I have written about the balancing act that comes with fibromyalgia and chronic pain. There is also an art to fibromyalgia. The great composers such as Bach, Beethoven, Mozart, Handel and Chopin all had one thing in common; their never-ending quest for excellence and perfection. The great impressionists also had the same qualities. Dot by dot, stroke by stroke, each painting was not a half baked undertaking. All their great works were completed after much preparation, study, trial and error, experimentation and ability to learn what works and what does not work. As ‘outside the box’ as it sounds, there truly is an art to master living with fibromyalgia.
The biggest conquest for anyone with fibro is learning how to manage day to day pain. For every patient there is a different answer. You will see me write this many times: my pain is not your pain or ‘her’ pain or ‘his’ pain or the pain of the person that lives down the street from me. My pain is not the same of the many people I talk to at the store. I am my fathers daughter! I can talk to anyone. I was in Wal Mart a few weeks ago looking for shampoo. I knew what I was looking for but it was like that book the kids and I used to have fun with, “Where’s Waldo?” Trying to find the “Hold and Lift” version of my brand along with the 500 other brands was about ready to make me scream. A very sweet, elderly lady next to me started talking to me. She asked me if I saw the shampoo she was looking for. We began a conversation that would last a good, full, five minutes. Dad would be proud of his girl. We compared hair notes. I complained about my thick, unruly wavy locks. She complained about her straight, silky hair. I love straight, silky hair. My best friend in my childhood Tammy J. had long, black, silky hair. I loved her hair. I have my mothers Mediterranean locks; thick and wavy. The lady told me that the very next week she was paying a lot of money to have what nature gave me, a permanent wave put in her hair. I told the lady my husband would enjoy this conversation stating he quipped often about how ‘us women were never happy with our hair’. In the end her shampoo was two feet in front of her. She thanked me for the good conversation and laugh, I did so likewise and walked off with a smile. My hair is not her hair….. her hair is not mine and as much as I can try and ‘get’ why on earth she would want to have the very thing I fight….. wavy curl…… I am sure she was left that day trying to get why on earth I would want straight silky hair. The same is true for pain. No one will ever understand my pain and I will never understand the pain of another person. Empathize? Yes. Sympathize? Of course? Completely understand? Impossible. Since 2009 I have been on the best ‘cocktail’ I have ever taken since starting treatment in 1996. It is not the golden ticket…. far from it. However, it fights my pain as well as anything and being that it is not an opiate, it does not leave me loopy. I like that a great deal! My pain levels never get below a six. Ever. A six for me is a good day and I get one of those maybe three to five times a year. Out of 365 days, I get maybe 5 good days. 7-8 is tolerable and that is where I sit about 75% of the time. 8 1/2- 9 is bad and 10 is miserable. Bad and miserable are the days that take the wind out of my sails. The art here is to not be labeled a complainer but rather a crusader. If I only make one person a day aware of fibromyalgia, I have achieved my goal.
When you hurt all the time there comes a time when you do need to vent. How do you master the art of venting without being labeled a whiner? In spite of a society that says “Push through it” or “No pain, no gain”, the same people that say these things are not in your body feeling your pain. If someone who is also hurting chooses to be a martyr, that is their choice. I have heard more than once, “I am hurting too, I just have to deal with it and go on.” If I could ‘deal with it and go on’ I would. I did for years. I worked ‘through it’ and ‘went on’ as long as I could. My Doctor stopped me before I killed myself on the road or collapsed at work and had to be hauled away by an ambulance (between my asthma and fibro, I was actually almost taken away by ambulance more times than I can count). In the same sense hurting when there are Doctors and medicines available to help is a choice that each makes him or her self. If a person has a condition that causes pain and decides to push him/ her self, that is their decision to make. It is not the fault of myself or any other chronic pain patient who finally has had the courage to say, “I am calling it a day” to blame us because we have listened to our health care providers recommendations on how we should live our lives. I get criticized for speaking raising awareness, notwithstanding, at least I am doing something productive. I am writing, not drowning in daytime TV. The fact that I choose to educate on fibromyalgia awareness does not mean I am asking for pity. I love to write. It is my passion. It is great therapy. There are still ignorant trolls who think this condition is not real. There are newly diagnosed people everyday; women, men and children. Fibromyalgia affects over 5 million Americans with about one in six of those being under eighteen years old! People need education available them. Who better to educate than a twenty year veteran of the condition?
