First of all I want to apologize for the length of time in between blog postings. I had to prepare for my SSD Appeals hearing and was blown away by the amount of last minute paperwork involved. To add to the mix, I have new evidence from my hospitalization over 4th of July weekend that was pretty heavy duty and needed to be submitted. Paul and I worked together over the course of several days including four days that we had to turn off the phones and internet shut the world out. Our living room looked like a paper factory had exploded in it. Stay tuned. I will post part two once I get the official decision in writing.
Most of us with Fibromyalgia know the nettle’s sting of having family and/or friends reject us in one form or another. Why? Because we have a chronic illness that cannot be proved by blood tests, scans, etc. Therefore, we are just ‘whiny, attention seeking drama queens/kings’. I will admit there are people who do nothing but talk about how much pain they are in constantly. This is tiring. As a Fibromite, even I can only take so much of this. And when I do need to vent, I usually get the old, “Oh! I know what I mean, I have that too and this and this and that too!” aka, the ‘one up syndrome’. So I choose when, where and to whom I vent wisely. However, how beneficial is it, really, to put on that game face and hide everything? I have never done the martyr thing well and have a great distaste for people that partake in it. We have all know them. Add in passive aggressive and we have super martyr.
What has prompted this post is two things. First, the fact that someone close to me has called me a slew of horrible names and still does not know what (somewhat frightening things) were found during my recent hospitalization. I am not disclosing this openly, however, while we do not think it is life threatening it is “abnormal’ and is warranting more tests as soon as I have insurance this Autumn. Frankly, I am frightened. You try getting an abnormal brain scan and see if you would not be frightened. And then to have someone you have loved, cared for, gone to the mats for, taken crap from, jumped backwards through flaming hoops while farting rainbows and they suddenly turn their back; it is as cruel as it gets.
Second, the many posts I have read from Fibromites as well as our sister illnesses: MS, Lupus, RA and many other illnesses that they too have been kicked to the curb by family and friends. It is shameful! I would ask someone who would do this how they would feel if they had an illness which affected their life 24 hours a day, 7 days a week; How would you feel if you were gossiped about, called names and dumped to the curb by someone who is supposed to ‘love‘ you? I don’t know about anyone else, but from where I stand, that is NOT love.
Fibromyalgia is not a terminal illness unless you count the many people who take their own life. As I have stated many times before, the suicide rate for Fibromyalgia Patients is 8-10 times higher than the general population. If you are reading this and have Fibromyalgia, you do not need an explanation. However, if you are lucky enough to be Fibro free let me give you a little tiny view into our world. This is not a ‘pity party’, nor is it a plea to feel sorry for us. It is simply, our reality.
Imagine a time when you had the flu. You ached from head to toe. You were exhausted. You could barely get out of bed to use the bathroom. Every move… every step took effort. You had a throbbing headache. You were dizzy. Maybe your heart raced. The glands in your neck were sore. The light hurt your eyes. Every sense was overwhelming…. sight, sound, smell, etc. Every move took great effort. In fact just the mere act of getting up, off the couch, took effort beyond what you could extend. Your head is so full of fog, you cannot think straight to save your life. AND NO! It is not from ‘the drugs you take’. Nothing can get me from calm to totally upset than someone blaming it on the meds. For the record: I am hurting WORSE than ever (remember, my neck is completely wrecked; every inch of it has an issue and this is separate from the Fibro), yet I am LESS medicated than I have ever been. I told the PA at my pain management office just the other day that this cocktail is perfect. Do not get me wrong, I still have bad days. However, this cocktail gives me as much relief as anything can while maintaining clarity. Even my Doctor has said he is surprised, given my neck, how well I am responding on this ‘low’ dose of medications I am on.
