My Battery’s Broken, Please Understand..

Many have heard of the spoon theory analogy for our chronic illnesses, but when I think of how to describe my illness, a broken cell phone battery comes to mind.

On a really good day, it charges most of the way up but typically it’s less than half way full. Simply using the phone, eats the battery up quickly and it takes forever to charge up again.

On top of that, the charger has some exposed wires that causes shocks and jolts of pain if I’m not super careful when using it. My apps are slow and sometimes they don’t work. I can’t rely on using them.

I feel that my pain and exhaustion is not understood fully. It hurts to get up, it’s exhausting and painful to stand and every little bit of energy I store up, I would like to use for myself to catch up on the long list of things waiting on me. Every time I help someone, I’m using up what little battery that I have and so it puts pressure on me and makes me angry because that’s one less thing I can do for myself.

I use to be the rock, the one everyone looked to to help them out. Now I’m the one that needs that help and yet I’m still being looked at as that rock and they fail to see that it’s been broken into little pieces. No matter how many time I try to explain this, how many times I’ve broken this down, it seems to go through one ear and out the next as I’m looked at expectantly, once again, to attend to even simple little tasks that can be handled themselves.

Talking is exhausting! It’s actually easier on me to type than to have a conversation. I’m not mad at you, ignoring you, or even rude. It simply exhausts me to carry on a conversation and try to pay attention to what is said to me. Please keep it short! When you drag on while telling a story, inside I’m bouncing up and down screaming hurry up and get to the point!!

I’m not trying to be rude, I just can’t pay attention that long and I’m feeling restless and just want to go lay back down. And when you cut me off to ‘hurry up and say something before you forget,’ you’ve just made me forget what I was trying to say in the first place.

Yes, there are days that I can carry on a conversation and feel normal for a while but please pay attention to the signs! If not, don’t be upset when I tell you I’m not feeling chatty at the moment. My processor is running slow right now and my fatigue and pain are at the forefront of my mind.

I HATE to cut someone off and make them feel unimportant or that I don’t care or want to hear you. I also want to be heard and know that you KNOW ME and can see when I’m tired and distracted and not feeling up to being warm and cozy at the moment. Understanding this shows that you truly understand ME and that you care about how I’m feeling.

If you know that I’m ill and you tell me that you don’t want to put any more work on my shoulders because you understand, then please clean up after yourself and not leave a HUGE pile of stuff for me to clean up after you when you leave. That’s really really insulting. (still holding a grudge).

Every little thing you can do to help me, truly helps me. Even the simple things. I do notice, you don’t have to point it out to me. I’m sorry I’m not vocal in praising you all the time.

I know it doesn’t seem like a big deal to you, but when you want something done, please don’t expect me to do it for you especially if it’s not even my task and it’s something you can do yourself.

If your doing a task so I don’t have to, please don’t have me walk you through each little step. At this point, I might as well have done it myself. It cost me energy and takes off one of my own tasks on my list when I have to get up and stand there and speak and use my brain. I wish you understood this!

Living with a broken battery is tough enough. Add cracks, exposed wires, faulty apps, and that’s my life with a chronic illness. I rather it not be but that’s the cards I was dealt so I have to make the best of it and pace and get help and worry only about the big things while trying not to sweat the small ones.

Every little thing you take off my plate, helps me. Every little task you add to my plate takes a little more of the remaining battery life I have left for the day. Please think about this before seeking my help especially if it’s something you truly can do yourself.

Please be mindful that I might not be chatty and talking does take a big chunk of my energy bank. Keep it simple and to the point unless you know I’m having a good day and am engaging with you. Please pay attention to those signs which shows me you listen and you care. Living with a chronic illness is a daily struggle, it’s not something we can just get over or plan for.

The List…

Diagnoses awaiting Genetic Testing suspected:

Hypokelemic periodic paralysis

Ehlers-Danlos (Or other heritable connective tissue disease)

Dystonia

Episodic ataxia (type 2(?))

I am a Zebra. Even when having a full on flare up of Ulcerative Colitis before I was diagnosed, my blood was normal. Full inflammation throughout my body and not one sign of it in my blood. Even my CT scan was completely normal when it shouldn’t have been. I am a Zebra. Inflammation does not show up in my blood. My Rheumatoid factors are completely normal other than a high IgA which I was told, meant nothing.