Along with the art of fibromyalgia comes the art of knowing when to reach out to other people. People, as a rule, reach out for a lot of reasons. We reach out for prayers, comfort and help. We reach out to other people going through the same types of things we are going through. I have seen mothers reach out who are overwhelmed. They are tired from only getting a few hours sleep. I had four children in eight years. I understand this frustration. At least they have a cute face and a warm cuddle at the end of the day. On my ‘Sleepless in Salem’ nights, the clock just ticks away as the early morning hours march on. I feel so alone. Mothers want their children. I did not ask for this illness. As a Christian, I have found great solace reaching out through to my church family. Recently, however, I had an experience that made me guarded to say the least. Bearing in mind I am careful to try to make it clear I am not being negative. I accepted long ago my fibromyalgia and the fact that I have to live with progressive, chronic pain. I recently went through a three week bout where I had a tooth abscess followed by a cold which was then followed by a three day migraine headache. Because viruses and other illnesses hit me so much harder, even a mild cold is very difficult to fight and extremely uncomfortable. I was miserable for three weeks straight at a pain level ten. Most…. 90% of my church brothers and sisters…. are wonderful, caring people. There are, on the other hand, the ones who look for a deep, longing mystery in everything. Sometimes it is just about a virus. Sometimes it is just about a broken tooth allowing infection in. I recently reached out to my church on Facebook and asked only for prayers. I did not ask for anything else, just prayers. I have been so sick for so long that it has been months since I sat in and worshiped. The message is available online and that is great. It is very appreciated. It is, however, not the same as being there. It is not the same as being there for the music, the dancers, the group prayer, laying of hands and the warmth of a touch. Nothing replaces what being with your ‘family’ in worship brings to your soul. After putting this out, I was not pleased to get a ‘sermon’ about how I should seek God’s will in my sickness and not what I WANT. What? Excuse me? OK, first, I had spent nearly three weeks in miserable mode. WHY was I getting this? I was not asking for prayers for my fibro and made that abundantly clear. I was very restrained, knowing the young man that posted the response was half my age, knowing he likely did not know anything about fibromyalgia and making it very clear I just wanted prayers for the secondary virus, tooth issues, etc that occurred. I don’t think wanting to feel better was being unreasonable. The person who wrote this apologized and and said he meant no harm. I don’t think he did but why did this have to have some big, huge, deep meaning? I just wanted prayers. It was just about a virus, a toothache and a headache. Even our Senior Pastor has preached on more than one occasion that sometimes things happen not because God has a reason or the enemy is out to ‘get us’ but because sometimes we have dumb, bad luck. Sometimes we just have a hubby that picks up a cold bug and gives it to us which is not his fault either. So a few more people offered up prayers and all was good and even helpful because I was improving the next morning. Out of nowhere someone comes and starts hurling Bible passages at me like a horrible sinner that needed to ‘reeee-pent!!!!’. I was dumbfounded. Did he not read the previous exchanges? Did he not ‘get it’? The quickest way a very evangelical Christian can lose me is to start hitting me with ‘hell, fire and brimstone’. I own five Bibles and have a computer that can pull any verse I want up in seconds. I know how to read. I asked for prayers, not preaching! I am a moderate- liberal Christian. I believe God is loving. I believe he is compassionate. I do not believe everything is evil. I do not believe in preaching that if you are sick or if you have a problem it is because God is trying to teach you some grand lesson, or worse, trying to punish you. I also believe before you belong to any church with a building and preacher, you have to have a personal relationship with Jesus. The sad part is, I am not sure if I am ever going to walk through the doors of that church again. The first person shell-shocked me; the second person scared me off. The saddest part? Some of the best of the best people I know belong to that church. They are hurting financially, in part because a drove of people left. Well they may have just lost me. All of this because I reached out for one thing. I reached out for prayer and only prayer. I need to refine the art of reaching out I suppose. I am still a work of progress in this area.
