Today is designated Fibromyalgia Awareness Day, don’t ask me who designated it so; all I know is today is the day. (Thursday, May 12th)
I was diagnosed with Fibromyalgia 10 years ago and it’s taken me that long to learn how to pronounce and spell the word. F-I-B-R-O-M-Y-A-L-G-I-A, my theory is that the medical profession didn’t expect to diagnose many cases of it and therefore they would never have to learn to spell the word themselves.
Ten years ago there were more unknowns then knows when it came to the auto immune disease with the odd name. Thankfully that is not the case today and strides have been made in establishing research centers and clinics that specialize in the illness. Perhaps just as important is the medical community is becoming educated it is not “just all in your head” when treating a patient, which is a major part of the battle for patients surviving with the illness.
What I can tell you is that Fibromyalgia medical code is 729.1 Myaglia and Mytosis Unspecified and it sucks, big time. Now understand this isn’t about throwing me a pity party, I know I am blessed in that I do not have an illness that rank on the terminal list. However, I believe it’s important for those of us inflicted to speak out for those that will also suffer from the illness and those who live with them.
You see living with someone who has Fibromyalgia is no picnic. The person inflicted looks perfectly healthy and it can become as overwhelming to loved ones as it is to the patient dealing with all the complications it brings on. A support system is vital to surviving, people you thought cared for you will run for the hills like cowards in retreat during a ‘flair up’ or ‘medication change’ or ‘you’re not being who you once were’. Friends disappear from your life as it seems you can never pull it together to be social anymore and romantic relationships become “collateral damage”, causalities of your own personal war to persevere. It takes a great deal of compassion, empathy, and patience to be a loved one, friend to a person with Fibromyalgia, no one knows this more than the patient themselves. There are times that I have hated myself with such a vengeance, unable to forgive myself for falling prey to this illness and all the changes it causes in your mind, body, and life.
As I often mumble to those close to me, “Fibromyalgia won’t kill me; it just sometimes makes me wish I was dead”. Anyone that lives with chronic pain knows what I’m speaking about. Sometimes it seems as though death is the only time you will ever feel any relief. There is no cure for the illness and the physicians for the most part do their best to treat the issues that arise due to the illness. The migraines, blood pressure, kidney and liver disease, diabetes, infection after infection, weight gain, depression, anxiety, bruising, digestive problems, vitamin and mineral deficiencies, brain fog and fatigue to name a few. Every patient’s case is different; the illness triggers various health issues on an individual basis.
I discovered in 2006 that various physicians prescribing medications to treat health issues without the left hand knowing what the right hand is doing, can turn ugly and deadly in some cases. When you get to a point that your medical professionals are prescribing medication for you to go to sleep, to give you energy to stay awake, to quell the depression, the anxiety, to boost the effects of the other medications, it’s time to STOP.
Soon all they are doing is treating the side effects of the medications, not the health issue. Your medicine cabinet looks like a stockroom for a pharmaceutical company or a street drug dealers dream. There’s the medications you have tried, but can’t dispose of because they might switch you back to and frankly they cost too much to replace. There are the medications you are currently trying while you await the side effects or they become ineffective.
Healthcare, one of the most debated topics of the last 10 years in the United States. For those that have chronic illnesses and no employment due to that illness, there is no debate. You place yourself in debt hoping that the next treatment, the next medication, the next physician is going to stop the pain, stop the deterioration of your body and put some sanity back into your daily life. Your 401k is drained, savings accounts emptied, charge cards maxed and you find yourself not only struggling to cope with the illness, but being financially in ruins. You realize you’ll be dead before you ever pay all the medical bills off.
Social security disability will stamp you denied, denied, denied if the physicians diagnoses is Fibromyalgia, after all the medical field lists it as a ‘syndrome’. Unless you can offer up something more worthy like, kidney or liver failure, chronic major depression, or some other illness they consider debilitating, you have no chance for aid. You wait until the day the physician diagnoses you with a REAL illness, in order for the government to deem you worthy of financial aid so that you can continue to receive medical treatment.
The psychological toll can be devastating. The depression over “sick and tired of being sick and tired”, the anxiety over not being able to pay for medical treatment and medications, the loss of relationships, friendships, the “fibro fog” that steals your memory, the obsessing over ‘stupid things’, and family members that just don’t understand why everything has become so difficult for you, adding to the guilt you feel about being a burden. Fibro fog has left me unable to do the simplest of mathematical equations, recount what I had for dinner two nights ago and remember phone numbers or directions even if they are common to me. Memories from my childhood that my siblings recount are lost to me, as is recounting what year an event took place in my life. Forget about trying to remember which medications I am on at the moment, I carry a list with me.
Finding a cognitive therapist that understands your illness and can offer treatments to ease your mind I feel is a must for survival. Being armed with an understanding of the emotional effects of the illness and how to counter those emotions, resolve situations and use your mind to release the stress on your body has played a vital role in my daily life. When a flair-up occurs and all you can think of is “the pain, the pain, the pain”, you train yourself to instead think of cuss words for each letter of the alphabet. Soon your mind is focused on the task and not the pain. Go ahead try it, not as easy as it sounds, unless of course you’re very well versed in cussing.
NO, suffering from depression and anxiety, while living with chronic illness does not make you crazy. You do not hear voices, you don’t talk to little green men and you have an all too sobering understanding of your reality, despite whatever opinions those ignorant to your situation might conjure up. If you have a broken arm, you seek medical attention. If you have Fibromyalgia or any other debilitating chronic illness, you need a trained professional to help you stay the course, remain focused on living life with the cards you have been dealt. Regrets, guilt and living for the past will leave you stalled there, in the past.
I spent the first couple years with the illness whining that it wasn’t fair, that I didn’t want this in my life, and the ever popular “why me?”. I finally woke up to the fact that I wasn’t that damn special, why not me? People dying from terminal illnesses, famine, war, murder, it’s not fair. They didn’t choose their fate; at least I could learn to come to terms with it, to learn that the bad days will not last forever, to not let the illness control me, that there is always hope in the new dawn.
Yes ‘hope’. Despite all the ER visits, blood tests, physician visits, medications and heart break of setbacks, I still remain hopeful. In helping others, I am able to heal myself, speaking out; explaining the illness to others has led to a degree of acceptance. To all my friends and family who remind me that as long as my name isn’t in the obituaries, then today is a good day. To those who stick by me through the bad times as well as the good ones. To not give up on someone when they are at their worst is such a special gift of love. I say thank you.