I just described the bad end of the spectrum. The ‘good end’ is like you are coming out of that flu. You are ‘rummy’. You have malaise but can do some things. Not much. Some. You still ache but instead of feeling like you got hit by a bus, you have been hit by a car. If you get a few things done during the day….. fold a couple loads of clothing, cook a simple meal and maybe run to the store for a few items, that is a ‘good’ day. The headache is there, just dull instead if throbbing. The muscles hurt, but instead of feeling like the balls attached to you are 100 lbs, they are 50 lbs. The brain fog is there but instead of losing everything, you only manage to lose 1/2 of the things you need. You are either tied to the bathroom or feel as bloated as Jabba The Hutt because you have consumed an entire bottle of Immodium the previous 3 days. Add a cervical spine that is compressed like Scarlett O’Hara in her corset and you are stumbling, tripping…. possibly falling….. and dropping up to 1/2 of everything you pick up each and every day. Imagine for a moment that every time you pick your keys up, your brush, a spoon to stir the spaghetti sauce or even a stack of important papers you drop them. Many people know about me dropping my cell phone days after getting it and the repair for the cracked front was $140.00. Many of us…. myself included… do not really have a life, we have an existence. My Grandchildren are my joy and of course my oldest daughter who has been my saving grace. I don’t think she knows the joy they all bring to my life.
Those of us with this unforgiving force do not need to be shunned. We need love, understanding and caring more than ever. Fibromyalgia IS REAL. People can stick their heads in the sand, but it is not going away. And until people quit treating us like modern day lepers, the suicide rate will continue to climb, the stigma will stay and the depression rate will soar. I recently received a comment from a two time cancer survivor who said she would rather battle cancer than Fibromyalgia. There are no words I have for that statement as it is one of the most powerful testimonies to how horrific this condition is that I have ever heard. I have to wonder how loved one would treat us if we had cancer or another like illness. Would they call us drug addicts? Would they call us malingerers? Would they call us lazy fakers? No. Never. This leads me to a recent event. I walk on a virtual land mine to be the person those I love want me to be. “To thine own self be true”? Never. I am too busy being what I think people want me to be. It is all for naught. Sleeping 2-3 hours a night with papers strewn all over my living room, I was tired and nervous in the days leading to my disability appeals hearing. I did overreact to something regarding a loved one. I apologized. On top of all this, I was learning how to use the voice recognition on my new phone. It sends a lot of texts, rather than one long one. This was a learning experience for me and bear in mind, we all have learning experiences…. it is a part of life.The texts sent back to Paul were vile and hate filled. I was called a “Mentally ill drug addict”. I am neither, but why try defending myself? It is a stigma many of us with invisible chronic illness face. And they wonder why so many commit suicide. Recently the great Robin Williams took his own life. I am heart sick. He did have bi-polar so it could be said he was ‘mentally ill’. However, it did not take away from his talent and how many laughs he gave us over the year. He added so much to so many lives. God rest his soul. Oh how I wish he had reached out to someone….. anyone. Now he is gone and the world is a little darker for it.
As for ‘drugs’; I have never used illegal drugs, including pot and my Rx meds are all on the low end of what I can take to help: in other words I do not over medicate. I do not agree with the school of thought that ‘one should just tough it out’. Why should I or anyone? My meds help me …. they are imperative and are the difference for me getting through my day with some degree of function vs being laid up day in and day out. I am not doped up, but the meds I do take allow me to control my pain enough to have *some* quality of existence…. not life…. existence. I do other things too such as eat healthy, meditate and low impact exercise. Nonetheless, I owe no explanation. The person the made this horrible, hateful accusation did so for no other reason than to hurt me. The saddest part, my life is hard and dismal enough. How can someone that proclaims to love you say such a horrible thing? Especially when your life is hard enough as it is.
