(Written before I was diagnosed with fibromyalgia, six days before my cervical spinal fusion and when I was hoping the surgery would fix my problems.)
July 2, 2015
A note to friends and loved ones of someone with chronic nerve pain:
We love you, but you’re loud.
Please, please talk to us before you assume what the pain is like.
Our decisions are based off of doctor’s recommendations, not from your experience nor what you read off of the Internet.
Living with this is a constant struggle.
Anything you do daily, is like climbing a mountain to us.
We see the action in our head and calculate if the pain is worth the action.
Make a sandwich?… Meh.
The effort it takes for the body to endure pain actually takes a lot of energy.
The body reacts to this pain by sending out extra hormones.
Even our lymph nodes are swollen in reaction to the battle our bodies are waging.
Because the body is waging war on itself, it shuts down things that it feels it doesn’t need..
Like brain function.
We have the concentration level of a bumble bee.
We are tired, a lot.
We are out of bed, either because it hurts to stay there, or we love you too much to be alone.
We work because our doctor knows we need to keep moving and or we have bills to pay.
Or we don’t work because we can’t.
It’s not a vacation.
Belittling us because of our decisions makes you just plain mean… And uninformed.
We are only surviving but your kindness makes our quality of life much better!
The medications are hardly worth the side effects.
But we take what we must so we can feel as good as we can.
Narcotics are not recommended, but when all else fails….
Showering requires a lot of medication.
We have plans that seem unattainable.
For the love of all things holy, don’t compare us to whoever else you know, unless they have chronic nerve pain. It’s not the same.
Endurance is not an option.
Physical therapy sucks, but it should help.
If it doesn’t help then we should have surgery.
That is scary.
Surgery may make it worse.
Visiting us is awesome!
Cooking for us is awesome!
We probably have dietary restrictions because our bodies are inflamed.
Cleaning or taking our dogs for a walk is awesome!
Asking us to meet you somewhere for a walk… Not awesome!
Making us coffee is awesome!
Telling us a recipe we should cook… Meh
It is safe and good to make anti-inflammatory meals or drinks for us.
Road trips… Not awesome
Asking is awesome
Listening to us whine without offering advice is awesome!
Hugs hurt 😦
Helping us keep track of our medicines is very, very awesome.
Making calls and keeping up with chores would help us greatly.
Sometimes we will put off doing things until we can focus, then weforget.
We forget a lot.
And quickly. Not awesome.
Talking is a chore and embarrassing, because we can’t think of the right words.
So sometimes it feels easier to do things ourselves rather than explaining how.
Rushing us through what we’re trying to say is not awesome.
Creating code “language” is awesome!
“Go to your room” means you’re not awesome right now.
And can go both ways.
Cuddling and watching a movie is awesome!
Canceling plans with us more than three times in a row is not awesome.
We picked out our best jammies for this occasion.
We can’t do drama.
If we are having a really bad day, rather than telling us to look at the bright side (that’s what got us out of bed)..
tell us a joke.
Tell us lots of jokes.
Sing us a song.
Sometimes breathing hurts.
We like to choose what we spend our energy on very carefully.
Sometimes it’s not what you would want us to spend it on.
Walk in our shoes, you’d spend it trying to uplift yourself as well.
Please don’t try to take away the things we enjoy.
The likelihood that we’ve lost the capability to do our favorite things is high.
So if we want to walk in a garden or eat that ice cream, please just let us do that.
Helping us keep the right attitude is good, please be gentle.
Ice cream is awesome!
A comfortable chair is worth is weight in platinum.
Dark chocolate is anti-inflammatory
We don’t want you to feel bad for us, we just appreciate your understanding.
We might take your attempt at encouragement as inconsiderate. Please forgive us, we aren’t feeling well.
We are so glad you are sticking with us through this, we know it has to be hard for you as well.