I’m tired of dying every day and being uncomfortable in my own skin. Of watching the light fade from my children’s eyes as another mention of “not right now” whispers through their ears and the ensuing frustration and defeat that washes upon their faces… my kids need me now. My hubby needs me now. My mother needs me now. My family needs me now. Tomorrow might not get here and time flies, moments pass, needs go unfulfilled looking for outlets and something to fill the void from avenues best left discarded.
I remember those times. My children are there now and yet I’m here, I see, I know, but I’m not present and I see this being fulfilled while my body falls apart and my mind wants to spiral. To be so dependent on a stinking little pill to wash away the pain and fatigue yet such controversy on something so tiny that gives me life in a way few will understand. No high needed or received, just relief, blessed relief from the torture my body inflicts upon me. Some days, not near enough, leaving me so despondent, I rather wither away and free my family from the burden I feel I’ve become.
The negative thoughts and heavy weights weighing them down like a chain around their necks in a sinking ship lost at sea. To free them. To free myself. To put an end to the drain on this life and allow healing to begin and forward movement on their own journeys this life will bring. May they never be saddled with these illnesses that grip me so tightly, squeezing the life out of me. But it’s heritable. It’s the gift that never seems to end. One generation to the next. My burden, my cross to bear laid upon the shoulders of my tender children and the guilt that consumes me because of it. My fault.
I was once physically active. I was in the military ready to fight for our country and give my life if need be. But I got sick. I’ve been sick since service and getting steadily worse over the last 19 years. The last 5 years have been brutal on me. My life was taken too young. I’m too young to have a handicap plate, says one doctor. I’m too young to have a wheelchair, I’m too young!! Well, disease doesn’t discriminate. Here I am watching my children lose their mother. All the activities I did for my son, I can not do for my daughter. “I want my momma back” says my daughter. She misses our play time, my attention, my cuddles. Don’t touch me, it hurts. I can’t go, I have a migraine. I’m sorry I didn’t cook dinner…again… I have lassitude and standing hurts. I’m sorry we can’t go, I can’t walk and it’s not wheelchair accessible. I’m sorry I can’t play that game with you, I have sensory issues right now and am in a flare up. I’m sorry I can’t take my son to all his special needs appointments, my driving is being hindered and my body is in too much pain to leave the house. I lay here, my upper body not wanting to support me being upright. My frame is a skeleton as my muscles atrophy and my weight is gone. I get partial paralysis when the temperatures drop so I can’t move real well. I live for every few hours when I can take that little pill to allow me to move for two more hours. I have come to rely upon that pill to get on my feet. I still can’t walk far or stand long, but I can do a little bit with that little pill. Imagine what I can do if I had a dose strong enough to knock back most of my pain. Imagine having a bit of my life back again so I can be there for my children and keep them out of trouble, giving them the attention they need as a parent. I don’t know what my future holds or how long I will live to see my kids grow up, but I would like to. I would like to without the pain that cripples me because I’m undermedicated. I have a high metabolism and a high starting tolerance. It’s just how my body was made. I’ve exhausted other resources and opioids work and work well for me. I don’t get high. I don’t get euphoric or even sleepy. I don’t understand how others can abuse them as they do nothing to my mind, only relieve the pain either a little or a lot depending on how much I’m given. I’m tired of being treated like a criminal or druggy for needing a med to survive just like a diabetic who is dependent upon insulin. I need my benzo to sleep as I’ve tried all the others and a safe alternative made me stop breathing. My body is different than others. My benzo stops the muscles that tighten and spasm and cause dystonia like symptoms. It’s the only thing that works as muscle relaxers have no effect on me. I don’t know why. It’s just how I’m made. I’ve taken them safely for years. I don’t take them at the same time and I’m smart with my meds. It’s my body and my right, right? When did others acquire the right to make medical decisions about MY body?
