Fibromyalgia, Chronic Fatigue and Myofascial Disorder: These are three conditions that are hard to explain, hard to understand and hard to cope with. Not only affecting the person who has to deal with the disabling and chronic issues on a day to day basis, but also affecting the family and friends of the one with the chronic illnesses. I personally, can’t recall during my entire life, not being tired. I can’t remember having energy for more than a day or two, and then feeling like the life had been sucked out of me. I remember when I was younger, I would have pain, usually a large area, like my thigh or arm or one side of my face, that would be so tender and sore that I could barely stand to be touched at all. I would ask my Mom what would cause that and she would say that maybe I had inflammation somewhere in my body that just settled in that area. It sounded like a good reasonable explanation to me, so over the years when I had flare-ups, I would use that as my rationale for the pain.
I have to admit, that I took diet pills for many years, not to lose weight, but just to have a little energy. To be in your young life and to feel so tired you need to take an over the counter pill for energy is truly sad, but I never even questioned why I was tired or why I felt like I hadn’t slept or why I had no energy at all. I wasn’t interested in why’s, I was young and I had to concentrate on the “what to do to fix me fast” solutions.
I am the mother of 4, ranging in age from 32 down to age 15. I am 50 years old. Eight years ago, I became pregnant at age 42 and was so excited to have such a miracle happen. However, 11 weeks into the pregnancy, I lost the baby. I was devastated. I had a D&C and was sent home from the hospital. About 4 weeks later, I had to be rushed back to the hospital for a second D&C surgery. I just never really felt the same after that and I tried really hard to get back to normal, do my daily things, raise my kids, work, and continue on. About 3 months after having the miscarriage a doctor convinced me that I should get the Depo-Provera shot, because it would prevent any further pregnancies and also help with the monthly cramping of my menstrual cycle. Sounded great to me. After the shot, I felt like I had the flu, I felt like I had been beaten with a club, I felt tired, battered, bruised and didn’t have one mark on my body to show for it. My hair started falling out by the handful’s when I washed it. I was more fatigued than I could ever have imagined. So I blamed it on the shot and kept waiting for the effects to wear off. A year later I still felt the same way, only now my back was hurting, my hips, my feet, my hands and the migraines I suffered from, got worse. I kept going to the doctor, no problems found.
I remember one day my Mom asking me to help her pick some berries. I told her I couldn’t, because my skin hurt so bad I couldn’t bear to move. She then tells me that my sister that lives in another state is having similar symptoms. REALLY?? So I call my Sis and discover the words FIBROMYALGIA and CHRONIC FATIGUE SYNDROME. I go look them up and REALLY??? There is a name for this? There is actually other people like me? I then start to find out that in addition to my Sister being diagnosed with the Fibromyalgia, I have Aunt’s, Cousin’s and even my own mother suffering from the symptoms of these two Chronic illnesses. The dots were starting to connect.
It just so happened that at one clinic I went to because of the pain and migraines, there was a Physician’s Assistant there and I told her about my suspicion of having Fibro and CFS. She was so supportive, and so understanding, BECAUSE SHE TOO SUFFERED FROM FIBRO AND CFS!! She gave me tips, she made sure I was referred to a great hospital where I was diagnosed and treated for Fibromyalgia; after going there for a year, they referred me to a pain specialist. I have been diagnosed with Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Disorder. REALLY?? All three? Yes, all three. So know I know what and sort of why I have pain and fatigue. But that doesn’t cure it, that doesn’t make it go away and it doesn’t make other people, even my husband, understand what it is and how to deal with it. He tries. He loves me, he accepts me, but he gets very frustrated. I can’t make any plans, because I never know how I am going to feel, but chances are, it isn’t going to be feeling GOOD!
