Recently, I found this list from The Pain Foundation, entitled “16 Things People In Chronic Pain Want You To Know” and it was a fun and excellent representation of what people in chronic pain truly do want others to understand. Inspired by this, I am have made my own list of things that I wish people could understand about my own, personal struggle with severe chronic pain.
1. It hurts just to be. I am always in pain whether or not I appear to be so. I have good days and bad days, but pain is my constant companion.
2. If I am forgetful or have a hard time concentrating, I usually blame it on meds or lack of sleep which are certainly contributors, however, the truth is that the pain in my body is screaming so loudly in my brain that it is hard to hear ordinary thoughts.
3. Friendships are difficult when you are always in pain. After a while, most people give up asking you to do things, because you can’t plan ahead how you are going to feel that day, you often have to cancel. The close friends that remain with you throughout all the ups and downs are cherished, precious angels. It is hard to make new friends since I have very little energy to expend and it is hard to explain that to someone new in your life. Friendships often depend on what you can put in to the relationship and when I have very little energy to put in, it is no wonder that it is hard to maintain friendships. This can be extremely isolating as life and friends move on without you.
4. Pain is exhausting and makes sleep difficult. I often can’t sleep at night because of pain, but then simple daily activities knock me off my feet into an instant nap coma. Pain is mentally, emotionally, and physically draining.
5. I have to schedule recovery time. If for example, my schedule has an evening meeting on it, then I have to rest up to even physically attend and then the following day or two I have to clear my schedule to recover from the pain that an extra activity such as that causes. If I seem to appear “fine” at whatever event I am able to attend, then I am taking a large amount of additional medicine in order to attempt to function as if I am not in a huge amount of pain. I also have a lot of anxiety before doing activities or social events in anticipation of the pain that it will inevitably cause afterwards.
6. Mornings are the worst. Lack of quality sleep, plus pain meds wearing off overnight, plus stiffness, etc. make getting up and around in the mornings horrific. This doesn’t mean that I am necessarily sleeping in, it just means that my body may not be able to get around yet.
7. If I could be off all my meds, I would be in a heartbeat. I hate the sluggish way they make me feel, the weight gain, the side effects–basically everything about them except for the fact that the lessen my pain. People often ask me what would happen if I stopped taking them and the answer is that I would be screaming and sobbing in pain, therefore, stopping them just is not a good option for me at this point.
8. Speaking of pain, I actually have a very high pain tolerance as do a lot of people with chronic pain. Being in chronic pain does not mean that you are a wimp. Within 2 weeks of having my first c-section, I was tumbling again in the gym. I have had 4 c-sections, foot surgery, wrist surgery, dry sockets from wisdom teeth removal, and I would gladly go through any of those procedures and recoveries any day, rather than the daily pain that I usually experience.
9. Chronic pain is basically like being in labor every day of your life without it ever stopping. Some days, it feels like early labor and sometimes it feels like full blown crowning, yet unlike birth it never ends. (Yes, despite what the 4 c-sections seem to indicate, I have experienced the trials of over 72 hours of labor with my first child, pushing, crowning, etc.) When my pain is really severe, it makes me literally become sick to my stomach. My husband thought that seemed a little odd or over dramatic until he experienced kidney stones and got sick from his own pain.
10. If something is scheduled in the morning, it is extremely difficult for me to be able to attend which is why I generally schedule all doctor, massage, or other appointments to be in the early afternoon. That being said, unless there is significant rest and planning, everything is subject to cancellation based on the levels of pain that I happen to be experiencing at that time. It is hurtful when I am judged for missing functions, but pain does not discriminate. Over the past several years, I have missed almost everything due to pain including field trips, church, sports activities, massage, doctors appointments, book clubs, and a myriad of other fun activities. I am always thankful when those close to me, do not pass judgement, but instead appreciate how much effort it takes to actually go out and participate in the things that I am able.
11. I still dream big dreams. Just because chronic pain slows me down, I still have hope for a future without pain or a better future with pain. I still dream of getting a PhD, going back to work, doing great physical feats, etc. Until then, I do as much as I can with the restrictions that I have. I commit to very few things these day, not knowing how pain will effect my ability to carry them out. When I do commit to do something, I appreciate it when those who love me come along side me to help me carry it out.
12. I spend most of my days sitting in bed, my heating pad wrapped around my back and neck trying to rest, recover, or just generally lessen the amount of pain that I am in. If I am able to concentrate on something other than pain and do not have a massive headache, then I read, listen to a book, watch tv, or best of all snuggle with and talk to my kids. I hate not being active. Chronic pain sufferers are often accused of not doing much because they are lazy, but that is the farthest thing from the truth. Prior to pain, I was always on the move, working, practicing, cleaning, wrestling with my kids, and I dream of being able to do all these things again. My body may be forced to stay still, but my brain is always moving and longing for my body to be active again.
13. I choose to have joy amidst these trials. I choose to laugh, joke, and tease and attempt to distract myself from pain with conversation. I do not like talking about pain, because I like to try my best to live a “normal” life. However, sometimes the pain just gets so unbearable that I have to go hide away in my own little cocoon, because literally, in those moments, I can not face anything except trying to fight the pain.
14. I am sure that there is more to write, but I am exhausted just from working on something small like this. When you are in unending pain, the smallest things such as watching a ball game, having lunch with someone, sitting in a waiting room, etc. can exhaust you for the entire day.
15. I can never have too many naps…zzzzzzz.