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.
Just feel like venting. My chest is heavy. I’m emotionally drained and physically exhausted.
Why am I so lazy?
Well, it’s not lazy. Lazy is when you shrug things off because you just don’t give a damn. When you’re curled up on your couch, on your bed, alone and desperately wishing that you had your life in order, that you did all the things you had to do, that it didn’t feel like breaking through rocks just to feed and clothe yourself and get some sleep, that’s not lazy. People don’t understand. You tell them it’s hard and they tell you, no it isn’t. You start to wonder if maybe they are right. Is breaking through these rocks easy for everyone else? Are they that much stronger than me?
They don’t look like they’re struggling.
Just try harder they say.
But I am trying!!!!
It’s just not working.
Breaking boulders in my path until I’m worn out isn’t lazy. And I do it day after day after day after day after day. I’m not lazy. Most people don’t have those rocks to break. They don’t even know what it’s like to have to break through rocks to get things done. They don’t understand how hard I have to work and how hopeless I feel when I try and try and try and only fail to do what other people seem to do so freaking easily. Things are harder for me. They really are. And if those people had to deal with my problems, they wouldn’t be able to do any better than I am doing.
I’m not lazy.
I’m not weak.
I’m fighting hard. Damn it!!
I’m fighting harder than ever before.
And I guess I just wanted you to know that today.