Here it is in a nut shell, I would be more than happy to sign whatever form giving consent to increase my meds to a dosage high enough to combat the pain and give me a quality of living risking death any day. I would rather have some semblance of a life and risk dying from my meds than to live here in agony and risk dying from being unable to tolerate the pain anymore. Where does that leave my kids? My family? I’m the glue that holds them together. I’m in palliate care though see a typical pain management center and yet I still don’t get enough meds to function. I’m not going to ever get better and I’m now watching my own child deal with my pain as it passed down to him as well. He’s a teenager. He’s tried tylenol and NSAIDS (He’s lucky he doesn’t have my mutation that doesn’t process NSAIDS), but they don’t work for his pain. I’m so scared for him. Will he ever get the opportunity to use what has worked so well for me at the right dose? He already doesn’t want to live. He lives for me right now. I can’t imagine what will happen to him when I’m gone. He has no hope for his future and I’m losing hope for mine.
Do you want a productive society? Truly? Like any meds there are risks. Like any med there are benefits. I should have the right to chose what I put into my body and stick with what works and use the appropriate amount for MY body to be productive, to give back, to help society rather than lay here crippled and watch my family fall apart because someone without chronic pain decided they wanted to make my medical decisions for me. I’ll take death and pain relief over this hell my life has become. I’m a veteran and I’m suffering and now my child is is suffering as well. Cannabis might be an option for some, but it is not an option for me. It should be legal for those it does help, but I chose my current med as I don’t get high and it really truly works when at the right dosage. I chose life. For now.
One of the hardest things a person can go through, is having to fight to be believed by the medical community for whatever it is you suffer. It’s absolutely shocking how many stories I’ve read where Doctors or nurses yell at their patients, telling them to get up when they can’t walk, or flat out disbelieve the plea being made. It’s even worse when you have family or friends who do the same. I can not, for the life of me, figure out why anyone would ever fake an illness. Who WANTS to be sick? Who WANTS to give up their lives and lay there staring at the walls and be completely unproductive? I sure an hell don’t. In fact, it’s one of my biggest frustrations. I WANT to….. do so many things…. but my body betrays me.
The family and medical communities betrayal is absolutely the worst thing to experience during a time when your plate is full enough with all the disabilities your body is going through. There is absolutely NO justification for it. None at all. Zilch. It is NOT ok. Having invisible illnesses suck on the highest level since we look so normal but we’re far from it. Should I cut my arms in neat little slices to give a visible sign as to the pain I suffer? Learning to let go of it is easier said than done. And with doctors working FOR US, they really aught to remember that and start taking us seriously. I’m glad I have some doctors that do, but they still think along the lines of ‘we’re all horses’ even though a Zebra stands before them.
I think that’s why some of us jump with glee when we finally have physical proof, such as genetic testing, or some other kind of sign that SHOWS we truly are ill. It also makes some of us want to go back and hit them all upside the head with the paperwork. I know I want to, to smack them in the face with what they failed to consider, or believe, or treat. With many more of us having those rare or uncommon illnesses and diseases, we need to retrain our medical community to start looking into them. We also need an overhaul of the medical community from the top down. They’re failing their patients.
We should also have more attention brought to the public about how invisible illnesses work and affect us. Awareness of how normal we can look but how badly we can suffer. Maybe then, family will start opening their eyes to the truth and stop looking down their noses and gossiping about how ‘well we look’ and how we must be faking or looking for some kind of attention. It’s simply insulting.
And while I’m at it, please don’t cry to me about your fatigue or your painful hangnail. Most don’t know what true fatigue or chronic pain feels like. And yes, chronic pain patients handle pain differently. Our bodies become use to high levels of pain and learn to function as best as we can. So if we tell you our pain is an 8 while using our phones to read or get on Facebook, yup, we can do that and still be telling the truth. We handle our pain with grace as we suffer it daily and learn our own accommodations to survive. Some days we might simply be done with it all and just lay there, resting our bodies and recuperating. No, that doesn’t mean we’re lazy. Far from it. Our batteries are drained and we’re recharging them.
