When Living With Chronic Pain, It's Not Just the Physical Pain That Hurts
Many say I’m strong. Some even call me a survivor or a warrior… I say I’m just trying my best to survive! Let’s face it, chronic pain sucks! We all know pain, each and every one of us knows what pain feels like. However, some of us know what they call “chronic pain,” a pain that lasts for months or longer. Everyone perceives pain differently and because of this it can be hard for people to understand exactly what you’re feeling. It bugs me when someone says, “I know how you feel!” No! You don’t know how I feel because you’re not me! You might be able to relate to how I’m feeling and to that I say, I am sorry.
I was doing a good job managing my fibromyalgia symptoms. It took me years but I had learned to slow down and pace myself. I was learning to say no to things I knew would cost me in the form of a flare. Was it easy? No! I was mourning my old self, my old life. However, I was managing and I was still my smiling, happy self.
It will be four years ago Labor Day weekend that we returned from a trip back home to attend my grandmother’s funeral services. I had pushed fibromyalgia’s limits in doing so, and then it happened: I herniated another disc in my low back. Since doing so I’ve tried numerous treatments with minimal relief. I live with not only the low back pain but the dreadful nerve pain that radiates down both legs to my feet. It has taught me that having a secondary chronic pain issue can aggravate your fibromyalgia symptoms almost to the point that it remains in a constant flare.
I have days I feel like I’m plugged into a light socket! Days that even the slightest breeze blowing across my skin sends a chill through my body. After this chill comes a wave of whole body nerve pain that stings like someone’s smacking me on my bare skin with a plastic fly swatter. Living with chronic pain is excruciating, to say the least, but there’s so much more to it than just the physical pain.
Age: For starters, being young or even looking young makes chronic pain a whole new battle. “You’re far too young to have this much pain.” I hear this often. Or, “You’re too young for this treatment because we don’t know the long-term effects of it.” I’ve heard this too. Assumptions and judgment are plentiful when young and living with chronic pain. So at what age is it OK to say you hurt?
Accommodations: Everyone assumes you’re crying and upset because you’re in pain. Truth be told, your feelings go far beyond the physical aspect of it. Having to accommodate the pain daily is exhausting in itself. Will your pain allow you to keep that day you planned with your friends? Do you still have friends? Will it knock you down last minute so you’ll find the need to cancel last minute too? I personally know, with nerve pain, I am not in charge! Nerves have a mind of their own and they’ll let you know what you will and will not do. Fibromyalgia is the same way – one day at a time with no scheduling ahead. If you do and the day comes, you may either be struggling through it or needing to cancel last minute.
Guilt: Then there’s the guilt…you know how you’re feeling for being chronically ill. You never wanted to have a condition that affects somebody else. Heck, you didn’t want the condition to affect you, let alone someone you dearly love. Whether you feel guilty for your condition not allowing you to work out of the home or because your pain caused you not to be able to attend that family function…that thing called “guilt” can sometimes hurt more than the chronic pain does.
There’s so much guilt involved in living with chronic pain that it can become overwhelming at times. Guilt because your spouse’s vacation gets spent at hospitals and clinics. Guilt that medical bills are piling up. Guilt can eat you alive and chronic pain allows you plenty of downtime to overthink every situation. Let’s face it: the guilt hurts, sometimes more then the physical pain! For someone that was once self-sufficient, it’s hard to accept you need help. For someone who always cared for others and put themselves second, it’s hard to accept you need to be cared for.
Depression: When I was first diagnosed with fibromyalgia, my rheumatologist recommended a couple of books for me to read. Books that would help me understand fibromyalgia with me being new to the diagnosis. In one of them (and many times during my online research since), I remember reading how depression was common among those with fibromyalgia. How researchers wondered whether fibromyalgia caused the depression or the depression caused fibromyalgia. Well, in my opinion, I think chronic pain such as fibromyalgia can cause depression. Let’s think about this. Your life was flipped upside down and you were given a totally different life to live…with chronic pain! Pain that dictates what you do, when you do it and with whom you’ll be spending your day. It makes sense you can become depressed. You’re mourning the person you once were and a life you once lived.
Prior to fibromyalgia I was a multi-tasking overachiever who didn’t know what it meant to slow down. Now I have days where I question the value of my existence and how much of a burden my pain is on those I love most. I question how much longer my strength will hold out and wonder how I’ve made it this long. I think about the reality of living another 40+ years with this pain.
Frustration: As many are, I was pushed from doctor to doctor having test after test before getting my fibromyalgia diagnosis. Now I’m doing the same for my chronic back pain due to additional health issues. It’s mentally, physically and emotionally draining to feel like you’re screaming and nobody can hear you, all while trying to survive the chronic pain you live with each day.
Traveling to appointments causes my pain to worsen as does sleeping in a hotel bed. When you’ve tried every avenue you know, even traveling a state away for healthcare, and yet you still have no solutions for this awful nerve pain, it wears on you in every way. We go to doctors for help, to be fixed. It’s devastating to be told they can’t help you or to be given such limited options. So you keep searching for a doctor who will help, someone who will give you new options. If you mention your frustration to someone outside the medical community, you get those who think they have the solution to end your pain. I love that people want to help but I know I don’t want my family and friends to treat me – that’s what my doctors are for. It just adds to my frustration when family and friends start throwing out their opinions and solutions to end all my struggling. If you don’t try their suggestions then you must enjoy being in pain. Please don’t play doctor with me.
I’m just looking for an ear. An ear to listen because my husband has already heard me. I hate that he feels so helpless, and I don’t want to put this on my kids – they’re affected enough already. Only on my worst days do I scream, but I want to scream without feeling guilty for doing it. I want a shoulder to lean on; I don’t want you to put my health on your shoulders. I don’t want to be told to have faith or remain positive because honestly, if it weren’t for my faith and positive mindset, I wouldn’t have made it this far. I’m human, I lose hope on occasion! You might lose hope too if you were searching for someone to do a surgery you’ve been told you need for four years to end a big portion of your pain. Right now I just want to be heard.
I want to tell you I’m angry! I want you to know I didn’t ask for this! I want you to see the pain in my eyes and know I’m sad and I want my damn life back! I want a doctor to fix what’s wrong so I can go back to a manageable life of living with chronic pain. I’m tired, exhausted, drained…from trying to survive these waters without a life jacket. Do you get what I’m saying? Please don’t judge or diagnose…just listen. I’m frustrated, please hear me!
Sleep Deprivation: Then comes sleep. Many say sleep deprivation can make pain worse, and I believe this. How on Earth will you ever sleep when you lack pain control? Sleeping, for someone with chronic pain, can be the enemy. I am always exhausted – it goes with fibromyalgia’s territory – yet come bed time I dread going to sleep. I know I’m going to wake up with excruciating nerve pain down one or both legs. It’s like stabbing yourself in the foot. How many times should you do it before you learn your lesson? Yet we need sleep for so many things like functioning and being able to focus, right?
Add to all of this the nasty side effects of all the medications… What I’m trying to say is when you’re living with chronic pain, there’s so much more to it than just the physical pain that hurts. This is what causes the tears, sadness, frustration and the depression. Please be patient, I’m trying my best to keep smiling.
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Thinkstock photo via KatarzynaBialasiewicz.