my lower leg and foot.
Yup, Happy Hollerdays!!
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