You Don’t Look Like You Are In Pain

Ok. So tell me. What DOES someone with chronic pain look like exactly?

So I just recently read an article by a woman who had just lost her best friend to suicide because she was in so much pain and no one believed that she had fibromyalgia.

How can this still be happening? How?

Yes, Fibromyalgia is an invisible illness, but it is a chronic pain disease. It has officially been entered into the International Classification of Diseases Classification Manual (the ICD-10-CM) used by doctors worldwide. Fibromyalgia has been named the second most diagnosed rheumatoid disorder according to the BBC World News. There are commercials explaining Fibromyalgia on TV! What else needs to be done?

It is common for those of us with invisible illnesses to not be believed. We lose friends, family, employment, and our sense of self-worth. We isolate but in public, we shine. We work to put on an acceptable outfit, make sure we have some color on our cheeks and cover up the dark circles under our eyes. We smile through the pain. We walk down the street with grace even though every step makes us feel like crying. We make sure no one sees us fight back that pain.

Why? Because we are used to not being believed.

No one should have to prove to someone else that they are truly unwell. Suffering in silence is literally taking lives. And its just not right.

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A Blurb on CRPD

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.

Nothing Tried, Nothing Learned

So I am entering into the world of cannabis. I’ve had a prescription for over a year now but have not been able to afford a regular regimen so i avoided it altogether. Now that I can buy it locally and legally, I am able to experiment a little to find a strain that works for me and helps ease both my mental and physical pain.

I recently tried smoking a strain called Boaty McBoatface. Good grief. Who on Earth comes up with the names for this stuff? Anyways, I was in a really bad place physically and I was unable to get out of bed last week because I was having a flare up of complex regional pain disorder. When those flare up strike just as well for me to stop everything and turn off the lights because my body shuts down and I’m not able to function. Even the bottoms of my feet burn like fire when they touch the surface of the floor. I had spent some time crying one afternoon and David ended up calling home from work to check on me. I guess he was pretty upset knowing that I was in such a mess because when he came home from work that evening he came home with the first bit of cannabis that he has ever touched in his life. He was actually trembling when he handed it to me because cannabis is a touchy subject with him. The fact that he went seeking it out and brought it home is still something I can’t believe.

So over the past week I’ve tried smoking it a couple of times and I am pleasantly surprise with how it affected my body. There was no high from it like most people think. There was no side effect that made me feel funny in my head. All I know is that within 30 minutes I was able to stand up and walk around my house without having to hold on to anything to keep my balance and it lasted a couple of hours before the pain was in full force again.

I do think that I may continue to experiment with cannabis a bit so that I can get the perfect form and strain that works best with my kind of pain level. I want to try the oil because that would be the most convenient thing ever. The stuff is not cheap though so it’s not something that I am going to be able to have on hand all the time. I’m just going to see how things go and continue to pray that something will be out there that will hopefully give back my quality of life.

You Think I Wouldn’t Love To Do That?!

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.

Planning Around The Pain

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.