Yesterdays unscheduled entry was quite negative and for that I apologize. The purpose of my 365 day challenge is to share with the world what a year of my life is like, without getting too personal. Why I fight for such better days and why I try to be so positive during these ones. Complex Regional Pain Syndrome is consuming my body, mind and life, but I am still trying my best to make the best out of each day and inspire others to do so too. But the reality of my situation has really been sinking in these past weeks and I'm not sure how I'm going to overcome these hurdles.
I probably should have waited to check my bank account until after a moment of positive energy to the blog. But I just HAD to see how broke I was so I could start planning in my mind. $68 for 2 weeks is an all time low.
Every day of the week for those two weeks, I beat myself up in my mind over my realities.
I'll make this as brief as possible, and sorry for repeating myself to any followers, but this I a portion of my reality.
CRPS is the highest rated pain condition to date at 42 out of 50 on the McGill Pain Index. It's pain is more intense than childbirth, non terminal cancer, fibromyalgia, amputation of digits and everything else compared. The pain is constant. If I breathe on my right arm or my cat's tail touches my leg, it feels like a cut or a shock. If my feet touch the ground (Or have to be in a shoe I am learning), it's a shock that goes all the way up to my lower back. It's 42 out of 50 pain shocks. And I have to pretend to be normal and ok during all of this.
I smoke an intense amount of marijuana when I am not working. My way of explaining it is that is makes my brain sleepy or silly enough to not fully pay attention to my nerves thinking something hurts when it doesn't. When I'm 'Super High' I can use my arm a bit and kind of walk without a major 'swagger in my step' (What does it mean? I don't know). But I can't smoke marijuana around my work shift.
So 4 hours prior to my shift (in 25 minutes) I stop medicating myself and let the pain get to its full 42 of 50. Then I put both feet into shoes and try to walk 5 minutes down the street. It usually takes 20-25 minutes now. The pain is so intense I often cry wherever I slowly walk. It's a natural response not a cry for attention, dear lord my walk gets me enough of that. I get to work and have to take my shoes off immediately, but I also need to put on an over sized hat to block the over head light from my eyes and put in ear plugs. Not because I'm high still, but because the lights and the sounds of a call center can make me stiffen, start to shake or make my eyes start to flutter (What the hell is that?) I put my headset on and start helping customers solve problems, but I can only use one arm at this point so my entire navigation and typing is from my left arm. I'm there for as long as humanly possible before I have to prepare myself for that walk home again, at this point after 6-8 hours of being un medicated. EVERYTHING is on fire at this point and I'm pretty much useless for the rest of the day and can't sleep at night. All to make maximum of $30 a day, but that hasn't happened in a month or so now since my CRPS started getting worse. I stayed all day Wednesday, but had a meltdown after feeling stuck at my desk because I was terrified to put my shoes back on but I needed the washroom which was at least 100 feet away. I bawled in that bathroom once I made it. I'm done venting now. My employer is above and beyond amazing for keeping me during all of this. 7 years there now and almost 3 have been me fighting CRPS taking over my body. I do love my job when I can tolerate it and I am good at it when I can remember everything.
Well, that wasn't short at all. But that's what I'm trying to deal with in the happiest of terms and it just doesn't seem to be working out for me without this treatment I have been waiting for. I called in sick yesterday because I was absolutely broken. If you read my post, you saw I kinda had a meltdown and realized how forked I really am. This morning I should have known better than to confirm.
It is what it is and I'm not sure if there is anything immediate I can do to change it. But I am going to be working hard to try to change the future. Lots of positive projects coming up if I can wrap my brain around things with all of this stress. One step at a time.
This is what life is like for me though.
Before I forget, this is my last entry before the CanadaHelps page officially goes down for the year. I organized the 2nd Annual Walk to Conquer CRPS and we are sooooo close to $2,000! We have been sitting at $1,900 since last week and donations are being accepted until Sunday!
https://canadahelps.org/en/pages/walk-to-conquer-crps/
I have to try to get ready for work while my medication is still strong, but I am positive that something will happen today to make my struggle worth it. Keeping the Sparkle in there, even when reality is a beast.
Can anyone relate to this?
One day I'm going to understand WordPress and Steemit, but until then, I'm just going to keep posting and hoping one of you gets inspired to make today a good day with positive thinking <3
Be kind to your mind everyone <3
Positive thoughts,
-Kristen Spakrle
Day 166/365
Entry 76/183
@ConquerCRPS on Instagram
Yes, as a matter of fact, I can but not anywhere on the scale that you described.
Some days I am on a 10 on that scale but that is rare. Usually I hang out around a 5-6. Mine is spine and joint related. But I started taking some MoveFree (think that's what it's called) and been feeling not as bad w my hip pain.
I have a implanted neurostim for my back (hence I am technically a cyborg) but the coverage is less than comprehensive. I know how pervasive pain can be in getting the most simple things done.
Hope your situation improves.