So we, those of us with chronic, painful conditions have a ‘group’ of sorts. In my own case, about 80% to 90% of my friends on Facebook have either Fibromyalgia, Lupus, MS, RA, CFS/ME, etc. I also have many friends who do not have these issues but suffer from anxiety or spinal stenosis. The one common thread? We all have a chronic illness and we have all been on the receiving end of platitudes, ‘advice’, disbelief and good ole’ gossip. So many of us rely on each other whether talking to each other or in groups. We have each other to vent to. While I do not like the ‘one upping’ that can sometimes transpire, I will say that I have made some wonderful friends all over the world. I have these people I can talk to anytime…. day or night…. any time I want. Nonetheless, sometimes there are things my loved ones need to hear that may not pertain to my Fibro or my neck. Our loved ones need to listen when we tell them, this is serious, you need to listen!!!! I have a loved one that still does not know about an abnormal finding on my brain scan. I must deduce this person does not care. Also, having a good, supportive partner is essential. Paul is my Northern Star but he is not a ‘yes man’. If I am being unreasonable, he will call me on it. He sees my personal hell on a daily basis. The morning of my SSD with poetic justice I dropped my cup of coffee all over myself and my kitchen. I laughed. I cried. It was so sad, but so funny. How apros pos.
What needs to happen is simple. Those that think we are ‘faking drug addicts’ who just want to get out of working: this mindset must change! THIS is NOT how I envisioned my life. I am still young. I had hopes and dreams. Crushed. No, I am not having a pity party, I am being realistic. Anyone who thinks we want this mess: they are the ones who need their head examined. I am going back to the cancer example. Maybe it is easier because cancer has one of two outcomes; remission/cure or sadly, death. Maybe it is easier because there is a definitive ‘end’ at some point. Maybe with ‘us’, because in most cases we are not terminally ill, but chronic and for life it means we are going to be this way for the rest of our lives. Well I have a secret, if it makes you uncomfortable, how do you think that makes US feel? I know that (unless a cure is found), I will hurt, each and everyday, for the rest of my life. And not just hurt, I mean HURT. Nonetheless, I put on my ‘happy’ mask and rarely talk about it.
My message to fellow warriors: To thine own self be true. All we can do is the best we can do with what we have. Most of my fellow warriors rarely, if ever, talk about their illness to others (people lucky enough to not have to endure our hell). However, when something serious comes along we do need to let our loved ones know. If they refuse the information, ask yourself: “Does this person really love me?”. Is it worth getting upset or worse, feeling guilty about an illness you have no control over? Of course not! You did not plan, anticipate or ‘sign up’ for this horrible lot in life. So we just do the best we can each day. I suggest we don’t make every conversation about it and in fact rely on your fellow warriors more than those who will never get it unless they get sick someday. Even with that, try not to think about it all the time. I try to keep my mind occupied all the time. It is hard when getting through the day means dropping things constantly, 50 shades of hurting, muscle spasms and a lot of tears. But try. Try and focus on other things.
My message to Loved Ones: Try. Try to understand what our life is like. From the moment my eyes open in the morning, that familiar throb throughout our body reminding us this force called Fibromyalgia is calling the shots. If it is raining, we know without even looking outside. For me: 10-15 headaches a month and the rest of the month I have some sort of headache. This means I have a headache nearly if not each and every day. Some days I am so fatigued, it is all I can do to shower and just collapse on the couch. My time management sucks because my gut runs my clock. At least five nights out of any given week you can find me pacing the floor at 3 AM in so much pain that I am in tears. I must leave Paul to sleep so he can get up for work. Night…. it is the worst and loneliest time. All the same, I try. Not only do I try, I feel like a puppet on a string trying to obey my puppeteer’s commands. Most of the time I get it right but when I don’t, I am thrown in my box, lid is shut, latch is locked. Wait! I am not a puppet! I am not a machine! I am human. I am just like every one else: subject to imperfection. Remember that. Remember, it is hard to live our lives. Our existence.
As stated earlier, I was so saddened by the death of Robin Williams. However, when I found out his suicide was brought on by a bout of depression, I was not ‘surprised’. By surprised, I mean I ‘get it’. Oh how I wish he would have reached out. But in the bitterness of his exit from this earth, maybe we can begin to break the wall down and get people to quit judging those of us with invisible/taboo illnesses and just start loving. Until next time, K.