Two other good coping mechanisms are various support groups and finding friends that share your pain: whether it is online through such mediums as Facebook or through your Doctors office or other local medium. The art of mastering support groups is avoiding drama! Online especially, drama can be a real problem. I have seen numerous issues blown out of huge proportion and people getting into gigantic fights. I have seen back-stabbing, name calling and have had it done to me as well. There have been dramas that I have watched from afar and have been no part of. I have had a fellow sister in pain tell me to ‘push through it’ or ‘suck it up’ when if I had said that to the same person, she would have ‘had me for lunch and spit me back out’. Talk about double standards! I have had the saddest thing happen on my husbands side of the family with a family member of whom I have tried for years to be cordial towards only to find my efforts met with lukewarm to even cold results. Both my husband as well as myself finally gave up. The sad part is, this person pushed us away and set the stage now for a gaping hole. Because of her / his (not specifying) treatment of me, my husband wants, at best, arms length and basic human courtesy to this person. There will be no real relationship…. unless someday this person sees that I did indeed try to build a foundation for a family relationship only to have effort after effort go rebuked. Now I am not naming any names of any person in this situation, I am not naming any groups, I am not naming names PERIOD. I do not want to hear through the grapevine that “Kelli was talking about this or that group” , “Kelli was talking about _____” or “Kelli was talking about ‘me’ “. Kelli is not saying who or what she is talking about….. Kelli is not naming names of any person or any group. I am making one thing clear: I am writing a story. I am telling a tale and using examples. If I wanted to name names, I would. However, I am not. Case closed. The actual point I am trying to get across is simply: Beware of drama!
I have made “friends….fellow warriors on this journey” that live as close as five minutes away and as far, as I call my ‘internet bestie” who lives down under in Australia (babe, you know who you are and I love you with all my heart) …… and every place in between in countries such as the UK, Canada, Portugal and many other places. I have a very dear friend in Yellow Knife in the northern territories of Canada…. she is one of the strongest people I know and is doing some amazing things up north! I have a super amazing friend over yonder in Alabama who talked me through some pretty dark times. She is one of about only five people who know everything that crushed my world at the first of the year. I know someone near DC and by goodness if we ever get up that way, we are meeting for lunch! There is the woman who is probably what I consider to be my best friend and we go back to Jr. High School. Though she does not have fibro, someone close to her is walking this walk. There are just too many wonderful people to name. I belong to some wonderful groups that have helped hold me together when no one else could. These groups get it when I am up at 2 AM, 3 AM, 4 AM watching the clock slowly move by as I try as hard as I can to sleep but the sandman gave me a miss for the night. Alas, where people gather….. whether in person or on in a virtual coffee house, drama can and at times does erupt. Does this mean we avoid groups? Of course not! Do we become hermits because sometimes life is not fair to us or because maybe someone says something rude. No, that would be paralyzing. I think, however, what we do is learn to back away when drama begins to rear its ugly head. I have learned two things: you pick and choose your battles and it takes two to fight. If only one of you is swinging and only one of you has his or her hands raised without throwing a punch, pretty soon the person throwing those punches will stop.
When I was diagnosed with fibromyalgia as a young Mother, I never thought my condition would get this bad. I never imagined the collateral damage that came along with the pain. I think the biggest shock, in any event, is that one becomes an ‘artist’. You master the art of your condition. Just as the great composers and painters, you learn when and how to approach everything from educating to reaching out. You will never be a finished project. You will continue to learn as you go along. Like all great artists, we become better and more skilled the longer we practice. Notwithstanding, you will become quite refined in the art of fibromyalgia. Until next time. K.