Let’s just be really honest. NO ONE ever asks to live with pain. Whether it be the short term pain of an illness or Injury. No one asked or invited pain to come into their life. In fact Mr. Pain came into our lives totally uninvited. Chronic Pain can come on gradually, that being said that isn’t the case for many of us with Autoimmune issues or fibromyalgia. Many of us woke up one day with pain in places and at levels we had never experienced. Naively we all just assumed that the pain would be short term or acute. (But there is nothing ever cute about it!) That we just tweaked our back, maybe we slept on our neck wrong, or stood on our feet too long. If you asked anyone who lives with chronic pain no one would ever tell you that they knew when the pain started that it would be with them long term. We never thought that we would eventually have to change our daily lives so we could live a life full of pain.
My chronic Pain journey began one day in early Summer 2012, when I woke up with very little to no pain. That changed drastically by the time I got off a 12 hour shift as a Registered Nurse. By the 11th hour my feet hurt so bad that every single step was EXCRUCIATING. They were like three times their normal size and cause me so much agony. I cried with every step I took on my walk to the car. I still remember that it had been a VERY busy day (or couple of days), so I just assumed that the pain was from the crazy days at work and it would go away after a good nights rest.
Sadly, it didn’t go away. It got worse with each day I worked after that first day. Not only did the pain in my feet NOT go away, it spread. It spread all over my body. Not all at once thankfully. It was more of a slow spread, a spread which eventually overtook my WHOLE body. It spread to my hands, causing me to have difficulty holding a pen or utensils, using my phone, or even typing. Because none of those things are essential for daily life. Then came the pain in my knees, pain that was worse when I had to walk or stand for long periods or squat down. Because yet again those things aren’t necessary for life, much less my job (please sense my sarcasm). The migraines, the life altering migraines came next. The constant, never ending head pound headache for eight long months. Most recently came the pain in my back and hip. Which makes basically every part of life difficult. And we can’t forgot to mention the intermittent fibromyalgia pain that can affect every single muscle in my body, At different times in our lives this pain will affect nearly every aspect of our lives difficult.
For most when pain becomes more of a constant in life, and It is no longer something that is dealt with only when they are acutely injure or ill. It becomes something you deal with on a consistent basis. When pain becomes chronic many will try to just Ignore the pain all together. Thinking that maybe if the pain isn’t acknowledged, that maybe it will somehow just go away. While this may work for some, it will most likely only work for a short time. Many people choose not to tell anyone about the pain at first, because they don’t want anyone to know just how much it is and may continue to impact them. No one wants to be seen as weak. and many actually believe that their pain might actually go away simply because they refuse to let it impact any part of their life. These individuals are all determined to continue doing their normal things no matter how bad it hurts. And it will hurt but most don’t want anyone to see them cry. So they cry anywhere there are not people. The bathroom, the car, or alone in the darkness. Wherever they can be alone and mourn the things they’ve lost.
One of the hardest parts of dealing/living with chronic pain is to determine who is safe to share your world with. Who you can tell and not receive automatic judgement. Not everyone will get it. It’s hard for the outside world to see and understand chronic pain. There is NOTHING for others to see on the outside. No one can see that your joints are bone on bone, or that you have vertabreas that are degenerating, or that you a need a hip replacement. Since our conditions are not visible there will always be people who wont believe you and want to tell you all kinds of other things to try. While annoying it is not nearly as hard as dealing with the relationships lost between us and those who simply don’t care to learn about what’s going on with you. It’s hard to have your family or closest of friends look at you like you or treat you like you are addicted to pain meds without even asking what you are taking or what kind of pain you are dealing with. Even people we grew up with for the last thirty years or our parents may automatically assume the worst because of everything that is being on the news
As the debate over medication for pain continues everyone and their brother feel like they should be able to make a decision for us on how we treat our pain. If you ask any chronic pain patient you will hear the craziest stories. From people telling them to take over-the-counter meds like Ibuprofen or Tylenol and that should be plenty. To advice on trying things like acupuncture and visiting the chiropractor/physical therapist or take supplements. Now don’t get me wrong those things do help a fair amount of people as research has shown but they simply do not work for everyone. I’ve tried everything from the things mentioned above to massage and PT and prescription meds. But just because I may take a pain medicine here or there does not mean I have an addiction issue. Of the hundreds of chronic pain patients that I know very few of them have or have had any kind of addiction issue. The different between most chronic pain patients and those with addictions issues is the fact that those with chronic illness would give ANYTHING to have their life back and to be able to throw their meds away and never get them back.
Sadly dealing with loss is just part of dealing with chronic illness; part of dealing with chronic illness is chronic pain. No matter how you try to keep the pain from impacting your daily life, it will in some way. You may be one of the lucky ones who are able to control your pain with yoga or stretching. In that case there is no real reason to share the pain with others unless you want to. As pain starts impacting more of your life you won’t be able to hide it without looking like you are hiding something. When you have to start canceling plans or leaving activities early you should probably start sharing the cause. Being honest with your friends may end up leading to the loss of a friendship. But in all honesty if these ”friends” can’t deal with what you are going through, you are lucky that they walked away. One of the biggest losses we may deal with outside of the loss of friends/family, is losing is the loss of restful sleep. One thing that our bodies needs more than anything. In order for our bodies to reset we must have rest. But because of the pain I am no longer able to get a consistent restful nights sleep. My body is never able to fully rejuvenate itself because of the pain.
I know that pain is a hot topic. But I feel like since I have this platform that I would be doing myself and those who subscribe to my blog a disservice. I want those with chronic pain to know that they are not alone. Know that there are others like them out there and because of that they don’t have to hid out all the time. Our pain is always here and never fully gone. The best analogy I can give you is that pain is like a criminal, chronic pain is always lurking and looking for the ”best” time to strike.
Please understand that these are my feelings and you do not have to agree!
With Love,
Amber
