It’s not that I lack motivation, my “vehicle” just isn’t working.

Would you just look at me?  I look happy, like I’m having fun right?  I was having fun! It was my 2nd time out with some of the girls I work with, not out out, we went to do a presentation for work. I had high hopes. I was out of the house, dressed cute, hanging with my new co-workers, laughing, eating, working……and wearing high-heels! It was so much fun, until it wasn’t. I had to go on a pain-cation for a week after this.

Life with Ehlers Danlos, Spinal Stenosis, arthritis in my back and knees, at my neck fused makes these types of events a major deal for me.  First, I need to plan my week in a way that allows me to conserve my energy before an event like this.  Now, this was a simple 4 hour event, not long at all but long enough.  When I know I’ll be doing something that has me out of the house, unable to lay down or even sit in  a good chair, I have to plan ahead. I won’t do any errands, laundry, heavy housework, or long walks at least 2 days before something like this. I also have to plan out the day of the event and 3 days to a week after.Why? Let me shine some light on what it’s like.

When you have what I have, EDS, the energy it takes for me to do anything is 3x’s the amount of what the average person exerts.  So even though I’m 48 here and the ladies I was with were older, I was shaking in pain by the time we headed home.

Not having popper seating, meaning if the seats are hard or have little back support I’m dying.  The hard seats feel like I jumped out of a 3 story building and landed on my tailbone.  Add on the lack of back support and the fusion in my lower back, my neck and all the herniated disks and spinal stenosis in between and I feel like I am being tortured. The back starts spasming, the neck locks up, the migraines start and the fatigue kicks in.  Who would’ve thought it would require so much energy just to sit in a chair and smile like nothing is going on.  All the while the other girls are laughing, taking selfies, talking, being normal. They don’t see me constantly trying to adjust my position attempting to get comfortable.  They don’t understand that as the pain rises I am more sensitive to sound, and getting irritated by how loud they are. Even if I told them they wouldn’t understand, how could they?

I try to keep all of these details to myself, nobody wants to hear someone whine.  The only reason I am writing is to shine a light on life with EDS, and hopefully to bring encouragement to the 1 person whose reading this.  THe worst feeling is the feeling that you’re alone , there’s hope and this shit is real.

After the presentation, and no enrollments we packed it up and convened at a little strip mall for bundt cakes and french fries. I had already taken 3 pain meds by this time and knew I didn’t have much time left before I needed to lay down, but, Bundt cake.  Because of the covid we really had very few options when it came to seating.  We ended up on a very hard, no give, no cushion, no neck support bench. I bet when they walk up to the seating area they only consider where the sun is beating down.  Someone with EDS of course needs to consider the sun because we are affected by that  in different ways, we also have to consider how much energy this seat is going to require, and the level of pain during and after, as well as how long we’ll be able to tolerate it. There’s a lot to think about when we go on outings.

We sat down, I was looking through the window of the place I would eventually order french fries from.  I saw cushioned booths and chairs.  With hope in my heart, and my charm turned up to 10 I walked in and asked if the seating inside was available.  I practically cried when I was told it was not available. I felt my mouth contort, my eyes water as I tried to accept my fate. I hate when this happens because I know people look at me like I have emotional issues to be upset over not being allowed to sit on those cushioned seats with neck support.  They have no idea how much I am going to suffer later.

Now, you could say I don’t HAVE to sit there, I could have gone home and you’d be right.  But the other side of life with EDS is loneliness.  Add on the covid quarantine and an extra 30 minutes to have some human interaction seemed worth spending the rest of the day laying in bed crying from the throbbing pain in my joints.  This is what I consider, Living it up.

I was fortunate that my recovery time for this event was only 4-5 days.  There’s been times when it’s taken over a week to recover from an activity.  Because of this I often decline outings or when I do accept I may look like I’m not enjoying myself.  It’s not about if I’m enjoying myself, my mind is busy calculating what I’ve just mentioned above.

This is why I say that I and many other EDS warriors are not lacking motivation.  Trust me when I say we absolutely want to do everything and then some that an able body does, but our “vehicle” isn’t working like those that can.  We battle with what we want to do and what we are capable of doing.  Add to it that most of us look like we are healthy enough or fit enough to do whatever it is everyone else can easily do, but we can’t.  This means we will either push ourselves past our limitations which causes flare ups.  However, when we do ask for assistance, say at the grocery store, we get the “up & down” look with perhaps an eye roll or worse a comment that we look fine, what do we need help for?  Or maybe it’s just me that brings these expressions out of people?  Depending on my pain level my response varies from looking at them like, “do you have a problem”? Or, tears, or a full explanation of what EDS is and all the surgeries and injuries I am dealing with.  I tell myself I don’t care, and most of the time I don’t, but I think sometimes I am reminded of how strong and athletic I once was and look at me now kind of thing. 

Learning through therapy that it’s not my fault, and other people shouldn’t look at me like it’s my fault that I am blessed with EDS. I will have good days and bad and I need to work within my limitations of what my body is capable of doing right now and not what I once was able to do, is definitely the most difficult thing to do.  But I am learning how to not give in or give up but instead to work within my unique boundaries and not feel guilty about it.

Now I am saying to you who live with EDS or know someone with EDS that there is nothing to feel guilty about.  You didn’t choose this and I know you aren’t faking it, exaggerating, or milking anything.  Be kinder to yourself, stop living up to other people’s expectations of you.  Above all stop feeling GUILTY, just stop, it won’t help.

Anyway, I hope this brought some light to what life with Ehlers Danlos is as well as encouragement to my fellow zebras.

Until next time, be kind to yourself.

Xoxoxo Mai Beautiful

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