Today I had a flare up of my chronic pain. Flare up days are not all the same. The pain is not always in the same location or in the same body part.
Most people with chronic pain have several locations where pain occurs.They live with moderate to high levels of pain on a daily basis, even when trying to sleep or trying to get out of bed in the morning.
Living with moderate to severe pain on a daily basis for years and years is truly exhausting. When we say we have to sit or lie down to rest, we really have to. There has to be a break in the level of the pain or we simply cannot go on.
My particular distress today was in the herniated disc in my cervical spine. I have gone to doctors, orthopedic specialists, pain management specialists and physical therapy for this herniated disc.
There are also a couple of other discs in the same area that are “bulging” discs, which is supposed to be one step lower or less bad than a ” slipped” or “herniated” disc.
When the discs slide into certain places they press directly onto nerves, sending pain throughout the neck which radiates up into my jaw and then my head. A moderate to severe headache ensues.
Today I felt pain in my jaw. I also have what they call TMJ in that particular place…left side..right at the place where the bone that hold the upper teeth and the bone that holds the lower teeth meet.
The TMJ usually does not bother my much unless I open my mouth too wide and then it makes a loud popping sound and hurts some. But when the herniated disc acts up and pinches the nerves then the pain radiates upwards and inflames that place where the TMJ is.
Chronic pain can cause depression, grief and anxiety in people. It is often very difficult to keep up with other people and they do not understand or do not believe you that the pain could be that bad. They just say . oh we all have aches and pains. I have to deal with mine so you should just deal with yours”
People do not understand about chronic pain conditions. On a good day for us we have pain that is more than other people’s worst day of aches and pains.
On a bad day the pain can become excrutiating and we feel like we are in a battle with our own bodies that we did not start.
It feels like our own body is destroying our quality of life. We become like aliens trying to survive in a world of humans who are not sympathetic to our pain. They cannot empathize because they have no way to relate to it.
People think that we are lazy, disagreeable and being babies with a low tolerance for pain.
Now, here is thing. Most people with chronic pain did not always have it. We have developed conditions inside of the body that really cause pain that is so bad we cannot function the way we used to.
We remember what it is like to have regular ” aches and pains” like regular people have. We know what they are referring to when people say ” we all have aches and pains so just deal with it and keep up with us”.
We remember just having ” regular” aches and pains and that is not what this is.
Chronic pain rules your daily life. It can be so severe that climbing steps, even with my cane causes extreme pain in my knees….not just a little pain. Going up and down steps is torturous to me because of the arthritic degeneration in the bones and disintigration of the cartilage that is supposed to cushion between the bones grinding togethet on the nerves.
People with chronic pain often become isolated. Friends and family tire of you telling them that you cannot go with them to do certain kinds of activities that you once used to be able to do with them. They get tired of the ups and downs; good and bad days.
They begin to feel that you are using your supposed ” pain disorder” to get your way and to control what activities you do.
Let me tell you this…People with chronic pain wish we could still do those activities. We wish we could walk around the mall, go to carnivals and yard sales and be able to walk around for two hours. But our bodies won’t allow us too.
We are not wanting to never be able to do anything fun. That does not make any sense.
We are not happy to “get out of” doing work. We really wish that we could still do those things.
We have trouble cleaning our house. We have trouble getting around in the grocery store and more trouble bringing those groceries inside from the car. It takes me a good 45 minutes to carry 2 bags at a time up two flights of steps to my apartment, as I take two or three steps at a time and have to stop in places on the way up.
Who would want to lose their ability to climb stairs, to tolerate driving for very long even as a passenger, to have trouble exercising and to have to say “no”to social invitations?
We hate having our pain disorder. It may be invisible but it is very real to us.
So this is how people with chronic pain often develop mental illnesses like anxiety and depression. We lose friends and have trouble going out to meet new people.
Family members write us off because they do not want to be around someone who complains about pain. They have no way to know what level of pain we have.
Isolation often comes as a result of the difficulty in going out, driving, sitting for too long, standing, and a variety of other physical actions that are required to have a “normal” day, like other people do.
It is frustrating, depressing, anxiety provoking, sad, exhausting, and causes feelings of hopelessness as well as worthlessness. Sometimes we think “what good are we to anyone?”
So please be kind to any loved one that has a chronic pain condition. They need your support and validation that they are still someone that is worth spending time with.
They are worth a little extra effort on your part to come to visit them, rather than insisting they come to visit you. They are worth minor adjustments in your plans.
No one intentionally stops doing all the activities that they once loved to do. No one intentionally cuts their quality of life in half. We don’t want to have to stay in bed all day on really bad days. We really wish we could go out like other people do and participate in the world and its’ activities.
We grieve for our bodies, our lost abilities, our lost social interactions and our lost dreams of doing these we know we will never be able to.
We are just people like everyone else. We are not trying to make anyone’s life more difficult.
Isolation can have a deteriorating effect on cognitive skills and increase the risk of Alzheimer’s Disease.
My thoughts and prayers are with the readers that suffer from chronic pain conditions. More awareness is needed and more empathy is needed.