Living my life through a window’s view..

Hubby made a comment yesterday about one of his work ladies bringing her baby to work. He got to hold and cuddle the little one and he was geeked about it. It stung. I realized I’m starting to feel insecure and jealous and I don’t want to be that person. I’m missing out on even the simple things in life to bring one some happiness. I feel trapped behind these four walls. I see life passing me by and I’m only in my early 40’s. I should be living it up before my 50’s strike. I’ve been ill since my early 20’s with periods of time where I was managing ok but the last, going on 6 years now, have only been a downward sloap with no real periods of remission.

I have so many health issues that they seem to feed off each other, one flaring up the other and making things worse. It’s embarrassing how many conditions affect me. I don’t want to be that person. I am that person. I hate it.  I’ve always wondered deep down if I had never joined the military, if I’d be much healthier today. That was the catalyst. I’m certain of that.  I was pretty healthy before hand and it didn’t take long to start attacking my body, shortly after joining. Was it the vaccines? The abundance of physical activity? Some other kind of exposure? I do know I’m not alone in what I suffer as there are so many veterans going through the same. Maybe we all have a certain genetic disposition that caused us all to express certain genes that might otherwise have remained dormant? I have found that many of us are hypermobile. Many have gone on to be diagnosed with ehlers-danlos or hypermobility syndrome. Is that the link? But not all of them have that.

What we have in common is ME/CFS, fibro, IBS, chronic headaches, and unexplained neurological signs and symptoms. There’s more but that’s what the VA will compensate for. A lot of us also have GERD, other stomach issues, IBD (which they deny the link), migraines, and other problems involving our joints and muscles. Various cancers run higher in veterans as well as MS, parkinsons, ALS, and other problems. I can logically understand arthritis and wearing and tearing of our joints due to all the physical requirements. That makes sense. But what about the rest of it? That’s where things get murky. What do we all have in common? Why do we all suffer so many similarities? Even if the general population were to start having the same health issues at the rate of veterans, we were the first. At least that I’m aware of, so it started with us vets.

So many studies to get to the root of the issue and yet most of that money seemed wasted on studying stress and the human body. Not all of us were put under loads of stress. I guess putting the focus on stress makes it easier to blame the mind that any physical exposures we might all have in common. No government would want to admit to that, but it’s what most of us are thinking.

We will probably never get any real answers. At least not while still walking this earth, or in my case, watching life pass me by out the windows of my home, stuck behind these four walls, and sinking into a funk, wishing myself well again. You can only hold on to hope for so long. As the years pass by, that hope gets heavier and heavier to hold onto. Trying to keep a positive mind frame but when you’re riddled with pain that’s inadequately treated, it has a way of making hope, that much heavier.

Fighting To Be Believed

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.

I’ve had completely normal vital signs while suffering severe pain. I feel like my body betrays me when this happens as doctors and nurses seemed trained to believe that you have to have abnormal stats in order to be in pain. They need to go through classes on chronic pain and what that looks like. Apparently to doctors and nurses, it simply looks like drug seeking and yet, that is very far from the truth..  Believe your patients peoples! I’d rather give a drug seeker care and attention than to treat a chronic pain patient with suspicion and bias. It’s just not fair or just to those who truly suffer.

 

Mental Illness is not real… My theory

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….

Hidden

10/28/2014 Dianne MacKay

 

It’s those with type A personalities, the ones who strive for perfection, the ones who hold everything in, that you should worry about.  Not in the sense of being harmful to others, but to themselves.  They hold it in cause if anyone sees them cracking then they lose their pride, their self-image, their self.  They’re the strong ones.  They have been relied upon so much that to stop now spins everything into chaos.  It’s not always realized how much they hold the pieces together both in themselves and with all the lives connected around them.  It’s too late to check themselves out, without fracturing everything so neatly held together.  Narcissistic?  Nope.  Just overly honest.

 

 

She had No Name…..

I was born a sensitive.  In time that was to my detriment.  Hold it in, don’t let them see you affected.  Be strong.  Be tough.  Instead, rather than show it to the world on their sleeves, it instead stays hidden, buried, deep, with a smile on my face.  No longer taking pleasure in what was once my guilty pleasure.  A world apart, my escape…no longer there to sweep me away and allow me to dream…  So I lie? No, I smile and don’t look you in the eye.  I’m fine.

 

Are there Angels out there watching over me?  Do they feel my pain?  Do they see me sinking further and further into despair crying out for sanctuary?  Do they hear my cry?  The physical pain is unbearable at times, yet I press on.  Life goes on right?

 

Where are you?  You see me, but you don’t… You hear me, but you don’t…  You’re here, but you’re really not.  Do you see the invisible tears silently falling down my cheeks??  Do you feel the pain rolling off of me so thick it chokes me?  Do you not feel the difference?  Where are you?  Who are you?

 

The pressure comes at me from every angle.  Pressing on every nerve ending and sending currents of electricity through my mind, exploding into fragmented shards of frustration, leaving me in an exhausted state of morose melancholy.

 

The downward spiral clutching at my aching heart pulling me in all directions.  The dizziness spinning me in circles, not sure where to rest my feet. My body falling apart to the mental anguish tearing me inside out.  Which will break first?  Does it matter in the end?    The fragile pieces of me holding to that one spark that refuses to extinguish.  The music of my soul clinging to the desperately whimsical thread of existence still lingering and burning within.  Crushing, gut wrenching solitude of depression as the walls close down upon me suffocating me into a corner of life where wild flailing of mental anguish seeks to rear its panicked head, pulling me under and drowning me in the depths of it.

 

Oh the tower of my existence, alone and isolated.  No one to catch me when I fall.   No one to take charge as the place was already filled long ago, used up and now useless to anyone else.  A place left for those to stumble in the dark and look for that spark of flame just out of reach.  Sing to myself, sing to my soul.  Pull the darkness down and me out of its tangled clutches.   Burn the pain. Burn it up.  Take it away in a wisp of smoke blown into dust in the wind.