My body is attacking itself, eating my bones like a bloodthirsty internal zombie. My body is cooking me day in and day out with boiling inflammation that saturates my muscles and skin. So forgive me if I get snappy from the pain once in a while and if I can’t always smile. And forgive me if I feel afraid and tenacious about what the future may bring. yes I try to keep my chin up and yes there are many things for which I am truly thankful. But sometimes I just need the space to be sad and cry and be angry without someone judging me or making me feel bad about it.
Here is a little blurb about the pain disorder I have:
Complex regional pain syndrome (CRPS), also known as reflex sympathetic dystrophy (RSD) is one of the most painful disorders known to man. On the McGill University Pain Scale, CRPS/RSD ranks 42 out of 50. To put this level of pain in perspective for you, that ranks higher than both childbirth and amputation.
In addition to pain with an intense burning-like quality, many of us also experience what is called “allodynia.” This is essentially pain caused by something that wouldn’t normally cause pain. What this translates into for a CRPS/RSD patient is the inability to tolerate items such as clothing or shoes on the affected areas. Things like a sheet, blanket, or even the wind blowing a light breeze can cause extreme pain.
Deep bone pain, muscle spasms, contractures, dramatic color and temperature changes, and dystonia, are some of the other common symptoms a CRPS/RSD patient often struggles with.
When you first become sick they will show you sympathy. They’ll send you cards and hope that you get well soon. The call or text to check in on you and see how you’re doing. They’ll cut you some slack because of your situation. They’ll be understanding when you have trouble keeping up with them.
But once your illness becomes a chronic condition they wonder why you can’t get better. They show impatience and frustration. They stop trying to include you in their plans. They ask why you aren’t trying harder. They just don’t get it. They just want you to be able bodied again so that you are not inconveniencing them.
People get tired of you being sick but they don’t stop to think that you’re probably tired of being sick too. They don’t take the time to think about how you would love to just get over it. They don’t care enough to realize that you did not choose this.
Living with chronic pain is making a choice every day to get up and put your wings back on and try it all over again.
I kinda had a meltdown last night. My pain was so bad. We went to bed and we were talking about our plans for today. Said we would go to church this morning, go to gander and check out the derby for a bit but not stay for the full thing, pick up my morphine at the pharmacy which is due today, and go to church again tonight.
I went to turn over in bed and I hurt so much that I started to cry. It was an ugly cry. Sobbing. Snot. Tears. Hyperventilating. I know that it was going to happen sooner or later because things have just been building up. I feel so guilty because David is on holidays and I know I am holding him back from doing things.
Anyways we had a chat and he massaged my back and we decided no church this morning. Instead I slept in. Now he’s gone to Gander to get my pills and he’s gone to the derby by himself. It took a lot of convincing because he refused to go without me but it makes me feel much better knowing that he’s gone to do something. We do every single thing together. He never has any time without me and I think that individual time is really important. We have a very dependent relationship. It’s like we can’t be on our own without feeling incredible guilt. So I think it’s good that he’s doing something without me.
He’s going to be home in time for supper and then we will go to this evening’s church service. While he’s gone I’m going to relax and have a hot shower, to help loosen the sore muscles all over my body. In order to go to church I need the entire day to prepare.
That’s what it’s like living with CRPS.
You plan around the pain.
Note to self: You don’t have to take this day all at once. But rather one step, one breath, one moment at a time. I will be satisfied with every little thing I do today because I know how much strength it took.
Dear healthy people,
Not being able to work because of chronic pain is no holiday.
Let’s trade places so I can be tired of working instead of being tired of fighting with my painful body, feelings of uselessness and the lack of desperately needed income.
I have a protein deficiency. My levels can drop very quickly and unexpectedly. When they do, it sets off my CRPD (Complex Regional Pain Disorder). And sometimes I break out in a rash. The nerve endings beneath my skin throughout my body become so inflamed that, in simple terms, it burns my skin from the inside out. This rash on my neck is actually a burn caused by flaming nerve endings. This disorder is HELL. My body is like an inferno. It creates unbearable pain inside me that often is too much to cope with. Sometimes my extremities become swollen. Some days, like today, I have burning skin. Other days my body is so weak that I can’t function normally. I wake up at night in tears because the blankets covering me hurt so much.
But I know that one big trigger for me are drops in my protein levels. So I’m sitting here at the trailer drinking what I consider to be my ‘medicine’ as I patiently go with the flow of life with Complex Regional Pain Disorder.