Mind blowing. Shocking. Relieved. Angry. Victorious. Vindicated. Depressed. Enraged. Scared. Defiant. Hopeless. Overwhelmed. Justified. Despondent. Tentatively hopeful.
Ever slipping from your grasp.
I’m not saying mental illness does not exist, but that it is a physiological process leading to symptoms that involve our mental health. We are new to the study of genes and what our genes tell us. How we express them, what is important, pathogenic, or completely benign. It’s an ever evolving process. But we don’t know them all, not even close.
Looking through my own DNA, there are multiple alleles of concern that can lead to a host of issues by one tiny tiny change in how my body processes exposures or makes a piece of me. That can then lead to differences in my make up that cause other genes to express that might not have otherwise. All of those little changes can lead to differences in my brain, both organic and inorganic. Both environmental and genetic.
For instance, say I have a mutation in the process that alters how I degrade nitrogen and instead causing me to overload on ammonia. The excess ammonia then alters my brain chemistry leading to symptoms that look like a mental health condition, anxiety, mood disorders, ect. In reality, rather than treat someone with an SSRI which adds more chemicals to the body and alters our chemistry, we fix the root of the problem. Maybe one day, Science will catch up and we’ll understand how all our genes work and be able to quickly scan through our data, find where our process has gone haywire, and then correct the problem, allowing us to function normally, once again. Make sense?
It’s sad, the stigma behind mental illness. It is so misunderstood. But remember when MS (Multiple Sclerosis) was hysteria? When Epilepsy was demon possession or psychosis? So many diseases blamed on mental health until one day, the Science caught up to it and a disease was discovered. I absolutely believe, that one day, we’ll figure out anxiety, mood disorders, bipolar, ect. One day, we’ll discover the root problem as we begin to fix the overloads or underproduction of our own faulty system and discover ‘the mental health’ aspect was fixed in the process. One day, they’ll realize, it’s not all in our heads. It’s in our DNA.
Just my thoughts….
I am white
so I have no voice
You are black
you have a choice
My views aren’t appreciated
They are not heard
When speaking to the masses
Of ‘blacks’ there’s no word
There are three camps
Whites blacks and ‘doesn’t care’
I chose the middle
I am aware
I see things different
Why can’t you see
It’s not about color
But of you and me
Your person your being
Who you are inside
Don’t listen to whites
Or the blacks that hide
They have an agenda
A deep seeded hate
Their blinded by anger
Will it ever abate?
The middle is growing
We’re tired of the fight
Between people of color
And those they call white
Judge others on merit
On their actions and heart
Not on lies or the pasts
We all deserve a new start
Hate is learned
It is not innate
Teach your children to love
Break free of the hate
Rise up together
Hold your neighbors hand
Say no to race
And take a stand
This was written back in 2003 before the medications they have available to help those who need it. Written for a friend.
Life’s one big party
> There’s nothing that can’t be arranged
> Except for the fatal error made that night
> Your life’s now forever changed
> You wonder what I’m speaking of
> It certainly can’t happen to you
> For sex is a freedom of expression
> There’s nothing you can’t do
> But one mistake, one careless night
> can bring death to your door
> You’ve certainly denied the thought
> Your judgment has backed you before
> You never can tell, big or strong,
> healthy or sickly too
> That the person you lay down with
> Can change the life you knew
> One day you wake up, something’s changed
> You don’t feel quite the same
> You wonder what has happened
> in this life, you call a game
> So then you see a doctor
> and sit and wait for word
> And the call comes in;
> one, you wish you never heard
> So you sit and absorb the emotions
> that grasp a hold of your life
> Thoughts that you’ll never marry
> neither a husband nor a wife
> You’ll never retire or raise your kids
> A child that will never grow
> Your life’s come crashing down
> You received a devastating blow
> You wonder where you got it
> wonder who to blame
> But now blaming is unimportant
> Life’s not looked at the same
> You wonder where life will take you
> however short it may be
> All because of one mistake
> Now you suffer from HIV.
DM Oct. 2003