How does one prove they are ill when their blood is completely normal? So many times I’ve been completely dismissed because of this. Even after explaining that I am a Zebra.

Another very odd quirk is that I have bone inflammation on both femur necks along with bilateral labral tears. Typically, when one has arthritis, the cartilage is damaged. This is seen on xray and arthritis is diagnosed. My cartilage is completely normal. Excellent spacing. And yet my bones are inflamed. I have not one doctor explaining why and what this means. I only know the pain is simply excruciating. My SI joints show degeneration so arthritis is there. Does that explain the bone marrow inflammation in my hips? My hips, often, feel shattered. Completely and utterly shattered, the pain is so intense. And yet, my blood is completely normal. Having Ulcerative colitis, a theory could be seronegative inflammatory arthritis, but only my neck and SI joints are arthritic. No doctor has xrayed my knees in years. They feel like bone on bone in addition to the instability my braces are for.

So I have spent the last several years in so much pain, I’m no longer living but simply existing as my life has been taken from me. My ability to function is gone, except the odd good day that pops up and reminds me of what I’m missing out on. I long for the years I simply battled flare ups and migraines that took chunks of my life each month rather than the day in and day out suffering I deal with now. Though in 2006 and 2007, I spent those two years in a severe POTS flare up with fibro and ME/CFS but not the severe chronic pain like it is now as it was episodic in nature back then.

Waiting on genetic testing is frustrating and time consuming. Even though I’ve waiting 19 plus years wondering what all is going on with me and waiting a few more weeks is really nothing, considering, I just want to know. I just PRAY it’s in my genes so I have confirmation once and for all. I’m 100% that a connective tissue disease is at the root of a lot of my suffering, but not all of them will show up in the genes yet. It’s not heavily researched like other conditions. They’re working on it though.

Dealing with so many systemic illnesses without a definitive diagnosis beyond what I’m diagnosed with make medical care extremely difficult as those conditions are misunderstood and not well taught in medical school. A lot of doctors roll their eyes at the conditions and still think, “It’s all in their heads!” Even though science is showing, it’s physiological.

I’m the Pans positive patient. I never wanted that. The bias in the medical community is mind boggling, even though they are suppose to be taught to squash that bias and do no harm. They are, after all, still ‘practicing’.


Diagnosed Conditions not Visible
:

ME/CFS

Fibromyalgia

Chronic daily headaches

Anxiety


Diagnosed Conditions that are visibly diagnosed
:

Ulcerative Colitis

Interstitial Cystitis with petechia

Migraines

Emphasema

Lung nodules

Brain lesions

GERD with reflux and episodic blood in the stomach

Stricture in esophagus

Bone inflammation in femoral necks bilateral

Bone Marrow inflammation in hip bones

Swollen lymph nodes in groin, upper leg, behind neck (Over one year now)

Enlarged prolapsed uterus

Rectocele- repaired

Hiatal hernia- repaired- now sliding

Appendectomy- necrotic

Gall bladder removed

Aorta at upper limits of normal

Strabismus with excessive floaters and astigmatisms

Tendinitis multiple sites

Kephosis and loradosis “Flat back”

Variable blood pressure with spikes and drops

Tachycardia (POTS) with skipped beats, PVC’s and others

Mitral Valve Prolapse with regurgitation that is progressed

Prior prolapse of other valves with regurgitation self corrected

SI joint that was out of place and pushed back by Physical therapist

Glut muscles that have difficulty activating along with a leg muscle

Repetition fatigue in limbs that is measurable (little exertion)

Joints that are loose

Receding gums with multiple skin grafts that mostly failed

Bicornate uterus and tipped bladder

Short pinky toe

Very narrow wrists can wrap fingers around

Extremely narrow rib cage

Forward tilted hip with one side dropped

Often low potassium, sodium, Vit D, Calcium (once), ferritin

petechia spots on skin

Episodes of bleeding- IV sites, giving birth, spitting blood

Blood clot in umbilical cord (we got lucky)

Both children had very short cords, small placenta and wrapped around neck

Low side of normal bone density in hips

Stretch marks that are excessive for weight and atrophic

Bartholin gland issues- multiple surgeries

Muscle spasms

Fasiculations

Body Twitches

And More….

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.