McGill Pain Scale -CRSD“The doctor told me that 33% of people with CRPD commit suicide. He said we get tired of waking to pain with nothing other than pain to greet us. I told him I have a purpose and that the purpose comes before the disorder. Even still, for him to tell me there is nothing that ranks higher on the McGregor scale was just mind blowing. There’s nothing more painful….and yet I have it…..everyday. I’m trying not to think of it. I’m trying to figure out ways to simplify my life so as to keep stress at bay and prevent stress related pain. That’s what I can do right now but the bigger picture, I swear, it feels like …i want to ask why? why? why? why?….can I stop hurting now please? Just for a minute can I have a doctor tell me I’m going to be okay? I just want to be okay.”

He said I have Reflex sympathetic dystrophy. I look at the photos I’ve taken of my legs and feet and I can see for myself that this is true. I think seeing photos taken way before this diagnosis came up helps me to ……have proof I’m not making this stuff up…. I know….. it’s an issue, I always worry people won’t believe me. I’m just happy I’ve taken photos on the 17th of each month for the last few years. I don’t keep them all, just a few from each month. It turned out to be helpful.

You know what it is about this diagnosis? There’s a feeling of hopelessness, of getting to the end of the road and realizing there’s no where to go. I feel cornered.

I converted the Fibromyalgia category to a tag. I’ve yet to give a permanent space to Reflex Sympathetic Dystrophy.

Earlier today while managing nausea and redirecting attention from my spasming back, I realized I can’t go on as usual. I can’t take this diagnosis and go on with life as I’ve done it for a long time. There’s one thing I feel I can change right now and that’s my level of stress. It is in my best interest to gain control of my fight or flight response. My PTSD symptoms are still a major issue.

I believe that there is stress related pain and I want to be able to decrease that. One way to do that is to stop negative speech about myself, stop self hatred remarks. The second is to try to handle stimuli better. Sometimes people say and do stupid things and it goes straight to my core and just sits there infecting everything around it. My emotions consume me so quickly. I need to be able to let go of things and not let them go in so deeply. So that’s my goal, simplify my life by managing stress better.

See journal entry 10 Things CRPS Taught Me in the First 2 Weeks from the blog Life with CRPS.

This evening during tea time (I had hot chocolate) I turned out all the lights in the living room except for a small blue lamp a ways off. I sat there in the quiet with nature around me. I was still in my living room but I’ve designed this house to embrace nature, and it does. So I sat there quietly, with my eyes closed and relaxed. It felt cleansing.

Sitting on the sofa, I could still feel my back eating at me. I was still nauseous, but I knew I was taking care of myself by taking that time out, alone, phone off, computer down. At that moment I felt like I could keep going.


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One thought on “No, not life as usual

  1. I hit “like” but wish there was also a button to strongly DISLIKE RSD and the pain you experience. I remember (kind of) the pain of natural childbirth and have a hard time imagining what could be worse.

    I admire your commitment to self-care. It sounds so obvious, but it can be incredibly hard. The quiet, dimly lit room sounds soothing, and I want to take your example and apply it in my own life. Thank you for the inspiration you share.

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