I’ll be at the 2 year anniversary of becoming disabled February 5th. It’s still honestly hard to believe its been that long. When it all happened I wanted SO badly to believe this was just an insane terrible CRPS flare up.
I don’t even like talking about what happened, some of it is because I blame myself.
I had JUST begun to see my pain dr and he suggested trying some neural therapy shots into my CRPS foot (at this point I ONLY had CRPS there).
My CRPS was “moderate” at the time. It definitely hurt a lot all the time and it dictated what I did to some extent. I could only tolerate flat shoes with no arch support, often couldn’t wear socks, and struggled through work when I had to stand a lot but it was NOTHING like my CRPS is now. I still worked part time, drove myself places, and lived a semi-normal life despite being sick with Lyme Disease and CRPS. I struggled far more with my Lyme Disease, the CRPS was often an afterthought.
My pain dr wanted to do the shots into my foot to directly impact the nerves and immediately I felt sick at the thought. I didn’t even let people touch my foot because of the pain…now we we were going to do shots in it? Though these shots are superficial, it sounded painful and terrifying.
I was desperate though, so I said yes.
I remember gripping the edge of the table while he did them, breathing loudly and groaning. We did a lot of shots.
I should have let him do 5 and say “lets see how this works”. I should have said “OK please stop”
For about 10 minutes my foot felt normal. It didn’t hurt. My dr smiled and said we could do more next time. I felt uneasy, unsure of what had just happened and unsure of what would happen in the days ahead. I had work the next day and I worried I would have to cancel on a lot of clients if the burning didn’t die down ASAP.
By the time I checked out my foot was ON FIRE.
I barely remember the drive home except that the pain was excruciating with each mile and I was more and more worried. I could barely walk in the house. I kept telling myself it was a flare up and it would die down, just rest Genevieve rest.
I stayed up all night in pain that was intense and unlike anything I had ever felt. I had to cancel all my clients. Little did I know I would never work again.
I was never the same after that.
I ended up in the ER a few days after the shots because the pain was so intense. I lost the ability to walk completely by February 6th. Putting my foot down and bearing any weight was intolerable. I spent the rest of February in bed, crawling to the bathroom and then crawling right back into bed. Twice a week Sean would carry me down the stairs to shower. I would scream taking a shower because the impact of the water felt like knives on my feet.
I wasn’t taking any opiates at this point and to be honest that month is just a grey blur. Ive never been in that kind of pain day in and day out. I felt like a wild animal caught in a trap.
I thought of suicide often and told Sean that if this pain continued could I have his permission to kill myself.
I was in agony and I was terrified of what was going on. It became crystal clear to me this wasn’t a flare up. The shots had made my CRPS worse and I knew deep in my heart that the chances of reversing it were very slim.
Time marched forwards. Sean would carry me to the car week after week and drive me up to see my pain dr. He had never seen anyone have this kind of reaction. Nothing we did calmed it down. Nothing we did made it better.
It was a nightmare beyond anything I ever imagined could happen but I was awake.
Things seemed to get better in March, I started to adapt to the pain and could slowly walk for short spurts but it was a strange walk. I limped and lurched and could only be upright for small periods of time. Driving was excruciating so I gave up on that.
Once it was clear that this was my body’s new operating status, Sean rented me a wheelchair so I could get out of the house but I felt ashamed and dreaded the chair, opting to lay in bed day after day away from the rest of the world.
At the end of April I lost the ability to walk again and the rest as they say is history. By the time my 32nd birthday rolled around that July, I was in a wheelchair 24/7 and had to close my business permanently.
I had been sick for 3 years but now my body had become something new and awful.
2015 was all about learning to exist in this new awful body. I think I spent a lot of last year in shock between becoming disabled and having the CRPS spread 3x. 2016 has been all about fighting back while also making peace with what my body is and may always be.
I have developed a patented “flamingo” stance where I bear all my weight on my right foot and tuck my left foot up, this of course only works when my right foot isn’t also flaring. So now after months and months of PT while I do dishes or fold clothes, I now work on placing both feet on the ground and having my weight distributed evenly.
Its scary and painful but also what must be done.
Losing the ability to walk, stand, drive, climb stairs etc has been the biggest life lesson I will probably ever receive. I have learned what happens when the small things are taken away along with the big things. Often the small tiny unimportant things are what you grieve the most.
I went into this period of “being really sick” full of rage and sorrow. How unfair it was. How unfair it sill is. However at almost 2 years I am making peace with what this is. I have no control. My body reminds me this every morning when I am still half awake and yet my pain is already zapping and zinging and burning and throbbing.
Last year I grieved. This year I cycle through fighting back, grieving, and then laying down on the ground and saying “ok ok I give in”.
I really didn’t expect my CRPS to spread again, I thought doing ketamine every few months would deter my brain from this pattern. I will be honest that I am struggling mightily with this spread. I am used to CRPS in my lower body, having it in my upper body is taking a lot of time to adjust. Some of my favorite sweaters irritate my arm and make it flare up. Knitting is too painful. Washing my hands is painful.
I don’t know what 2017 will bring. I don’t know what my motto will be for the year ahead. I don’t know what issues I will fight against and what other places the CRPS could possibly spread to. I really don’t know anything about what lies ahead for me in this upcoming year.
What I do know is every day I will work past the fear and the pain to put both feet on the floor and stand up.
“pain is important: how we evade it, how we succumb to it, how we deal with it, how we transcend it.” (audre lorde)