Needless to say, waking up tired, and waking up most days feeling like you got the worst end of a “bar fight”, is not pleasant. It gets old. It becomes depressing. It is totally frustrating and annoying. It annoys the person experiencing it and it annoys and frustrates the people who care about the person experiencing it. I get that. I understand that. I just would like for the people that REALLY don’t ALWAYS understand, the one’s that look at you like you are out of your mind, (How could you be too tired to do this or that? YOU haven’t done anything ALL DAY??) and question how you really feel, how bad your pain really is, how tired and drained you really are! For those people I wish I could put in to words what it really feels like and how hard it truly is, to just keep a stiff upper lip and keep trying to put a smile on our face. Yes, I am going to complain sometimes, I am going to cry sometimes, and sometimes I am just going to be in a crappy mood, because I am sick and tired of being sick and tired. Some times I hurt too much to do anything, and that includes getting showered or changing clothes. Some days I am going to sleep and sleep like I have some sort of “sleeping sickness”, but I am JUST PLAIN TIRED. Some days the hardest part is just dealing with the pain and fatigue and any extra pressure or stimulation just pushes someone with these chronic illnesses right over the edge.
Oh, and just for the record, I DIDN’T CHOOSE to feel this way. I didn’t want to be tired, to feel continuous aches and pains and new pains here and old pains there. I wouldn’t wish this on anyone. It’s kind of a hell all it’s own, being stuck in a body that gives you pain and mostly just doesn’t cooperate in any way. Yes, those of us who suffer, WE DON’T CHOOSE TO SUFFER. We can’t just take a pill, change our diet, or wave a magic wand and make it all better. We NEVER KNOW how bad or how good a day might be. We hope for the best, but honestly have to expect the worst, because “the worst” is THE WORST!! We have flu like symptoms that NEVER go away. We have a tired feeling that cannot be changed. It has nothing to do with us WANTING OR NOT WANTING to do things!! Everything has a priority. Our first priority is usually to get the pain to a tolerable level. Priority 2 is usually food, bathroom, and entertaining our minds so we don’t go bonkers from the pain and fatigue. Trust me, we ALREADY FEEL GUILT from not being able to do simple and easy things like everyone else. We ALREADY FEEL GUILT for not being able to contribute as much as we want to or feel that we should. Please try to understand that this is a disability that has so many symptoms and so many different effects on our body that sometimes we just don’t know if we are coming or going. Sometimes it’s hard to think. Sometimes we might not make sense or remember things. Please be patient with us, we are doing the best we can, whether you think we are or not. Try to be supportive! TRY to be understanding, even when you don’t quite understand. DON’T BLAME US for our illnesses, we already have enough guilt for being ill and feeling bad! BE EMPATHETIC, and try and put yourselves in our shoes, and imagine you got the worst flu ever but it never EVER goes away and you are STUCK with it.
The one thing I have learned about the types of people who get these illnesses, Fibro, CFS and Myofascial Disorder, is that WE ARE ALL VERY, VERY SENSITIVE SOULS! We feel things more deeply. We hurt more deeply, cry more deeply and LOVE MORE DEEPLY than the average person. We FEEL the cold, the heat so very strong and we can actually take on pain from others, and stress and depression. WE FEEL EVERYTHING TO THE MAXIMUM LEVEL! We FEEL what you and other’s feel, IN ADDITION to the pain and fatigue we already feel. We have a sort-of sixth sense about things. I know personally, I wish I could turn feelings off and just be UNFEELING for a while. But I can’t, because I care, I feel, I love, I sense things too deeply and there is no “off” button for my heart. I see the deep sensitive souls and care-giving hearts in almost every person I meet with these illnesses.
As loving people, we should be kind to anyone and everyone with a disability. We should nourish understanding, support and really try and find a cure for these and all syndromes and disorders that take away a person’s ability to LIVE a somewhat normal life. We have to stick together and really make others MORE aware of just how much those of us who deal with Fibro, CFS and Myofascial Disorder, are negatively effected in our every day lives and the lives of those around us. This is the first time I have written about my experiences and thoughts. By writing down some of these things, I hope I can help other’s understand the severity and disabling effects we suffer through. I also hope to show those that fight everyday with pain, that they aren’t alone. We are all in this together. Let’s show each other Love, Support and make sure prayers go up everyday for our healing and for strength. God Bless and Keep us all in his care!