When the Ability to Control My Day Slips Through My Subluxated Fingers

Hey, there. I’m Dani, and I like control.

I’ve always been one to make sure I know at least a little of what’s going on schedule-wise in my life. I like knowing what the day holds for me and being aware of what’s coming up in the near future. I pride myself on balancing my personal calendar as well as my family’s. We may be a family of three adults, but you’d be surprised what a color-coded masterpiece each month can look like once we all get our events added to the collective calendar.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

If it wasn’t already painfully obvious, I’m at the very least a tad type-A. Since my diagnosis of Ehlers-Danlos syndrome (EDS), I’ve had to come to grips with the fact that I simply no longer have the ultimate say-so in my daily life.

My Ehlers-Danlos syndrome, type 3, doesn’t exactly clue me in when it comes to flares. The gall, honestly – I know. It can be mind-bogglingly frustrating to roll out of bed in the morning only to find that the day’s plans are either changed or completely nullified simply because a rib (ribs plural most of the time for me), clavicle or literally any other joint in my body decides to subluxate or even dislocate.

Each subluxation brings with it a host of different physical chain reaction if not appropriately taken care of. Some of these reactions are more serious than others, which requires me to sometimes play triage if the “damage” is worse in some joints over others. My mental processes usually go as follows upon such a discovery:

1. Denial

“Surely this isn’t happening. I can just do a few shoulder rolls and get everything situated in nicely.”

Yeah, we all know how this will go.

2. Painful Wake-Up Call

Usually this call comes tearing in as some kind of sharp nerve pain while I’m still hanging out in the denial phase.

For example, when a sharp pain is felt, “Yep, OK. This is a real thing that’s happening.”

3. Prevent Downward Spiral

I have a bend toward putting myself into a downward mental spiral (I’m working on it, I promise) and often these EDS not-so-nice surprises can help set off one of these spirals. I have to remind myself that this is simply the nature of my illness and move forward from that point. It’s an uphill battle some days, but I’m learning to treasure my inner strength.

4. Breathing

Seems simple enough, but I have to remind myself to get centered, do a body scan through meditation and figure out exactly what and how many things aren’t in their proper place. Usually when I do this, I find more than one area that needs some T.L.C.

5. Self-Adjustment

This isn’t always recommended depending on your personal stage of EDS 3, so I can’t recommend this step for everyone. Personally, this can look like anything from gentle yoga stretching to literally grabbing my clavicle and moving it over, back into its proper place. Either way, I do my best to self-adjust as gently as possible though occasionally force is necessary regardless of the pain being experienced.

6. Letting Someone Help

Sometimes I simply can’t adjust myself. Sometimes the bone or joint won’t cooperate, or things are just too far “gone” for me to amend on my own. It’s at this point that I have to invite someone else’s help – be it massage therapist or chiropractor – to get to those hard-to-reach places or work on that uber-tight muscle.

At this point, I’m still actively receiving weekly chiropractic care regardless of what goes awry (think of it as a weekly vehicle tune-up) as well as a gentle-style massage treatment once a month. Both of these particular specialist treatments have taken me awhile to mentally accept.

When one is 23, one feels as though they should be resilient enough to take care of themselves and not necessitate monthly massages in order to live functionally, but such is my life at the present moment. Daily self-acceptance is difficult, but entirely doable with practice – like a great many other things in life.

Maybe you’re like me. Maybe you fight for control in your life, only to watch it slip through your subluxated fingers. I’m no quitter, but if you’ll allow me to speak frankly…just give up. Just buckle in for the ride, accept the help you need along the way, and do your best to adapt. And on those days where self-acceptance seems the most impossible task, remember you’re not alone.

We’re all fighting uphill together.

Getty Image by Angela Kotsell