Category Archives: EDS & Hypermobility Spectrum

When Reality Hits you in the face

By: JD Author, Reporter-Journalist

I try to always look at the positive in life, be thankful for everything I have because so many people have so little.  Although I have not always made the wisest of choices when it comes to what is best medically, nutritionally and physically for living with Hypermobility Spectrum Disorder, Ehlers-Danlos and Progressive Muscular Atrophy, yet the effort is there.  Focusing on the good things in my life has been a goal of mine, but today.. all positive fled my thoughts and I found myself feeling broken and alone.

I have stuck with six weeks of physical therapy despite the frequent visits to the hospital for interventional medications to slow the severe pain in my head that affects my optic nerves and causes me to lose my sight.  But today, September 26,2017, was totally different.  It was evaluation day.  The therapist, who is polite, has a great sense of humor, and jokes with me the whole time I fight through pain and do my therapy, actually had me hating him when I left.

I know that sounds quite odd for me to not just brush things off and joke around or look at the funnier side of my medical craziness, but this time, I was not laughing on the inside.  I was screaming, crying and just wanting to give up.  I fight hard to stay positive, but the only thing I could see positive was being able to flee Knapp Physical Therapy, and try not to lose my composure in the process.  Why the drastic change?

Well anyone with a medical condition or disease like Ehlers-Danlos, Hypermobility Spectrum, or ACM (my tri-fecta), you know there is no cure, and it just progresses at its will.  So today I sat there as David, my therapist did my strength and agility testing, and informs me that I totally suck.  Of course those are not his words, but they might as well been, because that’s how I heard it.  He tells me that I was a 0/5 in some things I should be able to do, but couldn’t.

The only thing that ran through my mind was

                   just a few years back this “not agile, weak” body rode 160 miles in a bike marathon for the Multiple Sclerosis Foundation,

and this ass is telling me that I am basically a human noodle??

Do you know how hard it is to chuckle lightly and smile when you really want to just scream and beat the crap out of someone, something, anything?  You’re so angry.  You know you have been trying and despite the pain, you do your best, and it means nothing??   That is me, this is my day, today I felt like, and still feel like I am an epic failure. I know I am not, but knowing it doesn’t change the feeling.

Of course as soon as my appointment was over, David says, “we will start strengthening as much as we can what muscles still work.  I agree with him just to be complacent for the moment.

My mind is now in the fight or flight mode and the flight is at 90%.  I am fighting hard not to just give up.  I am so tired of trying and getting nowhere.  I am battling that voice in my head that is telling me it is time to quit, I am done!  I have loads of family and friends who always tell me they support me and to fight.  Right about now I want to yell at them too!  Because how would they even understand what I am going through!  They don’t walk in my shoes.  about now I almost want to tell then to just shut  up and go away.

I think I just need a good long nights sleep, then I can reevaluate how I feel tomorrow.  Perhaps tomorrow my “get up and go” will be side by side with me, walking with me, motivating me.  But for today, I have no idea where it went.

I need to wake up tomorrow and hopefully find my strength, because that is all I have.

©Copyright protected 2017: NWU Local 1981

©IAPP Author/Journalist Press ID # 1007490467

Plainly Pathetic Platitudes

By: JD Author, Reporter-Journalist

The same boiling water that softens a potato, hardens the egg.

It’s about what you’re made of, not the circumstance.

There are not enough fingers and toes in my neighborhood to count the number of times I have heard someone tell me “you’re strong, you will get through this”.

For the most part, I like to think that I am a strong person.  I may not always have everything in my life looking “peachy”, but I try my best to look like I have my crap together.  I strive to have the appearance of emotional stability and well being both physically and mentally. Many of my friends and acquaintances consider me to be the rock that they can lean on when they need help.  If only they could see how many times this “rock” starts to crumble, and has to be plastered back together repeatedly.

Life happens.  When things do not go as we planned or hoped, your shortcomings can hit you pretty hard. It can knock the wind clean out of you and you’re left with the feeling of being in a vacuum tunnel and someone is sucking all the oxygen out.  You feel like you can barely breathe or move. You’re left sitting or laying there and the feeling of helplessness sets in.

When that happens, it’s a horrible feeling.  Even “strong” people need help getting back up. Unfortunately, instead of help, we’re often met with a series of skeptics, only to be followed with the platitudes:

“Give it some time”

“You know you’ll get through this.”

“You look okay, so suck it up.”

“You’re so strong.”

I truly think that a few of my friends who say these things really believe they are helping me in some way (good thing I do have some friends that know better and keep their mouths shut because they are in the same situations).  Maybe they see it as a compliment. They offer their few words of encouragement, that almost feel as painful as a throat-punch and call it good. In reality, what they are really doing is absolving themselves of actually helping.  Sure I may seem a bit unappreciative, but I am not.  I do cherish the occasional words of understanding, caring and concern that come my way.  But to repeatedly and shallowly “admire” me for the “strength”, they think I have, they could replace it with a more meaningful phrase.

Replace the “You’ll be fine”(because I will NEVER be “fine”) with; “I will keep you in my thoughts” because that actually sounds a bit more caring. Don’t ask me if I want to talk about it, because usually when the conversation starts, I will get to hear all your comparisons to my plight, and you are clueless.

Instead of telling me “You know you’ll get through this” try “I can see your pain is really raw right now. I’m sorry you’re going through this. What can I do to help you hurt a little less today?” And then do it, without coaxing with a crowbar.

Please don’t remind me EVER day that you see me as a strong person.  It’s true that you may see me that way, but what they can’t see is that in all reality, I am not. I’m “strong” because I have to be. No one is there to pick me up when I shatter, and I have learned this the hard way. I have to do it myself, but I don’t want to.

The many idle hours when my body does not cooperate but my mind still works has made me a great problem solver. Because of this, I’ve spent my entire life helping others and picking up the pieces for other people. It would be absolutely amazing to have someone do that for me more often. Someone who can anticipate what I need and meet that need without having to be asked.

Being a strong woman, or appearing to be, is hard enough. Being a strong HSD/ACM/EDS/Aspie woman is even harder. I already live in a neurotypical world that is pretty judgmental and mean to anyone who appears different. In order to be successful in this world, I have to emulate neurotypical people with life-altering medical conditions and follow their social rules. Sometimes, it is just exhausting. The small talk. The constant fake smiling because everyone is ohh so happy and expect you to be as you grit your teeth and spew the lie “I am fine”, when asked. It can be overwhelming at times.  But it must be done.  It beats listening to comparisons, contrasts and likenesses to Aunt Bertha’s issues or cousin Ralph’s medical history, which is similar.

So please try real hard to remember when your friends tell you they are hurting or if they share something they are truly struggling with, try not to dismiss their pain with a cliché – even if they are “strong.”

©Copyright protected 2017: NWU Local 1981

©IAPP Author/Journalist Press ID # 1007490467