Hi Folks, hope everyone is doing as well as can be.
Will I ever accept having Chronic Regional Pain Syndrome and Neuropathic Nerve Pain? Well until I went to see my pain specialist last Monday I thought I had. I was going to see her to see what’s next in trying to manage the pain and I was feeling positive and nervous of what the next step was. One of my steps I wanted to put to her was amputation after reading the research supporting it and not supporting it, I was decided that it was an option to me.
So in we go Jen and I, me already sitting as I’m in my wheelchair. “Ok Dr what’s next?” I need help big time the pain is bad and I need to go on to the next level, what ever that maybe. I am thinking about amputation! No she said it wouldn’t help you one bit, as you have other nerve pain other than CRPS, it wouldn’t help. I at this time was asking for her to please help me. Now I believe what she says to me so she explained to me and Jen why amputation was not an option.
So I asked a question and the answer hit me like a ton of bricks, something I knew, but hearing it was absolutely terrible. The question was, So it’s mind boggling amounts of high medication that will leave me drowsy for the rest of my life? She answered I’m not going to lie to you but at this moment yes!!! Wow, so I burst out crying, sat crying for about 10 minutes thinking of nothing but my stupid feet, legs and ankles. The brain is such a complicated thing to deal with when it comes to injury and especially the nervous system and today in this world it seems the doctors are learning about CRPS daily in how it effects us and how to try and fight it. I pray (I’m not a religious guy) that in my lifetime I see a cure for this chronic pain syndrome.
We then spoke about my favourite thing, medication (as you can tell I’m being sarcastic here) and how the options for me were running out, another shock to the system. I asked her about Ketamine and after talking about it we agreed to have that as one of my last options. So with some medication being upped again and to go see her in a few months, I was out of there.
We got in the car, shot across Edinburgh to go meet my cousin, his wife and their gorgeous daughter at Ratho carvery….. We were late as we went into Krispy Kreme….. Hey CMON I had to be cheered up so I was cheered up when I seen my cousin’s wee daughter and knowing I had doughnuts to eat. So it was a good end to shitty afternoon.
Why did I think I accepted having CRPS? Will I ever accept this? Most probably not but what I will have to accept is that this is life changing to me and my wife. My surgeon said to me that I was suffering from Post Traumatic Stress Disorder due to what I went through with the surgeries etc and with what’s happening now, me being me, I totally dismissed him when he said that but I’m beginning to think he is right maybe that’s why I can’t accept what’s happening.
Cheers for reading