You may have noticed that I haven’t been up to much this month. Part of that is due to lots of changes happening here, (good changes!), but part of that is due to the massive amounts of pain I have been in. I am one of 100 Million Americans that suffer from some form of chronic pain. According to many physicians, it is debatable as to the source of my chronic pain, but I know it is from Lyme disease. I took a test that came back positive and although some don’t believe in it, I know it is the source as I have lived with this pain for a lot of my life and it has gotten progressively worse. Regardless of the source, chronic pain is a huge part of my life and as such, I think it is time to dispel some of the myths surrounding it so you can understand where I am coming from (or where a loved one in your life is coming from.)
What it’s Like to Live with Chronic Pain
It’s exhausting. If I didn’t already have fatigue, being in pain will cause it. It is simply exhausting to be in pain all day because the body is just tired of having tense muscles, and shots of agony throughout. I may tire easily or I may just simply be tired in general all day. The fatigue can even take a mental form. Please know that I am not being lazy.
It’s annoying. Sometimes, I just want to know what it feels like to not have pain. Even when I take pain medication or do yoga or meditate, I still have pain. I get annoyed with it. This sometimes makes me cranky. I don’t mean to snap.
I hate taking pain medication. I really do. I only take it when my pain is intolerable, which is usually at one point on most days in the evening, but sometimes I skip a day here and there. I don’t like using pharmaceuticals. It really bothers me in my soul. Sometimes, though, it is a nessisary evil.
I have gotten good at pretending I am OK. No one wants to listen to someone say they feel like crap all day every day. I have gotten pretty good at hiding it or at least saying I am fine.
It’s humiliating. This is a big one. I am only 33 years old. It is humiliating to use a cane sometimes, cry going up stairs, feel good for a while and then have to explain to people why I can’t just do a 5k right now like I did a couple months ago, or even ask my doctor for pain medication. I feel like some sort of drug addict even asking for them even though I use them the way they are designed to be used. Since people can’t see pain, I feel embarrassed when it gets in my way or makes me look weak or helpless.
I miss the person I used to be. I feel like I am often a complainer, a cynic, and a grouch. I miss being a social butterfly, and a fairly active person. I miss feeling like I could do anything.
The pain doesn’t get easier the longer I deal with it. I don’t get better at coping with it, either. In fact, I sometimes feel like I get more frustrated and jaded.
I don’t use my pain as an excuse. If I ever have to cancel plans, or are late for something, can’t do something I said I would or quit early and tell you it’s because of pain, I mean that. I would never use it just to get out of things and trust me, it really bothers me and cuts away at my self esteem when I have to admit the pain got a hold of me like that.
I have been to more doctors that you can imagine. I have been laughed at, scoffed at, ignored, and treated like I am dumb by more medical professionals than I can count. I have a very long list of trust issues with the western medical community and if I didn’t sadly need them to find relief, I would just turn my back on them the way I feel they did with me. I have tried special diets, exercise routines, physical therapy, essential oils, rain dances, prayers, special clothing and “cures” as you can dream up. When I say something is working for me or not working for me, just trust I know my own body and how much I have patience to put it through at the time.
Sometimes I feel negative and like giving up. Not giving up as in ending my life, however I have thought about giving up on fighting this fight and just letting nature take it’s course. I have days where I feel this raw emotion. It’s just part of the deal. It may upset you, bother you, hurt you and you may not understand it, but just know it’s just where I am at the moment and I will snap out of it.
I feel lonely. It’s hard feeling like you are a burden on those you love and it’s equally hard feeling like in order not to annoy those you love youi should just not voice how you are really feeling all the time.
It hurts everywhere. When you do hear me say I am in pain, know that it usually hurts everywhere. It’s not usually just in one place. What does it feel like? Stabbing, shooting, aching, pounding, and burning depending on the day.
I have good days. Sometimes, I may not be in as much pain and I can do awesome stuff. This is a good day and even though I may pay for it later or the next day, I cherish every good day and take full advantage of them!