1. Of long duration; continuing: chronic money problems.
2. Lasting for a long period of time or marked by frequent recurrence, as certain diseases: chronic colitis.
3. Subject to a habit or pattern of behavior for a long time: a chronic liar.
So here is what I, as a chronic pain sufferer, want you to know about how it effects my life and loved ones:
- Just because you can't see it, doesn't mean it's not real. It doesn't show up on an x-ray, or MRI, or CT scan. You can't see it by looking at me, but it's very real. The pain of fibromyalgia is very, very real. Over time, it will take it's toll and you may start to see outward physical manifestations of this pain that I live with day in and day out; but, for the most part, there is just no way to show someone on the outside looking in what this pain really feels like.
- It leads to other health issues. Living day in and day out with a pain level that rarely dips below 6 on a scale of 1-10 can trigger a variety of medical issues. Fatigue, depression, and sleep disturbance are common among chronic pain sufferers. I have also begun to have issues with nausea, RLS (Restless Leg Syndrome), and anxiety. It is hard to tell what symptoms come from the illness and which ones are brought on by the chronic pain.
- It is unpredictable. Today I had to leave a wedding we were at because I was in too much pain to stay. I have missed countless events simply because I was in too much pain to leave the house. I try to explain to friends and family, try to caution them when making plans that I may have to back out at the last minute, but over time, it becomes frustrating to both myself and those around me. I want to go out and do things, but my body just does not always cooperate.
- It is a mountain, not a molehill. Some days I have plenty of energy to live my life almost like a normal person. Most days I don't. Some days I barely make it out of bed and taking a shower sucks the rest of my life-force for that day. (Unpredictable-remember?). It is a mountain in my life that I have to decide to climb each and every day.
- It still hurts-and probably always will. This is not a cold or the flu. It doesn't get better with time. In fact, sometimes it gets worse. No matter how long I live with this, it still hurts. Each day is a balancing act for me-juggling pain, chores, school, and life. At some point each day, I lose my balance and retreat to the couch and heating pad.
- I only have a finite number of spoons each day. The Spoon Theory (published by Christine Miserandino of www.butyoudontlooksick.com, who suffers from lupus) basically states that those of us with chronic illness start out each day with a certain number of spoons. Each activity we do depletes our spoons and when there are none left, we are done. I am learning to be cautious and more particular about how I use my spoons.
- It causes me to seek pain relief, not drugs. The American health care system is rotten to the core-and at its core is pharmaceutical companies. Narcotic pain medication is one of the only things that helps my pain (and many others), but I am frequently made to feel like an addict seeking my next fix rather than a chronic illness sufferer seeking pain relief. Not everyone who uses opiate-derived medications is an addict. Yes, when I don't have pain meds, my pain is worse, but that same thing could be said of blood pressure medication, diabetes medication, etc. When someone on metformin (a common diabetes medication used to reduce sugar in the blood) doesn't take it, their blood sugar is worse. Yet, they do not have to sign a contract with the prescribing doctor, wait until they are completely out of medication, drive to the doctor's office to pick up a physical prescription, watch as the pharmacist counts how many days since their last refill (in case they are lying) and pray there are no other complications to get their prescription filled. This is what I do EVERY MONTH to get pain relief. Okay. Getting off the soap box now.
- Finding a physician can be a challenge. I am blessed with a wonderful doctor who diagnosed me quickly and has never made me feel like my symptoms are in my head or any less real than someone who has a disease that you can see on an x-ray or blood test. Not everyone is so fortunate. I have heard a fair share of terrible tales of doctors who don't take symptoms seriously, won't prescribe medications appropriately, and many other issues. Again, so blessed and so thankful for my doctor. I have continued to go to the same physician because of this even though he is about 45 minutes from me now and will be even further after we move. I have no plans on changing doctors any time soon!
- Love and patience is what I need. I know my family gets tired of me not feeling well. I am sure my friends do as well. I have even lost relationships because of this illness. I get tired of it as well. Sometimes I just don't want to say how bad I am feeling because I am tired of hearing it myself (much less tired of feeling that way!). I appreciate when friends and family tell me about things they have heard that help other people with fibromyalgia and ME/CFS. That being said, I tend to keep up on new developments in this area. Just like someone with cancer or MS or any other life-altering illness, I am continually researching alternative treatments, new medications, and the latest in research related to fibromyalgia and ME/CFS. If there is a new miracle treatment or cure-I will be one of the first to know! Fibro-sufferers tend to be a close-knit bunch. We rely on support from one another because it is hard to find support from the outside, even the medical community. Be patient. Be kind. Just care. That's it.